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Old 05-16-2007, 09:16 PM #1
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Hi Sally,

I've tried Avonex, Rebif and Copaxone. The first two contributed to my depression a LOT. I was miserable on them. Copaxone increased my pain and anxiety. I have been slowly getting worse in the past 4-5 years.

Today I signed up for Tysabri. I hope I do ok on it. If I do, I would like to stay on it for maybe two years, and then maybe switch to one of the newer meds when they start getting approved.

Campath is supposed to be another really good one according to my neuro. That's a once a year infusion and has had spectacular results compared to all the others. There's supposed to be a trial starting late this year (I think.)
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Old 05-16-2007, 10:40 PM #2
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I have tried A, C & R in that order. With A & R had such prob w/fevers that it wasn't worth it. I stayed on each for 6 months.

In between I tried C along with Imuran. As posted elsewhere today, C caused so much body dents that after a couple years I was taken off and stayed on the Imuran.

I stopped when I moved out here. Suffered through R in 2/06 thru 6/06. After 1st exacerbation in nearly 6 years. I took generic tylenol every 4 hours (yes I set an alarm) day and night to keep fever at bay on R.

After a year with several episodes that flared and recovered got doc to put me on Imuran in 12/06. I've still got intense hand pain that has not been relieved, yet.
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Old 05-16-2007, 11:24 PM #3
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Quote:
Originally Posted by ewizabeth View Post
Hi Sally,

I've tried Avonex, Rebif and Copaxone. The first two contributed to my depression a LOT. I was miserable on them. Copaxone increased my pain and anxiety. I have been slowly getting worse in the past 4-5 years.

Today I signed up for Tysabri. I hope I do ok on it. If I do, I would like to stay on it for maybe two years, and then maybe switch to one of the newer meds when they start getting approved.

Campath is supposed to be another really good one according to my neuro. That's a once a year infusion and has had spectacular results compared to all the others. There's supposed to be a trial starting late this year (I think.)
Congrats Wiz on the Tysabri!
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Old 05-17-2007, 10:47 AM #4
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Originally Posted by Av8rgirl View Post
Congrats Wiz on the Tysabri!
Thanks Cheryl,

The doctor was extremely disappointed with me dropping out of the CDP323 trial waiting list, but he'll get over it...

BTW, I sent you a PM.
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Old 05-17-2007, 12:44 PM #5
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I began the journey with Avonex. I was happy to be on that until my liver tests started coming back with elevated ALT and AST. Also, it wasn't helping to minimize lesions showing up on MRI.

I switched to Copaxone. I was really happy with that until I started (only recently) to notice the body dents. I've only been on it a year. It does appear to be doing the job it's supposed to do however, with regard to staving off exacerbations.

That said, I don't like that my choices are: 1. ruining my inside-body by damaging my liver, or 2. ruining my outside-body by creating deformity.

I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

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Old 05-17-2007, 01:19 PM #6
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Quote:
Originally Posted by Becca44 View Post
I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

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It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
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Old 05-17-2007, 01:37 PM #7
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Originally Posted by Becca44
I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

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It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.
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Old 05-17-2007, 03:26 PM #8
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Quote:
Originally Posted by SallyC View Post
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.
Oh, you said, "AMEN" my bad.


Is this true, Sal? I'm seriously thinking about it too. Can't do the interferons and I think C has messed me up. Have you seen an article that dealt specifically with this issue?
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Old 05-17-2007, 01:38 PM #9
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Quote:
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It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't
Ain't that the truth, hon??? Oy.

Thanks for the hug.

...and I'm going to follow MSAcorn's suggestion and look into imuran, see what that's all about.
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Old 05-17-2007, 02:37 PM #10
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Quote:
Originally Posted by ewizabeth View Post
Thanks Cheryl,

The doctor was extremely disappointed with me dropping out of the CDP323 trial waiting list, but he'll get over it...

BTW, I sent you a PM.
Yes you are right! He will get over it!

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