Some have reported good results from Campath 1-H and Novantrone.
Yet the actual paper posted in the first post of this thread says campath does not reduce disability. we have already posted this abstract on the abx website for the same reason it appears here. It makes us aware that the status quo is absurd.
But can anyone point me to the research that allowed the author to make that statement in the paper in the first post? Where's the research that says Campath did not reduce disability? I've heard it from others also, but have never been able to reference it. I have looked but can only find many many pages of what essentially amounts to a preclinical data marketing blitz precisely of the nature Harry pointed out "Reduces lesion remarkably!!". IMHO the drug companies know that we and our neuros are so desperate for SOMETHING and that they can create demand ahead of time by doing this to us. It reminds me of the goat serum "excitment". My doctor told me last time I saw him that tysabri helped people he'd treated and he was taking names of people lined up for it as soon as rereleased. he wondered did I want to get on that list?
It's not OK with me to risk PML(tysabri, intereron), heart damage (novantrone) or immune suppression that potentially could result in cancer so that I can reduce inflammation. There simply is not evidence that reducing inflammation helps, and all the time more comes out saying it does not just as this paper does.
Dr Gavin Giovannoni of the Institute of Neurology in London. He suggested that the heavy duty immuno-suppressants might merely convert a relapsing / remitting course to a progressive course.
This made me want to weep. I had benign MS 6 years after diagnosis I was still jogging. NO one knew I had MS. My brain was apparently coping with whatever MS is at that point. HOwever, I was pressed to take copaxone and did. I was scared of MS and what it could do to me. My doctor was very firm in stating that the real damage happens early and we have to get out ahead of it. he quoted that the people who took cop from the first of the trial compared to those that were switched from the placebo group 2 years later always did better than those who'd had that 2 years of no treatment. Nervous and stressed all the time thikning about how much worse I might get, I agreed.
In about 6 months I progressed. I talked to my doctor, and he said firmly that we caught it just in time. I'd have gotten much worse if not for the drug. Maybe that is true, there is no way to know any answer to that is there? My MRI today looks almost exactly like the original years ago.
My neuro said that it looks better than many on a first visit.
But I am SPMS. I can barely walk now, I can only barely drive, let alone jog. At 15 years post diagnosis, I am not at all behind the "normal" secondary progressive phase. In no way is my benign MS now benign. I could make the argument that I would be better with out cop, but the doc argues that I AM better, he's sure of it. I ask you, is the neuro input more authoritative than mine? Is he being "scientific"?? If so, how?
So my MRI looks OK, I can hardly walk. I do not hang a picture of my pretty MRI on the wall and say to myself "well at least my brain is OK!" He does not know, really, anything about how I would be if I'd not taken this. He is in fact influenced by the marketing material he reads and this profoundly influences his assessment of my situation and the value of what we have done. He's a believer! All the evidence points the other way.
There was a study done a long time ago that a doctor mentioned in which MD's who read the JAMA were tested two weeks later to see what they remembered from the journal. By a large margin, the MATERIAL IN THE ADVERTISEMENTS with their snappy little bulletin points was what the docs remembered, NOT THE ACTUAL RESEARCH. So I ask you, if you're a neuro and you read the neurology today and there are ads for CRAB every one "spinning" the research into little soundbites and you also read the post that says inflammation is a red herring at the beginning of this thread, which sticks with you? I tell you, that one lonely little paper does not look too impressive after pages and pages of ads all repeating the value of decreased lesions. It starts to look theoretical and preliminary. Besides, there you are and you've been prescribing th is stuff for years, convincing people to do it.
There must be others out there with this same story if the paper we are talking about is correct. There must be many who took a CRAB and progressed right on schedule.
I'm sorry my posts are so long. Thank you for being there.