Re: Thank you for the welcome

[Guest guest]

, a, our list owner and lead moderator, has created an

excellent site where the answers to your questions about RA and the

drugs used to treat it can be found:

http://rheumatoid.arthritis.freehosting.net

If you're wondering about your diagnosis, perhaps you could seek another

opinion from a second rheumatologist.

If both agree that you have RA, and if you decide after learning about

the disease that the diagnosis makes sense, beginning treatment

immediately is in your best interest.

The risks of untreated RA far outweigh the risks of DMARD therapy.

Methotrexate has been used for decades and, in terms of effectiveness,

safety, and cost, is one of the best DMARDs available.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Thank you for the welcome

> Thank you to all for the welcome. I don't know much about the

> medications. So excuse my ignorance about all the names everyone is

> taking. I tried Arava and it really did nothing. My doc wants me to

> start on Methotrexate injections and enbrel injections. I have not

> heard many good things about methotrexate, so I don't think I will

> take this drug. My insurance does not pay for either of these

> medications anyway. They will pay for insulin but not for these

> meds. They claim they are too expensive.

>

> Enbrel I have mixed feelings about. My pain is not too bad. I have

> good and bad days. I am not even sure this doctor is correct with my

> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> started giving me lots of trouble then my doc claimed it might be RA

> cause some level was real high. He said it has something to do with

> swelling. Anyway...its all mumbo jumbo to me.

>

> Besides those drugs, he also gave me a drug called bextra and

> prednisone. I have not taken either. I was told prednisone will

> ruin your bones and make you fat, hyper and always hungry. I do not

> want any drug that makes me hungry or fat!!!!

>

> I take aleve for pain and benadryl if I need to sleep. I hate taking

> any sort of medication.

>

> As I read through the old post so many here are on tons of drugs.

> Wow how do you do it??? How do you afford it????I do not want to

> become dependent on a ton of meds like you see these old ladies at

> the pharmacy for a grocery sack of meds!!!

>

> I don't know anyone else with RA nor does anyone in my family have it!

>

> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> have no clue why my doc did this. He said he needed to see

> something. If he keeps xraying me like this I am going to start

> glowing in the dark! He also seems to like to order a ton of blood

> tests. I would mind if the lab techs didn't stick me 3-4 times to

> get blood. The last time I went I told them they get one try and

> thats it. If you miss, too bad you get no blood. Do you have blood

> tests all the time?

>

> This is just so time consuming and expensive. I hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

,

First of all, seek a second opinion on your diagnosis if you are not

convinced of the RA or have doubts about your rheumatologist. An

accurate diagnosis of RA is not easy because there is no one test.

There are many different things in your blood that can point to RA,

but the rheumy must also observe symptoms over a period of time and

see how your symptoms react to typical RA drugs. My diagnosis took 9

months although we all knew from the get go it was 99% RA.

Here is the Jennie-low-down on the drugs:

Drugs for treatment of RA are critical. If left untreated, RA in

most cases will lead to joint destruction, deformity and permenant

disability, although it does depend on the severity of your disease.

Some people can go into remission, but that is the case for the

majority of us. The drugs we have today are amazing in that they give

an RA patient the chance at a normal life. Most consider Enbrel and

other biologicals (Remicade and Humira) to be miracle drugs - as

close as we have to a cure. That is because they slow the

progression of this disesase and work really well without many side

effects.

Prednisone - the side effects of this drug depend on the amount you

take and how long you plan to be on it. Yes, it can lead to bone

loss. But there are things you can do to counteract that. Yes, it

can increase your appetite and make you gain weight, but it did not

do that for me. I am on a very low dose. How much did your rheumy

prescribe?

Methotrexate - this is a very well tolerated drug for most people.

The side effects are not severe, although your doctor does have to

monitor your liver function, that does not mean your liver will be

affected. I have had no side effects of this drug, other than my

hair thinning a little. But again, there are things you can do to

counteract the side effects like taking prescription strength folic

acid.

Biologicals - these are recent drugs and they block our bodies from

making too much of a certain protein (TNF) because people with RA

over produce that protein. The name brands are Enbrel, Remicade and

Humira. I take Humira and have no side effects from it at all. I

know it's effectiveness is helped by the fact I also take mtx.

Overall - the decision to take these drugs should be made jointly by

you and your doctor. The risks and possible side effects should be

weighed against what you will suffer with if you don't take them.

There are many more risks, in my opinion, to leaving RA untreated.

RA is different in everyone, but I can tell you if I was not on my RA

drugs I would not be out of bed before noon on any day. My whole

body just freezes up. It wasn't like that in the beginning, but this

is a progressive disease and it gets worse over time, sometimes even

with the drugs. It does require consisent monitoring because of the

progressiveness, because you have to change medications or dosages as

the disease changes it's course. I may be dependant on these drugs,

I don't care because it means I can function every day, take care of

my daughter, go to work and live my life.

If your rheumy is prescribing something and you are not going to take

it, you have to tell him. He cannot properly manage your illness if

you are not communicating to him your concerns and telling him you

have not decided to take this drug or that. For example, if he

prescribes Enbrel and methotrexate, and you take the Enbrel but not

the mtx, you should both expect the Enbrel to be less effective in

treating the RA. If he doesn't know you didn't take the mtx, and the

Enbrel doesn't work as well, he won't know the lack of mtx could be a

reason. Most insurance does pay for these drugs, but only after a

diagnosis of RA. Talk to your doctor about your insurance. He will

have experience with getting these drugs covered. I don't think mtx

is that expensive, but I take Humira and it's $1200 per month (my

insurance co-pay is $20 per month).

Lastly, this is a complicated disease, especially for someone who has

never heard of it before. My advice is to get a second opinion and

be comfortable that you do in fact have RA. Next, you must educate

yourself about RA if you have it. Doing so will turn the mumbo jumbo

you are hearing from your doctor into knowledge that will help ensure

you get the best possible treatment for this - and most importantly

that you are comfortable with the treatment you receive.

We are all here to help you make sense of this. Please keep asking

us questions, the men and women on this board have lots of advice and

perspective to share about this disease.

Jennie

> Thank you to all for the welcome. I don't know much about the

> medications. So excuse my ignorance about all the names everyone

is

> taking. I tried Arava and it really did nothing. My doc wants me

to

> start on Methotrexate injections and enbrel injections. I have not

> heard many good things about methotrexate, so I don't think I will

> take this drug. My insurance does not pay for either of these

> medications anyway. They will pay for insulin but not for these

> meds. They claim they are too expensive.

>

> Enbrel I have mixed feelings about. My pain is not too bad. I

have

> good and bad days. I am not even sure this doctor is correct with

my

> diagnosis. Is there a test for RA? I fell and hurt my wrist and

it

> started giving me lots of trouble then my doc claimed it might be

RA

> cause some level was real high. He said it has something to do

with

> swelling. Anyway...its all mumbo jumbo to me.

>

> Besides those drugs, he also gave me a drug called bextra and

> prednisone. I have not taken either. I was told prednisone will

> ruin your bones and make you fat, hyper and always hungry. I do

not

> want any drug that makes me hungry or fat!!!!

>

> I take aleve for pain and benadryl if I need to sleep. I hate

taking

> any sort of medication.

>

> As I read through the old post so many here are on tons of drugs.

> Wow how do you do it??? How do you afford it????I do not want to

> become dependent on a ton of meds like you see these old ladies at

> the pharmacy for a grocery sack of meds!!!

>

> I don't know anyone else with RA nor does anyone in my family have

it!

>

> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> have no clue why my doc did this. He said he needed to see

> something. If he keeps xraying me like this I am going to start

> glowing in the dark! He also seems to like to order a ton of blood

> tests. I would mind if the lab techs didn't stick me 3-4 times to

> get blood. The last time I went I told them they get one try and

> thats it. If you miss, too bad you get no blood. Do you have

blood

> tests all the time?

>

> This is just so time consuming and expensive. I hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I

just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit

and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

,

Well, yours is an easy name to remember, and you spell it the right

way too! I'm not a big poster, more of a reader, but your post

struck a cord. I completely understand where you are coming from

with the fear of the medications and the frustration wit your doctors

visits.

I am 29, very active with sports (played soccer from age 6 up until

last September), have a very stressful career that requires a lot of

my time and energy, was just about to start a family with my husband

and HATE taking medications and seeing doctors. When I first

experienced the joint pain it was one joint at a time, intense pain

for one or two days and then gone. A few days later it would hurt

somewhere else. I could always explain the pain because of some

soccer injury but then one night they all hurt at the same time and I

couldn't move from the couch and was very scared. I began to see my

family doctor who put me on a dos-pak of steroids (a high dose on day

one that tapers down to nothing after a week). That made the pain go

away but after the third day, when the dose was pretty low, the pain

came back. She switched me to 40mg of the prednisone and started

doing LOTs of testing on me. Nothing was conclusive and my pain

continued so she sent me to a rheumatologist. That's when the big

frustrations began.

The problem with autoimmune diseases, especially RA, is that they

still don't understand exactly where they come from or how to

diagnose them. There is something called an RA factor that can help

with the diagnosis if it is above a certain number. Mine was still

low so they couldn't peg it from the beginning. It took five months

and multiple trips to the rheumatologist to finally diagnose me.

During those months I was extremely frustrated because it seemed like

every time I went to the rheumy, he asked the same questions, didn't

have much of an explanation for me and my condition wasn't getting

any better. The thing is, they just have to watch you for multiple

months before they can really know what you have. The whole time I

was on a high dose of the prednisone and I did have some issues with

the side effects. I wasn't crazy moody or hungry but I did get puffy

and gain a lot of weight which was almost more frustrating to me than

the disease itself. The good news is that it was helping with my

pain and making me functional again. Also, once they officially

diagnosed me they were able to put me on one of the older drugs,

Sulfasalazine, and gradually lower my prednisone. After three to six

months the sulfasalazine started working and I have been able to

lower my prednisone dose to 7mg a day (down from 40). My face and

body are no longer puffy, I have lost about 10 lbs. (all of the

weight I gained) and after almost a year of all of this I am coming

to terms with what I have and the fact that I will be able to live a

somewhat normal life, even with all my meds (yuck!) and my doctors

appointments. I am not yet playing soccer again but I am at least

able to walk daily and before my latest flare with my headaches I was

jogging a little on the treadmill (used to run 5 miles 4 x week).

The important thing that I wanted to tell you is that apparently,

with RA a lot of the joint damage can be done in the first two years

of the disease. So eventhough you don't like taking medications or

going to the doctor and having your blood drawn, the decision to not

pursue these options may be one that you regret for the rest of your

life. Also, taking blood and running tests is one of their only

weapons to find out what is going on with you. The Xrays help them

look for joint damage and also help with the diagnosis. Open

communication with your doctor is important too. THey can't know

everything that is happening inside our heads or our bodies if you

don't tell them and can't find a solution that works with your

lifestyle if you don't communicate your feelings about the meds. All

of these things are frustrating but essential. If I new how much

better I could feel today I wouldn't have been so frustrated 11

months ago when I was going through the same thing you are doig now.

That being said, everyone is different and I'm not a doctor and

definitely not a medical research expert on this subject yet like

a and so I don't know if you do have RA but I do think you

should get a second opinion if you are not comfortable with what your

current doctor.

Hope this helps a little. If you want, feel free to email me

directly. Good luck.

Cat

> Thank you to all for the welcome. I don't know much about the

> medications. ...> This is just so time consuming and expensive. I

hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I

just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit

and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

Cat,

Do you have side effects from the sulphur drug? I think I would rather try

that first before any of the harder drugs e.g. mtx, enbrel. I am taking

antibiotics now and they work well most of the time. I've had a flare-up

and thought I should switch to something or add something.

Thanks,

ette

>

[Guest guest]

Thank you for the website. I went to it. Tons of info. Very overwhelming. I

have something that will last forvever like AIDS!!!! Oh my I am not happy about

this. I do not want this. I hope this doctor is wrong.

what is DMARDS? Is that the name of a drug? I have never heard of that. The

doc called and ordered the Methotrexate. I told him I was not taking it until

he knew for sure RA is what I have. He was not happy. Said I needed to talk to

nurse to schedule an appnt immediately for another consult with him. I told him

I would think about it and get back to him. I also called he pharmacy and my

insurance will not pay for it anyway. Plus he prescribed some other medications

as well which I have no clue why? He said once I pick them up to call the

office so the nurse can teach me to give the shots. NO way am I giving myself

shots.

His nurse has been calling all day, my house, cell phone and my job. I am

refusing her calls until I make a decision. I just send it all to voice mail.

She keeps saying its so " urgent " . I think these people just want me to waste a

bunch of money!!!!

The methotrexate has some nasty warnings about liver failure, and a bunch of

nasty side effects of taking chemotherapy. Even says I can get cancer!!!! No

way am I taking this stuff. This is some super strong poison. My grandmother

had cancer and was on chemotherapy and it was horrible!!!! NO WAY!!! This is

not for me.

I don't know how you guys let your docs make you take this stuff. This is some

bad stuff!!! My husband says NO WAY, this doc has to know for sure before he

wants me taking this poison.

<Matsumura_Clan@...> wrote:

, a, our list owner and lead moderator, has created an

excellent site where the answers to your questions about RA and the

drugs used to treat it can be found:

http://rheumatoid.arthritis.freehosting.net

If you're wondering about your diagnosis, perhaps you could seek another

opinion from a second rheumatologist.

If both agree that you have RA, and if you decide after learning about

the disease that the diagnosis makes sense, beginning treatment

immediately is in your best interest.

The risks of untreated RA far outweigh the risks of DMARD therapy.

Methotrexate has been used for decades and, in terms of effectiveness,

safety, and cost, is one of the best DMARDs available.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Thank you for the welcome

> Thank you to all for the welcome. I don't know much about the

> medications. So excuse my ignorance about all the names everyone is

> taking. I tried Arava and it really did nothing. My doc wants me to

> start on Methotrexate injections and enbrel injections. I have not

> heard many good things about methotrexate, so I don't think I will

> take this drug. My insurance does not pay for either of these

> medications anyway. They will pay for insulin but not for these

> meds. They claim they are too expensive.

>

> Enbrel I have mixed feelings about. My pain is not too bad. I have

> good and bad days. I am not even sure this doctor is correct with my

> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> started giving me lots of trouble then my doc claimed it might be RA

> cause some level was real high. He said it has something to do with

> swelling. Anyway...its all mumbo jumbo to me.

>

> Besides those drugs, he also gave me a drug called bextra and

> prednisone. I have not taken either. I was told prednisone will

> ruin your bones and make you fat, hyper and always hungry. I do not

> want any drug that makes me hungry or fat!!!!

>

> I take aleve for pain and benadryl if I need to sleep. I hate taking

> any sort of medication.

>

> As I read through the old post so many here are on tons of drugs.

> Wow how do you do it??? How do you afford it????I do not want to

> become dependent on a ton of meds like you see these old ladies at

> the pharmacy for a grocery sack of meds!!!

>

> I don't know anyone else with RA nor does anyone in my family have it!

>

> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> have no clue why my doc did this. He said he needed to see

> something. If he keeps xraying me like this I am going to start

> glowing in the dark! He also seems to like to order a ton of blood

> tests. I would mind if the lab techs didn't stick me 3-4 times to

> get blood. The last time I went I told them they get one try and

> thats it. If you miss, too bad you get no blood. Do you have blood

> tests all the time?

