Re: Re: scared to start my meds

[Guest guest]

> I'm glad no one at that time told me that my RA must not be

> very bad if I was nervous about the meds.>>>

>

But that is not what she said, she said she was " AFRAID " to take the meds.

If she said she was " nervous " my response would have been different.

You changed what she said.

" Afraid " is a much stronger response than " nervous " .

It is important that you use the same words as the person who responds .

At any rate, I hope she gets relief!

Thanks,

Pris

[Guest guest]

I

> , I believe Pris is telling it like it is, too

>

This is Pris.

I have been taking prednisone for 9 years, reading about the horrible side

effects (almost every day on this list ) and suffering some of them .

Why do I take it?

I hurt too much to be " afraid " !

Ya just get to a point, when you ask yourself, " Is life in agony worth a

risk by taking drugs, for some relief " ? What is your QUALITY of life?

Most people go to the rheumy when they are desperate, as I was. They are

looking for any way out.

I do not think I am alone when I say I sometimes wish euthenization (for

humans) was legal, heheh!

The good news is that we HAVE these drugs that were not available a

generation ago.

Be thankful, not fearful!

Try them, if they don't work, try something else.

But be brave. Otherwise, accept your suffering as a choice.

Pris's ramblings..

[Guest guest]

I was afraid of the side effects of the med.

and what they could do to my body even though I was in horrible pain.

When I first started doing injections I was a nervous wreck but that didn't

mean I wasn't in pain.

Also some people have higher tolerance to pain than others.

Joy

Randall <krandall@...> wrote:

> Your RA must not be very bad if you are afraid to take your meds.

> You must decide which is better.....keeping things as they are

now, and being

> " safe " or taking a risk in order to feel better. When your RA gets

bad

> enough, you will jump at a chance to take the meds.

Hi Pris,

I don't really think that's fair to someone new to RA. At about 11

months into it, I guess I am still new enough that I remember

feeling EXACTLY the way she does, even though I was in horrible

pain, was so fatigued that I was non-functional much of the time and

had my hand curled up and frozen into a totally unusable claw.

I was scared of the RA, but I was also very nervous about all the

different things I read about the meds. Particularly, when there

are still those out there promising cures through diet, etc. I

suspect that with the level of fatigue I was experiencing, I wasn't

thinking all that clearly, either.

I think the two things that helped me most in feeling more in

contol, and deciding what meds were right for ME to try were finding

a rheumatologist that I really trusted, and who I felt I could

really discuss things with, and then finding the good people on this

BB. I'm glad no one at that time told me that my RA must not be

very bad if I was nervous about the meds.

Joy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Visit Joy's Homepage and Reading Room!

http://jhoormann-ivil.tripod.com

Come see My Dog Salsa!

http://www.geocities.com/jhoorm01/Salsa.html

[Guest guest]

, I believe Pris is telling it like it is, too. If a person will not

take the meds prescribed by the doctor that examined her in the beginning,

there is something more wrong than just not wanting to take the meds. When

you hurt enough, you will take almost anything out of desperation. The

apparent problem is that it has to be said in a way that doesn't offend or

seem to be something you don't want to hear.

It reminds me of Homer Simpson hitting or burning himself and saying,

" D'oh " , then doing it again. He just doesn't get the message that he's not

really supposed to do that. One of my life-long problems is that I've never

been political enough. If it's black, that's what I call it. And that

attitude gets me in trouble on occasion. Investigate the meds and their

symptoms, take them, then look for problems, in that order! Problem

solved...

Dennis in Eastexas

" It's not Rocket Surgery "

[ ] Re: scared to start my meds

>

>

>> Your RA must not be very bad if you are afraid to take your meds.

>> You must decide which is better.....keeping things as they are

> now, and being

>> " safe " or taking a risk in order to feel better. When your RA gets

> bad

>> enough, you will jump at a chance to take the meds.

>

> Hi Pris,

>

> I don't really think that's fair to someone new to RA. At about 11

> months into it, I guess I am still new enough that I remember

> feeling EXACTLY the way she does, even though I was in horrible

> pain, was so fatigued that I was non-functional much of the time and

> had my hand curled up and frozen into a totally unusable claw.

>

> I was scared of the RA, but I was also very nervous about all the

> different things I read about the meds. Particularly, when there

> are still those out there promising cures through diet, etc. I

> suspect that with the level of fatigue I was experiencing, I wasn't

> thinking all that clearly, either.

>

> I think the two things that helped me most in feeling more in

> contol, and deciding what meds were right for ME to try were finding

> a rheumatologist that I really trusted, and who I felt I could

> really discuss things with, and then finding the good people on this

> BB. I'm glad no one at that time told me that my RA must not be

> very bad if I was nervous about the meds.

>

>

[Guest guest]

And I'm here to tell you that I would give myself multiple shots to get

rid of a migraine! They are really bad! Mine are mostly gone because of

preventive medication that I take, but holiday stress (compounded by a

bad family situation) has given me a doozy of a migraine that has

lasted three days so far. Today it's better, but not gone. I don't have

any strong migraine medication.

