Award for Revimmune
Posted: Thu Mar 13, 2008 5:46 am
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Award for Revimmune
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Posted: Thu Mar 13, 2008 8:52 am
Fantastic! Our neuro has demanded to see Mel today to try and talk her out of the treatment.
Posted: Thu Mar 13, 2008 2:27 pm
Jamie,
I will love to hear his reasoning behind his reservations with the treatment and what he suggests would be a better option.
HiCy
I will love to hear his reasoning behind his reservations with the treatment and what he suggests would be a better option.
HiCy
Posted: Thu Mar 13, 2008 2:33 pm
Nice!
Posted: Thu Mar 13, 2008 3:23 pm
Ian
You really have no idea how much I love you!
NN
You really have no idea how much I love you!
NN
Posted: Thu Mar 13, 2008 4:21 pm
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.
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.
Posted: Fri Mar 14, 2008 3:41 am
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 ?
Posted: Fri Mar 14, 2008 4:50 am
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.
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.
Posted: Fri Mar 14, 2008 5:32 am
.
Posted: Fri Mar 14, 2008 2:04 pm
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.Lyon wrote: Because the medical world has used that strategy for so long (suppress/modulate/injure/wound/depress/dampen the immune system) without the world coming to an end, they are having an especially hard time accepting that completely eliminating the immune system in the short term, could possibly be as safe, or safer, than treatment leaving someone's immune system severely compromised long term.
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?)
Posted: Fri Mar 14, 2008 5:06 pm
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.
Posted: Fri Mar 14, 2008 9:32 pm
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.
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.
Posted: Fri Mar 14, 2008 11:11 pm
does off-label mean you can have the treatment anywhere or still only john hopkins
Re: Award for Revimmune
Posted: Fri Mar 14, 2008 11:27 pm
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?Jamie wrote:What I don't understand is how a placebo trial is possible in the case of Revimmune.
NHE
Posted: Sat Mar 15, 2008 8:33 am
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.
( 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.