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984138 tn?1359813073

changng meds t o tysbri or gylina

Sorry i have not ipdated ot posted much or answer much this year..prob only third time on here in like  4 yreas.... the

specialists no lnger thinks avenox is working for me for, the consistant flare up every other week and good for a cpl

weeks than back to a relapse.

Tysabri or gylinie is anyone on? i got brochures and bother scare the hell out of me for the od to me are not good

at all but the odd of staying on avenox is just going to cripple.

An experience with either as my packets said only 2,500 on the pill and like 4 deaths and 1 out of 100 went

blind... on the infusuion 52,000 and 2 deaths... has anyone xperinced either of these meds and if so how did u do

on them and how long have u been? both said they been out for 2 years..... any knowledge of ur experience would

be great!!!!! Oh and if no one knew Avenox was the top but noe 37percent afect and the pill is 50 percent and if u

want to go right for the bug guns ( as my neuro said lol) the infudson (tysabri is 87 effective.. kk thanks

them and ur experience and side effects?  thank,  love alway Erin  hope you all hav e a fun easter!
4 Responses
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1396846 tn?1332459510
I was on Gilenya for a while, the side effects were too much for me, dr took me off. I am no on Avonex. Going on 6 months (I think) and it is going well for me.

I hope you find something that works for you.

I am right there with you about not updating or posting much anymore, life gets busy and we learn to accept what we had so many questions about before, but I still pop in from time to time.

Take care,
Paula
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Avatar universal
Call Tysabri, and talk with them they will talk to you even tho you are not a pt yet.  They can explain how you rule out how vulnerable you are much better than I can
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984138 tn?1359813073
thank you sarah for your experiencing, and yes my main concern is the fatal brain infection with tysabri and was thinking if i have to change might as well go with the best effective.. before i wrote deaths out of 52,000 ... meant 52 so same as the pill 1out 1000.  I am getting my blood done monday and will be picking on the 26th which one... im scared but im pretty sure tysabri is what i am going to go with. had ms from 22 to 26.. also scared that if this dont work than what? you know? there aint nothing else out there so that also scares me

thank you for ur quick reply!
Helpful - 0
Avatar universal
I've been on Tysabri for 14 months and am very happy, the big risk is always there  true, but neuro keeps a close eye and Tysabri gives you a caseworker, I can call anytime I need help, reassurance, have a question, they are great.

I had a chance to go with gly... But didn't like the cardiac data.  We have people on here who have been on Ty for over 4 yrs
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