Re: scared to start my meds

[Guest guest]

In a message dated 12/27/06 12:15:17 PM, tara_bowman2003@... writes:

> my name is tara bowman and my docter gave me a prescrioption for

> methotrexate to take for rhuematoid arthritis. im so scared to take the 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.

All meds effect people differently.

In order to get proper treatment, you may have to try a variety of drugs.

But nothing ventured, nothing gained..

Good luck,

Pris

[Guest guest]

Tara, it's normal to be scared at first. RA is a scary diagnosis. Try to think

of the medicine as helping to correct an imbalance in your body. Methotrexate

has been used for a very long time to treat RA. It is regarded as safe. Sure,

all medicines have side effects, even aspirin, even vitamins. However, if your

dr has prescribed it, it's b/c he/she feels that the benefits outweigh any

possible risks. If you do have side effects, or if the mtx doesn't work, you

can try something else. If you have questions about the mtx, schedule a follow

up with your dr or talk to your pharmacist. Sometimes it can help just by

telling them what you're worried about. Best, Kate F

tara bowman <tara_bowman2003@...> wrote: my name is tara bowman

and my docter gave me a prescrioption for methotrexate to take for rhuematoid

arthritis. im so scared to take the meds. i also suffer from

dysgammglobulinemia. with is an immune deficiency. i could use some help here

please. anyone out there take methotrexate that can tell me how i will feel.

tara

csigal04 <csigal04@...> wrote:

Hello, my husband as just found out that he has RA and Lupus. He's not

taking it very well, he's at the begining stages where he just got on

medication. The doctor told him that it would take around 2 months for

the medicine to kick in. He complains of hurting, everyday it is

always something. I can't empathize what he is going through. I try to

be uplifting and encouraging but I don't feel that I'm saying the

right things. We also have an 8 month old daughter, which he is

concerned that she too will get an autoimmune disease. He wants to get

her checked out, but from what I have read that children won't usually

get it until puberty. I have also suggested that he get in touch with

a support group, but he's not really warming up the idea. I would

appreciate any advise from the group.

Thank you.

__________________________________________________

[Guest guest]

Hi Tara,

Lots of people take Mtx (short for Methotrexate) with no problem at

all, and it works well for them. Some people do have uncomfortable

side effects from it, and I was one of those. The good news is that

even if you do have uncomfortable side effects, there are lots of

things the doctor can do to make it better, and some things you can

do too. Some people find that taking it right before bed allows

them to sleep through the worst of the side effects. I my case, it

takes a little longer for the side effects to set in, so I take it

late morning so that when it does hit (about 12 hours later for me)

I'm in bed.

Another thing that most docs do is to prescribe folic acid to take

daily while you are on Mtx. This helps control side effects too.

In my case, that wasn't enough, and I felt like I had the flu for

about 24 hours after taking the Mtx, with chills, muscle aches and

severe fatigue. The doctor added a dose of Leucovorin (folinic

acid) to take 12 hours after I take my Mtx. That helped enormously,

and switching from the pill form to the injectable form helped even

more.

The other thing is that the side effects tend to be worst in the

beginning, while your body is getting used to it. I still get a

little more tired than usual for 24 hours after I take it, but it

really isn't much of a problem any more.

Another thing to remember is that you need to have regular bloodwork

done to check on your blood count and liver function while on Mtx.

If your counts aren't good, reducing the dose or stopping the Mtx

usually puts things right again without any further problems, but it

important to stay on top of it.

At very worst, even if you DO have bad side effects, (and remember,

more people DON'T have bad side effects than do) there are other

drugs available that could work for you too. The worst part of this

first year with RA for me has been trying one drug after another to

find a combination that both works for me and is tolerable. It

requires a lot of patience!<g>

> Hello, my husband as just found out that he has RA and

Lupus. He's not

> taking it very well, he's at the begining stages where he just got

on

> medication. The doctor told him that it would take around 2 months

for

> the medicine to kick in. He complains of hurting, everyday it is

> always something. I can't empathize what he is going through. I

try to

> be uplifting and encouraging but I don't feel that I'm saying the

> right things. We also have an 8 month old daughter, which he is

> concerned that she too will get an autoimmune disease. He wants to

get

> her checked out, but from what I have read that children won't

usually

> get it until puberty. I have also suggested that he get in touch

with

> a support group, but he's not really warming up the idea. I would

> appreciate any advise from the group.