And, yes, I gladly give myself injections of Enbrel twice a week for my

RA. I was scared of the medications at first, too. When my rheumy gave

me a brochure on methotrexate and I read it, I thought oh boy, if this

doesn't kill me it might help me a little. But I was in terrible pain

and took the risk. RA isn't for sissies, that's for sure. We have to be

brave and weigh the risks against the benefits.

Sue

On Wednesday, December 27, 2006, at 10:26 PM, cynthiadew1 wrote:

>

> I have a doctor who once told me that if my head

> hurt bad enough to give myself a shot, then it must be a migraine. I

> still tell myself that, whether it's for my migraine medication or my

> weekly injection of MTX.

[Guest guest]

I just wanted to put my two cents in about this:)

I was diagnosed in November with RA and was in horrible pain. Right now, I

am on MTX, Pred. and Folic Acid and I feel fantastic. I have had no side

effects at all. It is not all negative stuff with the meds. Just as I hated to

start my 2 year old on Insulin injections when he was diagnosed with Type I

Diabetes, I wasn't thrilled to have to take a bunch of pills everyday but you

do

what you have to do and what is best for you in the long run. Good Luck and

don't be afraid!

Dianne

[Guest guest]

i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE THEM NOT THAT

I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH COMMENTS FROM SOME PEOPLE SO

MAYBE THIS WASNT A GOOD IDEA. I JUST FOUND OUT I HAVE RHUEMATOID ARHTRITIS BUT I

ALSO HAVE ULCERATIVE COLITIS. IM ON PREDNISONE AND PENTASA WHICH CUASE ALOT OF

SIDE EFFECTS. METHOTREXATE I THINK CUASES ALOT ALSO.

TARA

Randall <krandall@...> wrote:

> Your RA must not be very bad if you are afraid to take your meds.

> You must decide which is better.....keeping things as they are

now, and being

> " safe " or taking a risk in order to feel better. When your RA gets

bad

> enough, you will jump at a chance to take the meds.

Hi Pris,

I don't really think that's fair to someone new to RA. At about 11

months into it, I guess I am still new enough that I remember

feeling EXACTLY the way she does, even though I was in horrible

pain, was so fatigued that I was non-functional much of the time and

had my hand curled up and frozen into a totally unusable claw.

I was scared of the RA, but I was also very nervous about all the

different things I read about the meds. Particularly, when there

are still those out there promising cures through diet, etc. I

suspect that with the level of fatigue I was experiencing, I wasn't

thinking all that clearly, either.

I think the two things that helped me most in feeling more in

contol, and deciding what meds were right for ME to try were finding

a rheumatologist that I really trusted, and who I felt I could

really discuss things with, and then finding the good people on this

BB. I'm glad no one at that time told me that my RA must not be

very bad if I was nervous about the meds.

__________________________________________________

[Guest guest]

Tara,

Hang in there. I don't believe anyone is purposely trying to be harsh.

Methotrexate can sound scary. It's important to remember that it's been in

use for decades and many people with RA take it with minimal or no side

effects.

Good luck with it!

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: scared to start my meds

>i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE THEM NOT

>THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH COMMENTS FROM SOME

>PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST FOUND OUT I HAVE RHUEMATOID

>ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS. IM ON PREDNISONE AND PENTASA

>WHICH CUASE ALOT OF SIDE EFFECTS. METHOTREXATE I THINK CUASES ALOT ALSO.

> TARA

[Guest guest]

Tara, hang in there. I think it's good you came to the group for support.

People are just in different phases of understanding and adjusting to RA.

People who have integrated and accepted their RA diagnosis and treatment plan

are able to say, sure, take the meds, that's what you need to do. However, in

the early stages of diagnosis (I was just diagnosed a month ago) there's a lot

of fear. I know I didn't want to have RA and I didn't want to deal with all the

medicines. That frustration and grief is ok, it's something you have to slog

through. My goal is to get RA into the background of my life, rather than the

foreground. I resented having 3 dr's appts per week and always thinking about

it, getting blood drawn, etc. It just seemed to be the focus of every day.

However as the weeks go by, and you start to find meds that you and your dr are

comfortable with, you start to realize that hey, you're still you, and life has

changed, but it's still workable. Medicine

can be a pathway to regain and maintain your independence, but the first

medicine you take, might not be the one for the long haul. Kind of like dating!

Don't give up on the group or yourself. This is a very difficult time of life

but it does get better. Best, Kate F

tara bowman <tara_bowman2003@...> wrote: i only was looking for

aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE THEM NOT THAT I DONT WANT TO TAKE

THEM. IM GETTING SOME HARSH COMMENTS FROM SOME PEOPLE SO MAYBE THIS WASNT A GOOD

IDEA. I JUST FOUND OUT I HAVE RHUEMATOID ARHTRITIS BUT I ALSO HAVE ULCERATIVE

COLITIS. IM ON PREDNISONE AND PENTASA WHICH CUASE ALOT OF SIDE EFFECTS.

