This Is MS Multiple Sclerosis Community: Knowledge & Support

Fantastic! Our neuro has demanded to see Mel today to try and talk her out of the treatment.

Jamie,

I will love to hear his reasoning behind his reservations with the treatment and what he suggests would be a better option.

HiCy

Nice!

Ian
You really have no idea how much I love you!
NN

HiCy,

She's just got back and the general sense was he rambled on about the dangers of this and kept telling her that she's 'not bad enough' for HiCy.

He had very little understanding of the treatment in fact he said 'we used to do this at Baylor and it doesn't work'.

When she asked what alternatives there were he mentioned Copaxone (a treatment he himself had ruled out 3 months ago as not 'strong' enough for her) then Tysabri but he again ruled that out as too dangerous.

The overall theme was 'you're not bad enough to be looking at "drastic" treatments'.

Our whole argument is that NOW is the perfect time for it.

He even got an intern to do a rushed, poor EDSS test which didn't pick up on any of the things Dr. Hammond picked up on.

He grudgingly acqueisced to doing the blood work required but Mel is going to speak to her GP tomorrow to try and get the rest ordered.

This can't come fast enough.

We had to cancel our wedding planned for August in the UK because of Mel's ill health and to be told there's nothing wrong with you must be so frustrating.

He even said there's no evidence of new lesions on the MRI when the radiologist pointed out two new lesions. When pressed, he hadn't even looked at the images.

One thing is for sure regardless how this all works out, she'll be looking for a new neuro.

Jamie.

There's something I don't understand about Revimmune. The treatment itself is just cyclophosphamide, and it's already used in the treatment of MS. For instance, it is delivered in France when CRABS don't work, or for rapidly evolving MS. (The commercial name is Endoxan). And from what I've seen, it didnt' have a 100 % effect, neither on relapses or handicap progression. So why is Revimmune considered as a revolution in MS ? Is there a different protocol with it ?

Jean,

In the Revimmune study it is given in a much higher dosage. I brought this study to my husband's doctor's attention last year and he said the same thing "we've been using cyclophosphamide for years". But, the Revimmune study is not using it in the same way. His neurologist didn't even bother to read the papers I brought him.

Read back through all the post on Revimmune.

.

I would also wager that you would be hard-pressed to find a general neurologist who realizes that more aggressive early treatment of MS is where the current research is moving. Finding an MS specialist is critical.

I have a random RevImmune question to add: how is this current trial considered a Phase 3 if it is not being compared to a placebo or another MS treatment? (Or is that not required for a Phase 3 but merely common practice?)

rainer, the people taking revimmune right now aren't part of the phase 3 trial. They're taking it off-label, or as part of an earlier stage trial. The phase 3 hasn't started yet. It will have to be placebo controlled, all phase 3s, at least for MS, must have a placebo arm.

What I don't understand is how a placebo trial is possible in the case of Revimmune.

I would have thought it would be pretty obvious if you had had chemo or not?

Thus no placebo.

Unless I'm missing something.

It has been known to happen.

does off-label mean you can have the treatment anywhere or still only john hopkins

That's exactly what I was wondering. Do they give you something to make you sick and pass out and when you wake up they've shaved your head?

NHE

That's a good point about a placebo group. When I read the press release about the phase 3
( http://www.eurekalert.org/pub_releases/ ... 100907.php )
I saw "randomized" and just automatically assumed a placebo group, but I guess they could randomize into groups getting different revimmune dosages, or revimmune vs. some other chemo-type MS treatment. This trial is going to be different in that it is only 1 year, not 2, which is the typical phase 3 trial duration for MS drugs.