>

> Thank you.

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Tara!

I just started Methotrexate yesterday (7.5 mg) and the only side effects was a

TERRIBLE headache and nausea for about 24hrs. This is my first dose so I don't

know if it is going to happen everytime I take it, but all in all I would deal

with the headache and nausea once per week if this drug works for me. I did try

asulfadine, but only lasted 2 days on that because it hurt my stomach so bad. I

also take Plaquenil, but I don't know yet if it is doing anything (I have been

on it for about 2 months with no improvement in my symptoms to date). I would

at least try the medication and see what happens. I think that it is far

scarier to think about what we will end up like if we don't find a medicine that

works, and deal with the side effects as they happen.

Wishing you the best,

Lori

Re: [ ] scared to start my meds

Tara, it's normal to be scared at first. RA is a scary diagnosis. Try to think

of the medicine as helping to correct an imbalance in your body. Methotrexate

has been used for a very long time to treat RA. It is regarded as safe. Sure,

all medicines have side effects, even aspirin, even vitamins. However, if your

dr has prescribed it, it's b/c he/she feels that the benefits outweigh any

possible risks. If you do have side effects, or if the mtx doesn't work, you can

try something else. If you have questions about the mtx, schedule a follow up

with your dr or talk to your pharmacist. Sometimes it can help just by telling

them what you're worried about. Best, Kate F

tara bowman <tara_bowman2003@...> wrote: my name is tara bowman and my

docter gave me a prescrioption for methotrexate to take for rhuematoid

arthritis. im so scared to take the meds. i also suffer from

dysgammglobulinemia. with is an immune deficiency. i could use some help here

please. anyone out there take methotrexate that can tell me how i will feel.

tara

csigal04 <csigal04@...> wrote:

Hello, my husband as just found out that he has RA and Lupus. He's not

taking it very well, he's at the begining stages where he just got on

medication. The doctor told him that it would take around 2 months for

the medicine to kick in. He complains of hurting, everyday it is

always something. I can't empathize what he is going through. I try to

be uplifting and encouraging but I don't feel that I'm saying the

right things. We also have an 8 month old daughter, which he is

concerned that she too will get an autoimmune disease. He wants to get

her checked out, but from what I have read that children won't usually

get it until puberty. I have also suggested that he get in touch with

a support group, but he's not really warming up the idea. I would

appreciate any advise from the group.

Thank you.

__________________________________________________

[Guest guest]

> 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]

I understand your reluctance, at least in hindsight of my own

experiences. I was on MTX for 5 years before I found out that folic

acid would take away the sick feeling I got, and that it was the MTX

that was causing it. I read some of the phamacy drug info when I

first started taking the medication, the only one that stood out was

to avoid people with infectious diseases. Which is a joke, because I

work in a welfare office with a staff of MediCal workers. I was

always in with sick clients, and getting sick. I didn't know about

folic acid, until I when to Rheumy the first time. Trust me after 5

years without it, I know how much folic acid helps.

My advice, take the medication and give it time to work (up to 12

weeks). If you think you are having a bad reaction to MTX or any RA

drug, call your doctor and/or your pharmacist. If you are scared of

the side effects of the drugs, think of the side effects of RA: Bone

destruction, joint swelling/pain, loss of mobility, and those of the

easy ones to deal with. I've had a couple major side effects from

taking RA drugs, so I've earned this view the hard way. I will still

take the RA drugs and keep looking for the next new miracle drug.

Oh, and about Pris's comment, it really isn't flippant. It's just

very forthright. 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. So, I for one, understand what she was

trying to say.

[Guest guest]

--- In , " cynthiadew1 " <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. So, I for one, understand what she was

> trying to say.

The problem with that analogy is that we should eventually see SOME

benefit from our RA drugs. (if not, it's probably time to try

something different<g>) If you're RA is under good control, you

may experience little or no pain, and it's very important to take

the medication anyway.