METHOTREXATE I THINK CUASES ALOT ALSO.

TARA

Randall <krandall@...> wrote:

> Your RA must not be very bad if you are afraid to take your meds.

> You must decide which is better.....keeping things as they are

now, and being

> " safe " or taking a risk in order to feel better. When your RA gets

bad

> enough, you will jump at a chance to take the meds.

Hi Pris,

I don't really think that's fair to someone new to RA. At about 11

months into it, I guess I am still new enough that I remember

feeling EXACTLY the way she does, even though I was in horrible

pain, was so fatigued that I was non-functional much of the time and

had my hand curled up and frozen into a totally unusable claw.

I was scared of the RA, but I was also very nervous about all the

different things I read about the meds. Particularly, when there

are still those out there promising cures through diet, etc. I

suspect that with the level of fatigue I was experiencing, I wasn't

thinking all that clearly, either.

I think the two things that helped me most in feeling more in

contol, and deciding what meds were right for ME to try were finding

a rheumatologist that I really trusted, and who I felt I could

really discuss things with, and then finding the good people on this

BB. I'm glad no one at that time told me that my RA must not be

very bad if I was nervous about the meds.

__________________________________________________

[Guest guest]

Tara,

I know how you feel. I havent even gotten to the point of finding a rheumy

let alone taking the medicine. I know that years ago my mom took plaquenil

and had horrible side effects and her rheumy ultimately took her off of it.

My pcp told me that I " dont want to have to take rheumatoid meds until I

have to, " and then I read the posts on here. The side effects really scare

me also. I am sure that I will take the meds the dr prescribes but I guess

I am just saying that empathize with your fear.

>From: tara bowman <tara_bowman2003@...>

>Reply-

>

>Subject: Re: [ ] Re: scared to start my meds

>Date: Thu, 28 Dec 2006 05:50:33 -0800 (PST)

>

>i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE THEM NOT

>THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH COMMENTS FROM SOME

>PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST FOUND OUT I HAVE RHUEMATOID

>ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS. IM ON PREDNISONE AND PENTASA

>WHICH CUASE ALOT OF SIDE EFFECTS. METHOTREXATE I THINK CUASES ALOT ALSO.

> TARA

>

> Randall <krandall@...> wrote:

>

>

> > Your RA must not be very bad if you are afraid to take your meds.

> > You must decide which is better.....keeping things as they are

>now, and being

> > " safe " or taking a risk in order to feel better. When your RA gets

>bad

> > enough, you will jump at a chance to take the meds.

>

>Hi Pris,

>

>I don't really think that's fair to someone new to RA. At about 11

>months into it, I guess I am still new enough that I remember

>feeling EXACTLY the way she does, even though I was in horrible

>pain, was so fatigued that I was non-functional much of the time and

>had my hand curled up and frozen into a totally unusable claw.

>

>I was scared of the RA, but I was also very nervous about all the

>different things I read about the meds. Particularly, when there

>are still those out there promising cures through diet, etc. I

>suspect that with the level of fatigue I was experiencing, I wasn't

>thinking all that clearly, either.

>

>I think the two things that helped me most in feeling more in

>contol, and deciding what meds were right for ME to try were finding

>a rheumatologist that I really trusted, and who I felt I could

>really discuss things with, and then finding the good people on this

>BB. I'm glad no one at that time told me that my RA must not be

>very bad if I was nervous about the meds.

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Tara,

I am sorry you are feeling attacked and I totally understand how you feel. I

totally understand how this can be so overwhelming. I just found out three

months ago I am still reeling from it. Hang in there I have been where you are

been just take a deep breath and take it one step at a time.

Marsha

tara bowman <tara_bowman2003@...> wrote:

i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE

THEM NOT THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH COMMENTS FROM SOME

PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST FOUND OUT I HAVE RHUEMATOID

ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS. IM ON PREDNISONE AND PENTASA WHICH

CUASE ALOT OF SIDE EFFECTS. METHOTREXATE I THINK CUASES ALOT ALSO.

TARA

Randall <krandall@...> wrote:

> Your RA must not be very bad if you are afraid to take your meds.

> You must decide which is better.....keeping things as they are

now, and being

> " safe " or taking a risk in order to feel better. When your RA gets

bad

> enough, you will jump at a chance to take the meds.

Hi Pris,

I don't really think that's fair to someone new to RA. At about 11

months into it, I guess I am still new enough that I remember

feeling EXACTLY the way she does, even though I was in horrible

pain, was so fatigued that I was non-functional much of the time and

had my hand curled up and frozen into a totally unusable claw.

I was scared of the RA, but I was also very nervous about all the

different things I read about the meds. Particularly, when there

are still those out there promising cures through diet, etc. I

suspect that with the level of fatigue I was experiencing, I wasn't

thinking all that clearly, either.

