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Gilenya -- fingolimod

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Old 09-23-2010, 12:01 AM #1
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I'm sure a lot of people will try it. As for me, I'll stay with Tysabri as it's been the only thing that's helped at all, and without side effects. I don't tolerate interferons at all, and with Copaxone, I might as well have been injecting expensive water. Very expensive water .
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Old 09-23-2010, 06:23 PM #2
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Will call Biogen when I get to it and ask if I can take it with Ty if I chose.
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Old 09-24-2010, 08:44 AM #3
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Will call Biogen when I get to it and ask if I can take it with Ty if I chose.
I am confused regarding your comment about taking the new drug with tysabri. I seriously doubt that this drug is supposed to be combined with another MS treatment.
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Old 09-26-2010, 09:56 AM #4
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Nope, no way, heck it's not for spms anyway, only rrms. Lowering the wbc's is NOT a good idea for those who are prone to infections. Jim is one of those. Oh well, hope it works for those who try it.
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Old 09-26-2010, 03:07 PM #5
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Since it lowers the WBC, it will be not be allowed with Tysabri. Same as any type of Chemo.
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Old 09-26-2010, 03:18 PM #6
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It is being clinically tested on PPMSers at Johns Hopkins, my neuro is doing trial. I've always wanted to try it (maybe it's the old name - Fingolimod I like) My ex old neuro who moved away was in charge of trial until he moved and tried to get me in it. Now my new neuro is in charge but rejected me quickly (I am 6.5, you had to be 6.0. I really liked my ex-neuro, he was out of the box if you know what I mean. The new one is younger and a rule follower.
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Old 09-26-2010, 07:07 PM #7
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I'd love to try it at 1/4 dose on Ty. My white count is always 15 give or take. Could be caused by frequent urine infections so lowering my count might make things worse but i'd still love to try it a month or two. I'll ask my neuro next month. I know Ampyra at 1/2 dose has been doing good for me past few months so let's try this at a 1/4. Don't chemo drugs also lower white count? Novantrone?
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Old 11-28-2010, 01:10 AM #8
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Since it lowers the WBC, it will be not be allowed with Tysabri. Same as any type of Chemo.
are you saying one of these is chemotherapy?
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Old 12-02-2010, 05:08 PM #9
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Default Reality check.
Big Pharma, as we like to call it/them, is a business. Production cost is irrelevant. The composite parts for a Corvette might cost $8k, but GM sells it for $70k.

It's not unfair. It's how business is done. Buy low, sell high. Choose your euphemism.

Flame on!
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Old 11-24-2010, 05:20 PM #10
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i'm not big on trying anything new. i'd like to sit tight and see how it affects those that do try it.

i just saw my neuro and we talked about it. i'm stable on C. i'm over 60 and i havn't had any flares. so i'm going to leave well enuf alone.

thanks for the info and links in these posts.
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