I take two kinds of migraine meds. The first, Depakote, is a

preventative, which I have to take every day, whether I have a

headache or not. That, I suppose could be equated to our DMARDS,

though as much as it feels like it in the moment, a migraine can't

kill you. The second is what I take when I actually GET a

migraine. In my case, it's Imitrex, either in a pill or nasal spray

(which for me works faster than the shots) If we were going to draw

an analogy between RA and Migraines, that would equate to whatever

we take for break-through pain.

As an aside, I hope you know that migraine meds work best if you

DON'T wait for it to get that bad. You really should take your meds

at the first signs of a migraine for best results.

In one way, Migraines and RA _are_ alike, that is usually best

treated by a specialist. I was on one med after another without any

real relief from my migraines until I switched to a new PCP, who

immediately referred me to a neurologist. (the old PCP had never

even mentioned the idea of a neurologist) The neurologist had me

straightened out in no time. I worry when I occasionally see people

on this board who are being treated for RA by a PCP. They really

need to get a referal to a good rheumatologist. IMO with RA, it's

not " just " pain, the stakes are just too high to continue being

treated by someone who is not an expert unless there are no other

options.

[Guest guest]

Hi Dennis, you wrote:

> Investigate the meds and their

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

It seems to me that's exactly what she was doing... she just wanted

some reassurance.

[Guest guest]

--- In , 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

Hi Tara,

Don't be turned off by the few people who are a bit " crusty " . There

are lots of very supportive people here too. Some people in general

have a hard time taking the perspective of others. I think

particularly in the case of people who have been dealing with this

disease for a long time, it can be hard to remember how overwhelming

it feels to first learn about RA. (or any other serious, chronic

disease)

As I said in my initial post, and Kathe and several others have said

too, Mtx definitely _CAN_ have side effects, but most are mild,

manageable and/or reversible. It is considered one of the safer RA

drugs. And the bottom line is that the disease _IS_ much more

dangerous than the drugs used to treat it, pain aside.

Also, if you don't feel confident in the advice your current doc is

giving you, you might want to consider at least getting a second

opinion, if not switching docs. As I mentioned, I think one of the

most important things for me, when I was first dx'd, was finding a

rheumatologist that I really trusted and felf comfortable with.

[Guest guest]

Do remember, though, that the studies show that you can have a lot

of damage to your joints within the first year or two of getting

RA. That's why it is strongly suggested to treat RA early and

aggressively. You can also have damage to your joints without a lot

of pain or obvious inflamation if you aren't on drugs to control

it. Once your joints are damaged, there is no going back.

I can certainly sympathize with worries over a new dx and starting

meds, but it's REALLY important to get past that and start

appropriate treatment.

> >

> > > 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,

All meds should be thoroughly investigated and an informed decision made

between you and your doctor, I was on MTX both the oral pills and injectable.

I had a horrible time with both. I had most if not all of the common side

effects no matter what other drug I was given to counter act the side effects

of MTX. My list was: constant vomiting, nausea and diarrhea, dizziness,

headache, mouth sores, eye sores, throat sores, genitalia sores, severe fatigue

and the kicker was drug induced pneumonitis which my rheummy missed cause he

was too busy looking at my lab results and paid NO attention to my complaints.

He just kept saying up my folic acid and then added leukovorin, nexium,

phenergan, compazine and other drugs.

My GP saved my life cause I would have surely ended up in a hospital

somewhere listening to my old rheummy. I will never take MTX again no matter

how

severe my symptoms are. Quality of life means more to me than spending my life

on the bathroom floor cause that is as far away from the toilet as I can get

due to side effects.

Some people do well on MTX and others prefer to suffer the side effects for

relief from pain and stiffness. For me the side effects were far worst than

the reason for the meds. Especially when there are choices of meds.

Good luck

Toni

[Guest guest]

Toni,

Since the MTX is not an option for you, are you taking something else for your

RA? How long have you been diagnosed?

