Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

1,101 Members
21,517 Posts
0 Online
Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

tysabri

faithorn1
faithorn1
I was on gilenya and decided to try tysabri because I was not doing very well. I had to be off of the gilenya for two months before I could try the other medication. I have had two infusions and I feel worse than before. I have been through two deaths in the family in the last month and other family problems. Do any of you have any experience with tysabri or STRESS
bleedinblue
bleedinblue
I did 13 infusions a couple yrs ago. Quit bc of JVC virus I did well on it hates to quit it. Hope things get better for you.
Amazonmom
Amazonmom
Be very careful about the JVC virus specially if you wanted to get off Tsabriand go on to an oral like Tecfidera, as you will have to be tested make sure you're not prone to having problems.
thomas-gee
thomas-gee
I have been taking Tysabri for 4 years. I am fairly level fatigue wise.
(Lord, fatigue wise, like where else would you read that with understanding ?) Anyhow, my doctor is the head of neurology at USF and extremely knowledgeable about medications.He did not prescribe it, but does feel it is the best drug available for MS in general and me in particular. I have built allergies to many medications. I don't mind a once a month infusion. I will usually get quite tired an hour or two after the infusion. Tired, not fatigued. So I take a nap. I don't wake refreshed, but I am functional until I properly wake up. The next day I may get fatigued easily but by the 3rd day I am pretty much normal. Quality of life, I don't think about having MS like I did with daily or weekly injections and I can usually stick to plans- so pretty good, IMO.
ChrissyH
ChrissyH
When Tysabri came back on the market quite a few years ago I had approx 20 infusions. After about 2 months I began to feel so much better. Fatigue was never a problem for me. I stopped when i tested positive for the JC Virus. Everyone is affected so differently. Best of luck to u in your adventure with Tysabri.
If Tysabri doesn't work for u, maybe try Tecfidera. It's an oral pill thEn can have awesome outcomes.