I think the two things that helped me most in feeling more in

contol, and deciding what meds were right for ME to try were finding

a rheumatologist that I really trusted, and who I felt I could

really discuss things with, and then finding the good people on this

BB. I'm glad no one at that time told me that my RA must not be

very bad if I was nervous about the meds.

__________________________________________________

[Guest guest]

tara

medication is scary, especially in America where drugs are not subjected to

trials like they are in other countries (UK, France, etc, etc) everyday (or

nearly) there is some side effect being released of some drug that is

already on the market. It's totally understandable. Whomever said that her

illness must not be bad enough for her to not want to take her meds is

unsympathetic. Not everyone wants to jump on the drug bandwagon. I was

diagnosed -with Lupus at 18 and after 5 years of steroids and anti

inflammatory I said enough. I know treat with pro-bio tics and other natural

meds as I was tired of being a passive member of my treatment. Meds are a

wonderful thing, however they can be over/under used. It's also best to

consider if a doc is giving you this drug because he thinks it will help you

or because he's getting paid off by a drug company.

Research is always a wonderful thing.

cheers-

ginny

On 12/28/06, Marsha Hostetler <marshahostetler@...> wrote:

>

> Tara,

> I am sorry you are feeling attacked and I totally understand how you feel.

> I totally understand how this can be so overwhelming. I just found out three

> months ago I am still reeling from it. Hang in there I have been where you

> are been just take a deep breath and take it one step at a time.

> Marsha

>

>

> tara bowman <tara_bowman2003@... <tara_bowman2003%40>>

> wrote:

> i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO TAKE THEM

> NOT THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH COMMENTS FROM SOME

> PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST FOUND OUT I HAVE RHUEMATOID

> ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS. IM ON PREDNISONE AND PENTASA

> WHICH CUASE ALOT OF SIDE EFFECTS. METHOTREXATE I THINK CUASES ALOT ALSO.

> TARA

>

> Randall <krandall@... <krandall%40rdrcpa.biz>> wrote:

>

>

> > Your RA must not be very bad if you are afraid to take your meds.

> > You must decide which is better.....keeping things as they are

> now, and being

> > " safe " or taking a risk in order to feel better. When your RA gets

> bad

> > enough, you will jump at a chance to take the meds.

>

> Hi Pris,

>

> I don't really think that's fair to someone new to RA. At about 11

> months into it, I guess I am still new enough that I remember

> feeling EXACTLY the way she does, even though I was in horrible

> pain, was so fatigued that I was non-functional much of the time and

> had my hand curled up and frozen into a totally unusable claw.

>

> I was scared of the RA, but I was also very nervous about all the

> different things I read about the meds. Particularly, when there

> are still those out there promising cures through diet, etc. I

> suspect that with the level of fatigue I was experiencing, I wasn't

> thinking all that clearly, either.

>

> I think the two things that helped me most in feeling more in

> contol, and deciding what meds were right for ME to try were finding

> a rheumatologist that I really trusted, and who I felt I could

> really discuss things with, and then finding the good people on this

> BB. I'm glad no one at that time told me that my RA must not be

> very bad if I was nervous about the meds.

>

>

>

> __________________________________________________

>

[Guest guest]

>

>tara bowman

><<mailto:tara_bowman2003%40>tara_bowman2003@...>

>wrote: i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO

>TAKE THEM NOT THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH

>COMMENTS FROM SOME PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST

>FOUND OUT I HAVE RHUEMATOID ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS.

Hi

....a few thoughts from another viewpoint:

1- First, I will quote from the " American Family Physician " (the

journal of the American Academy of Family Physicians)---to address

the concept that simply because a health care provider writes a

prescription, one is not required to automatically fill or take said

prescription The patient does have a legitimate role in choosing

a medication...or choosing not to use a medication

" The decision to use methotrexate should be made by the patient and

the physician, who should weigh the risks and benefits of therapy.. "

2- a gentle reminder that methotrexate was originally a chemotherapy

drug--and in that case, the risk of side effects is usually

acceptable to save one's life....but, shouldn't a patient question

those same risks simply to lessen pain or stiffness ? ? Again from

" American Family Physician "

" Methotrexate is a toxic medication, but if it is dosed correctly and

monitored appropriately, its toxic effects can be minimized.7 These

effects are categorized as minor or major "

Minor toxic effects such as stomatitis, malaise, nausea, vomiting,

diarrhea, headaches and mild alopecia are not life threatening but

occur in 20 to 30 percent of patients. Other effects in this category

include fatigue, mood alteration, dizziness, fever, myalgias and

polyarthralgia.

Major toxic effects of methotrexate, such as hepatic, renal,

pulmonary and bone marrow disorders, occur less frequently than the

minor effects but may be life threatening.7 Patients should be warned

of the possible development of malignant hematologic diseases such as

non-Hodgkin's lymphoma during therapy. Warn patients that daily

dosing of this drug is fatal...

Now, this is just my own " two cents " , but, I do notice in this

forum, that some people receive an RA diagnosis, and begin

methotrexate right away.....obviously, that is their personal choice....

