This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,

Just a quick word on the Campath trials. The one year report was sent out to either he FDA or ILEX pharmasudicals (I’m not sure who it was going to) but the NP who wrote it showed it to me when I was in for my quarterly appointment. The report was for the folk’s who are on the “2nd study”…. the people who were on the various CRABs drugs but weren’t having any success with them so they were put on Campath. Dredging my memory to a month ago (so don’t quote me on this) the numbers fell out like this: of the 15 people at my clinic on the 2nd study there were a total of 56 relapses between them all in the previous two years before being dosed with Campath and since the dosing there have been a total of three relapses among the entire group over the last year.

I’m on the first study and we’re coming up on the 2nd anniversary of the beginning of that study, but as of yet they haven’t released the protocol of what’s going to be done with us yet when we reach our two year anniversary. Are they are going to give us another dose at our two year anniversary (it's a three year study) or just let us go on without another dose and study us to see what happens… Kinda hammers home the point that I’m a lab rat participating in a phase II clinical trial

Anyways, the report I got a glimpse of certainly gives me hope Guess
I'll just have to keep my fingers crossed. Please feel free to ignore any spelling or grammar errors.... it was a long day at work and my brain isn't firing an all cylinders

Rat

LabRat,

I'd be interested to know how you are doing on Campath - in terms of relapses / symptoms etc.

Dr Coles who is running the trial in Cambridge claimed, on the UK MS website, that many on the trial had seen a improvement in their disabilities - 12 to 24 months after their first infusion. Are you hearing any such claims with regard to the US trial?

Bromley

Personally I'm doing very well. I've had no relapses since my initial dose in October of 2003. When I signed up for the study the neurologist who was doing the observations for the study rated my disability at 2.5 on the EDSS scale.

I dropped to a 1.5 EDSS score after 9 months, and I have a feeling that I've dropped lower than that since then. At my last check up the neuro who tested me ( we have to go in for quarterly check ups as part of the study) wasn't the usual one as he was at the hospital with a patient (no one on the study), but this guy didn't know that I was on Campath as the neuro is supposed to be "blinded" as to what group I'm in on the study. Guess I'll have to wait until April for my next appt. to find out.

However, at this point I feel great and I'm quite happy to keep leaving my handicapped parking hang tag unused and collecting dust in the kitchen drawer

The only "official" disability I have left is called "hyper reflexes" which really isn't that much of a problem other than I look kind of odd when trying to walk down stairs. Actually it's kind of cool..... having Hyper Reflexes makes it sound like I have super powers

But as for as day to day living, no one would guess that there is anything wrong with me, quite different from a year or so back when I would draw strange looks from people when walking (stumbling? shuffling?) through the grocery store or having co-workers quietly question my wife about what was up with me.... many thought I'd gotten hurt somehow.

Needless to say, I'm quite happy with the results thus far.

thank you so much for sharing and for participating in the trial! We all owe you a debt of gratitude. Please keep us posted, and we wish you continued good health.

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