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.

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.

becca44

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

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.

becca44

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?

Hi, I am currently (as of Sept 2006) using Betaseron. Before that was one year of Avonex and then five years of Copaxone.

My problem is, each flare is worse. I had a 3-day IVSM/prednisone taper last Oct. and another one last week. I noticed improvement almost immediately after last week's SM (very weak legs before and could barely walk), so that is good. My hope is to keep walking with my rollator or forearm crutches for as long as possible.

My fear is that with all of this medicine, I am destroying my body in addition to the MS. I guess I go back and forth, like so many of you. Fear that I'm not doing enough, followed by fear that I'm getting way too medicated. Ach!

I hear you on that Mary Ann. That's what I was afraid of doing IVSM every 3 months for 3 days for the last 6 years. My body was starting to rebel against the steroids. So far, I haven't shown any bone density problems from all the steroids, but I am sure it will show up.

I couldn't tolerate Copaxone. I am hoping that I get some relief with whatever I am on right now in this clinical trial.

Man, no kidding. It's a constant battle in my thoughts. Did I do this to myself somehow?? Did the chemicals do it? What about the combinations of all my meds? Has anyone even studied the combinations? Ugh, it seriously drives me buggy sometimes.

By the way, welcome, Azcoyote, I didn't even know that you have a name! I will call you MA.

Originally Posted by SallyC
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.

I don't think a study has been done on this AMN, but I have read conflicting reports from the Medical Profession about when or if to start a DMD.

I think it was the Mayo Clinic that has said A "wait and see" approach to the MS Meds is preferrable. The NMSS has stated "the sooner the better", to get on the approved DMDs.

PwMS are taking the bull by the horns and deciding for themselves, despite the fear within of, "are we doing enough and are we doing the right thing"??

I hope this cleared things up for you...NOT!

No worries, Sal, I'm just as confused as ever.