But, from the standpoint of choice, would it not also be reasonable

in some cases to wait, watch and see if symptoms persist or improve

over a few months ? ? Is anything really lost by trying to eat

healthy, exercise--even see a physical therapist if needed, maintain

or reach a healthy weight,, etc.....and see if things improve ?

I posted here a few weeks back about an arthritis " episode " I had

after the birth of my third child....I saw a rheumatologist who

wished to prescribe various meds.....I did my " homework " and

thoughtfully declined....I was breastfeeding my third (and last)

child, and did not wish to wean him for my personal

convenience.....after about one year, my symptoms improved....the

joint swelling and stiffness resolved, except in one wrist and elbow

with NO meds except 400 mg of ibuprofen daily....

In the 10+ years since, no new symptoms have occurred I have had

my elbow and wrist injected with cortisone a few times when they

bothered me too much.....a few times, the rheumatologist has politely

offered me an Rx for one of the DMARDs....but, after reviewing the

known and unknown potential side effects....I explained to her that I

just cannot take the risk of such significant side effects to improve

just two joints....So, it is my choice...if 200 mg of ibuprofen at

bedtime keeps me comfortable while sleeping and I am willing to

accept some limited range of motion in one elbow and one

wrist....then, that is OK for me....

PS just so no one thinks I have my head in the sand and am unaware of

how debilitating RA can be...my sister-in-law

developed JRA at age 2, did not " outgrow " it, and has had RA since

childhood, with significant problems....has taken everything from

gold (years ago) to methotrexate to Enbrel and still is facing total

knee replacement this year....

I'm just suggesting that as in all aspects of life, there are

different paths for different folks---and that no one should feel

they " have " to take a med until they also choose to take said meds......

leaping off my soapbox, and donning flame resistant suit,

[Guest guest]

Glad to hear that you are doing so well, Dianne!

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: scared to start my meds

>I just wanted to put my two cents in about this:)

> I was diagnosed in November with RA and was in horrible pain. Right now, I

> am on MTX, Pred. and Folic Acid and I feel fantastic. I have had no side

> effects at all. It is not all negative stuff with the meds. Just as I

> hated to

> start my 2 year old on Insulin injections when he was diagnosed with Type

> I

> Diabetes, I wasn't thrilled to have to take a bunch of pills everyday but

> you do

> what you have to do and what is best for you in the long run. Good Luck

> and

> don't be afraid!

> Dianne

[Guest guest]

Ginny,

What exactly do you mean by this: " medication is scary, especially in

America where drugs are not subjected to trials like they are in other

countries (UK, France, etc, etc) " ?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: scared to start my meds

> tara

> medication is scary, especially in America where drugs are not subjected

> to

> trials like they are in other countries (UK, France, etc, etc) everyday

> (or

> nearly) there is some side effect being released of some drug that is

> already on the market. It's totally understandable. Whomever said that her

> illness must not be bad enough for her to not want to take her meds is

> unsympathetic. Not everyone wants to jump on the drug bandwagon. I was

> diagnosed -with Lupus at 18 and after 5 years of steroids and anti

> inflammatory I said enough. I know treat with pro-bio tics and other

> natural

> meds as I was tired of being a passive member of my treatment. Meds are a

> wonderful thing, however they can be over/under used. It's also best to

> consider if a doc is giving you this drug because he thinks it will help

> you

> or because he's getting paid off by a drug company.

> Research is always a wonderful thing.

> cheers-

> ginny

[Guest guest]

In a message dated 12/28/06 10:16:22 AM, nancynfoster@... writes:

> I'm just suggesting that as in all aspects of life, there are

> different paths for different folks---and that no one should feel

> they " have " to take a med until they also choose to take said meds......>>>

>

>

, great letter.

I was on Methotrxate for two days.

I refused to take it any longer.....it made me feel strange and out of

control. I developed a huge red blotch under my eye!

I also refused to take Tegratol, an anti- convulsant, and I have refused to

take some meds for our " performers " potbellied pigs that were difficult for

them to swallow.

I think often, we as patients, do not ask enough questions or assert

ourselves enough with doctors.

If one is afraid of a medicine, perhaps it is lack of knowledge that is

causing that fear.

That is why these lists are great, but remember, YOU are paying the doctor!

Ask away...

Pris's ramblings.

[Guest guest]

I have a teen daughter that just started on meds for depression and she

started reading side effects. I grabbed the sheet and told her not to read it

because

it would just make her worry. I think you just have to let it go and hope for

the best.

Joy

Dianneis30@... wrote:

I just wanted to put my two cents in about this:)

I was diagnosed in November with RA and was in horrible pain. Right now, I

am on MTX, Pred. and Folic Acid and I feel fantastic. I have had no side

effects at all. It is not all negative stuff with the meds. Just as I hated to

start my 2 year old on Insulin injections when he was diagnosed with Type I

Diabetes, I wasn't thrilled to have to take a bunch of pills everyday but you do

what you have to do and what is best for you in the long run. Good Luck and

don't be afraid!

