Copaxone for ppms

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Copaxone for ppms

Postby mickb » Tue Jul 24, 2007 8:28 am

Hi All:

I haven't posted for a while but I was interested to see if anyones neuro is advising them to use copaxone for ppms as mine is? I have a very high degree of confidence in this group. They are researchers and only treat MS patients. It seems they believe that copaxone will provide some level of "neuro protection." This has put me in a quandary because I know the ppms study was shut down because it became obvious it wasn't going to work. I would be happy to try it but I really can't spend the $7000 it would cost me without better evidence that it would alter the course of this disease. I know sometimes they want to try "something" because it's hard to watch people suffer but I have an obligation to my family not to "experiment" with money which might be better spent on other needs.

So... if anyone has any experience with ppms and copaxone I'd sure like to hear about it.

Thanks also to all of you who post often. I read this forum daily and it really helps to know I'm not in this alone.

Thanks
Mick
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Postby gwa » Tue Jul 24, 2007 8:48 am

mickb,

Here is a link to a thread that discusses some supplements that help neuro protection. Some of them have been studied and have scientific background that they do help. Many of us, including me, take some/most of these supplements.

I would not take Copaxone and I have been SPMS for about the past 20 or so years. Before that I was RRMS for another 15 years.

In fact, I would like to see all people stop taking the CRABS and then maybe the drug companies would get on the stick and find some drugs that actually work.

http://www.thisisms.com/ftopict-4227-tumeric.html

gwa
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C for ppms

Postby mickb » Tue Jul 24, 2007 9:02 am

Hi GWA:

Thanks for the quick reply, I will check out the link. I did try betasearon, once. I could not believe the reaction I had to it. It knocked me down for days with the worst "flu like symptoms" I could imagine. It just was unthinkable to do that every other day.

Sometimes I wonder how these meds come to be.

Thanks again
Mick
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Copaxone for PPMS ???

Postby Smilingface » Tue Jul 24, 2007 6:14 pm

Hi mickb,

I have PPMS and Copaxone was suggested by one neurologist. The same doctor suggested high dose inteferons should be considered as well. He said he did not want me to look back 10 years from now and say "I wish I had tried something" He also said perhaps I really did not have a true form of PPMS and if I did not get better it would help prove my diagnosis. I thought long and hard but chose another path with a different neurologist because I just didn't think the research was supportive for me to try such expensive, nasty side-effect drugs. I think if I was rapidly progressing I might have made a different decision but I think mine is slow. It's taken 3 years to go from running to walking slowly. It was still a tough decision for me. Good Luck!
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copaxone

Postby mickb » Wed Jul 25, 2007 3:00 pm

hi Smilingface:

Thanks for the reply. I can't quite get there either. I would hate to look back 10 years from now and discover I spent $100,000 for something that was just a guess.

I'll post again if I discover something that changes my thinking.

Thanks

Mick
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Postby Loobie » Wed Jul 25, 2007 4:39 pm

Good luck with that Mick. I wouldn't know what to suggest at all, but I would be wary, as you are being. I'm in the Tovaxin trial and if it is not effective for me, I am not going back on a CRAB. Avonex trashed me like Betaseron did you. Forget every other day, I wouldn't do it anymore once a week! I don't know what I'm going to try, but I just wanted to wish you well in your search for a way to treat your PP.

Lew
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