The day before I was to receive my 8th infusion I got a call about my MRI results and I have 1 new active lesion. So instead of receiving Tysabri I got 3 days of Solumedrol and now have to wait 4 weeks for next dose of Ty. Other than the first 2 infusions I haven't felt better on Tysabri. And that may have just been wishful thinking. Am I the only person who doesn't feel better on Tysabri? My neuro acted like this is the strongest, best med and it would help. If it's not working, then what else is there?
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Does Tysabri work for everyone?
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Tysabri hasn't improved my life. I guess nothing will. In 3 and a half years I've gone from having an EDSS score of 4 to an 8. I just don't want to get worse. Which I know isn't possible, but it would be nice to at least slow the progression down. Am I asking for too much?Diagnosed December 20, 2011
Avonex: February 10, 2012 - March 16, 2013
Tysabri: June 28, 2013 - May 23, 2014
Betaseron: August 15, 2014 - March 10, 2015
Aubagio: June 18, 2015 - current
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Hi LostCupcakes,
Of course you're not asking for too much! You've have had such a rough go of things and I'm so sorry to hear you have another new, active lesion. But, it's not at all unheard of with Tysabri. Has it slowed down how often you were having flares at all? If so, that is progress. Slowing inflammation and disease activity is the goal to slowing down progression. Your body might just have a chance to do some repair after that's happened. That is my hope for you!
Try to hang in there as discouraging as this is right now. I know that is much easier said than done, though. And, just so you know, Tysabri isn't necessarily all there is left for you. There's Tecfidera, Gilenya, Novantrone, other chemo drugs like Cytoxan and Rituxan (maybe Lemtrada), CellCept, etc.
You're in my prayers,Kimba
“When you change the way you look at things, the things you look at change.” ― Max Planck
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It didn't work for me...
Tysarbi wasn't the medicine for me. I tried it but because the side effects made me feel awful and it didn't help in slowing things down at all I moved on to another med. I know a lot of people get help from Tysarbi but some don't. The good thing is there are other ones out there now that may be what your looking for. Whether you decide to stay on it longer or look into another med, I wish you all the best.
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No DMD works for everyone. I am sorry this is happening to you. Maybe it just has not kicked in yet. Here is to hoping for a short flare and a more successful infusion.Katie
"Yep, I have MS, and it does have Me!"
"My MS is a Journey for One."
Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri
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