Dianne

[Guest guest]

,

It's true that RA patients must make their own decisions. But good

physicians make recommendations based on the available scientific evidence.

What they prescribe, if anything at all, is what they believe is most likely

to produce the best possible outcome for their patients. Of course, patients

are absolutely free to reject the advice of their physicians.

As it applies to RA, the watchful waiting/conservative treatment approach

(the " pyramid " ) has been shown to be inferior to immediate institution of

DMARDs. Since there is no way to predict who will develop more serious

disease and because the majority of RA patients do not do well on NSAIDs or

nondrug therapies alone, physicians prescribe DMARDs from the start to try

to prevent damage, arrest the development of more serious disease, and to

induce remission - both drug-maintained and, for the very fortunate,

(eventually) drug-free.

Irreversible damage can and often does occur very early in RA. There is also

thought to be a possible " window of opportunity " in early RA when DMARDs may

positively affect the entire course of the disease. Here's a very recent

news summary of some important RA research on this topic:

November 2006

" Early Aggressive Treatment May Alter Course Of Rheumatoid Arthritis " :

http://www.medicalnewstoday.com/medicalnews.php?newsid=56506

It's true that methotrexate was originally used as a chemotherapy

treatment - and it still is. But the amounts used to treat RA are far, far

lower than in chemotherapy regimens (5-25 mg/week versus 5000 mg/week*1). In

the treatment of RA, the efficacy/safety ratio of methotrexate is extremely

favorable.

Serious side effects may occur, but they are not very likely to. " ... the

efficacy, effectiveness, safety, tolerability and benefit/risk of

methotrexate may be among the most favourable available for any drug for any

chronic disease at this time. " *2

In 2004, it was estimated that at least 500,000 people worldwide were using

methotrexate for rheumatoid arthritis.*3 Several studies have shown an

increased life expectancy for RA patients who use methotrexate and/or the

anti-TNF biologics. Methotrexate is a very good, widely-used DMARD.

If, so far, you are beating the averages without DMARD treatment, that's

great. It's lucky. But your rheumatologist would be remiss if she hadn't

offered you DMARDs. She can't take that chance. You can, but she can't. She

has to go with the odds.

The odds are that untreated RA will do much more damage to a patient than

DMARD treatment. The odds are that early, aggressive treatment leads to

significantly better outcomes than either no treatment or DMARD-free

treatment.

I agree that, for optimal health, people should do all the following common

sense things for themselves: stop smoking or abusing alcohol or other drugs,

maintain a healthy weight, exercise regularly, eat a healthy diet, and keep

stress to a minimum. But even people who do all of these things (and those

who always have) can still have very serious disease that requires DMARD

therapy.

*Sources:

1. 2005; " Low-Dose Methotrexate: A Mainstay in the Treatment of Rheumatoid

Arthritis " :

http://pharmrev.aspetjournals.org/cgi/content/full/57/2/163

2. 2006; " Should aggressive therapy for rheumatoid arthritis require early

use of weekly low-dose methotrexate, as the first disease-modifying

anti-rheumatic drug in most patients? " :

http://rheumatology.oxfordjournals.org/cgi/content/full/45/5/497

3. 2004; " Methotrexate Metabolism and Its Relation to Clinical Effects: A

Primer " :

http://www.medscape.com/viewprogram/3302

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: scared to start my meds

>

>>

>>tara bowman

>><<mailto:tara_bowman2003%40>tara_bowman2003@...>

>>wrote: i only was looking for aDVISE ON MY MEDS BECUASE IM SCARED TO

>>TAKE THEM NOT THAT I DONT WANT TO TAKE THEM. IM GETTING SOME HARSH

>>COMMENTS FROM SOME PEOPLE SO MAYBE THIS WASNT A GOOD IDEA. I JUST

>>FOUND OUT I HAVE RHUEMATOID ARHTRITIS BUT I ALSO HAVE ULCERATIVE COLITIS.

>

> Hi

> ...a few thoughts from another viewpoint:

> 1- First, I will quote from the " American Family Physician " (the

> journal of the American Academy of Family Physicians)---to address

> the concept that simply because a health care provider writes a

> prescription, one is not required to automatically fill or take said

> prescription The patient does have a legitimate role in choosing

> a medication...or choosing not to use a medication

>

> " The decision to use methotrexate should be made by the patient and

> the physician, who should weigh the risks and benefits of therapy.. "

>

> 2- a gentle reminder that methotrexate was originally a chemotherapy

> drug--and in that case, the risk of side effects is usually

> acceptable to save one's life....but, shouldn't a patient question

> those same risks simply to lessen pain or stiffness ? ? Again from

> " American Family Physician "

>

> " Methotrexate is a toxic medication, but if it is dosed correctly and

> monitored appropriately, its toxic effects can be minimized.7 These

> effects are categorized as minor or major "

>

> Minor toxic effects such as stomatitis, malaise, nausea, vomiting,

> diarrhea, headaches and mild alopecia are not life threatening but

> occur in 20 to 30 percent of patients. Other effects in this category

> include fatigue, mood alteration, dizziness, fever, myalgias and

> polyarthralgia.