>

> This is just so time consuming and expensive. I hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

Jennie G <xponder70@...> wrote:

,

First of all, seek a second opinion on your diagnosis if you are not

convinced of the RA or have doubts about your rheumatologist. An

accurate diagnosis of RA is not easy because there is no one test.

There are many different things in your blood that can point to RA,

but the rheumy must also observe symptoms over a period of time and

see how your symptoms react to typical RA drugs. My diagnosis took 9

months although we all knew from the get go it was 99% RA.

Here is the Jennie-low-down on the drugs:

Drugs for treatment of RA are critical. If left untreated, RA in

most cases will lead to joint destruction, deformity and permenant

disability, although it does depend on the severity of your disease.

Some people can go into remission, but that is the case for the

majority of us. The drugs we have today are amazing in that they give

an RA patient the chance at a normal life. Most consider Enbrel and

other biologicals (Remicade and Humira) to be miracle drugs - as

close as we have to a cure. That is because they slow the

progression of this disesase and work really well without many side

effects.

I am hoping my doctor is wrong or I go into remission or it just goes away

completely. I looked at the drug enbrel. My insurance does not pay for

injectable drugs at all. They will pay for insulin and that is it. So that is

not an option for me. Plus the thought of sticking myself grosses me out so

this is not an option that I would even consider.

As far as being normal I am normal!!! I had a bit of a fall and a wrist that

seemed to take forever to heal. then they claim they found something funny in

my bloodwork and sent me to a specialist that claims I have RA. I think they

are all wrong..they are just out for money. I have some pain but nothing bad.

More like old age pain as someone put it to me.

Prednisone - the side effects of this drug depend on the amount you

take and how long you plan to be on it. Yes, it can lead to bone

loss. But there are things you can do to counteract that. Yes, it

can increase your appetite and make you gain weight, but it did not

do that for me. I am on a very low dose. How much did your rheumy

prescribe?

I don't really know because I never picked it up from the pharmacy. I am NOT

taking it. Don't want to get fat! He did say it was a package that I would

take so many pills one day and less the next.

Methotrexate - this is a very well tolerated drug for most people.

The side effects are not severe, although your doctor does have to

monitor your liver function, that does not mean your liver will be

affected. I have had no side effects of this drug, other than my

hair thinning a little. But again, there are things you can do to

counteract the side effects like taking prescription strength folic

acid.

Oh great!!! Now my hair is going to fall out!! NO way I am taking this!!!!

Arrrgghhh....I am so pissed at this doctor for prescribing this garbage to me

and not even telling me this stuff is poison!!

Biologicals - these are recent drugs and they block our bodies from

making too much of a certain protein (TNF) because people with RA

over produce that protein. The name brands are Enbrel, Remicade and

Humira. I take Humira and have no side effects from it at all. I

know it's effectiveness is helped by the fact I also take mtx.

Overall - the decision to take these drugs should be made jointly by

you and your doctor. The risks and possible side effects should be

weighed against what you will suffer with if you don't take them.

There are many more risks, in my opinion, to leaving RA untreated.

RA is different in everyone, but I can tell you if I was not on my RA

drugs I would not be out of bed before noon on any day. My whole

body just freezes up. It wasn't like that in the beginning, but this

is a progressive disease and it gets worse over time, sometimes even

with the drugs. It does require consisent monitoring because of the

progressiveness, because you have to change medications or dosages as

the disease changes it's course. I may be dependant on these drugs,

I don't care because it means I can function every day, take care of

my daughter, go to work and live my life.

If your rheumy is prescribing something and you are not going to take

it, you have to tell him. He cannot properly manage your illness if

you are not communicating to him your concerns and telling him you

have not decided to take this drug or that. For example, if he

prescribes Enbrel and methotrexate, and you take the Enbrel but not

the mtx, you should both expect the Enbrel to be less effective in

treating the RA. If he doesn't know you didn't take the mtx, and the

Enbrel doesn't work as well, he won't know the lack of mtx could be a

reason. Most insurance does pay for these drugs, but only after a

diagnosis of RA. Talk to your doctor about your insurance. He will

have experience with getting these drugs covered. I don't think mtx

is that expensive, but I take Humira and it's $1200 per month (my

insurance co-pay is $20 per month).

Lastly, this is a complicated disease, especially for someone who has

never heard of it before. My advice is to get a second opinion and

be comfortable that you do in fact have RA. Next, you must educate

yourself about RA if you have it. Doing so will turn the mumbo jumbo

you are hearing from your doctor into knowledge that will help ensure

you get the best possible treatment for this - and most importantly

that you are comfortable with the treatment you receive.

We are all here to help you make sense of this. Please keep asking

us questions, the men and women on this board have lots of advice and

perspective to share about this disease.

Jennie

Thanks but I have decided. This is not for me. I am not taking these horrible

meds. I am doing great. Normal. Just had some wrist pain and swelling. Its

finally gone and my wrist is better. I have always had bad knees from a

teenager when I ran track and injuried them.

This is too scarey for me. I will try and hang around and learn the lingo. but

the more you guys talk the more turned off I get.

> Thank you to all for the welcome. I don't know much about the

> medications. So excuse my ignorance about all the names everyone

is

> taking. I tried Arava and it really did nothing. My doc wants me

to

> start on Methotrexate injections and enbrel injections. I have not

> heard many good things about methotrexate, so I don't think I will

> take this drug. My insurance does not pay for either of these

> medications anyway. They will pay for insulin but not for these

> meds. They claim they are too expensive.

>

> Enbrel I have mixed feelings about. My pain is not too bad. I

have

> good and bad days. I am not even sure this doctor is correct with

my

> diagnosis. Is there a test for RA? I fell and hurt my wrist and

it

> started giving me lots of trouble then my doc claimed it might be

RA

> cause some level was real high. He said it has something to do

with

> swelling. Anyway...its all mumbo jumbo to me.

>

> Besides those drugs, he also gave me a drug called bextra and

> prednisone. I have not taken either. I was told prednisone will

> ruin your bones and make you fat, hyper and always hungry. I do

not

> want any drug that makes me hungry or fat!!!!

>

> I take aleve for pain and benadryl if I need to sleep. I hate

taking

> any sort of medication.

>

> As I read through the old post so many here are on tons of drugs.

> Wow how do you do it??? How do you afford it????I do not want to

> become dependent on a ton of meds like you see these old ladies at

> the pharmacy for a grocery sack of meds!!!

>

> I don't know anyone else with RA nor does anyone in my family have

it!

>

> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> have no clue why my doc did this. He said he needed to see

> something. If he keeps xraying me like this I am going to start

> glowing in the dark! He also seems to like to order a ton of blood

> tests. I would mind if the lab techs didn't stick me 3-4 times to

> get blood. The last time I went I told them they get one try and

> thats it. If you miss, too bad you get no blood. Do you have

blood

> tests all the time?

>

> This is just so time consuming and expensive. I hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I

just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit

and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

,

Please seek an opinion from a second rheumatologist. Your rheumy

should to be forcing anything on you when you are not accepting of

the diagnosis yet and you don't feel comfortable with the medications.

Before you make any medication decisions, you have to figure out if

you think you really have RA. You obviously don't trust your

rheumatologist and you are skeptical of the diagnosis. So deciding

about meds right now is irrelevant.

I just want to clarify my hair is not falling out! It's a little

more than would be in my hair brush normally, but it is not and will

not all fall out. My mom was on mtx for 10 years and she was always

loosing hair, but not enough that anyone could ever tell, not even

me. It is not anything like being on chemotherapy, but mtx is also

used to treat certain types of cancers well. The drug label might

have warnings for side effects you could experience if you were

taking much much higher doses of mtx. RA patients take a very low

dose and that is why side effects are much less. This drug is very

safe. But don't take my word for it. Just take a step back and

let's find out if you really even have RA first.

To answer the question in your other post, a DMARD is a disease

modifying anti rheumatic drug. MTX is a DMARD as are several other

RA drugs. They are very important to be taking if you do in fact

have RA. But again, don't worry about this yet. Stick around and

gather information and let it sink in.

> ,

>

> First of all, seek a second opinion on your diagnosis if you are

not

> convinced of the RA or have doubts about your rheumatologist. An

> accurate diagnosis of RA is not easy because there is no one test.

> There are many different things in your blood that can point to RA,

> but the rheumy must also observe symptoms over a period of time and

> see how your symptoms react to typical RA drugs. My diagnosis took

9

> months although we all knew from the get go it was 99% RA.

>

> Here is the Jennie-low-down on the drugs:

>

> Drugs for treatment of RA are critical. If left untreated, RA in

> most cases will lead to joint destruction, deformity and permenant

> disability, although it does depend on the severity of your

disease.

> Some people can go into remission, but that is the case for the

> majority of us. The drugs we have today are amazing in that they

give

> an RA patient the chance at a normal life. Most consider Enbrel

and

> other biologicals (Remicade and Humira) to be miracle drugs - as

> close as we have to a cure. That is because they slow the

> progression of this disesase and work really well without many side

> effects.

>

> I am hoping my doctor is wrong or I go into remission or it just

goes away completely. I looked at the drug enbrel. My insurance

does not pay for injectable drugs at all. They will pay for insulin

and that is it. So that is not an option for me. Plus the thought

of sticking myself grosses me out so this is not an option that I

would even consider.

>

> As far as being normal I am normal!!! I had a bit of a fall and a

wrist that seemed to take forever to heal. then they claim they

found something funny in my bloodwork and sent me to a specialist

that claims I have RA. I think they are all wrong..they are just out

for money. I have some pain but nothing bad. More like old age pain

as someone put it to me.

>

> Prednisone - the side effects of this drug depend on the amount you

> take and how long you plan to be on it. Yes, it can lead to bone

> loss. But there are things you can do to counteract that. Yes, it

> can increase your appetite and make you gain weight, but it did not

> do that for me. I am on a very low dose. How much did your rheumy

> prescribe?

> I don't really know because I never picked it up from the

pharmacy. I am NOT taking it. Don't want to get fat! He did say it

was a package that I would take so many pills one day and less the

next.

> Methotrexate - this is a very well tolerated drug for most people.

> The side effects are not severe, although your doctor does have to

> monitor your liver function, that does not mean your liver will be

> affected. I have had no side effects of this drug, other than my

> hair thinning a little. But again, there are things you can do to

> counteract the side effects like taking prescription strength folic

> acid.

> Oh great!!! Now my hair is going to fall out!! NO way I am taking

this!!!! Arrrgghhh....I am so pissed at this doctor for prescribing

this garbage to me and not even telling me this stuff is poison!!

> Biologicals - these are recent drugs and they block our bodies from

> making too much of a certain protein (TNF) because people with RA

> over produce that protein. The name brands are Enbrel, Remicade

and

> Humira. I take Humira and have no side effects from it at all. I

> know it's effectiveness is helped by the fact I also take mtx.

>

> Overall - the decision to take these drugs should be made jointly

by

> you and your doctor. The risks and possible side effects should be

> weighed against what you will suffer with if you don't take them.

> There are many more risks, in my opinion, to leaving RA untreated.

> RA is different in everyone, but I can tell you if I was not on my

RA

> drugs I would not be out of bed before noon on any day. My whole

> body just freezes up. It wasn't like that in the beginning, but

this

> is a progressive disease and it gets worse over time, sometimes

even

> with the drugs. It does require consisent monitoring because of

the

> progressiveness, because you have to change medications or dosages

as

> the disease changes it's course. I may be dependant on these

drugs,

> I don't care because it means I can function every day, take care

of

> my daughter, go to work and live my life.

>

> If your rheumy is prescribing something and you are not going to

take

> it, you have to tell him. He cannot properly manage your illness

if

> you are not communicating to him your concerns and telling him you

> have not decided to take this drug or that. For example, if he

> prescribes Enbrel and methotrexate, and you take the Enbrel but not

> the mtx, you should both expect the Enbrel to be less effective in

> treating the RA. If he doesn't know you didn't take the mtx, and

the

> Enbrel doesn't work as well, he won't know the lack of mtx could be

a

> reason. Most insurance does pay for these drugs, but only after a

> diagnosis of RA. Talk to your doctor about your insurance. He

will

> have experience with getting these drugs covered. I don't think

mtx

> is that expensive, but I take Humira and it's $1200 per month (my

> insurance co-pay is $20 per month).

>

> Lastly, this is a complicated disease, especially for someone who

has

> never heard of it before. My advice is to get a second opinion and

> be comfortable that you do in fact have RA. Next, you must educate

> yourself about RA if you have it. Doing so will turn the mumbo

jumbo

> you are hearing from your doctor into knowledge that will help

ensure

> you get the best possible treatment for this - and most importantly

> that you are comfortable with the treatment you receive.

>

> We are all here to help you make sense of this. Please keep asking

> us questions, the men and women on this board have lots of advice

and

> perspective to share about this disease.

>

> Jennie

>

> Thanks but I have decided. This is not for me. I am not taking

these horrible meds. I am doing great. Normal. Just had some wrist

pain and swelling. Its finally gone and my wrist is better. I have

always had bad knees from a teenager when I ran track and injuried

them.

>

> This is too scarey for me. I will try and hang around and learn

the lingo. but the more you guys talk the more turned off I get.

>

>

>

>

>

>

>

Thank you for the website. I went to it. Tons of info. Very

overwhelming. I

have something that will last forvever like AIDS!!!! Oh my I am not

happy about

this. I do not want this. I hope this doctor is wrong.

what is DMARDS? Is that the name of a drug? I have never heard of

that. The

doc called and ordered the Methotrexate. I told him I was not taking

it until

he knew for sure RA is what I have. He was not happy. Said I needed

to talk to

nurse to schedule an appnt immediately for another consult with him.

I told him

I would think about it and get back to him. I also called he pharmacy

and my

insurance will not pay for it anyway. Plus he prescribed some other

medications

as well which I have no clue why? He said once I pick them up to call

the

office so the nurse can teach me to give the shots. NO way am I

giving myself

shots.

His nurse has been calling all day, my house, cell phone and my job.

I am

refusing her calls until I make a decision. I just send it all to

voice mail.

She keeps saying its so " urgent " . I think these people just want me

to waste a

bunch of money!!!!

The methotrexate has some nasty warnings about liver failure, and a

bunch of

nasty side effects of taking chemotherapy. Even says I can get

cancer!!!! No

way am I taking this stuff. This is some super strong poison. My

grandmother

had cancer and was on chemotherapy and it was horrible!!!! NO WAY!!!

This is

not for me.

I don't know how you guys let your docs make you take this stuff.

This is some

bad stuff!!! My husband says NO WAY, this doc has to know for sure

before he

wants me taking this poison.

[Guest guest]

, you haven't suffered long enough, pure and simple. I think you're

jumping the gun in saying you don't want to take prednesone, and that you

don't want to even see the doctor. If your diet is not followed, you can

'blimp' out. I gained 15 pounds after starting treatment, but part of it was

from not being able to move or exercise. My advice is: Don't say NEVER,

you'll likely eat those words if your RA is aggressive enough. Mine even

attacked the pseudo-joints where the ribs tie to the breastbone. The only

area that hasn't suffered yet is my jaw bones. I still wish I could get

enough relief. It depends on your perspective.

Dennis

[ ] Thank you for the welcome

> Thank you to all for the welcome. I don't know much about the

> medications. So excuse my ignorance about all the names everyone is

> taking. I tried Arava and it really did nothing. My doc wants me to

> start on Methotrexate injections and enbrel injections. I have not

> heard many good things about methotrexate, so I don't think I will

> take this drug. My insurance does not pay for either of these

> medications anyway. They will pay for insulin but not for these

> meds. They claim they are too expensive.