Meg (a newbie here)

__________________________________________________

[Guest guest]

I think the mosat important part of your post was " Especially when

there are choices of meds. "

There is no way of predicting which drugs will work for a specific

person and which drugs won't until you try them. That is obvious if

you spend any time reading this BB. What EVER drug is mentioned,

there will be a flurry of people saying they had a miserable time

with it, another bunch saying it didn't work with it, and still

another group saying it was a miracle drug for them. There's no way

to know which group you are in without trying.

Now, the fact that your rheumatologist wouldn't LISTEN to your

feedback concerning very bad side effects is more a problem with the

doc than the med, IMO. That goes back to the first thing I said to

Tara... find a rheumatologist you trust and feel comfortable talking

to.

My first try was Plaquenil, which is supposed to have the LEAST

amount of side effects, and for me it was miserable. After 2 days I

called my doc, and she had me stop taking it. With Mtx, though I

did have some unpleasant side effects, we were able to work out a

solution that is pretty liveable, so I'm still on it. If we hadn't.

I'm sure she would have taken me off that too.

>

> Tara,

> All meds should be thoroughly investigated and an informed

decision made

> between you and your doctor, I was on MTX both the oral pills

and injectable.

> I had a horrible time with both. I had most if not all of the

common side

> effects no matter what other drug I was given to counter act the

side effects

> of MTX. My list was: constant vomiting, nausea and diarrhea,

dizziness,

> headache, mouth sores, eye sores, throat sores, genitalia sores,

severe fatigue

> and the kicker was drug induced pneumonitis which my rheummy

missed cause he

> was too busy looking at my lab results and paid NO attention to

my complaints.

> He just kept saying up my folic acid and then added leukovorin,

nexium,

> phenergan, compazine and other drugs.

>

> My GP saved my life cause I would have surely ended up in a

hospital

> somewhere listening to my old rheummy. I will never take MTX

again no matter how

> severe my symptoms are. Quality of life means more to me than

spending my life

> on the bathroom floor cause that is as far away from the toilet

as I can get

> due to side effects.

>

> Some people do well on MTX and others prefer to suffer the side

effects for

> relief from pain and stiffness. For me the side effects were far

worst than

> the reason for the meds. Especially when there are choices of

meds.

>

> Good luck

>

> Toni

>

>

>

[Guest guest]

>

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 take as few meds as possible too... That just happens to be a lot,

because of my RA.<g>

> 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.

Even water, in too large quantities can kill a person through

electrolyte imbalance.

I think it's more accurate to say all drugs (and medical procedures)

carry risks, but if prescribed and taken correctly, the benefits

should outweigh the risks. Certainly a bone marrow transplant is a

high risk procedure. But when the alternative for a leukemia victim

is certain death, the odds start to look much better.

Likewise, in my case, the choices were, excrutiating pain (I was

already experiencing that) and the likelihood of future disability

and deformation and the possibility of early death due to

heart/lung/vascular problems. That versus RA drugs and a pretty good

chance at not only a better quality of life, but a longer one too.

Hmmm. It wasn't too hard for me to choose.<g>

[Guest guest]

-Toni,

I have missed most of this thread as I moved and have been unpacking

rather than spending time on the computer...but I just read your

response below with much interest....I also feel that my life was

saved by my family dr after the Rheummy ignored me and my side

effects from MTX/Placquenel...he just kept giving me more MTX and

more drugs for all the side effects, (even after a 5 day stay in the

hospital over CHristmas last year with uncontrolled vomiting and

diarrhea) until I got to the point where I was being poisoned (the

family DRs words) by all the different meds that I was on.

He took me off of everything except my pain meds...but even those we

lowered to just what would barely keep me from writhing in pain and

let my body take a rest from all the toxins....then he started adding

in SOME of the more important meds that he felt I needed...and we

threw out a lot of the junk that the Rheummy had me on for the side

effects. THe results were amazing. I actually felt almost human again

after months of lying on the bathroom floor! We totally stopped the

MTX/Placquenel and he and I finally got the Rheummy to try Humira

which made a new woman out of me!

Sometimes I think that the Rheummys are so busy giving meds to

counteract the side effects that they forget that the patient can

actually be poisoned by all those meds!

