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Old 04-24-2009, 10:25 AM #11
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Kicker, I think it's marketed to SPMS and PPMS. I think it may be the only thing out there for more serious ms patients. Which is scary isn't it?
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Old 04-24-2009, 01:02 PM #12
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Kicker, I think it's marketed to SPMS and PPMS. I think it may eb the only thing out there for more serious ms patients. Which is scary isn't it?
The literature that I looked at states it is prescribed for RRMS patients who have failed at all of the CRAB's and have ms that is seriously progessing. The other group is SPMS. It did state it should not be prescribed to PPMS. I am not sure that I fit either of these groups other than the fact that I have proven to be allergic to all of the CRAB's and tysabri. My ms is not mild, but neither is it severe. At least that is my self assessment. I guess it is all in the eye of the beholder. On the other hand if I were to experience a significant drop in symptoms for several years, it may be worth it. He was suggesting one year -- just 4 treatments at this time.
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Old 04-24-2009, 04:10 PM #13
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See? Things change. Back when Jim was given Novantrone it was for those who have not responded to conventional therapies and have a more sever case of ms. I honestly don't think anyone really knows what works for who, what stage, what severity. lol They also told us it was a one time deal. Four infusions and then nothing else, forever. Jim's now back on Beta which he started back in the 80's. Full circle baby.

It's a crap shoot.
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Old 04-24-2009, 04:13 PM #14
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I honestly don't think anyone really knows what works for who, what stage, what severity. It's a crap shoot.
Exactly. We're the ones they're "testing" the waters with to see what works.

Not me.....said the little red hen!!
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Old 04-24-2009, 06:22 PM #15
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No thanks to me either, Im very slowly going down but I can deal with that. So long as I can still fish and manage everything else at what ever pace I need to, then I will just stay on the same path, til something really comes out that works

Ive been lucky enough, that my symptoms have been slow and I can adjust to the new problems as they occur. So I guess its just a matter of how fast a person is progressing with this that makes the decision of what course is best.

Im willing to try anything if the risk is not greater than the benefits. In this case it seems there is too much at stake.
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