This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi

It's been a long time since I posted on this forum. I keep a very close eye on everything about Revimmune but could not find anything about this drug for PPMS. Do you think it is an option? Ahh, it would be so nice to have finally something against this form. I know that the current trial accepts PPMS too. But just want to know if someone had it before and saw/sees good results.

I know that the results of the Olympus trial are still awaited and I have searched the internet for some news or people how are in the trial, but it seems this Rituxan is not so popular?! I mean compared to the hype about Campath and FTY720 for RRMS.

To Chris: I have read probabely all your posts here and I wish from the bottom of my heart that everything turns out fine for you.

best
nati

123

Oh, I thought the so often mentioned results of the study were done with SPMS (54%) and RRMS (46%) if I remember well.

And I remember reading in an article, that I cannot find anymore, that the PPMSers do not tend to do so well.

Anyone else knowing a bit more, since Chris is away now?

nati

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1233

Hi guys

Thanks for your posts. No, I am not referring to Campath. I have read and know, that it is only useful for early MS/RRMS. That's another story...

I am talking about Revimmune or cyclophoshamide, quite sure. Don't want to open the discussion about PPMS and the other forms of MS again. But from what I have read there are different opinions. And it is sadly a fact, that the official therapies for SPMS don't really work for PPMS.

I have no idea how many people with PPMS Dr. Kerr and Brodsky have treated. And what the outcome is.
I also do agree that MS is, well, MS, and that the usual four or five categories are only a artificial construct. Lot's of people are somewhere in between this forms.

Clinical Studies with Ultra-high Intensity Intravenous Cyclophosphamide




Phase I study at SUNY Stonybrook



Recently published data from a clinical trial in SUNY Stonybrook sought to describe the effects of high dose cyclophosphamide on severe refractory multiple sclerosis. In this study 13 patients, 54% secondary progressive MS and 46% relapsing remitting MS, were treated with high dose cyclophosphamide with mean follow-up of 15 months. Five patients showed a decrease in disability by 1.0 or more on the EDSS (an MS severity scale) with no patient showing an increase in disability by more that 1.0 on the EDSS. Following high dose cyclophosphamide treatment 2 patients had resolution of a single gadolinium-enhancing lesion, which was present on MRI at baseline. One patient showed a new enhancing lesion at baseline. Response to treatment was seen regardless of the presence or absence of gadolinium enhancing lesions at baseline. All patients reported an improvement in quality-of-life measures as well as neurologic function: gait, bladder control and visual function.


Phase I safety and tolerability study at Johns Hopkins University


Under the Revimmune for Aggressive MS clinical trial protocol at Johns Hopkins Hospital, 9 patients have been treated and followed for a mean period of 19.4 months. All 9 patients had aggressive relapsing-remitting MS, 8 of whom had failed conventional therapy and 1 was untreated. Median age at time of entry was 29 years, range of 20 to 47 years. The mean number of gadolinium enhancing lesions on baseline MRI was 6.5 (range 3-11). There was a 90% reduction in gadolinium enhancements at 6 months and subsequently a 94% reduction by 18 months following Revimmune treatment. Only one patient had an exacerbation during follow-up and was started on conventional MS therapy at 18 months. At baseline, 66% of patients had a disability score of 5.0 or more on the EDSS. This Johns Hopkins study observed a 45% reduction in disability with 4 patients having virtually no disability (EDSS score of 0-1) at an average follow-up of 20 months. This response rate in terms of reduction of disability is on a magnitude never before seen in any MS therapeutic trial.

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Damn, I really don't remember where I have read that article but I was very disappointed.

About the misconception you might be right. But then, it's hope that leeds this people! We do arrange our lives around this shit and go on as good as possible, but what wouldn't we give to get our old self back!

I know me pretty well, as soon as I might read in the results of the Rituxan PPMS-trial, let's say: "65% showed no progression after a meantime of 12 months" I will probabely burst in tears of dispair.

nati

Are these presentages based on 9 people or am i not getting it right?

_________________
Had ms for over 19 years now.

Hi Robbie

Are you cynical now?

If not: Please don't get me wrong, the 65% has nothing to do with the HiCy! It's pure imagination what the Olympus results with Rituxan for PPMS might bring and drive me into dispair...

"thinking by myself": Perhaps I should delete that phrase...

.

Bob

I am no scientist and only understand a tiny part about how the upcoming new therapies work and even this little part is more vague than anything else (hey, I do my PhD in history of art ). I also don't see any real MS cure for the next 20 years. And with cure I mean the complete recovery from all forms of MS to a EDSS 0 and without fatigue.

But I have the sneaky feeling that the elimination of B-and T-cells (what HiCy does, am I right?) is closer to a cure or at least stop of progression than the supression of only one cell-group.

If I would be completely desperate now, this is what I would try to do:

-HiCy treatment
-check regularly my Vit. D levels and try to keep them high
-avoid to much psychostress (got my first symptoms when I had a lot of emotional stress)
-go for a healthy diet (no transfat, a good balance between Omega6 and Omage3, keep the saturated fat as low as possible without starving too much)
-Hope that there is soon a EBV vaccine available and if so, go for it.

Best
nati

123

Chris

I do none of this "diets". But since there is some evidence that vit.3 could help to prevent MS or lower the risk (don't think it helps, if you already have MS) and some smaller studies have shown some results with a low-fat diet to prevent relapses in less severe MS a little...
I think, I would just try not to repeat the mistakes of the past and do what ever I can to avoid a new break out of MS.

As for the cure: EDSS 0 is what I understand of beeing the cure. But I would be already very, VERY happy to know that my progression has stopped, even if I was a 6. What is very difficult to deal with is the fact, that one will quite probabely get worse with MS. If I had a progression stop I could start to manage and plan my future with a brighter outlook.

Tovaxin: It's interresting, but does it help for PPMS? Don't think so.

Best
nati