>

> Enbrel I have mixed feelings about. My pain is not too bad. I have

> good and bad days. I am not even sure this doctor is correct with my

> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> started giving me lots of trouble then my doc claimed it might be RA

> cause some level was real high. He said it has something to do with

> swelling. Anyway...its all mumbo jumbo to me.

>

> Besides those drugs, he also gave me a drug called bextra and

> prednisone. I have not taken either. I was told prednisone will

> ruin your bones and make you fat, hyper and always hungry. I do not

> want any drug that makes me hungry or fat!!!!

>

> I take aleve for pain and benadryl if I need to sleep. I hate taking

> any sort of medication.

>

> As I read through the old post so many here are on tons of drugs.

> Wow how do you do it??? How do you afford it????I do not want to

> become dependent on a ton of meds like you see these old ladies at

> the pharmacy for a grocery sack of meds!!!

>

> I don't know anyone else with RA nor does anyone in my family have it!

>

> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> have no clue why my doc did this. He said he needed to see

> something. If he keeps xraying me like this I am going to start

> glowing in the dark! He also seems to like to order a ton of blood

> tests. I would mind if the lab techs didn't stick me 3-4 times to

> get blood. The last time I went I told them they get one try and

> thats it. If you miss, too bad you get no blood. Do you have blood

> tests all the time?

>

> This is just so time consuming and expensive. I hate going to the

> doctor. My doc got mad cause I cancelled a few of my appnts. I just

> don't see him really doing anything and I am not taking these drugs

> he prescribes. I plan to take to my family doc at my next visit and

> see if we can stop all these appnts with this specialists.

>

>

[Guest guest]

I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

insurance and could NOT afford treatment for quite awhile. I would have

literally sold my life for relief.

It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

options and choices, sure. That is a good thing to do---BUT- while I did not

like the potential side effects of mtx- I was NOT living without it. I was a

screaming crying blob in my bed for 2 years. I literally could NOT leave my

bed, never stopped screaming- and would literally wet myself etc cuz I could NOT

handle the pain to get to the bathroom. I prayed to die.

SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

driving), toured DC and NYC and am able to once again live. I no longer wish to

die. My children once again have a mother.

The blood tests are to make sure the meds are not doing damage and to monitor

what is going on in your body. The XRays are to check your bones and joints for

damage from the illness. From my XRays they found me full of bone loss in many

joints and tips of bones, and also full of calcium deposits in other joints.

The choice to medicate is an individual one, you do have the right to refuse

treatment but I would suppose if you choose not to medicate, then your doc

might wonder why you came in for help? The doc seems to be offering you

typical help.

Sure, I am only 45 years old, and NO I do not like having these meds or using a

scooter to take my kids to the zoo or feeling this crummy all the time. I do

not like the negative side effects, but---it sure beats how I was living. It

was AWFUL to look my 9 year old in the face with tears running down my cheeks

and tell him NO sorry dude, I can't take you to the park, I cannot even get out

of bed, but hey little guy since you are here, would you hold that glass of

water to my mouth cuz my wrists are too painful for me to do it myself. It was

so horrible to have to ask my 13 year old to help me pull up my pants and

underwear when I did make it to th ebathroom cuz the movement made me scream and

nearly pass out. I am GLAD to have the mtx, even with its possible negative

side effects.

- In , " Dennis W " <betnden@a...> wrote:

> , you haven't suffered long enough, pure and simple. I think you're

> jumping the gun in saying you don't want to take prednesone, and that you

> don't want to even see the doctor. If your diet is not followed, you can

> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

> from not being able to move or exercise. My advice is: Don't say NEVER,

> you'll likely eat those words if your RA is aggressive enough. Mine even

> attacked the pseudo-joints where the ribs tie to the breastbone. The only

> area that hasn't suffered yet is my jaw bones. I still wish I could get

> enough relief. It depends on your perspective.

>

> Dennis

>

> [ ] Thank you for the welcome

>

>

> > Thank you to all for the welcome. I don't know much about the

> > medications. So excuse my ignorance about all the names everyone is

> > taking. I tried Arava and it really did nothing. My doc wants me to

> > start on Methotrexate injections and enbrel injections. I have not

> > heard many good things about methotrexate, so I don't think I will

> > take this drug. My insurance does not pay for either of these

> > medications anyway. They will pay for insulin but not for these

> > meds. They claim they are too expensive.

> >

> > Enbrel I have mixed feelings about. My pain is not too bad. I have

> > good and bad days. I am not even sure this doctor is correct with my

> > diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> > started giving me lots of trouble then my doc claimed it might be RA

> > cause some level was real high. He said it has something to do with

> > swelling. Anyway...its all mumbo jumbo to me.

> >

> > Besides those drugs, he also gave me a drug called bextra and

> > prednisone. I have not taken either. I was told prednisone will

> > ruin your bones and make you fat, hyper and always hungry. I do not

> > want any drug that makes me hungry or fat!!!!

> >

> > I take aleve for pain and benadryl if I need to sleep. I hate taking

> > any sort of medication.

> >

> > As I read through the old post so many here are on tons of drugs.

> > Wow how do you do it??? How do you afford it????I do not want to

> > become dependent on a ton of meds like you see these old ladies at

> > the pharmacy for a grocery sack of meds!!!

> >

> > I don't know anyone else with RA nor does anyone in my family have it!

> >

> > Did anyone elses doctor x-ray your hands, feet, hips and back? I

> > have no clue why my doc did this. He said he needed to see

> > something. If he keeps xraying me like this I am going to start

> > glowing in the dark! He also seems to like to order a ton of blood

> > tests. I would mind if the lab techs didn't stick me 3-4 times to

> > get blood. The last time I went I told them they get one try and

> > thats it. If you miss, too bad you get no blood. Do you have blood

> > tests all the time?

> >

> > This is just so time consuming and expensive. I hate going to the

> > doctor. My doc got mad cause I cancelled a few of my appnts. I just

> > don't see him really doing anything and I am not taking these drugs

> > he prescribes. I plan to take to my family doc at my next visit and

> > see if we can stop all these appnts with this specialists.

> >

> >

[Guest guest]

Dennis, I agree with you. If the pain is unbearable, those possible

side effects of the medications such as methotrexate don't seem as bad

in comparison. And one person is not going to get ALL of the side

effects; in fact, you might not get any of them. But if you do, you can

be switched to another one. I know that I was desperate; I would have

tried arsenic if I had thought it would help, LOL. Now that I'm on

Enbrel, my RA is under control. My inflammation and pain are virtually

gone. I'm just thankful that there are medications for the ailments

that I have, and that they are working so well. So what if I'm one of

those little old ladies who has to go to the drugstore a lot to pick up

prescriptions? I don't mind a bit. I'm also thankful for good doctors

and insurance that helps me pay for it all. Sue

On Friday, August 20, 2004, at 05:53 PM, Dennis W wrote:

>

> , you haven't suffered long enough, pure and simple. I think

> you're

> jumping the gun in saying you don't want to take prednesone, and that

> you

> don't want to even see the doctor. If your diet is not followed, you

> can

> 'blimp' out. I gained 15 pounds after starting treatment, but part of

> it was

> from not being able to move or exercise. My advice is: Don't say NEVER,

> you'll likely eat those words if your RA is aggressive enough. Mine

> even

> attacked the pseudo-joints where the ribs tie to the breastbone. The

> only

> area that hasn't suffered yet is my jaw bones. I still wish I could get

> enough relief. It depends on your perspective.

[Guest guest]

For me, one of the most eye-opening parts of having RA was learning

about the seemingly HUGE amount of drugs that most RA sufferers take

every day. I had never been much of a pill-taker in my life. Never

even took anything for a headache---not because I liked " suffering in

silence, " but because I just never thought to do that. Didn't get too

many headaches anyway. After I got RA, it seemed like my doctor was

prescribing at least two new meds at every appointment, and that

required a HUGE adjustment for me. What helped me most was educating

myself, and learning about sound RA treatment. Namely...1. There's no

one magic pill that works for everyone. Sometimes a lot of trial and

error is involved, and 2. many of these drugs work best in combination

with others. Once I got that education -- and this group has been a

big part of that -- I realized that my doctor was making aggressive

yet cautious choices about which medications are right for me. In my

case, they've paid off great, because I'm managing very well with the

meds I'm on (MTX and Plaquenil, mainly) with no side effects.

I thought Dreamer wrote a very powerful note about why she chooses to

take the medication in spite of the possible side effects, and I agree

completely. Given a choice between my kids growing up with a mom who

can't really participate in their lives because she can't get out of

bed or a mom who CAN because she takes these drugs in a very

controlled situation, I will take the medication.

> >

> > , you haven't suffered long enough, pure and simple. I think

> > you're

> > jumping the gun in saying you don't want to take prednesone, and that

> > you

> > don't want to even see the doctor. If your diet is not followed, you

> > can

> > 'blimp' out. I gained 15 pounds after starting treatment, but part of

> > it was

> > from not being able to move or exercise. My advice is: Don't say

NEVER,

> > you'll likely eat those words if your RA is aggressive enough. Mine

> > even

> > attacked the pseudo-joints where the ribs tie to the breastbone. The

> > only

> > area that hasn't suffered yet is my jaw bones. I still wish I

could get

> > enough relief. It depends on your perspective.

[Guest guest]

I wish I could see another specialist, but this is the only one that my

insurance will pay for. He has a funky attitude. Like he knows it all and I am

stupid and should just do as he says. He don't know if I do come back to see

him my husband is going with me. I want to see him act like that with hubby

present. If he does there will be a confrontation and doc might end up with his

butt whipped! LOL

So the whole thing is pretty irrelavent cause I am not planning to go back

there. And I am so sure he is wrong. I am not taking this poison he is trying

to ram down my throat.

I have very thin hair as is and can't afford to loose anything. I really would

be bald. Another reason this methotrexate sounds like bad stuff. The fact that

its chemotherapy drug is enough to make me run the other way.

The doc said I have to have the injections cause my history of stomach problems

and surgery. He thinks the pills will make me real sick. I went by the

pharmacy today after work and talked to the pharmacist. He did not have

anything promising to say about the drug. He also gave me the prices for the

other drug my doc wants to start if I go back. Its $1500 for a one month

supply!!!! No way I can afford that. The pharmacist checked and my insurance

does not pay for it. Plus there is other stuff you need to be on these drugs.

I am going to try to hang around a while. My husband says I should not come

here cause there are too many weirdos on the internet. I will give it some

time.

Jennie G <xponder70@...> wrote:

,

Please seek an opinion from a second rheumatologist. Your rheumy

should to be forcing anything on you when you are not accepting of

the diagnosis yet and you don't feel comfortable with the medications.

Before you make any medication decisions, you have to figure out if

you think you really have RA. You obviously don't trust your

rheumatologist and you are skeptical of the diagnosis. So deciding

about meds right now is irrelevant.

I just want to clarify my hair is not falling out! It's a little

more than would be in my hair brush normally, but it is not and will

not all fall out. My mom was on mtx for 10 years and she was always

loosing hair, but not enough that anyone could ever tell, not even

me. It is not anything like being on chemotherapy, but mtx is also

used to treat certain types of cancers well. The drug label might

have warnings for side effects you could experience if you were

taking much much higher doses of mtx. RA patients take a very low

dose and that is why side effects are much less. This drug is very

safe. But don't take my word for it. Just take a step back and

let's find out if you really even have RA first.

To answer the question in your other post, a DMARD is a disease

modifying anti rheumatic drug. MTX is a DMARD as are several other

RA drugs. They are very important to be taking if you do in fact

have RA. But again, don't worry about this yet. Stick around and

gather information and let it sink in.

> ,

>

> First of all, seek a second opinion on your diagnosis if you are

not

> convinced of the RA or have doubts about your rheumatologist. An

> accurate diagnosis of RA is not easy because there is no one test.

> There are many different things in your blood that can point to RA,

> but the rheumy must also observe symptoms over a period of time and

> see how your symptoms react to typical RA drugs. My diagnosis took

9

> months although we all knew from the get go it was 99% RA.

>

> Here is the Jennie-low-down on the drugs:

>

> Drugs for treatment of RA are critical. If left untreated, RA in

> most cases will lead to joint destruction, deformity and permenant

> disability, although it does depend on the severity of your

disease.

> Some people can go into remission, but that is the case for the

> majority of us. The drugs we have today are amazing in that they

give

> an RA patient the chance at a normal life. Most consider Enbrel

and

> other biologicals (Remicade and Humira) to be miracle drugs - as

> close as we have to a cure. That is because they slow the

> progression of this disesase and work really well without many side

> effects.

>

> I am hoping my doctor is wrong or I go into remission or it just

goes away completely. I looked at the drug enbrel. My insurance

does not pay for injectable drugs at all. They will pay for insulin

and that is it. So that is not an option for me. Plus the thought

of sticking myself grosses me out so this is not an option that I

would even consider.

>

> As far as being normal I am normal!!! I had a bit of a fall and a

wrist that seemed to take forever to heal. then they claim they

found something funny in my bloodwork and sent me to a specialist

that claims I have RA. I think they are all wrong..they are just out

for money. I have some pain but nothing bad. More like old age pain

as someone put it to me.

>

> Prednisone - the side effects of this drug depend on the amount you

> take and how long you plan to be on it. Yes, it can lead to bone

> loss. But there are things you can do to counteract that. Yes, it

> can increase your appetite and make you gain weight, but it did not

> do that for me. I am on a very low dose. How much did your rheumy

> prescribe?

> I don't really know because I never picked it up from the

pharmacy. I am NOT taking it. Don't want to get fat! He did say it

was a package that I would take so many pills one day and less the

next.

> Methotrexate - this is a very well tolerated drug for most people.

> The side effects are not severe, although your doctor does have to

> monitor your liver function, that does not mean your liver will be

> affected. I have had no side effects of this drug, other than my

> hair thinning a little. But again, there are things you can do to

> counteract the side effects like taking prescription strength folic

> acid.

> Oh great!!! Now my hair is going to fall out!! NO way I am taking

this!!!! Arrrgghhh....I am so pissed at this doctor for prescribing

this garbage to me and not even telling me this stuff is poison!!

> Biologicals - these are recent drugs and they block our bodies from

> making too much of a certain protein (TNF) because people with RA

> over produce that protein. The name brands are Enbrel, Remicade

and

> Humira. I take Humira and have no side effects from it at all. I

> know it's effectiveness is helped by the fact I also take mtx.

>

> Overall - the decision to take these drugs should be made jointly

by

> you and your doctor. The risks and possible side effects should be

> weighed against what you will suffer with if you don't take them.

> There are many more risks, in my opinion, to leaving RA untreated.

> RA is different in everyone, but I can tell you if I was not on my

RA

> drugs I would not be out of bed before noon on any day. My whole

> body just freezes up. It wasn't like that in the beginning, but

this

> is a progressive disease and it gets worse over time, sometimes

even

> with the drugs. It does require consisent monitoring because of

the

> progressiveness, because you have to change medications or dosages

as

> the disease changes it's course. I may be dependant on these

drugs,

> I don't care because it means I can function every day, take care

of

> my daughter, go to work and live my life.

