clinical trial for MS

[Clark5]

Is anyone in a clinical trial for MS?  There are a few out there, one that is a T-Cell vaccine, two are oral and one that pairs Copaxone with daily oral steroid use.
Just interested in peoples experiences.

[shoshin]

I am trying to get into a clinical trial for fingolimod (FTY720), which is an oral pill. Between the zillion tests and the scheduling snafus, the screening process is taking a long time. I wasn't looking for a trial. My neuro recommended I try it.

This trial has a placebo arm (33%), a prospect about which I am a lot less sanguine at this point (after two months of steady decline) then I was when I initially decided to try this. On the other hand, the early reports are pretty positive (no irreversible side effects, significantly more effective than the current DMDs at preventing relapses, some evidence that it may actually reduce neurodegeneration and enhance repair of MS damage).

Also, the first time I saw the MS neuro, he seemed to think that the current DMDs might not be that effective for me because I don't have a lot of acute inflammation or prominent relapses.

I don't know. Sometimes it seems like there's no obvious good choice. I'm not sure I'll ever know if I made a good choice.

sho

[doublevision1]

ps: Speaking of MS studies, Forbes reported on Tuesday that there have been positive results for a second Phase III study for Fampridine-SR.  This med seems to help with problems of muscle strength and walking ability in people with MS.  Application to the FDA will be made in Q1, 2009.  

[doublevision1]

When I was dx'ed last fall my neuro gave me info on 3 studies: Rebif New Formulation vs placebo; efficacy of combining Avonex and Copaxone;  and a natural history study, as an adjunct to the Avonex/Copaxone study.  

I declined all of them as I live about 450 kms from the research facility and being in a study involves monthly follow ups.  Winter was around the corner, I was overwhelmed by my dx, and did not want to make a commitment to be doing all that travel.

In hindsight I wish now that I had opted to do the Avonex/Copaxone study.  There is no placebo group in this study; participants are on one or the other, or both drugs.  I would have started treatment probably 2 months sooner and maybe even prevented my last relapse.  Also, in a study one gets very close monitoring.  Not that I can't see my neuro whenever I want, but being in a study I think would be reassuring in terms of knowing you are being closely watched and the researchers do take a particular interest in how you are doing.

At my last visit my neuro advised that if it turns out I can stay on Rebif (still don't know about the liver enzymes being a long term problem), I can join a study on combining Rebif and teriflunomide, an anti-inflammatory med.  I think I may do that.

As my MS specialist is also a researcher, he provides information on studies to patients.  I don't think it would have occurred to me to even ask about it, at least at the start of my disease.

There are hundreds of studies on MS being conducted around the world; you can find a list at the National Institutes of Health website.  Here's a link, hope it works:

clinicaltrials DOT gov/search/term=%22Multiple%20Sclerosis%20%22


db

[sllowe]

Thanks!

[av8rgirl]

I am in the Tovaxin Clinical Trial.   You can get information about what clinical trials are currently recruiting at clinicaltrials.gov  you can do a search for disease specific related trials.  

And to you answer SL's question, my neuro recommened that I look for a trial.  And when trials were brought to her attention, she would give me information on them.  

[sllowe]

I've often considered signing up! I read about them in the NARCOMS newsletter.  Just never discussed w/my Doc.

Leads me to another question w/these.  Do Docs recommend these? Anyone here bring the studies up to their Docs?

I too would like to hear about some experiences....

-SL