Treatment after long term RRMS

CureOrBust · Posted: Tue Nov 04, 2008 6:39 pm Post subject: Treatment after long term RRMS

I am trying to get Campath off-label. The thing that worries me, even though I am still RRMS, I have had symptoms for over 13 years, with a diagnosis about 3 years ago.

Most of the people I have seen here who have received it, have been usually considerably less time with this disease, but more aggresive. I have read the studies that show its more effective with people in early RRMS, and I don't think I explicitly fall into that group. So, I am wondering, whom out-there, has had Campath while still RRMS, but has been symptomatic for a long time? ie >5 years.

I am EDSS of about 3.5 (after 13 years), and I am definitely currently SLOWLY recovering symptomatically, so I think I have the potential to respond like someone who is early RRMS.

Lyon · Posted: Tue Nov 04, 2008 9:04 pm Post subject:

Here's Raven's first post. I'm not sure how long after this he actually started Campath treatment but 5 years and running at this (that) point http://www.thisisms.com/ftopicp-3152.html#3152

http://www.thisisms.com/ftopicp-7094.html#7094
http://www.thisisms.com/ftopicp-7739.html#7739

I'm not trying to sell anyone on Campath, in fact it's not my treatment of choice, but considering raven's description of his situation in 2004 and also considering that a few months ago he mentioned accidentally noticing that he can run again seems pretty hopefully.
Bob
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Wife diagnosed with RRMS in Feb. 2006.

CureOrBust · Posted: Tue Nov 04, 2008 9:35 pm Post subject:

Your right! I thought Raven was actually less years between diagnosis and treatment with Campath. Thanks bob.

raven · Posted: Sat Nov 15, 2008 4:48 pm Post subject:

Hi,

Sorry I dont check ThisIsMS as often as I used to. As was pointed out earlier it was about 5 years between diagnosis and treatment. Although diagnosis seems to me to be a rather artificial date to begin with. For example it took me 18 months to go from from first approaching my GP with my concerns to actually geting a diagnosis. For some I know it has taken a lot longer.

The only thing you can reasonably do is discuss your case with the trial organisers and let them make a decision as to whether they believe the treatment can help.

Robin
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Do not go gentle into that good night.
Rage, rage against the dying of the light.

Grumpster · Posted: Sun Nov 16, 2008 9:38 pm Post subject:

I am in discussions right now with a trial site in S. california. It looks likely that I will start in a few weeks. I hope that others who are trying to get on board are able to. I am nervous of complications, but I am 99.99% sure I will go through with the trial. Best of luck everyone.