My dr is adamant that tysabri is my best and last option because no other meds are really working.....I am scared of tysabri.... Any info appreciated
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I was in the same situation as you. The CRABs and I did't get along. I am still nervous about my Ty, but I was nervous about all the steriods I was needing to get me through. I was having relapse after relapse. So in my situation, it was either continue to get worse (probably) or try something else. I'm trying the something else - Tysabri. I've only had 5 infusions so I am no expert, but there are plenty on here with way more infusions than me. Read them and hopefully that will help ease your fears some.Originally posted by Sdickerson1 View Post
"Dogs are not our whole life, but they make our lives whole."~ Roger Caras -
Sdiecerson1 -
Take a deep breath, get yourself beverage of choice - and have an afternoon at your computer. There is tons of information on the NMSS website, lots of first hand stories on these message boards, and lots of good information, although sometimes old, on different websites. Rocky Mountain MS Center in CO is also an excellent one and you can get their newletter mailed or emailed to you. Of course Biogen has the basic information on Tysabri with side effects and PML warmings listed.
Youtube has lots of videos on people that have been on Tysabri with great results for years. There is also a girl, Angie, who does short ones now and then. She got PML from Tysabri and it gives you a little inside view if the worse did happen.
But even if it is 2 out of a 1000 - which is sort of what it could be for me now - that means 998 of us are doing just great. And I think those are good odds. Not just doing better or the same, but doing GREAT.
So have a "fun" day and take your time and let us know what you decide. My doctor gave me 3 months to research things and get back to her. I picked Tysabri. Was the best thing for me.
I just had number 27.Comment
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Just had my 15th this am, while I was there nuero came in and went over my MRI from last week, no active legions and actually have 3 less on my brain and 1 less on my spine over a 1 yr period. though not usual he said it is not the first time he has seen it happen with TY. I feel much better on it than I did on avonex or copax. I changed by my own decision and dr ok'd it. besides no more giving myself shots, that in it self is worth and risk to me besides I have a better chance of dieing while driving to the infusion center than I do from PML.Plan for the future, but not too hard; it’s not your decision anywayComment
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Thanks everyone! I will def check out the you tube video... I have had one episode that I thought was a remission but apparently it was just a few good weeks.. I have been sick for one year straight as of this month! One year without a remission.... My viens are all burned up from all the sol.... (debatable apparently but I know they cant hold an infusion anymore)
Thanks again!!! Will let u all know what I decideComment
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