>

>

> Major toxic effects of methotrexate, such as hepatic, renal,

> pulmonary and bone marrow disorders, occur less frequently than the

> minor effects but may be life threatening.7 Patients should be warned

> of the possible development of malignant hematologic diseases such as

> non-Hodgkin's lymphoma during therapy. Warn patients that daily

> dosing of this drug is fatal...

>

> Now, this is just my own " two cents " , but, I do notice in this

> forum, that some people receive an RA diagnosis, and begin

> methotrexate right away.....obviously, that is their personal choice....

>

> But, from the standpoint of choice, would it not also be reasonable

> in some cases to wait, watch and see if symptoms persist or improve

> over a few months ? ? Is anything really lost by trying to eat

> healthy, exercise--even see a physical therapist if needed, maintain

> or reach a healthy weight,, etc.....and see if things improve ?

>

> I posted here a few weeks back about an arthritis " episode " I had

> after the birth of my third child....I saw a rheumatologist who

> wished to prescribe various meds.....I did my " homework " and

> thoughtfully declined....I was breastfeeding my third (and last)

> child, and did not wish to wean him for my personal

> convenience.....after about one year, my symptoms improved....the

> joint swelling and stiffness resolved, except in one wrist and elbow

> with NO meds except 400 mg of ibuprofen daily....

>

> In the 10+ years since, no new symptoms have occurred I have had

> my elbow and wrist injected with cortisone a few times when they

> bothered me too much.....a few times, the rheumatologist has politely

> offered me an Rx for one of the DMARDs....but, after reviewing the

> known and unknown potential side effects....I explained to her that I

> just cannot take the risk of such significant side effects to improve

> just two joints....So, it is my choice...if 200 mg of ibuprofen at

> bedtime keeps me comfortable while sleeping and I am willing to

> accept some limited range of motion in one elbow and one

> wrist....then, that is OK for me....

>

> PS just so no one thinks I have my head in the sand and am unaware of

> how debilitating RA can be...my sister-in-law

> developed JRA at age 2, did not " outgrow " it, and has had RA since

> childhood, with significant problems....has taken everything from

> gold (years ago) to methotrexate to Enbrel and still is facing total

> knee replacement this year....

>

> I'm just suggesting that as in all aspects of life, there are

> different paths for different folks---and that no one should feel

> they " have " to take a med until they also choose to take said meds......

>

> leaping off my soapbox, and donning flame resistant suit,

>

[Guest guest]

Hi,

I actually agree with all that you wrote However, ultimately,

each patient must make their own choices, based

on what they can tolerate, can accept and can live with.....

I understand the current thinking behind the early and aggressive

treatment of RA. In my own case, I have never actually been

diagnosed with RA....the rheumatologist believes I had an immune

system reaction during my third pregnancy--I had an unusual case of

preterm labor (baby born healthy, separate story!), followed by

thyroiditis and an " arthritis episode " after the birth of my

son.....My bloodwork remains normal......joint changes show on xray

in my elbow and wrist, but, no where else in my body...and I do not

have the fatigue, morning stiffness and symmetrical joint problems

that would lead to a clinical diagnosis of RA....obviously, I do have

" something " , but, without a clear diagnosis, I did not wish to take

DMARDs....I have lived an active and healthy life with these problems

since 1995, without much medical intervention My rheumatologist

states that I really don't " fit " any exact diagnostic label--but,

also tells me to be grateful to be unusual, as full-blown RA is not a

diagnosis to wish for She also tells me that I am at higher risk

for true RA or other problems in the future...and I understand

that...but, I also look at it is a situation where.... " it doesn't

happen until it happens " ......life is always about choices (I tell my

three children that 50 times a week ! )....if I were a tennis player

or a surgeon or a musician....my elbow problem would be a

problem...but, for me, right now, it is OK

You give sound, referenced based advice, backed up with excellent

research articles ( I do the same for another forum, for parents of

children who have or had Kawasaki Disease ).....and do a great job on

this forum I simply wished to offer the perspective of someone

with atypical disease choosing an atypical path

best,

nancy

>,

>

>It's true that RA patients must make their own decisions. But good

>physicians make recommendations based on the available scientific evidence.

>What they prescribe, if anything at all, is what they believe is most likely

>to produce the best possible outcome for their patients. Of course, patients

>are absolutely free to reject the advice of their physicians.

>

>As it applies to RA, the watchful waiting/conservative treatment approach

>(the " pyramid " ) has been shown to be inferior to immediate institution of

>DMARDs. Since there is no way to predict who will develop more serious

>disease and because the majority of RA patients do not do well on NSAIDs or

>nondrug therapies alone, physicians prescribe DMARDs from the start to try

>to prevent damage, arrest the development of more serious disease, and to

>induce remission - both drug-maintained and, for the very fortunate,

>(eventually) drug-free.