Because of my move I will be changing Rheummys which I am looking

forward to...but I will really miss the family DR. that would pull up

a chair and sit down with me and actually LISTEN to what my symptoms

were and then work with me to try and get me back to feeling like I

could have a life again! I will always remember and be thankful to

that man, without him I would be dead or still on the bathroom

floor!! He is truly a " healer " not just a pill pusher as so many Dr's

can be! ........jenna

-- In , aclavern33@... wrote:

>

> Tara,

> All meds should be thoroughly investigated and an informed

decision made

> between you and your doctor, I was on MTX both the oral pills and

injectable.

> I had a horrible time with both. I had most if not all of the

common side

> effects no matter what other drug I was given to counter act the

side effects

> of MTX. My list was: constant vomiting, nausea and diarrhea,

dizziness,

> headache, mouth sores, eye sores, throat sores, genitalia sores,

severe fatigue

> and the kicker was drug induced pneumonitis which my rheummy

missed cause he

> was too busy looking at my lab results and paid NO attention to my

complaints.

> He just kept saying up my folic acid and then added leukovorin,

nexium,

> phenergan, compazine and other drugs.

>

> My GP saved my life cause I would have surely ended up in a

hospital

> somewhere listening to my old rheummy. I will never take MTX

again no matter how

> severe my symptoms are. Quality of life means more to me than

spending my life

> on the bathroom floor cause that is as far away from the toilet as

I can get

> due to side effects.

>

> Some people do well on MTX and others prefer to suffer the side

effects for

> relief from pain and stiffness. For me the side effects were far

worst than

> the reason for the meds. Especially when there are choices of

meds.

>

> Good luck

>

> Toni

>

>

>

[Guest guest]

These stories make me so sad... for you and for other people who

have had this terrible kind of treatment. But I'd like to point out

that this is not really the fault of the drugs themselves; it is the

fault of medical professionals not doing their job, prescribing

drugs inappropriately and not listening to their patients.

The hippocratic oath says " first, do no harm " . Prescribing multiple

meds without CAREFULLY examining why it is being done, and the

patient's reaction to those meds is certainly not living up to that

oath.

I know that some people live in areas where rheumatologists of any

sort are scarce, let alone good ones. I think if you were in one of

those areas, you did exactly the right thing, finding a PCP who

could help you sort through information and make educated choices.

For those who live in areas where there are more choices for

rheumatological care, I hope that they will choose their doc

carefully, and vote with their feet if they find themselves in the

hands of someone who won't listen to their concerns.

> >

> > Tara,

> > All meds should be thoroughly investigated and an informed

> decision made

> > between you and your doctor, I was on MTX both the oral pills

and

> injectable.

> > I had a horrible time with both. I had most if not all of the

> common side

> > effects no matter what other drug I was given to counter act

the

> side effects

> > of MTX. My list was: constant vomiting, nausea and diarrhea,

> dizziness,

> > headache, mouth sores, eye sores, throat sores, genitalia

sores,

> severe fatigue

> > and the kicker was drug induced pneumonitis which my rheummy

> missed cause he

> > was too busy looking at my lab results and paid NO attention to

my

> complaints.

> > He just kept saying up my folic acid and then added

leukovorin,

> nexium,

> > phenergan, compazine and other drugs.

> >

> > My GP saved my life cause I would have surely ended up in a

> hospital

> > somewhere listening to my old rheummy. I will never take MTX

> again no matter how

> > severe my symptoms are. Quality of life means more to me than

> spending my life

> > on the bathroom floor cause that is as far away from the toilet

as

> I can get

> > due to side effects.

> >

> > Some people do well on MTX and others prefer to suffer the side

> effects for

> > relief from pain and stiffness. For me the side effects were

far

> worst than

> > the reason for the meds. Especially when there are choices of

> meds.

> >

> > Good luck

> >

> > Toni

> >

> >

> >

[Guest guest]

>

> >

> 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

>

>

> Since I am a nurse, I buy the latest Nursing Drub book each year.

They can be found at any major bookstore and are easy to understand.

Debbie L

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[Guest guest]

I just want to add a little of my story.

