Re: Arava making me worse-anyone else? Amber C

[Guest guest]

Remember that everyone has their own reactions to medications, and I

don't want to scare anybody, but I had a TERRIBLE experience on Arava.

I was on it for almost two months. First month was ok- no pain

subsiding, but I was keeping food down, so it was an improvement!

Then I started my period, no big deal. Then it wouldn't stop. I

ended up having pelvic ultrasounds because my family doc suspected

cancer. Two days after that, I was in the ER in extreme pain,

exhausted, and bleeding out with a hemoglobin count below 6.0. The ER

doc, whose son had fibro and spondylitis, said he'd heard of women

having gynecological problems on Arava before. He did some research

while I sat on telemetry- turns out that in trials of this medication,

there was a statistical probability that women on Arava would develop

uterine bleeding, lesions, and so on. Evidently, many women ended up

having a DNC to stop the bleeding. He pulled the medical info they

send with Arava, and it was listed there as a possible side effect.

He took me off Arava and put me on prednisone and prescription iron.

Took a week to get my Hgb above 8.0, and since then its never been

above 9.0. It exacerbated my chronic disease anemia into full-blown

chronic anemia, and now I'm on prescription iron permanently.

Now, I know many folks on Arava who love it, and many who hate it.

For me, it was a nightmare, and put me back in square one trying to

build up my red blood cells and deal with my flagging immune system.

If your meds aren't working, talk to your rheumy. And if you think

you need a second opinion, get one.

Hope everyone feels better as soon as possible.

[Guest guest]

Fortunately for me I have already had a hysterectomy so I don't have

to worry about that part. Sorry to hear you have had such problems

from it. You just never know with any of this stuff.

Has your doctor ever done the wash out proceedure? If not I would

ask about doing it because Arava stays in your system for two years

after stopping it and maybe that would help bring your hemoglobin

numbers up? I don't know since I am not a doctor but just a

thought. You can look up Arava on www.drugs.com and it will talk

about the washout procedure under the drug. If this drug doesn't end

up working for me (which is doesn't seems like it) I have already

decided that I want the washout procedure because I just don't want

it hanging around in my body if it isn't going to work.

>

> Remember that everyone has their own reactions to medications, and I

> don't want to scare anybody, but I had a TERRIBLE experience on

Arava.

>

> I was on it for almost two months. First month was ok- no pain

> subsiding, but I was keeping food down, so it was an improvement!

> Then I started my period, no big deal. Then it wouldn't stop. I

> ended up having pelvic ultrasounds because my family doc suspected

> cancer. Two days after that, I was in the ER in extreme pain,

> exhausted, and bleeding out with a hemoglobin count below 6.0. The

ER

> doc, whose son had fibro and spondylitis, said he'd heard of women

> having gynecological problems on Arava before. He did some research

> while I sat on telemetry- turns out that in trials of this

medication,

> there was a statistical probability that women on Arava would

develop

> uterine bleeding, lesions, and so on. Evidently, many women ended

up

> having a DNC to stop the bleeding. He pulled the medical info they

> send with Arava, and it was listed there as a possible side

effect.

>

> He took me off Arava and put me on prednisone and prescription

iron.

> Took a week to get my Hgb above 8.0, and since then its never been

> above 9.0. It exacerbated my chronic disease anemia into full-blown

> chronic anemia, and now I'm on prescription iron permanently.

>

> Now, I know many folks on Arava who love it, and many who hate it.

> For me, it was a nightmare, and put me back in square one trying to

> build up my red blood cells and deal with my flagging immune

system.

>

> If your meds aren't working, talk to your rheumy. And if you think

> you need a second opinion, get one.

>

> Hope everyone feels better as soon as possible.

>

[Guest guest]

, good point.

I'm also wondering if Amber did the cholestyramine washout procedure.

Not an MD

On Thu, Jan 29, 2009 at 5:09 PM, ktandtm <ktandtm@...> wrote:

> Fortunately for me I have already had a hysterectomy so I don't have

> to worry about that part. Sorry to hear you have had such problems

> from it. You just never know with any of this stuff.

>

> Has your doctor ever done the wash out proceedure? If not I would

> ask about doing it because Arava stays in your system for two years

> after stopping it and maybe that would help bring your hemoglobin

> numbers up? I don't know since I am not a doctor but just a

> thought. You can look up Arava on www.drugs.com and it will talk

> about the washout procedure under the drug. If this drug doesn't end

> up working for me (which is doesn't seems like it) I have already

> decided that I want the washout procedure because I just don't want

> it hanging around in my body if it isn't going to work.

>

>