>

> If your rheumy is prescribing something and you are not going to

take

> it, you have to tell him. He cannot properly manage your illness

if

> you are not communicating to him your concerns and telling him you

> have not decided to take this drug or that. For example, if he

> prescribes Enbrel and methotrexate, and you take the Enbrel but not

> the mtx, you should both expect the Enbrel to be less effective in

> treating the RA. If he doesn't know you didn't take the mtx, and

the

> Enbrel doesn't work as well, he won't know the lack of mtx could be

a

> reason. Most insurance does pay for these drugs, but only after a

> diagnosis of RA. Talk to your doctor about your insurance. He

will

> have experience with getting these drugs covered. I don't think

mtx

> is that expensive, but I take Humira and it's $1200 per month (my

> insurance co-pay is $20 per month).

>

> Lastly, this is a complicated disease, especially for someone who

has

> never heard of it before. My advice is to get a second opinion and

> be comfortable that you do in fact have RA. Next, you must educate

> yourself about RA if you have it. Doing so will turn the mumbo

jumbo

> you are hearing from your doctor into knowledge that will help

ensure

> you get the best possible treatment for this - and most importantly

> that you are comfortable with the treatment you receive.

>

> We are all here to help you make sense of this. Please keep asking

> us questions, the men and women on this board have lots of advice

and

> perspective to share about this disease.

>

> Jennie

>

> Thanks but I have decided. This is not for me. I am not taking

these horrible meds. I am doing great. Normal. Just had some wrist

pain and swelling. Its finally gone and my wrist is better. I have

always had bad knees from a teenager when I ran track and injuried

them.

>

> This is too scarey for me. I will try and hang around and learn

the lingo. but the more you guys talk the more turned off I get.

>

>

>

>

>

>

>

Thank you for the website. I went to it. Tons of info. Very

overwhelming. I

have something that will last forvever like AIDS!!!! Oh my I am not

happy about

this. I do not want this. I hope this doctor is wrong.

what is DMARDS? Is that the name of a drug? I have never heard of

that. The

doc called and ordered the Methotrexate. I told him I was not taking

it until

he knew for sure RA is what I have. He was not happy. Said I needed

to talk to

nurse to schedule an appnt immediately for another consult with him.

I told him

I would think about it and get back to him. I also called he pharmacy

and my

insurance will not pay for it anyway. Plus he prescribed some other

medications

as well which I have no clue why? He said once I pick them up to call

the

office so the nurse can teach me to give the shots. NO way am I

giving myself

shots.

His nurse has been calling all day, my house, cell phone and my job.

I am

refusing her calls until I make a decision. I just send it all to

voice mail.

She keeps saying its so " urgent " . I think these people just want me

to waste a

bunch of money!!!!

The methotrexate has some nasty warnings about liver failure, and a

bunch of

nasty side effects of taking chemotherapy. Even says I can get

cancer!!!! No

way am I taking this stuff. This is some super strong poison. My

grandmother

had cancer and was on chemotherapy and it was horrible!!!! NO WAY!!!

This is

not for me.

I don't know how you guys let your docs make you take this stuff.

This is some

bad stuff!!! My husband says NO WAY, this doc has to know for sure

before he

wants me taking this poison.

[Guest guest]

--- In , " " <dumbblondejogger@y...>

wrote:

Given a choice between my kids growing up with a mom who

> can't really participate in their lives because she can't get out

of

> bed or a mom who CAN because she takes these drugs in a very

> controlled situation, I will take the medication.

>

>

>

,

That is perfect statement one why I never hesitated to take

medication for RA. I was the little girl who's mom could not get

out of bed. Only my mom didn't have a choice, the medications were

not there for her. I saw the difference in her ability to live life

after she started on mtx several years into the disease, and even

more so when she first started Enbrel.

I never took medication for headaches or minor illness. When I had

my wisdom teeth out I was knocked out but afterword refused the pain

medication. But I know I without mtx and Humira I would be in bed a

lot and I know exactly how my little girl would feel if I was.

Jennie

[Guest guest]

,

I'm very surprised at your pharmacist. Methotrexate is one of the oldest

drugs used for RA and one of the most effective. It is also considered one

of the safest because it has endured the tests of time and we know what side

effects are possible. The newer drugs have no long term safety data.

It is a good idea to take your husband with you so he understands both the

disease and the treatment. Many times when we are in a doctor's office we

don't remember all that is said and having someone with you can help.

I hope the doctor is wrong and you don't have RA. Before you make any

decisions, please read about the disease so that you can make an educated

decision as far as treatment. The most damage is done in the first few

years, and left untreated, you could suffer from a lot of joint erosion.

It is your body and you have the right to treat or not to treat. When I was

on mtx, I had no hair loss. Just because a side effect is listed, it

doesn't mean you will get it. They have to by law, list all side effects no

matter how rare they are. I was afraid of mtx too, but after weighing the

pros and cons, I decided the joint erosion was more of a concern that

possible side effects.

I had both knees replaced at age 42. I need 2 ankles and they aren't so good

at those replacements. Soon I will need an elbow and a shoulder. These are

the things I consider when I decide on my treatment. I hope you can get an

answer about your diagnosis so that you can decide what is best for you.

a

>

> I wish I could see another specialist, but this is the only one that my

> insurance will pay for. He has a funky attitude. Like he knows it all and I

> am stupid and should just do as he says. He don't know if I do come back to

> see him my husband is going with me. I want to see him act like that with

> hubby present. If he does there will be a confrontation and doc might end up

> with his butt whipped! LOL

>

> So the whole thing is pretty irrelavent cause I am not planning to go back

> there. And I am so sure he is wrong. I am not taking this poison he is

> trying to ram down my throat.

>

> I have very thin hair as is and can't afford to loose anything. I really

> would be bald. Another reason this methotrexate sounds like bad stuff. The

> fact that its chemotherapy drug is enough to make me run the other way.

>

> The doc said I have to have the injections cause my history of stomach

> problems and surgery. He thinks the pills will make me real sick. I went by

> the pharmacy today after work and talked to the pharmacist. He did not have

> anything promising to say about the drug. He also gave me the prices for the

> other drug my doc wants to start if I go back. Its $1500 for a one month

> supply!!!! No way I can afford that. The pharmacist checked and my insurance

> does not pay for it. Plus there is other stuff you need to be on these drugs.

>

> I am going to try to hang around a while. My husband says I should not come

> here cause there are too many weirdos on the internet. I will give it some

> time.

>

>

>

> Jennie G <xponder70@...> wrote:

> ,

>

> Please seek an opinion from a second rheumatologist. Your rheumy

> should to be forcing anything on you when you are not accepting of

> the diagnosis yet and you don't feel comfortable with the medications.

>

> Before you make any medication decisions, you have to figure out if

> you think you really have RA. You obviously don't trust your

> rheumatologist and you are skeptical of the diagnosis. So deciding

> about meds right now is irrelevant.

>

> I just want to clarify my hair is not falling out! It's a little

> more than would be in my hair brush normally, but it is not and will

> not all fall out. My mom was on mtx for 10 years and she was always

> loosing hair, but not enough that anyone could ever tell, not even

> me. It is not anything like being on chemotherapy, but mtx is also

> used to treat certain types of cancers well. The drug label might

> have warnings for side effects you could experience if you were

> taking much much higher doses of mtx. RA patients take a very low

> dose and that is why side effects are much less. This drug is very

> safe. But don't take my word for it. Just take a step back and

> let's find out if you really even have RA first.

>

> To answer the question in your other post, a DMARD is a disease

> modifying anti rheumatic drug. MTX is a DMARD as are several other

> RA drugs. They are very important to be taking if you do in fact

> have RA. But again, don't worry about this yet. Stick around and

> gather information and let it sink in.

>

>

>> ,

>>

>> First of all, seek a second opinion on your diagnosis if you are

> not

>> convinced of the RA or have doubts about your rheumatologist. An

>> accurate diagnosis of RA is not easy because there is no one test.

>> There are many different things in your blood that can point to RA,

>> but the rheumy must also observe symptoms over a period of time and

>> see how your symptoms react to typical RA drugs. My diagnosis took

> 9

>> months although we all knew from the get go it was 99% RA.

>>

>> Here is the Jennie-low-down on the drugs:

>>

>> Drugs for treatment of RA are critical. If left untreated, RA in

>> most cases will lead to joint destruction, deformity and permenant

>> disability, although it does depend on the severity of your

> disease.

>> Some people can go into remission, but that is the case for the

>> majority of us. The drugs we have today are amazing in that they

> give

>> an RA patient the chance at a normal life. Most consider Enbrel

> and

>> other biologicals (Remicade and Humira) to be miracle drugs - as

>> close as we have to a cure. That is because they slow the

>> progression of this disesase and work really well without many side

>> effects.

>>

>> I am hoping my doctor is wrong or I go into remission or it just

> goes away completely. I looked at the drug enbrel. My insurance

> does not pay for injectable drugs at all. They will pay for insulin

> and that is it. So that is not an option for me. Plus the thought

> of sticking myself grosses me out so this is not an option that I

> would even consider.

>>

>> As far as being normal I am normal!!! I had a bit of a fall and a

> wrist that seemed to take forever to heal. then they claim they

> found something funny in my bloodwork and sent me to a specialist

> that claims I have RA. I think they are all wrong..they are just out

> for money. I have some pain but nothing bad. More like old age pain

> as someone put it to me.

>>

>> Prednisone - the side effects of this drug depend on the amount you

>> take and how long you plan to be on it. Yes, it can lead to bone

>> loss. But there are things you can do to counteract that. Yes, it

>> can increase your appetite and make you gain weight, but it did not

>> do that for me. I am on a very low dose. How much did your rheumy

>> prescribe?

>> I don't really know because I never picked it up from the

> pharmacy. I am NOT taking it. Don't want to get fat! He did say it

> was a package that I would take so many pills one day and less the

> next.

>> Methotrexate - this is a very well tolerated drug for most people.

>> The side effects are not severe, although your doctor does have to

>> monitor your liver function, that does not mean your liver will be

>> affected. I have had no side effects of this drug, other than my

>> hair thinning a little. But again, there are things you can do to

>> counteract the side effects like taking prescription strength folic

>> acid.

>> Oh great!!! Now my hair is going to fall out!! NO way I am taking

> this!!!! Arrrgghhh....I am so pissed at this doctor for prescribing

> this garbage to me and not even telling me this stuff is poison!!

>> Biologicals - these are recent drugs and they block our bodies from

>> making too much of a certain protein (TNF) because people with RA

>> over produce that protein. The name brands are Enbrel, Remicade

> and

>> Humira. I take Humira and have no side effects from it at all. I

>> know it's effectiveness is helped by the fact I also take mtx.

>>

>> Overall - the decision to take these drugs should be made jointly

> by

>> you and your doctor. The risks and possible side effects should be

>> weighed against what you will suffer with if you don't take them.

>> There are many more risks, in my opinion, to leaving RA untreated.

>> RA is different in everyone, but I can tell you if I was not on my

> RA

>> drugs I would not be out of bed before noon on any day. My whole

>> body just freezes up. It wasn't like that in the beginning, but

> this

>> is a progressive disease and it gets worse over time, sometimes

> even

>> with the drugs. It does require consisent monitoring because of

> the

>> progressiveness, because you have to change medications or dosages

> as

>> the disease changes it's course. I may be dependant on these

> drugs,

>> I don't care because it means I can function every day, take care

> of

>> my daughter, go to work and live my life.

>>

>> If your rheumy is prescribing something and you are not going to

> take

>> it, you have to tell him. He cannot properly manage your illness

> if

>> you are not communicating to him your concerns and telling him you

>> have not decided to take this drug or that. For example, if he

>> prescribes Enbrel and methotrexate, and you take the Enbrel but not

>> the mtx, you should both expect the Enbrel to be less effective in

>> treating the RA. If he doesn't know you didn't take the mtx, and

> the

>> Enbrel doesn't work as well, he won't know the lack of mtx could be

> a

>> reason. Most insurance does pay for these drugs, but only after a

>> diagnosis of RA. Talk to your doctor about your insurance. He

> will

>> have experience with getting these drugs covered. I don't think

> mtx

>> is that expensive, but I take Humira and it's $1200 per month (my

>> insurance co-pay is $20 per month).

>>

>> Lastly, this is a complicated disease, especially for someone who

> has

>> never heard of it before. My advice is to get a second opinion and

>> be comfortable that you do in fact have RA. Next, you must educate

>> yourself about RA if you have it. Doing so will turn the mumbo

> jumbo

>> you are hearing from your doctor into knowledge that will help

> ensure

>> you get the best possible treatment for this - and most importantly

>> that you are comfortable with the treatment you receive.

>>

>> We are all here to help you make sense of this. Please keep asking

>> us questions, the men and women on this board have lots of advice

> and

>> perspective to share about this disease.

>>

>> Jennie

>>

>> Thanks but I have decided. This is not for me. I am not taking

> these horrible meds. I am doing great. Normal. Just had some wrist

> pain and swelling. Its finally gone and my wrist is better. I have

> always had bad knees from a teenager when I ran track and injuried

> them.

>>

>> This is too scarey for me. I will try and hang around and learn

> the lingo. but the more you guys talk the more turned off I get.

>>

>>

>>

>>

>>

>>

>>

> Thank you for the website. I went to it. Tons of info. Very

> overwhelming. I

> have something that will last forvever like AIDS!!!! Oh my I am not

> happy about

> this. I do not want this. I hope this doctor is wrong.

>

> what is DMARDS? Is that the name of a drug? I have never heard of

> that. The

> doc called and ordered the Methotrexate. I told him I was not taking

> it until

> he knew for sure RA is what I have. He was not happy. Said I needed

> to talk to

> nurse to schedule an appnt immediately for another consult with him.

> I told him

> I would think about it and get back to him. I also called he pharmacy

> and my

> insurance will not pay for it anyway. Plus he prescribed some other

> medications

> as well which I have no clue why? He said once I pick them up to call

> the

> office so the nurse can teach me to give the shots. NO way am I

> giving myself

> shots.

>

> His nurse has been calling all day, my house, cell phone and my job.

> I am

> refusing her calls until I make a decision. I just send it all to

> voice mail.

> She keeps saying its so " urgent " . I think these people just want me

> to waste a

> bunch of money!!!!

>

> The methotrexate has some nasty warnings about liver failure, and a

> bunch of

> nasty side effects of taking chemotherapy. Even says I can get

> cancer!!!! No

> way am I taking this stuff. This is some super strong poison. My

> grandmother

> had cancer and was on chemotherapy and it was horrible!!!! NO WAY!!!

> This is

> not for me.

>

> I don't know how you guys let your docs make you take this stuff.

> This is some

> bad stuff!!! My husband says NO WAY, this doc has to know for sure

> before he

> wants me taking this poison.

>

>

>

>

>

>

>

[Guest guest]

Wow I had no idea this disease caused such suffering. I have not experienced

any bad pain or anything like that. Its more annoying than anything else. its

amazing as I read this post that people are really this sick. Wow this group is

full of some really sick people!!! I feel really sorry for all of you suffering

from this.

I have not had any problems with doing anything I want. It was a fall and wrist

injury that sent me to the doctor cause it seem to never heal, staying red,

swollen, stiff and tender. My doc gave me some pills like aleve but strong that

was suppose to help and it didn't. finally after a few weeks it went away on

its own. Its been feeling great now. That is why I don't understand the

doctors reaction to put me on this butt load of drugs!

I am not one that is good about taking drugs daily. I can't even get through a

thw hole bottle of antibiotics when I had a lung infection. My doc whines..I

tell him I hate taking drugs. I have been healthy for the most part all my life

so no real need.

