Small HDC trial results

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby pvns2005 » Tue Jun 10, 2008 8:25 pm

And that's why MS is an individual's disease (like your opinion). It's all a crap shoot till you find something that works for "YOU". I am a few options short of no options. Keep rolen snake eyes. SO! Instead of argueing with people just keep it zipped. If You already know what "YOUR" MS is and how to treat "YOUR" MS than rock on. I prefer to be on the front lines until I find "MY" tretment!!
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Postby chrishasms » Tue Jun 10, 2008 8:32 pm

I hear ya bud. I refused to admit all those issues I had until 10 years later I couldn't move.

Everyone has that in common with this disease. Everyone was just fine even with MS at one point. Why wait until you can't move?
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Postby RedPenguins » Tue Jun 10, 2008 11:07 pm

Wow....it's hot in here ;)

I looked at the research article today - and I have to say, when reading the chart listing the individual EDSS improvements for each of the 9 - it was pretty darn impressive. As for the question of what should be the end-point or sign that the treatment is working - I don't know....I think improvement and decrease in the EDSS is a sign of quality of life and that one is not getting worse.

The odds still seem pretty great to me - after 5 yrs, 5 out of 9 have no sign of disease activity and are on no meds. To me - and I guess for anyone who is declining rapidly - that 5 yrs of no disease activity - that is 5 yrs of cure.

I look at it like this:

In the last 5 months (since I was dx out of the blue!) - I have decreased rapidly and dramatically. I am "only" a 3 - 3.5 on the EDSS - yet, in December, I was a 0. Where will I be next December? I don't want to wait and find out.......so if, in the VERY least, my disease activity stops and I don't get worse - that to me makes the treatment worth it - BUT - what if I fall into the more than 50% category of people who show no disease activity in 5 yrs?? And what if, after two years, I am like 7 of the 9 who had improvement in their EDSS? And if in 5 yrs, I become symptomatic - I guess I am okay with that - because I will have had 5 good years - and I will not have gotten worse!!!

Is HiCy a cure? I don't know yet. No one does. But it certainly shows drastically better results than anything else out there. Think of Patient #5 who went from an EDSS of 5 to 0?! Is there something else that can do that? And a decrease in lesions from an average of 6.5 to 1.2? If so, please let me know....

~Keri

ps/PVNS - I hope I get the chance to meet you while we're down there!
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Postby robbie » Wed Jun 11, 2008 5:40 am

Still, PPMS there is no inflammation, SPMS there is no inflammation.

is there inflammation or not?? bob had said there is inflammation all the time no matter what kind your ms is.
Had ms for over 19 years now.
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Postby Lyon » Wed Jun 11, 2008 6:13 am

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Last edited by Lyon on Wed Jun 22, 2011 8:33 pm, edited 1 time in total.
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Postby rainer » Wed Jun 11, 2008 3:51 pm

Kyle wrote:Still, PPMS there is no inflammation, SPMS there is no inflammation. I think if I went through this treatment, I would stil slip into SPMS. Then what? This treatment wouldnt help me.


I understand this fear and have thought it myself: this treats inflammation - inflammation is a side effect and not the cause of disability - we are still screwed.

What you need to factor in is that inflammation gets pointed to as a positive result in a lot of research b/c it is measurable on an MRI like counting lesions. The "we think" part of "we think this helps b/c it decreases inflammation" is very gray. If we are going to believe that inflammation is a side effect of a more intractable disease, then why not believe that reducing inflammation is just a positive benefit to the treatment and that it's real punch is not understood? Why not believe that dramatically slowing the RRMS stage will push out or slow or even eliminate the SPMS phase? Or that this treatment will prove effective in slowing/stopping SPMS?

It is good to be realistic and even cynical, but I think you are filling in a lot of blanks with negatives and then worrying about the negative conclusion it produces. One of these unknowns is gonna swing our way sooner or later :)

Also I understand why people with so much invested into this treatment are defensive but discouraging debate is not the way to go.
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