I have long been an advocate for mentally ill people, as my husband and 2 of my

kids have very serious and profound mental illnesses and have trialed between

them every single psych med there is. Some have helped, some have been

HORRID....I was also a nurse, working ALzheimers, dementia and Hospice for

years.

I am not very " pro-med " but I am FAR FAR from " anti med "

What my advice ALWAYS is....be AWARE of potential risks, and weigh out the risks

vs the symptoms.

Many times my family HAS been given meds and DID experience side effects that

were far worse than the symptoms for which they were Rx'ed.

Use caution, be alert and aware. Be informed. ANd make decisions YOU can live

with.

When my RA was just starting, and I did not yet have a dx...pain mes were

withheld from me. My RA hit VERY hard and very fast and was very aggressive.

Very soon I was entirely dependant on others for every aspect of my daily

living. The air current in a room was more than I could tolerate without primal

screams erupting involuntarily from deep within me.

For a couple YEARS I was nearly mostly incoherant. I could usually NOT move at

all. I have 3 kids and a very ill husband. My husband has been very ill since

1990 due to combat related agent orange exposure and ptsd etc. My 18 yr old is

severely bipolar, autism spectrum, and major panic attacks and my 11 yr old has

cerebal palsy, atypical seizures and lost an eye this year due to an accident.

We have no extended family. I HAD to figure something out.

Yes, I heard horror stories about prednisone. I had been on mtx orally for

approx a year, and maybe it helped some, but....it was nowhere near enough.

A new rheumy offered me prednisone to start and Humira. Yes, I read all about

the meds and possible risks I was taking.

The prednisone did get me up and moving, out of bed, out of an electric scooter.

I am not sure if the mtx does much, not sure how much the huimra does, the

prednisone jump started me and I am now weaning down off of it to find out.

BUT for a few years I wished to die. I was useless and helpless and my family

needed care.

If you did not know I had been bedridden so long, you would never guess it right

now. Meanwhile I now can once again take care of my family and work to teach my

kids more and help them grow.

I know without a doubt not all meds work for all people..I know some meds can

harm some people. I have heard the bad things possible with prednisone, mtx and

Humira. But for me for now...those meds just gave me something I did not

have.....9 months and counting of functioning absolutely normal. And to my

delight I have no gastro complaints, nothing. How long will it last? I do not

know. WIll it turn against me sometime? Maybe. But my family needed me NOW.

Have I made a deal with the devil? Maybe.

BUT I also could get hit by lightening tomorrow, too.

I am lucky. I know I am lucky. What these meds gave me this last 9 months is

to me-----amazing, a miracle.

I wish everyone could have such a great response to meds.

Well, thats just my .02----for what it's worth. I weighed the possible risks,

the possible benefits and .....I took a gamble. BUT that might NOT be the

answer for anyone else. Only you can decide for yourself. How bad are your

symptoms?

what are you willing to risk?

[Guest guest]

I am also a nurse and yes, I also buy a drug book often (altho not EVERY year)

Any bookstore should have a range of books, usually paperback sized, usually

very easy to read and understand. Also in a wide range of prices.

You can also always type your med name into " google " and read what comes up when

you do that. SOme of the internet sites about meds can be helpful. I cannot

remember at the moment my personal favorites url.I think it is Rxlist.com or

something similar.

Also when you get a Rx, do read the list of side effects, precautions etc that

comes with it. There also should be a folded very LONG paper that comes with

your meds - the " insert " This is often more technical reading, but.....it can

contain very important and or useful information, as well.

If you do go pick up a drug handbook, you could also check into a small lay

persons " medical dictionary " that you could use to look up terms that you are

unfamiliar with.

[Guest guest]

I take a lot of meds too, sometimes I'm concerned about how it's affecting my

body, but I also know that they have been prescribed for a reason. I check

everything out on the web and I read the inserts that come with the

prescription. I also keep my drs informed of any changes that another dr may

make. When my rheumy put me on Imuran and I read that it's not good for the

liver, I called my hepatologist before I would take it. He allowed it, but only

if labs were done constantly to monitor any activity with my liver enzymes. My

rheumy wasn't real pleased about that, but too bad........he works for me.