I feel so sorry for you with small children. I can't even imagine what you are

going through.

dreamer_plus <dreamer_plus@...> wrote:

I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

insurance and could NOT afford treatment for quite awhile. I would have

literally sold my life for relief.

It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

options and choices, sure. That is a good thing to do---BUT- while I did not

like the potential side effects of mtx- I was NOT living without it. I was a

screaming crying blob in my bed for 2 years. I literally could NOT leave my

bed, never stopped screaming- and would literally wet myself etc cuz I could NOT

handle the pain to get to the bathroom. I prayed to die.

SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

driving), toured DC and NYC and am able to once again live. I no longer wish to

die. My children once again have a mother.

The blood tests are to make sure the meds are not doing damage and to monitor

what is going on in your body. The XRays are to check your bones and joints for

damage from the illness. From my XRays they found me full of bone loss in many

joints and tips of bones, and also full of calcium deposits in other joints.

The choice to medicate is an individual one, you do have the right to refuse

treatment but I would suppose if you choose not to medicate, then your doc

might wonder why you came in for help? The doc seems to be offering you

typical help.

Sure, I am only 45 years old, and NO I do not like having these meds or using a

scooter to take my kids to the zoo or feeling this crummy all the time. I do

not like the negative side effects, but---it sure beats how I was living. It

was AWFUL to look my 9 year old in the face with tears running down my cheeks

and tell him NO sorry dude, I can't take you to the park, I cannot even get out

of bed, but hey little guy since you are here, would you hold that glass of

water to my mouth cuz my wrists are too painful for me to do it myself. It was

so horrible to have to ask my 13 year old to help me pull up my pants and

underwear when I did make it to th ebathroom cuz the movement made me scream and

nearly pass out. I am GLAD to have the mtx, even with its possible negative

side effects.

- In , " Dennis W " <betnden@a...> wrote:

> , you haven't suffered long enough, pure and simple. I think you're

> jumping the gun in saying you don't want to take prednesone, and that you

> don't want to even see the doctor. If your diet is not followed, you can

> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

> from not being able to move or exercise. My advice is: Don't say NEVER,

> you'll likely eat those words if your RA is aggressive enough. Mine even

> attacked the pseudo-joints where the ribs tie to the breastbone. The only

> area that hasn't suffered yet is my jaw bones. I still wish I could get

> enough relief. It depends on your perspective.

>

> Dennis

>

> [ ] Thank you for the welcome

>

>

> > Thank you to all for the welcome. I don't know much about the

> > medications. So excuse my ignorance about all the names everyone is

> > taking. I tried Arava and it really did nothing. My doc wants me to

> > start on Methotrexate injections and enbrel injections. I have not

> > heard many good things about methotrexate, so I don't think I will

> > take this drug. My insurance does not pay for either of these

> > medications anyway. They will pay for insulin but not for these

> > meds. They claim they are too expensive.

> >

> > Enbrel I have mixed feelings about. My pain is not too bad. I have

> > good and bad days. I am not even sure this doctor is correct with my

> > diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> > started giving me lots of trouble then my doc claimed it might be RA

> > cause some level was real high. He said it has something to do with

> > swelling. Anyway...its all mumbo jumbo to me.

> >

> > Besides those drugs, he also gave me a drug called bextra and

> > prednisone. I have not taken either. I was told prednisone will

> > ruin your bones and make you fat, hyper and always hungry. I do not

> > want any drug that makes me hungry or fat!!!!

> >

> > I take aleve for pain and benadryl if I need to sleep. I hate taking

> > any sort of medication.

> >

> > As I read through the old post so many here are on tons of drugs.

> > Wow how do you do it??? How do you afford it????I do not want to

> > become dependent on a ton of meds like you see these old ladies at

> > the pharmacy for a grocery sack of meds!!!

> >

> > I don't know anyone else with RA nor does anyone in my family have it!

> >

> > Did anyone elses doctor x-ray your hands, feet, hips and back? I

> > have no clue why my doc did this. He said he needed to see

> > something. If he keeps xraying me like this I am going to start

> > glowing in the dark! He also seems to like to order a ton of blood

> > tests. I would mind if the lab techs didn't stick me 3-4 times to

> > get blood. The last time I went I told them they get one try and

> > thats it. If you miss, too bad you get no blood. Do you have blood

> > tests all the time?

> >

> > This is just so time consuming and expensive. I hate going to the

> > doctor. My doc got mad cause I cancelled a few of my appnts. I just

> > don't see him really doing anything and I am not taking these drugs

> > he prescribes. I plan to take to my family doc at my next visit and

> > see if we can stop all these appnts with this specialists.

> >

> >

[Guest guest]

If your problem is from an injury that has healed and you no longer have any

problems, how did your doctor diagnose you with RA? Did he do blood tests

and do you have copies of them? Do any other joints hurt?

a

> Wow I had no idea this disease caused such suffering. I have not experienced

> any bad pain or anything like that. Its more annoying than anything else.

> its amazing as I read this post that people are really this sick. Wow this

> group is full of some really sick people!!! I feel really sorry for all of

> you suffering from this.

>

> I have not had any problems with doing anything I want. It was a fall and

> wrist injury that sent me to the doctor cause it seem to never heal, staying

> red, swollen, stiff and tender. My doc gave me some pills like aleve but

> strong that was suppose to help and it didn't. finally after a few weeks it

> went away on its own. Its been feeling great now. That is why I don't

> understand the doctors reaction to put me on this butt load of drugs!

>

> I am not one that is good about taking drugs daily. I can't even get through

> a thw hole bottle of antibiotics when I had a lung infection. My doc

> whines..I tell him I hate taking drugs. I have been healthy for the most part

> all my life so no real need.

>

> I feel so sorry for you with small children. I can't even imagine what you

> are going through.

>

>

>

> dreamer_plus <dreamer_plus@...> wrote:

> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

> insurance and could NOT afford treatment for quite awhile. I would have

> literally sold my life for relief.

> It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

> options and choices, sure. That is a good thing to do---BUT- while I did not

> like the potential side effects of mtx- I was NOT living without it. I was a

> screaming crying blob in my bed for 2 years. I literally could NOT leave my

> bed, never stopped screaming- and would literally wet myself etc cuz I could

> NOT handle the pain to get to the bathroom. I prayed to die.

> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

> driving), toured DC and NYC and am able to once again live. I no longer wish

> to die. My children once again have a mother.

> The blood tests are to make sure the meds are not doing damage and to monitor

> what is going on in your body. The XRays are to check your bones and joints

> for damage from the illness. From my XRays they found me full of bone loss in

> many joints and tips of bones, and also full of calcium deposits in other

> joints.

> The choice to medicate is an individual one, you do have the right to refuse

> treatment but I would suppose if you choose not to medicate, then your doc

> might wonder why you came in for help? The doc seems to be offering you

> typical help.

> Sure, I am only 45 years old, and NO I do not like having these meds or using

> a scooter to take my kids to the zoo or feeling this crummy all the time. I

> do not like the negative side effects, but---it sure beats how I was living.

> It was AWFUL to look my 9 year old in the face with tears running down my

> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot even

> get out of bed, but hey little guy since you are here, would you hold that

> glass of water to my mouth cuz my wrists are too painful for me to do it

> myself. It was so horrible to have to ask my 13 year old to help me pull up

> my pants and underwear when I did make it to th ebathroom cuz the movement

> made me scream and nearly pass out. I am GLAD to have the mtx, even with its

> possible negative side effects.

>

>

> - In , " Dennis W " <betnden@a...> wrote:

>> , you haven't suffered long enough, pure and simple. I think you're

>> jumping the gun in saying you don't want to take prednesone, and that you

>> don't want to even see the doctor. If your diet is not followed, you can

>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

>> from not being able to move or exercise. My advice is: Don't say NEVER,

>> you'll likely eat those words if your RA is aggressive enough. Mine even

>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

>> area that hasn't suffered yet is my jaw bones. I still wish I could get

>> enough relief. It depends on your perspective.

>>

>> Dennis

>>

>> [ ] Thank you for the welcome

>>

>>

>>> Thank you to all for the welcome. I don't know much about the

>>> medications. So excuse my ignorance about all the names everyone is

>>> taking. I tried Arava and it really did nothing. My doc wants me to

>>> start on Methotrexate injections and enbrel injections. I have not

>>> heard many good things about methotrexate, so I don't think I will

>>> take this drug. My insurance does not pay for either of these

>>> medications anyway. They will pay for insulin but not for these

>>> meds. They claim they are too expensive.

>>>

>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

>>> good and bad days. I am not even sure this doctor is correct with my

>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

>>> started giving me lots of trouble then my doc claimed it might be RA

>>> cause some level was real high. He said it has something to do with

>>> swelling. Anyway...its all mumbo jumbo to me.

>>>

>>> Besides those drugs, he also gave me a drug called bextra and

>>> prednisone. I have not taken either. I was told prednisone will

>>> ruin your bones and make you fat, hyper and always hungry. I do not

>>> want any drug that makes me hungry or fat!!!!

>>>

>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

>>> any sort of medication.

>>>

>>> As I read through the old post so many here are on tons of drugs.

>>> Wow how do you do it??? How do you afford it????I do not want to

>>> become dependent on a ton of meds like you see these old ladies at

>>> the pharmacy for a grocery sack of meds!!!

>>>

>>> I don't know anyone else with RA nor does anyone in my family have it!

>>>

>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

>>> have no clue why my doc did this. He said he needed to see

>>> something. If he keeps xraying me like this I am going to start

>>> glowing in the dark! He also seems to like to order a ton of blood

>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

>>> get blood. The last time I went I told them they get one try and

>>> thats it. If you miss, too bad you get no blood. Do you have blood

>>> tests all the time?

>>>

>>> This is just so time consuming and expensive. I hate going to the

>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

>>> don't see him really doing anything and I am not taking these drugs

>>> he prescribes. I plan to take to my family doc at my next visit and

>>> see if we can stop all these appnts with this specialists.

>>>

>>>

>

>

>

>

[Guest guest]

ette,

I don't have any side affects from the Sulfasalazine that I can

tell. It is an older drug and not thought to be as effective as

methotrexate or some of the biologicals. However, my rheumy put me

on it because my hubby and I want to start a family and it is the

only one that is safe throughout most of the pregnancy (though not

suggested during breast feeding). It does help my pain when combined

with a lower dose of the prednisone and celebrex and my rheumy seems

to think that it is preventing the joint damage. It never hurts to

ask but I would do the research and see what your doctor thinks.

Best of luck, hope you feel better soon!

Cat

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Cat,

>

> Do you have side effects from the sulphur drug? I think I would

rather try

> that first before any of the harder drugs e.g. mtx, enbrel. I am

taking

> antibiotics now and they work well most of the time. I've had a

flare-up

> and thought I should switch to something or add something.

>

> Thanks,

> ette

> >

[Guest guest]

Just my wrist was hurt. When it took nearly six months to get better the doc

got worried cause he said it should not be swelling and turning red like that.

So he did some blood tests and said some values were off. I do not have copies.

I never thought to ask for them. I started taking aleve, even though I am not

suppose to cause of my stomach problems history and that seem to help. My doc

gave me some drug like aleve but stronger and it really didn't help much. It

finally went away on its own.

Then he asked me if I had any other joint problems. Well my knees have always

been bad. Swelling and painful from time to time. He said that was not normal.

Well since its been that way since I was a teenager I really didn't think much

of it. I have injuried my knees falling and twisting them in the past.

So after all the blood work he called me and said I needed to see the specialist

right away and got me an appointment. I went and I was not impressed. I more

like terrified and very upset with this doctor.

a54 <a54@...> wrote:

If your problem is from an injury that has healed and you no longer have any

problems, how did your doctor diagnose you with RA? Did he do blood tests

and do you have copies of them? Do any other joints hurt?

a

> Wow I had no idea this disease caused such suffering. I have not experienced

> any bad pain or anything like that. Its more annoying than anything else.

> its amazing as I read this post that people are really this sick. Wow this

> group is full of some really sick people!!! I feel really sorry for all of

> you suffering from this.

>

> I have not had any problems with doing anything I want. It was a fall and

> wrist injury that sent me to the doctor cause it seem to never heal, staying

> red, swollen, stiff and tender. My doc gave me some pills like aleve but

> strong that was suppose to help and it didn't. finally after a few weeks it

> went away on its own. Its been feeling great now. That is why I don't

> understand the doctors reaction to put me on this butt load of drugs!

>

> I am not one that is good about taking drugs daily. I can't even get through

> a thw hole bottle of antibiotics when I had a lung infection. My doc

> whines..I tell him I hate taking drugs. I have been healthy for the most part

> all my life so no real need.

>

> I feel so sorry for you with small children. I can't even imagine what you

> are going through.

>

>

>

> dreamer_plus <dreamer_plus@...> wrote:

> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

> insurance and could NOT afford treatment for quite awhile. I would have

> literally sold my life for relief.

> It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

> options and choices, sure. That is a good thing to do---BUT- while I did not

> like the potential side effects of mtx- I was NOT living without it. I was a

> screaming crying blob in my bed for 2 years. I literally could NOT leave my

> bed, never stopped screaming- and would literally wet myself etc cuz I could

> NOT handle the pain to get to the bathroom. I prayed to die.

> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

> driving), toured DC and NYC and am able to once again live. I no longer wish

> to die. My children once again have a mother.

> The blood tests are to make sure the meds are not doing damage and to monitor

> what is going on in your body. The XRays are to check your bones and joints

> for damage from the illness. From my XRays they found me full of bone loss in

> many joints and tips of bones, and also full of calcium deposits in other

> joints.

> The choice to medicate is an individual one, you do have the right to refuse

> treatment but I would suppose if you choose not to medicate, then your doc

> might wonder why you came in for help? The doc seems to be offering you

> typical help.

> Sure, I am only 45 years old, and NO I do not like having these meds or using

> a scooter to take my kids to the zoo or feeling this crummy all the time. I

> do not like the negative side effects, but---it sure beats how I was living.

> It was AWFUL to look my 9 year old in the face with tears running down my

> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot even

> get out of bed, but hey little guy since you are here, would you hold that

> glass of water to my mouth cuz my wrists are too painful for me to do it

> myself. It was so horrible to have to ask my 13 year old to help me pull up

> my pants and underwear when I did make it to th ebathroom cuz the movement

> made me scream and nearly pass out. I am GLAD to have the mtx, even with its

> possible negative side effects.

>

>

> - In , " Dennis W " <betnden@a...> wrote:

>> , you haven't suffered long enough, pure and simple. I think you're

>> jumping the gun in saying you don't want to take prednesone, and that you

>> don't want to even see the doctor. If your diet is not followed, you can

>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

>> from not being able to move or exercise. My advice is: Don't say NEVER,

>> you'll likely eat those words if your RA is aggressive enough. Mine even

>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

>> area that hasn't suffered yet is my jaw bones. I still wish I could get

>> enough relief. It depends on your perspective.

>>

>> Dennis

>>

>> [ ] Thank you for the welcome

>>

>>

>>> Thank you to all for the welcome. I don't know much about the

>>> medications. So excuse my ignorance about all the names everyone is

>>> taking. I tried Arava and it really did nothing. My doc wants me to

>>> start on Methotrexate injections and enbrel injections. I have not

>>> heard many good things about methotrexate, so I don't think I will

>>> take this drug. My insurance does not pay for either of these

>>> medications anyway. They will pay for insulin but not for these

>>> meds. They claim they are too expensive.

