This Is MS Multiple Sclerosis Knowledge & Support Community

I just got information that Hopkins is continuing to do Revimmune off-label (don't know how booked they are). They plan to start a phase III clinical trial later this summer, which will be multi-center.

No, all I know is what I posted. My guess is that type of thing is still being worked out. I do know that a site usually doesn't list itself until all the paperwork has been done and the contracts signed.

As to your other questions, I don't have the answers, others probably know. To be honest, I don't think this has moved that quickly. Cyclophosphamide has been used for years, just not in the doses used in Revimmune. And Stony Brook was doing experiments before Hopkins. I don't think the number of patients treated with Revimmune so far is that large. And a phase III trial would be the next logical step, since cytoxan has been FDA approved and is already in use.

I am happy to say...and I can't say how I know...but I do know a major medical manufacturer is looking to hop on board with Revimmune to make it more easily acceptable.

I am also happy to report the Copaxone seems to be working with the Revimmune to train the body to forget the Autoimmunity.

HiCy has been done, now, close to 400 people for many different Auto Immune diseases but the total for MS is right around 100 total now I guess.

There has been one person who died and it really wasn't from the HiCy. They had a bronchioscope. The scope, which is no longer used for this reason, was to hard to clean and because of something on the scope, the person caught a infection and died. It would have happened to someone healthy as well, it's just to bad the person was in the trial.

How do you know the Copaxane is working? Did JH release some kind of data supporting that claim? J

They have not released it but I talked to a doctor who said most of the people who have added Copaxone post Revimmune are either done with progression or they have fired off a lesion or two and the body fixed them itself. That is why I am so interested in seeing what happens with Keri. I figure MS may be like a really bad cold so to speak in the way you think it's gone but it has one last go of it and either you get rid of it on your own or you get sick allover again. Some folk may need to blast the immune system twice and maybe increase the Copaxone...I dunno. I also use LDN with the Copaxone that was RX'd by Dr. Kerr so maybe the LDN helped me fix the new lesion.

Just my thought but I am sure I am wrong lol.

There is close to 500 people who have had the HiCy but only 75-150 of them are MS and that includes everyone with MS I guess. The others had other AID's. Revimmune they are hoping to use on 80 different AID's.

You should tell your neuro, that since he can go home at 5:00 every night and not even have to think about MS, he doesn't have much right to call you nutty.

AIDs

Just to clarify because these threads live for years, You mean autoimmune diseases not HIV "aids" right?

My neuro thinks I am nutty for wanting to do this and I think it's nuts to do tysabri.

I understand that point of view completely and agree he does not get to call you nutty! I'd be there if I had inflammation too.

Yes I meant A.uto I.mmune D.isease