Since I've had some issues/surgery with my eyes, when I was put on Plaquenil and

read up on it, I wouldn't start that either until my opthamologist ok'd it.

None of my drs want me to continue on Prednisone, but until something else

works, I'm staying on it, at least a low dose. Whenever I go off it, pain

returns, and I'm not going to live with pain if I don't have to., besides I need

to work in order to pay all these medical expenses.

Everyone has to decide for themselves what plan of action works best for them.

I've been very lucky, none of the meds that I take have made me sick or worsened

my condition. Both my brother and sister believe in holistic and/or natural

treatments, but for me ....... give me drugs ! Right now, I take Plaquenil &

Imuran for Lupus, Auto-Immune Hepatitis & RA, Ursodial for the PBC, Pripafenone

for atrial flutter, Methocabamol for muscle spasms, Advair Diskus for COPD,

Prednisone for EVERYTHING, Levoxyl for thyroid, Fosamax for the osteopina, and

as needed, Mirapex for restless leg. I do not take any vitamins because too

many times they interfer with the meds and I can only monitor so much before I

would go nuts. I have just started a weight loss program of my own and

hopefully will lose about 25 pounds that the " Predisone appetite " has helped me

gain.

My cardiologist recently changed my med from Atenolol to the Pripafenone. I'm

not happy about how it's working or what I've read about it. When I see him in

Jan. I'm going to 'tell' him that I want to go back on the Atenolol.

The most important thing is that we take an active role in our care. Take the

meds as prescribed, but know what you are taking and why, if you are concerned

about a drug, discuss it with your dr. He can't help you if he doesn't know

that you are worried. Be proactive when symptoms change or new ones develop.

Drs, are medical professionals, not God. If you aren't happy with your dr,

either tell him/her and try to resolve the issue, or get another one if you can.

Just my humble opinion.

Take care, and have a Healthy, Happy, New Year !

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

Just a woman of letters....

[Guest guest]

I don't remember how much I paid for the last one, to be honest. When

I web searched, many cost $49 or more. Don't think I paid that much

for mine. My current is Mosby's but I also have other kinds in the

past.

Debbie L

>

> How much are they and do we have to get a new one each year or are

there

> addendums?

>

> Dennis in Eastexas

> " It's not Rocket Surgery "

>

> [ ] Re: scared to start my meds

>

>

> >>

> >> Since I am a nurse, I buy the latest Nursing Drub book each year.

> > They can be found at any major bookstore and are easy to

understand.

> >

> > Debbie L

> >>

> >>

> >>

> >>

> >>

> >>

[Guest guest]

MOsbys is my favorite. I also have a very tiny one that fits very easily in my

pocket. and a much larger one that I leave on my bookshelf. I think one of

them was $12.99 at Borders? One might have been $3 at WalMart.

- In , " deebs87 " <dlohf@...> wrote:

>

> I don't remember how much I paid for the last one, to be honest. When

> I web searched, many cost $49 or more. Don't think I paid that much

> for mine. My current is Mosby's but I also have other kinds in the

> past.

>

> Debbie L

>

>

>

> >

> > How much are they and do we have to get a new one each year or are

> there

> > addendums?

> >

> > Dennis in Eastexas

> > " It's not Rocket Surgery "

> >

> > [ ] Re: scared to start my meds

> >

> >

> > >>

> > >> Since I am a nurse, I buy the latest Nursing Drub book each year.

> > > They can be found at any major bookstore and are easy to

> understand.

> > >

> > > Debbie L

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

[Guest guest]

Meg,

I was Dx'd in August of 2002. I am currently on no meds really speak of.

Due to insurance changes I had to see a new rheummy at the large medical

center here. She took one look at me and claimed I did not have RA....refused

to

refill any Rx's except for Lodine, did blood work and said we will see you in

a month to have injections in my hips for severe trocanter bursitis.

However, I got a call from my disability insurance and they were reviewing

my medical files and in the notes are references to lupus like syndrome as

well as positive RA-factor results.

So my hope is that I can see the other doctor in this practice or the new

one they are hiring. the one I waited many months to see is leaving.

Toni