>>>

>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

>>> good and bad days. I am not even sure this doctor is correct with my

>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

>>> started giving me lots of trouble then my doc claimed it might be RA

>>> cause some level was real high. He said it has something to do with

>>> swelling. Anyway...its all mumbo jumbo to me.

>>>

>>> Besides those drugs, he also gave me a drug called bextra and

>>> prednisone. I have not taken either. I was told prednisone will

>>> ruin your bones and make you fat, hyper and always hungry. I do not

>>> want any drug that makes me hungry or fat!!!!

>>>

>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

>>> any sort of medication.

>>>

>>> As I read through the old post so many here are on tons of drugs.

>>> Wow how do you do it??? How do you afford it????I do not want to

>>> become dependent on a ton of meds like you see these old ladies at

>>> the pharmacy for a grocery sack of meds!!!

>>>

>>> I don't know anyone else with RA nor does anyone in my family have it!

>>>

>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

>>> have no clue why my doc did this. He said he needed to see

>>> something. If he keeps xraying me like this I am going to start

>>> glowing in the dark! He also seems to like to order a ton of blood

>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

>>> get blood. The last time I went I told them they get one try and

>>> thats it. If you miss, too bad you get no blood. Do you have blood

>>> tests all the time?

>>>

>>> This is just so time consuming and expensive. I hate going to the

>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

>>> don't see him really doing anything and I am not taking these drugs

>>> he prescribes. I plan to take to my family doc at my next visit and

>>> see if we can stop all these appnts with this specialists.

>>>

>>>

>

>

>

>

[Guest guest]

,

You can request a copy of your blood tests and find out exactly what is off

and what it means. You said that the test he was concerned about was the

test for inflammation. That test can be off for many reasons. RA cannot be

diagnosed with just blood tests. What were the results of your x-rays? Was

there any erosion of bone?

a

> Just my wrist was hurt. When it took nearly six months to get better the doc

> got worried cause he said it should not be swelling and turning red like that.

> So he did some blood tests and said some values were off. I do not have

> copies. I never thought to ask for them. I started taking aleve, even though

> I am not suppose to cause of my stomach problems history and that seem to

> help. My doc gave me some drug like aleve but stronger and it really didn't

> help much. It finally went away on its own.

>

> Then he asked me if I had any other joint problems. Well my knees have always

> been bad. Swelling and painful from time to time. He said that was not

> normal. Well since its been that way since I was a teenager I really didn't

> think much of it. I have injuried my knees falling and twisting them in the

> past.

>

> So after all the blood work he called me and said I needed to see the

> specialist right away and got me an appointment. I went and I was not

> impressed. I more like terrified and very upset with this doctor.

>

>

>

> a54 <a54@...> wrote:

> If your problem is from an injury that has healed and you no longer have any

> problems, how did your doctor diagnose you with RA? Did he do blood tests

> and do you have copies of them? Do any other joints hurt?

> a

>

>

>> Wow I had no idea this disease caused such suffering. I have not experienced

>> any bad pain or anything like that. Its more annoying than anything else.

>> its amazing as I read this post that people are really this sick. Wow this

>> group is full of some really sick people!!! I feel really sorry for all of

>> you suffering from this.

>>

>> I have not had any problems with doing anything I want. It was a fall and

>> wrist injury that sent me to the doctor cause it seem to never heal, staying

>> red, swollen, stiff and tender. My doc gave me some pills like aleve but

>> strong that was suppose to help and it didn't. finally after a few weeks it

>> went away on its own. Its been feeling great now. That is why I don't

>> understand the doctors reaction to put me on this butt load of drugs!

>>

>> I am not one that is good about taking drugs daily. I can't even get through

>> a thw hole bottle of antibiotics when I had a lung infection. My doc

>> whines..I tell him I hate taking drugs. I have been healthy for the most

>> part

>> all my life so no real need.

>>

>> I feel so sorry for you with small children. I can't even imagine what you

>> are going through.

>>

>>

>>

>> dreamer_plus <dreamer_plus@...> wrote:

>> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

>> insurance and could NOT afford treatment for quite awhile. I would have

>> literally sold my life for relief.

>> It is wise to weigh out the pros and cons of all meds a doc gives you-

>> discuss

>> options and choices, sure. That is a good thing to do---BUT- while I did not

>> like the potential side effects of mtx- I was NOT living without it. I was a

>> screaming crying blob in my bed for 2 years. I literally could NOT leave my

>> bed, never stopped screaming- and would literally wet myself etc cuz I could

>> NOT handle the pain to get to the bathroom. I prayed to die.

>> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL

>> the

>> driving), toured DC and NYC and am able to once again live. I no longer wish

>> to die. My children once again have a mother.

>> The blood tests are to make sure the meds are not doing damage and to monitor

>> what is going on in your body. The XRays are to check your bones and joints

>> for damage from the illness. From my XRays they found me full of bone loss

>> in

>> many joints and tips of bones, and also full of calcium deposits in other

>> joints.

>> The choice to medicate is an individual one, you do have the right to refuse

>> treatment but I would suppose if you choose not to medicate, then your doc

>> might wonder why you came in for help? The doc seems to be offering you

>> typical help.

>> Sure, I am only 45 years old, and NO I do not like having these meds or using

>> a scooter to take my kids to the zoo or feeling this crummy all the time. I

>> do not like the negative side effects, but---it sure beats how I was living.

>> It was AWFUL to look my 9 year old in the face with tears running down my

>> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot

>> even

>> get out of bed, but hey little guy since you are here, would you hold that

>> glass of water to my mouth cuz my wrists are too painful for me to do it

>> myself. It was so horrible to have to ask my 13 year old to help me pull up

>> my pants and underwear when I did make it to th ebathroom cuz the movement

>> made me scream and nearly pass out. I am GLAD to have the mtx, even with its

>> possible negative side effects.

>>

>>

>> - In , " Dennis W " <betnden@a...> wrote:

>>> , you haven't suffered long enough, pure and simple. I think you're

>>> jumping the gun in saying you don't want to take prednesone, and that you

>>> don't want to even see the doctor. If your diet is not followed, you can

>>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

>>> from not being able to move or exercise. My advice is: Don't say NEVER,

>>> you'll likely eat those words if your RA is aggressive enough. Mine even

>>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

>>> area that hasn't suffered yet is my jaw bones. I still wish I could get

>>> enough relief. It depends on your perspective.

>>>

>>> Dennis

>>>

>>> [ ] Thank you for the welcome

>>>

>>>

>>>> Thank you to all for the welcome. I don't know much about the

>>>> medications. So excuse my ignorance about all the names everyone is

>>>> taking. I tried Arava and it really did nothing. My doc wants me to

>>>> start on Methotrexate injections and enbrel injections. I have not

>>>> heard many good things about methotrexate, so I don't think I will

>>>> take this drug. My insurance does not pay for either of these

>>>> medications anyway. They will pay for insulin but not for these

>>>> meds. They claim they are too expensive.

>>>>

>>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

>>>> good and bad days. I am not even sure this doctor is correct with my

>>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

>>>> started giving me lots of trouble then my doc claimed it might be RA

>>>> cause some level was real high. He said it has something to do with

>>>> swelling. Anyway...its all mumbo jumbo to me.

>>>>

>>>> Besides those drugs, he also gave me a drug called bextra and

>>>> prednisone. I have not taken either. I was told prednisone will

>>>> ruin your bones and make you fat, hyper and always hungry. I do not

>>>> want any drug that makes me hungry or fat!!!!

>>>>

>>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

>>>> any sort of medication.

>>>>

>>>> As I read through the old post so many here are on tons of drugs.

>>>> Wow how do you do it??? How do you afford it????I do not want to

>>>> become dependent on a ton of meds like you see these old ladies at

>>>> the pharmacy for a grocery sack of meds!!!

>>>>

>>>> I don't know anyone else with RA nor does anyone in my family have it!

>>>>

>>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

>>>> have no clue why my doc did this. He said he needed to see

>>>> something. If he keeps xraying me like this I am going to start

>>>> glowing in the dark! He also seems to like to order a ton of blood

>>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

>>>> get blood. The last time I went I told them they get one try and

>>>> thats it. If you miss, too bad you get no blood. Do you have blood

>>>> tests all the time?

>>>>

>>>> This is just so time consuming and expensive. I hate going to the

>>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

>>>> don't see him really doing anything and I am not taking these drugs

>>>> he prescribes. I plan to take to my family doc at my next visit and

>>>> see if we can stop all these appnts with this specialists.

>>>>

>>>>

>>

>>

>>

>>

[Guest guest]

Um, well, uh, I have not had any lung infections in my life- nor have I ever had

any stomach trouble. I had 14 miscarriages- maybe from Lupus or RA related

problems before I was diagnosed- or maybe from my husbands Agent Orange

exposure- who knows? I had one surgery- on my knee, when I was 20. I had ONE

pain shot - before I woke from the anesthetic. I was back waitressing inside of

3 weeks, in spite of an 8 inch incision. I birthed my 3 kids with NO pain help-

none at all. I have not needed an antibiotic in well over 20 years. I am not a

pill taker, either. Better still, I am not a shot taker- BUT were I to be

diagnosed tomorrow with diabetes, I sure would change my mind FAST.

I do hope you DON " T have RA. I really do. I am a nurse and my heart breaks

when people are diagnosed with illness. It would be to your advantage to pay

out of pocket for a 2nd opinion, isn't your health and life worth it? RA can

have SERIOUS complications. It is not common, but it IS possible.

The sad truth is doctors spend YEARS upon years learning traditional western

medicine, not all have faith or trust in alternatives, and many just do not have

the time to pursue alternatives.

As for antibiotics, well, as a nurse they are my biggest pet peeve. If you are

not going to finish them, then do not even start them. WHen you do that you

contribute to the mutation of bacteria causing antibiotic resistant strains of

illness, which can be a very serious public health problem for EVERYONE. (not

just yourself)

Yes there are a few docs out there who are not great persons. But no doc can

help anyone if they are not open honest and truthful with them.... and NO doc

can FORCE you to accept treatment. Please stop making it sound like all of us

are stupid idiots for taking MTX. We did our research and made our informed

decision. I highly doubt any doc strong armed us into taking this med. Your

doc MIGHT be wrong and maybe you DON " T have RA. That would be wonderful. He is

NOT going to throw a flying dart of MTX at you if you go into his office.

As for it being poison and harmful, LOTS of things are. Tyenol is a very

dangerous drug. Over the counter things have the potential to be dangerous.

Milk, coffee, pop, tea, MANY things have the potential to be dangerous. Insulin

SAVES many lives every day. BUT in the wrong hands, insulin can kill. Ordinary

childrens vitamins are not " safe " More toddlers die from over the counter

chewable childrens vitamins than you would ever want to know about. Getting in

your car to go to the grocery store is not " safe "

We are here- trying to find a balance to enhance our quality of life. I have a

very potentially serious possibly life threatening illness and without this

" poison " I would have suicided. I could not have asked my children one more time

to hear me scream primal screams all nite long. I could not have asked them to

wash my urine soaked privates one more time. I could not ask them one more time

to spoon feed me cuz my wrists and fingers could not handle silverware. I have

not had one single negative side effect from MTX- but- I would GLADLY give all

my hair on my entire body for what MTX gave back to me. ANd truth is I WOULD

trade in dying now from some rare side effect. I could NOT continue to live

that way anymore.

This morning I joked to my kids and husband before I came here that I might stop

the MTX cuz it made me tired. My whole family panicked. ALl day every 2-3

minutes one of the kids or my husband made a scream sound- reminding me how

awful it was before. They followed me into the bathroom reminding me look mom

you can do this yourself, are you gonna give this up?

Maybe MTX isn't right for you- but discuss it with a doctor, do your research.

Know the enemy. RA is not " just an inconvenience "

- In , catherine p <painpaingoaway2@y...> wrote:

> Wow I had no idea this disease caused such suffering. I have not experienced

any bad pain or anything like that. Its more annoying than anything else. its

amazing as I read this post that people are really this sick. Wow this group is

full of some really sick people!!! I feel really sorry for all of you suffering

from this.

>

> I have not had any problems with doing anything I want. It was a fall and

wrist injury that sent me to the doctor cause it seem to never heal, staying

red, swollen, stiff and tender. My doc gave me some pills like aleve but strong

that was suppose to help and it didn't. finally after a few weeks it went away

on its own. Its been feeling great now. That is why I don't understand the

doctors reaction to put me on this butt load of drugs!

>

> I am not one that is good about taking drugs daily. I can't even get through

a thw hole bottle of antibiotics when I had a lung infection. My doc whines..I

tell him I hate taking drugs. I have been healthy for the most part all my life

so no real need.

>

> I feel so sorry for you with small children. I can't even imagine what you

are going through.

>

>

>

> dreamer_plus <dreamer_plus@w...> wrote:

> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

insurance and could NOT afford treatment for quite awhile. I would have

literally sold my life for relief.

> It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

options and choices, sure. That is a good thing to do---BUT- while I did not

like the potential side effects of mtx- I was NOT living without it. I was a

screaming crying blob in my bed for 2 years. I literally could NOT leave my

bed, never stopped screaming- and would literally wet myself etc cuz I could NOT

handle the pain to get to the bathroom. I prayed to die.

> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

driving), toured DC and NYC and am able to once again live. I no longer wish to

die. My children once again have a mother.

> The blood tests are to make sure the meds are not doing damage and to monitor

what is going on in your body. The XRays are to check your bones and joints for

damage from the illness. From my XRays they found me full of bone loss in many

joints and tips of bones, and also full of calcium deposits in other joints.

> The choice to medicate is an individual one, you do have the right to refuse

treatment but I would suppose if you choose not to medicate, then your doc

might wonder why you came in for help? The doc seems to be offering you

typical help.

> Sure, I am only 45 years old, and NO I do not like having these meds or using

a scooter to take my kids to the zoo or feeling this crummy all the time. I do

not like the negative side effects, but---it sure beats how I was living. It

was AWFUL to look my 9 year old in the face with tears running down my cheeks

and tell him NO sorry dude, I can't take you to the park, I cannot even get out

of bed, but hey little guy since you are here, would you hold that glass of

water to my mouth cuz my wrists are too painful for me to do it myself. It was

so horrible to have to ask my 13 year old to help me pull up my pants and

underwear when I did make it to th ebathroom cuz the movement made me scream and

nearly pass out. I am GLAD to have the mtx, even with its possible negative

side effects.

>

>

> - In , " Dennis W " <betnden@a...> wrote:

> > , you haven't suffered long enough, pure and simple. I think you're

> > jumping the gun in saying you don't want to take prednesone, and that you

> > don't want to even see the doctor. If your diet is not followed, you can

> > 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

> > from not being able to move or exercise. My advice is: Don't say NEVER,

> > you'll likely eat those words if your RA is aggressive enough. Mine even

> > attacked the pseudo-joints where the ribs tie to the breastbone. The only

> > area that hasn't suffered yet is my jaw bones. I still wish I could get

> > enough relief. It depends on your perspective.

> >

> > Dennis

> >

> > [ ] Thank you for the welcome

> >

> >

> > > Thank you to all for the welcome. I don't know much about the

> > > medications. So excuse my ignorance about all the names everyone is

> > > taking. I tried Arava and it really did nothing. My doc wants me to

> > > start on Methotrexate injections and enbrel injections. I have not

> > > heard many good things about methotrexate, so I don't think I will

> > > take this drug. My insurance does not pay for either of these

> > > medications anyway. They will pay for insulin but not for these

> > > meds. They claim they are too expensive.