[Guest guest]

I

> -I know a number of physicians socially of

> > whom I think very highly (not rheumatologists, but, an ob-gyn, an

> > adult cardiologist, an anesthesiologist, and a pediatric

> > cardiologist) --I expect they are very well versed on the real and

> > potential side effects of prescription meds--and they all feel that

> > ALL meds are risky and that we, the general public, are woefully

> > under informed as to the very real long-term risks.... and in their

> > personal lives take as few meds as possible.... personal lives

>

They ALL feel this way?

And take " as few meds as possible " ?

I find this hard to believe, after talking to my brother, who is a doctor.

" ALL meds risky " ?

Well, even salt (essential to survive) can kill a person. I would think a

doctor takes risk in perspective, as in the PDRs, (percentages) relates to

medicines in terms of HOW risky.

I think your post is misleading. It is a generalization.

Just my harebrained 2 cents!

Pris

[Guest guest]

Maybe the information sheets should be printed in Latin. That way, we

wouldn't know what to expect or fear. That would work, wouldn't it? LOL

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Re: scared to start my meds

>I have a teen daughter that just started on meds for depression and she

> started reading side effects. I grabbed the sheet and told her not to

> read it because

> it would just make her worry. I think you just have to let it go and hope

> for the best.

> Joy

>

> Dianneis30@... wrote:

> I just wanted to put my two cents in about this:)

> I was diagnosed in November with RA and was in horrible pain. Right now, I

> am on MTX, Pred. and Folic Acid and I feel fantastic. I have had no side

> effects at all. It is not all negative stuff with the meds. Just as I

> hated to

> start my 2 year old on Insulin injections when he was diagnosed with Type

> I

> Diabetes, I wasn't thrilled to have to take a bunch of pills everyday but

> you do

> what you have to do and what is best for you in the long run. Good Luck

> and

> don't be afraid!

> Dianne

[Guest guest]

At 10:12 PM 12/28/2006, you wrote:

>Maybe the information sheets should be printed in Latin. That way, we

>wouldn't know what to expect or fear. That would work, wouldn't it? LOL

---or look at it this way---I know a number of physicians socially of

whom I think very highly (not rheumatologists, but, an ob-gyn, an

adult cardiologist, an anesthesiologist, and a pediatric

cardiologist) --I expect they are very well versed on the real and

potential side effects of prescription meds--and they all feel that

ALL meds are risky and that we, the general public, are woefully

under informed as to the very real long-term risks.... and in their

personal lives take as few meds as possible.....interesting ? ?

" knowledge gives power to the individual to make his/her best choices "

nancy

[Guest guest]

But do any of those physicians have RA or other diseases?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: scared to start my meds

> At 10:12 PM 12/28/2006, you wrote:

>

>>Maybe the information sheets should be printed in Latin. That way, we

>>wouldn't know what to expect or fear. That would work, wouldn't it? LOL

>

> ---or look at it this way---I know a number of physicians socially of

> whom I think very highly (not rheumatologists, but, an ob-gyn, an

> adult cardiologist, an anesthesiologist, and a pediatric

> cardiologist) --I expect they are very well versed on the real and

> potential side effects of prescription meds--and they all feel that

> ALL meds are risky and that we, the general public, are woefully

> under informed as to the very real long-term risks.... and in their

> personal lives take as few meds as possible.....interesting ? ?

>

> " knowledge gives power to the individual to make his/her best choices "

>

> nancy

[Guest guest]

----- Original Message -----

From: " " <nancynfoster@...>

> ALL meds are risky and that we, the general public, are woefully

> under informed as to the very real long-term risks.... and in their

> personal lives take as few meds as possible.....interesting ? ?

This to me goes right along with the famous " you're taking too many meds,

you should give up some of them " said by well meaning friends or family.

Well, if you're taking medicine to counteract other medicine side effects, I

can see the point. But I have numerous medical problems which is why I take

so much medicine. I'm miserable without taking my medicine. There is a

reason why I'm taking each and every drug, and the quality of my life would

decrease without it. Most people don't take medicine they don't need (aside

from elderly patients who are on too many medicines because they're taking

medicine to fix side effects from other meds, or a few people who want

antibiotics for a splinter). No one wants to spend $40 a month on medicine

they don't need which is why many people stop taking medicine that they

often do need. " Well, I felt ok and it's expensive. " .

Darcy

[Guest guest]

In a message dated 12/29/06 6:17:40 AM, nancynfoster@... writes:

> we should want to learn MORE

> about any meds prescribed for us or our family members...not LESS as

> Dennis suggests >>>>>>

>

That is why I suggest everyone buy a PDR (Physicians Desk Reference) or a

similar book.

It never hurts to look up your drug and check the side effects or

interactions.

A doctor may not know exactly what other meds you are taking. None of us is

perfect, especially with the foggy , unreliable memories that RA seems to dance

with....

I say hedge your bet, lol!

Pris