This Is MS Multiple Sclerosis Community: Knowledge & Support

I got a phone call today from my neurologists office asking me if I'd be interested in this study. They are already approved as a trial site for the Campath/Rebif study. I go in on the 10th to see them and I've looked at info on the internet but is it really true that if you get Rebif while in the trial that it's covered cost wise? It's a question my husband asked me and I haven't seen that in any documentation I've read on the internet but maybe I haven't hit the right place.

Tell me everything you all know. I want to know everything I can before my appointment.

Marcia

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Marcia

I have a copy of the consent form for this trial and just read through it. It states that the cost of the Rebif and Campath are covered, as well as the IV steroids that are part of the protocol.

Where are you guys finding these neurologists who are running clinical studies, and actually contacting you about them? Compared to this, my primary neuro isn't doing much at all.

I live in central Kentucky near several universities including Univ. of Ky. My neurologist is not with the university but is part of a group that keeps up with the latest research. My clinic has a research staff that continually looks into trials that appear to be of value to those of us with neurological conditions(afflictions) such as trials for alzeimers and epilepsy and other conditions. My family doctor recommended that I see this group when he suspected my ms dx. They like it when I bring in stuff that I find on the internet that looks promising or is worth further review. They also look at the treatments that interest me like revimmune. My doc said "This one could kill you and your not that bad yet that it's worth your life but if you really want to pursue it we need to get a lot more information." We have healthy debates over my treatment options and which route I will take after having been in Tovaxin. The research staff knows I'm interested in the trial arm of this disease instead of just going with the fda approved (not super effective yet very expensive) treatments.

I'm sorry to ramble but I guess what I'm saying is look around for a clinic that has multiple doctors and a research department as well. If you live far away from any clinics like this then I'm not sure what to tell you.

Marcia

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Marcia

Your reply wasn't rambling; actually it was pretty informative. The way you described your clinic was pretty much what I was looking for after I was diagnosed this past August. Initially, I just chose a neuro who was in my health plan and close to work. I live in Maryland, so after he told it looked like MS, I decided I should take advantage of my location - I have Hopkins and Univ. of MD near me, as well as NIH and the D.C. hospitals. The neuro recommended Univ. of MD hospital. They have a pretty good MS center and are running a lot of studies, but it still doesn't sound as pro-active as where you're going. I pretty much gathered they like to stick with FDA approved meds, and only rarely prescribe stuff off-label. And when I try to discuss the science and treatment of MS (not that I'm a doctor by any means), I get the impression that I'm annoying them. I'm still seeing the 1st neuro for follow-ups, but he does his physical exam and then it's see you in 6 months.

Anyway, sorry for the long reply. I'm just impressed by the clinic you found (and others on this board have similar experiences), that they are so current with the research and newer treatments.

Mike

They are out there. Just find one that shows interest when you show them something "new". I wouldn't want to go to a neuro. where they "have it all figured out" either. Good luck, but it sounds like your location is pretty good for hooking up with a progressive thinking neuro.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Yeah, maybe I've been going about things the wrong way. Initially, i went to the local neuro to figure out what was going on with my symptoms, and then I went to the university MS center for a second opinion. That's where they are doing studies, and I joined one. But I'm still splitting care between the two places, and maybe that's the wrong thing to do. But even at the MS center, I asked the head doctor a question about vitamin D (and he's running a study on this topic), and the answer was less detailed than I would expect. I just get the feeling that it's just a job, even at the MS center.

I envy those that found a local MS center, where they are receiving regular care, but that has a research part to it.

Doctor Shop!!! til you find one that suits you, answers your questions, and feels like they care. It will take alot of time & energy but you gotta fight for yourself!

The internet is full of information to sort through & there's even tons of stories campath now. (yes, the study will pay for everything. no co-pays & lots of free testing)

a good website to look for doctors, I found 3 years ago after being diagnosed, living in a strange place is:
http://www.clams.org/goodocs.html

I found a decent neuro in Washington state to start with. Then when I moved back to Florida, I went to the USF neuro ( because a friend recommended it, but he's also on this list)

Interview your practitioners and don't settle or feel obligated to anyone but yourself

As far as the CAMMS323 trial - if you randomize to rebif then you will be in that arm until the trial is over. After the trial concludes and participants that were randomized to rebif are eligible to recieve campath at no cost. Talk to your doctor about this. It is in all the paperwork leading up to signing on to the trial. I got lucky and got the campath arm and so far I am feeling great.