> > >

> > > Enbrel I have mixed feelings about. My pain is not too bad. I have

> > > good and bad days. I am not even sure this doctor is correct with my

> > > diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> > > started giving me lots of trouble then my doc claimed it might be RA

> > > cause some level was real high. He said it has something to do with

> > > swelling. Anyway...its all mumbo jumbo to me.

> > >

> > > Besides those drugs, he also gave me a drug called bextra and

> > > prednisone. I have not taken either. I was told prednisone will

> > > ruin your bones and make you fat, hyper and always hungry. I do not

> > > want any drug that makes me hungry or fat!!!!

> > >

> > > I take aleve for pain and benadryl if I need to sleep. I hate taking

> > > any sort of medication.

> > >

> > > As I read through the old post so many here are on tons of drugs.

> > > Wow how do you do it??? How do you afford it????I do not want to

> > > become dependent on a ton of meds like you see these old ladies at

> > > the pharmacy for a grocery sack of meds!!!

> > >

> > > I don't know anyone else with RA nor does anyone in my family have it!

> > >

> > > Did anyone elses doctor x-ray your hands, feet, hips and back? I

> > > have no clue why my doc did this. He said he needed to see

> > > something. If he keeps xraying me like this I am going to start

> > > glowing in the dark! He also seems to like to order a ton of blood

> > > tests. I would mind if the lab techs didn't stick me 3-4 times to

> > > get blood. The last time I went I told them they get one try and

> > > thats it. If you miss, too bad you get no blood. Do you have blood

> > > tests all the time?

> > >

> > > This is just so time consuming and expensive. I hate going to the

> > > doctor. My doc got mad cause I cancelled a few of my appnts. I just

> > > don't see him really doing anything and I am not taking these drugs

> > > he prescribes. I plan to take to my family doc at my next visit and

> > > see if we can stop all these appnts with this specialists.

> > >

> > >

>

>

>

>

[Guest guest]

I will have to reach the nurse. I called the clinic today as they have weekend

sick hours. I asked the nurse that took my call. She stated I needed to come

in and sign some paperwork and they would forward the results to the doctor of

my choice but they would not give me a copy of my chart. So I told her I was

told I was entitled to a copy of my chart. She told me I would have to pay a $1

a page if I " really " wanted it.

He didn't really discuss the x-rays. He just said there was nothing broken in

my wrist. We didn't discuss my feet. Which I have no clue why he x-rayed my

feet when there is nothing wrong with them. As far as bone erosion he did not

say anything like that. Can you please explain more about what this is? Sorry

I am not up or familiar with all this medical stuff.

Thanks

a54 <a54@...> wrote:

,

You can request a copy of your blood tests and find out exactly what is off

and what it means. You said that the test he was concerned about was the

test for inflammation. That test can be off for many reasons. RA cannot be

diagnosed with just blood tests. What were the results of your x-rays? Was

there any erosion of bone?

a

> Just my wrist was hurt. When it took nearly six months to get better the doc

> got worried cause he said it should not be swelling and turning red like that.

> So he did some blood tests and said some values were off. I do not have

> copies. I never thought to ask for them. I started taking aleve, even though

> I am not suppose to cause of my stomach problems history and that seem to

> help. My doc gave me some drug like aleve but stronger and it really didn't

> help much. It finally went away on its own.

>

> Then he asked me if I had any other joint problems. Well my knees have always

> been bad. Swelling and painful from time to time. He said that was not

> normal. Well since its been that way since I was a teenager I really didn't

> think much of it. I have injuried my knees falling and twisting them in the

> past.

>

> So after all the blood work he called me and said I needed to see the

> specialist right away and got me an appointment. I went and I was not

> impressed. I more like terrified and very upset with this doctor.

>

>

>

> a54 <a54@...> wrote:

> If your problem is from an injury that has healed and you no longer have any

> problems, how did your doctor diagnose you with RA? Did he do blood tests

> and do you have copies of them? Do any other joints hurt?

> a

>

>

>> Wow I had no idea this disease caused such suffering. I have not experienced

>> any bad pain or anything like that. Its more annoying than anything else.

>> its amazing as I read this post that people are really this sick. Wow this

>> group is full of some really sick people!!! I feel really sorry for all of

>> you suffering from this.

>>

>> I have not had any problems with doing anything I want. It was a fall and

>> wrist injury that sent me to the doctor cause it seem to never heal, staying

>> red, swollen, stiff and tender. My doc gave me some pills like aleve but

>> strong that was suppose to help and it didn't. finally after a few weeks it

>> went away on its own. Its been feeling great now. That is why I don't

>> understand the doctors reaction to put me on this butt load of drugs!

>>

>> I am not one that is good about taking drugs daily. I can't even get through

>> a thw hole bottle of antibiotics when I had a lung infection. My doc

>> whines..I tell him I hate taking drugs. I have been healthy for the most

>> part

>> all my life so no real need.

>>

>> I feel so sorry for you with small children. I can't even imagine what you

>> are going through.

>>

>>

>>

>> dreamer_plus <dreamer_plus@...> wrote:

>> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

>> insurance and could NOT afford treatment for quite awhile. I would have

>> literally sold my life for relief.

>> It is wise to weigh out the pros and cons of all meds a doc gives you-

>> discuss

>> options and choices, sure. That is a good thing to do---BUT- while I did not

>> like the potential side effects of mtx- I was NOT living without it. I was a

>> screaming crying blob in my bed for 2 years. I literally could NOT leave my

>> bed, never stopped screaming- and would literally wet myself etc cuz I could

>> NOT handle the pain to get to the bathroom. I prayed to die.

>> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL

>> the

>> driving), toured DC and NYC and am able to once again live. I no longer wish

>> to die. My children once again have a mother.

>> The blood tests are to make sure the meds are not doing damage and to monitor

>> what is going on in your body. The XRays are to check your bones and joints

>> for damage from the illness. From my XRays they found me full of bone loss

>> in

>> many joints and tips of bones, and also full of calcium deposits in other

>> joints.

>> The choice to medicate is an individual one, you do have the right to refuse

>> treatment but I would suppose if you choose not to medicate, then your doc

>> might wonder why you came in for help? The doc seems to be offering you

>> typical help.

>> Sure, I am only 45 years old, and NO I do not like having these meds or using

>> a scooter to take my kids to the zoo or feeling this crummy all the time. I

>> do not like the negative side effects, but---it sure beats how I was living.

>> It was AWFUL to look my 9 year old in the face with tears running down my

>> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot

>> even

>> get out of bed, but hey little guy since you are here, would you hold that

>> glass of water to my mouth cuz my wrists are too painful for me to do it

>> myself. It was so horrible to have to ask my 13 year old to help me pull up

>> my pants and underwear when I did make it to th ebathroom cuz the movement

>> made me scream and nearly pass out. I am GLAD to have the mtx, even with its

>> possible negative side effects.

>>

>>

>> - In , " Dennis W " <betnden@a...> wrote:

>>> , you haven't suffered long enough, pure and simple. I think you're

>>> jumping the gun in saying you don't want to take prednesone, and that you

>>> don't want to even see the doctor. If your diet is not followed, you can

>>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

>>> from not being able to move or exercise. My advice is: Don't say NEVER,

>>> you'll likely eat those words if your RA is aggressive enough. Mine even

>>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

>>> area that hasn't suffered yet is my jaw bones. I still wish I could get

>>> enough relief. It depends on your perspective.

>>>

>>> Dennis

>>>

>>> [ ] Thank you for the welcome

>>>

>>>

>>>> Thank you to all for the welcome. I don't know much about the

>>>> medications. So excuse my ignorance about all the names everyone is

>>>> taking. I tried Arava and it really did nothing. My doc wants me to

>>>> start on Methotrexate injections and enbrel injections. I have not

>>>> heard many good things about methotrexate, so I don't think I will

>>>> take this drug. My insurance does not pay for either of these

>>>> medications anyway. They will pay for insulin but not for these

>>>> meds. They claim they are too expensive.

>>>>

>>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

>>>> good and bad days. I am not even sure this doctor is correct with my

>>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

>>>> started giving me lots of trouble then my doc claimed it might be RA

>>>> cause some level was real high. He said it has something to do with

>>>> swelling. Anyway...its all mumbo jumbo to me.

>>>>

>>>> Besides those drugs, he also gave me a drug called bextra and

>>>> prednisone. I have not taken either. I was told prednisone will

>>>> ruin your bones and make you fat, hyper and always hungry. I do not

>>>> want any drug that makes me hungry or fat!!!!

>>>>

>>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

>>>> any sort of medication.

>>>>

>>>> As I read through the old post so many here are on tons of drugs.

>>>> Wow how do you do it??? How do you afford it????I do not want to

>>>> become dependent on a ton of meds like you see these old ladies at

>>>> the pharmacy for a grocery sack of meds!!!

>>>>

>>>> I don't know anyone else with RA nor does anyone in my family have it!

>>>>

>>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

>>>> have no clue why my doc did this. He said he needed to see

>>>> something. If he keeps xraying me like this I am going to start

>>>> glowing in the dark! He also seems to like to order a ton of blood

>>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

>>>> get blood. The last time I went I told them they get one try and

>>>> thats it. If you miss, too bad you get no blood. Do you have blood

>>>> tests all the time?

>>>>

>>>> This is just so time consuming and expensive. I hate going to the

>>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

>>>> don't see him really doing anything and I am not taking these drugs

>>>> he prescribes. I plan to take to my family doc at my next visit and

>>>> see if we can stop all these appnts with this specialists.

>>>>

>>>>

>>

>>

>>

>>

[Guest guest]

I am so sorry to hear about your pain and suffering. Beyond my grandmother who

had cancer I know no one that is sick like this. Sorry, if I upset you. But I

have no experience with this so I guess I am the stupid one here.

This is just so scarey and serious with all these drugs. I also have pretty

limited resources so there is not much room to waste anything. Since I am

terrible at taking stuff if I started it and it had bad side effects, I know

myself and I would just stop it.

It just amazes me how you go to the doctor and walk out with a bunch of

prescriptions for a sack of pills. My co-worker was commenting on how she goes

to the doc and gets a bunch of stuff each time. She was also commenting on how

much she spends on medicine a month.

All of this is just so overwhelming. the longer I am here the more I hear and

the scarier it gets. You story alone has left me terrified. Is this what I am

facing if I do have RA. If so, someone get a gun....shoot me and put me out of

my suffering. (just kidding)

dreamer_plus <dreamer_plus@...> wrote:

Um, well, uh, I have not had any lung infections in my life- nor have I ever had

any stomach trouble. I had 14 miscarriages- maybe from Lupus or RA related

problems before I was diagnosed- or maybe from my husbands Agent Orange

exposure- who knows? I had one surgery- on my knee, when I was 20. I had ONE

pain shot - before I woke from the anesthetic. I was back waitressing inside of

3 weeks, in spite of an 8 inch incision. I birthed my 3 kids with NO pain help-

none at all. I have not needed an antibiotic in well over 20 years. I am not a

pill taker, either. Better still, I am not a shot taker- BUT were I to be

diagnosed tomorrow with diabetes, I sure would change my mind FAST.

I do hope you DON " T have RA. I really do. I am a nurse and my heart breaks

when people are diagnosed with illness. It would be to your advantage to pay

out of pocket for a 2nd opinion, isn't your health and life worth it? RA can

have SERIOUS complications. It is not common, but it IS possible.

The sad truth is doctors spend YEARS upon years learning traditional western

medicine, not all have faith or trust in alternatives, and many just do not have

the time to pursue alternatives.

As for antibiotics, well, as a nurse they are my biggest pet peeve. If you are

not going to finish them, then do not even start them. WHen you do that you

contribute to the mutation of bacteria causing antibiotic resistant strains of

illness, which can be a very serious public health problem for EVERYONE. (not

just yourself)

Yes there are a few docs out there who are not great persons. But no doc can

help anyone if they are not open honest and truthful with them.... and NO doc

can FORCE you to accept treatment. Please stop making it sound like all of us

are stupid idiots for taking MTX. We did our research and made our informed

decision. I highly doubt any doc strong armed us into taking this med. Your

doc MIGHT be wrong and maybe you DON " T have RA. That would be wonderful. He is

NOT going to throw a flying dart of MTX at you if you go into his office.

As for it being poison and harmful, LOTS of things are. Tyenol is a very

dangerous drug. Over the counter things have the potential to be dangerous.

Milk, coffee, pop, tea, MANY things have the potential to be dangerous. Insulin

SAVES many lives every day. BUT in the wrong hands, insulin can kill. Ordinary

childrens vitamins are not " safe " More toddlers die from over the counter

chewable childrens vitamins than you would ever want to know about. Getting in

your car to go to the grocery store is not " safe "

We are here- trying to find a balance to enhance our quality of life. I have a

very potentially serious possibly life threatening illness and without this

" poison " I would have suicided. I could not have asked my children one more time

to hear me scream primal screams all nite long. I could not have asked them to

wash my urine soaked privates one more time. I could not ask them one more time

to spoon feed me cuz my wrists and fingers could not handle silverware. I have

not had one single negative side effect from MTX- but- I would GLADLY give all

my hair on my entire body for what MTX gave back to me. ANd truth is I WOULD

trade in dying now from some rare side effect. I could NOT continue to live

that way anymore.

This morning I joked to my kids and husband before I came here that I might stop

the MTX cuz it made me tired. My whole family panicked. ALl day every 2-3

minutes one of the kids or my husband made a scream sound- reminding me how

awful it was before. They followed me into the bathroom reminding me look mom

you can do this yourself, are you gonna give this up?

Maybe MTX isn't right for you- but discuss it with a doctor, do your research.

Know the enemy. RA is not " just an inconvenience "

- In , catherine p <painpaingoaway2@y...> wrote:

> Wow I had no idea this disease caused such suffering. I have not experienced

any bad pain or anything like that. Its more annoying than anything else. its

amazing as I read this post that people are really this sick. Wow this group is

full of some really sick people!!! I feel really sorry for all of you suffering

from this.

>

> I have not had any problems with doing anything I want. It was a fall and

wrist injury that sent me to the doctor cause it seem to never heal, staying

red, swollen, stiff and tender. My doc gave me some pills like aleve but strong

that was suppose to help and it didn't. finally after a few weeks it went away

on its own. Its been feeling great now. That is why I don't understand the

doctors reaction to put me on this butt load of drugs!

>

> I am not one that is good about taking drugs daily. I can't even get through

a thw hole bottle of antibiotics when I had a lung infection. My doc whines..I

tell him I hate taking drugs. I have been healthy for the most part all my life

so no real need.

>

> I feel so sorry for you with small children. I can't even imagine what you

are going through.

>

>

>

> dreamer_plus <dreamer_plus@w...> wrote:

> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

insurance and could NOT afford treatment for quite awhile. I would have

literally sold my life for relief.

> It is wise to weigh out the pros and cons of all meds a doc gives you- discuss

options and choices, sure. That is a good thing to do---BUT- while I did not

like the potential side effects of mtx- I was NOT living without it. I was a

screaming crying blob in my bed for 2 years. I literally could NOT leave my

bed, never stopped screaming- and would literally wet myself etc cuz I could NOT

handle the pain to get to the bathroom. I prayed to die.

> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL the

driving), toured DC and NYC and am able to once again live. I no longer wish to

die. My children once again have a mother.

> The blood tests are to make sure the meds are not doing damage and to monitor

what is going on in your body. The XRays are to check your bones and joints for

damage from the illness. From my XRays they found me full of bone loss in many

joints and tips of bones, and also full of calcium deposits in other joints.

> The choice to medicate is an individual one, you do have the right to refuse

treatment but I would suppose if you choose not to medicate, then your doc

might wonder why you came in for help? The doc seems to be offering you

typical help.

> Sure, I am only 45 years old, and NO I do not like having these meds or using

a scooter to take my kids to the zoo or feeling this crummy all the time. I do

not like the negative side effects, but---it sure beats how I was living. It

was AWFUL to look my 9 year old in the face with tears running down my cheeks

and tell him NO sorry dude, I can't take you to the park, I cannot even get out

of bed, but hey little guy since you are here, would you hold that glass of

water to my mouth cuz my wrists are too painful for me to do it myself. It was

so horrible to have to ask my 13 year old to help me pull up my pants and

underwear when I did make it to th ebathroom cuz the movement made me scream and

nearly pass out. I am GLAD to have the mtx, even with its possible negative

side effects.

>

>

> - In , " Dennis W " <betnden@a...> wrote:

> > , you haven't suffered long enough, pure and simple. I think you're

> > jumping the gun in saying you don't want to take prednesone, and that you

> > don't want to even see the doctor. If your diet is not followed, you can

> > 'blimp' out. I gained 15 pounds after starting treatment, but part of it was

> > from not being able to move or exercise. My advice is: Don't say NEVER,

> > you'll likely eat those words if your RA is aggressive enough. Mine even

> > attacked the pseudo-joints where the ribs tie to the breastbone. The only

> > area that hasn't suffered yet is my jaw bones. I still wish I could get

> > enough relief. It depends on your perspective.

> >

> > Dennis

> >

> > [ ] Thank you for the welcome

> >

> >

> > > Thank you to all for the welcome. I don't know much about the

> > > medications. So excuse my ignorance about all the names everyone is

> > > taking. I tried Arava and it really did nothing. My doc wants me to

> > > start on Methotrexate injections and enbrel injections. I have not

> > > heard many good things about methotrexate, so I don't think I will

> > > take this drug. My insurance does not pay for either of these

> > > medications anyway. They will pay for insulin but not for these

> > > meds. They claim they are too expensive.

> > >

> > > Enbrel I have mixed feelings about. My pain is not too bad. I have

> > > good and bad days. I am not even sure this doctor is correct with my

> > > diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> > > started giving me lots of trouble then my doc claimed it might be RA

> > > cause some level was real high. He said it has something to do with

> > > swelling. Anyway...its all mumbo jumbo to me.

> > >

> > > Besides those drugs, he also gave me a drug called bextra and

> > > prednisone. I have not taken either. I was told prednisone will

> > > ruin your bones and make you fat, hyper and always hungry. I do not

> > > want any drug that makes me hungry or fat!!!!

> > >

> > > I take aleve for pain and benadryl if I need to sleep. I hate taking

> > > any sort of medication.

> > >

> > > As I read through the old post so many here are on tons of drugs.

> > > Wow how do you do it??? How do you afford it????I do not want to

> > > become dependent on a ton of meds like you see these old ladies at

> > > the pharmacy for a grocery sack of meds!!!

> > >

> > > I don't know anyone else with RA nor does anyone in my family have it!

> > >

> > > Did anyone elses doctor x-ray your hands, feet, hips and back? I

> > > have no clue why my doc did this. He said he needed to see

> > > something. If he keeps xraying me like this I am going to start

> > > glowing in the dark! He also seems to like to order a ton of blood

> > > tests. I would mind if the lab techs didn't stick me 3-4 times to

> > > get blood. The last time I went I told them they get one try and

> > > thats it. If you miss, too bad you get no blood. Do you have blood

> > > tests all the time?

> > >

> > > This is just so time consuming and expensive. I hate going to the

> > > doctor. My doc got mad cause I cancelled a few of my appnts. I just

> > > don't see him really doing anything and I am not taking these drugs

> > > he prescribes. I plan to take to my family doc at my next visit and

> > > see if we can stop all these appnts with this specialists.

> > >

> > >

>

>

>

>

[Guest guest]

Yes you are entitled to your records, but yes they can charge you for them.

You might have to put your request in writing.

He probably XRayed your feet to see if they are damaged and I believe damage CAN

occur even if YOU do not feel it. Sounds like he was being thorough.

- In , catherine p <painpaingoaway2@y...> wrote:

> I will have to reach the nurse. I called the clinic today as they have

weekend sick hours. I asked the nurse that took my call. She stated I needed

to come in and sign some paperwork and they would forward the results to the

doctor of my choice but they would not give me a copy of my chart. So I told

her I was told I was entitled to a copy of my chart. She told me I would have

to pay a $1 a page if I " really " wanted it.

>

> He didn't really discuss the x-rays. He just said there was nothing broken in

my wrist. We didn't discuss my feet. Which I have no clue why he x-rayed my

feet when there is nothing wrong with them. As far as bone erosion he did not

say anything like that. Can you please explain more about what this is? Sorry

I am not up or familiar with all this medical stuff.

>

> Thanks

>

>

>

> a54 <a54@s...> wrote:

> ,

> You can request a copy of your blood tests and find out exactly what is off

> and what it means. You said that the test he was concerned about was the

> test for inflammation. That test can be off for many reasons. RA cannot be

> diagnosed with just blood tests. What were the results of your x-rays? Was

> there any erosion of bone?

> a

>

>

>

>

> > Just my wrist was hurt. When it took nearly six months to get better the

doc

> > got worried cause he said it should not be swelling and turning red like

that.

> > So he did some blood tests and said some values were off. I do not have

> > copies. I never thought to ask for them. I started taking aleve, even

though

> > I am not suppose to cause of my stomach problems history and that seem to

> > help. My doc gave me some drug like aleve but stronger and it really didn't

> > help much. It finally went away on its own.

> >

> > Then he asked me if I had any other joint problems. Well my knees have

always

> > been bad. Swelling and painful from time to time. He said that was not

> > normal. Well since its been that way since I was a teenager I really didn't

> > think much of it. I have injuried my knees falling and twisting them in the

> > past.

> >

> > So after all the blood work he called me and said I needed to see the

> > specialist right away and got me an appointment. I went and I was not

> > impressed. I more like terrified and very upset with this doctor.

> >

> >

> >

> > a54 <a54@s...> wrote:

> > If your problem is from an injury that has healed and you no longer have any

> > problems, how did your doctor diagnose you with RA? Did he do blood tests

> > and do you have copies of them? Do any other joints hurt?

> > a

> >

> >

> >> Wow I had no idea this disease caused such suffering. I have not

experienced

> >> any bad pain or anything like that. Its more annoying than anything else.

> >> its amazing as I read this post that people are really this sick. Wow this

> >> group is full of some really sick people!!! I feel really sorry for all of

> >> you suffering from this.

> >>

> >> I have not had any problems with doing anything I want. It was a fall and

> >> wrist injury that sent me to the doctor cause it seem to never heal,

staying

> >> red, swollen, stiff and tender. My doc gave me some pills like aleve but

> >> strong that was suppose to help and it didn't. finally after a few weeks

it

> >> went away on its own. Its been feeling great now. That is why I don't

> >> understand the doctors reaction to put me on this butt load of drugs!

> >>

> >> I am not one that is good about taking drugs daily. I can't even get

through

> >> a thw hole bottle of antibiotics when I had a lung infection. My doc

> >> whines..I tell him I hate taking drugs. I have been healthy for the most

> >> part

> >> all my life so no real need.

> >>

> >> I feel so sorry for you with small children. I can't even imagine what you

> >> are going through.

> >>

> >>

> >>

> >> dreamer_plus <dreamer_plus@w...> wrote:

> >> I tend to agree with Dennis. I am not fond of docs, nor meds, and I had no

> >> insurance and could NOT afford treatment for quite awhile. I would have

> >> literally sold my life for relief.

> >> It is wise to weigh out the pros and cons of all meds a doc gives you-

> >> discuss

> >> options and choices, sure. That is a good thing to do---BUT- while I did

not

> >> like the potential side effects of mtx- I was NOT living without it. I was

a

> >> screaming crying blob in my bed for 2 years. I literally could NOT leave

my

> >> bed, never stopped screaming- and would literally wet myself etc cuz I

could

> >> NOT handle the pain to get to the bathroom. I prayed to die.

> >> SInce beginning mtx, I have been on a vacation to the ocean (and I did ALL

> >> the

> >> driving), toured DC and NYC and am able to once again live. I no longer

wish

> >> to die. My children once again have a mother.

> >> The blood tests are to make sure the meds are not doing damage and to

monitor

> >> what is going on in your body. The XRays are to check your bones and

joints

> >> for damage from the illness. From my XRays they found me full of bone loss

> >> in

> >> many joints and tips of bones, and also full of calcium deposits in other

> >> joints.

> >> The choice to medicate is an individual one, you do have the right to

refuse

> >> treatment but I would suppose if you choose not to medicate, then your doc

> >> might wonder why you came in for help? The doc seems to be offering you

> >> typical help.

> >> Sure, I am only 45 years old, and NO I do not like having these meds or

using

> >> a scooter to take my kids to the zoo or feeling this crummy all the time.

I

> >> do not like the negative side effects, but---it sure beats how I was

living.

> >> It was AWFUL to look my 9 year old in the face with tears running down my

> >> cheeks and tell him NO sorry dude, I can't take you to the park, I cannot

> >> even

> >> get out of bed, but hey little guy since you are here, would you hold that

> >> glass of water to my mouth cuz my wrists are too painful for me to do it

> >> myself. It was so horrible to have to ask my 13 year old to help me pull

up

> >> my pants and underwear when I did make it to th ebathroom cuz the movement

> >> made me scream and nearly pass out. I am GLAD to have the mtx, even with

its

> >> possible negative side effects.

> >>

> >>

> >> - In , " Dennis W " <betnden@a...> wrote:

> >>> , you haven't suffered long enough, pure and simple. I think

you're

> >>> jumping the gun in saying you don't want to take prednesone, and that you

> >>> don't want to even see the doctor. If your diet is not followed, you can

> >>> 'blimp' out. I gained 15 pounds after starting treatment, but part of it

was

> >>> from not being able to move or exercise. My advice is: Don't say NEVER,

> >>> you'll likely eat those words if your RA is aggressive enough. Mine even

> >>> attacked the pseudo-joints where the ribs tie to the breastbone. The only

> >>> area that hasn't suffered yet is my jaw bones. I still wish I could get

> >>> enough relief. It depends on your perspective.

> >>>

> >>> Dennis

> >>>

> >>> [ ] Thank you for the welcome

> >>>

> >>>

> >>>> Thank you to all for the welcome. I don't know much about the

> >>>> medications. So excuse my ignorance about all the names everyone is

> >>>> taking. I tried Arava and it really did nothing. My doc wants me to

> >>>> start on Methotrexate injections and enbrel injections. I have not

> >>>> heard many good things about methotrexate, so I don't think I will

> >>>> take this drug. My insurance does not pay for either of these

> >>>> medications anyway. They will pay for insulin but not for these

> >>>> meds. They claim they are too expensive.

> >>>>

> >>>> Enbrel I have mixed feelings about. My pain is not too bad. I have

> >>>> good and bad days. I am not even sure this doctor is correct with my

> >>>> diagnosis. Is there a test for RA? I fell and hurt my wrist and it

> >>>> started giving me lots of trouble then my doc claimed it might be RA

> >>>> cause some level was real high. He said it has something to do with

> >>>> swelling. Anyway...its all mumbo jumbo to me.

> >>>>

> >>>> Besides those drugs, he also gave me a drug called bextra and

> >>>> prednisone. I have not taken either. I was told prednisone will

> >>>> ruin your bones and make you fat, hyper and always hungry. I do not

> >>>> want any drug that makes me hungry or fat!!!!

> >>>>

> >>>> I take aleve for pain and benadryl if I need to sleep. I hate taking

> >>>> any sort of medication.

> >>>>

> >>>> As I read through the old post so many here are on tons of drugs.

> >>>> Wow how do you do it??? How do you afford it????I do not want to

> >>>> become dependent on a ton of meds like you see these old ladies at

> >>>> the pharmacy for a grocery sack of meds!!!

> >>>>

> >>>> I don't know anyone else with RA nor does anyone in my family have it!

> >>>>

> >>>> Did anyone elses doctor x-ray your hands, feet, hips and back? I

> >>>> have no clue why my doc did this. He said he needed to see

> >>>> something. If he keeps xraying me like this I am going to start

> >>>> glowing in the dark! He also seems to like to order a ton of blood

> >>>> tests. I would mind if the lab techs didn't stick me 3-4 times to

> >>>> get blood. The last time I went I told them they get one try and

> >>>> thats it. If you miss, too bad you get no blood. Do you have blood

> >>>> tests all the time?

> >>>>

> >>>> This is just so time consuming and expensive. I hate going to the

> >>>> doctor. My doc got mad cause I cancelled a few of my appnts. I just

> >>>> don't see him really doing anything and I am not taking these drugs

> >>>> he prescribes. I plan to take to my family doc at my next visit and

> >>>> see if we can stop all these appnts with this specialists.

> >>>>

> >>>>

> >>

> >>

> >>

> >>

[Guest guest]

Hi Cat,

I will talk to my doctor when I go in September. I still feel the lesser of

the drugs the better. The harder drugs are out there if we ever need them.

Thanks, and good luck with your becoming pregnant.

ette

[Guest guest]

A woman friend from our motorcycle group decided that her RA is keeping her

from working, so she applied for SSD. I told her I could help since I had

just completed my own successful attempt. She went through all the paperwork

and it was all routine until she was sent to a doctor for pertinent tests.

It turned out that she never had RA! That's the same I hear from lots of

people because there is a large misunderstanding of RA. Many have told me

they have RA but haven't seen the doctor yet and have no blood tests

performed. The company I worked for had a policy that " everyone has

arthritis " , so after 20 years I was laid off since I couldn't do my job. If

anyone asks them, I was never disabled.

My opinion that I have vocalized is: Rheumatoid Arthritis is NOT arthritis,

but it causes Arthritis. Therefore, it should be properly named " Rheumatoid

Disease " . It would certainly be more understood then.

Dennis

Re: [ ] Re: Thank you for the welcome

> If your problem is from an injury that has healed and you no longer have

any

> problems, how did your doctor diagnose you with RA? Did he do blood tests

> and do you have copies of them? Do any other joints hurt?

> a

>

>

> > Wow I had no idea this disease caused such suffering. I have not

experienced

> > any bad pain or anything like that. Its more annoying than anything

else.

> > its amazing as I read this post that people are really this sick. Wow

this

> > group is full of some really sick people!!! I feel really sorry for all

of

> > you suffering from this.

> >

> > I have not had any problems with doing anything I want. It was a fall

and

> > wrist injury that sent me to the doctor cause it seem to never heal,

staying

> > red, swollen, stiff and tender. My doc gave me some pills like aleve

but

> > strong that was suppose to help and it didn't. finally after a few

weeks it

> > went away on its own. Its been feeling great now. That is why I don't

> > understand the doctors reaction to put me on this butt load of drugs!

> >

> > I am not one that is good about taking drugs daily. I can't even get

through

> > a thw hole bottle of antibiotics when I had a lung infection. My doc

> > whines..I tell him I hate taking drugs. I have been healthy for the

most part

> > all my life so no real need.

> >

> > I feel so sorry for you with small children. I can't even imagine what

you

> > are going through.

> >

> >