Just wondering if anyone else is taking tysabri, and what are the side effects? What has the experience been like?
I swear by Tysabri! It is the only medication I found that works for me. It keeps me out of a walker (for the most part) and provides me with independence. There was a six month period where I was unable to get my infusion due to various infections and I was miserable. I was numb from my toes to my chest and in my arms and hands. As a result, my footing was unreliable and driving was out of the question. I've been on it since 2010.
My Neurologist Dr Phillips recommended it to me . I had been on Avonex for 11 yrs and I had an MRI showing that it wasn't working for me anymore. Dr Phillips was with TX Neurology in Dallas, but is now in research full time .I didn't know I was JC virus positive until after I was on tysabri for some time. I went off tysabri due to risk of PML. Wish I could be on it still. Dr Greenfield at TX Neurology recommended
I go to Tecfidera from tysabri when we discussed me being jc+. My last MRI which was quite recent showed no active lesions and he recommends that I stick with Tysabri. There were some areas of chg. and I need to discuss that with him.
I am happy to share my experience with you! Hope you remain JC-. Hopefully tysabri is doing it's job. If you are stressed you may have symptoms that you have experienced before,that aren't from a new lesion. I know it is scary to think about the PML, but as long as you look for any changes that might suggest it, your chance is minimized. Good luck to you!
I had an allergic reaction. skin turned red. the nurses noticed it and they gave me something like benadryl. then they gave me something to prevent it before infusion. I had no other side effects besides that.
Would love to be on it again if I wasn't JC virus positive!
I was on tysabri for 19 months.
I was taken of it due to the fact that it stopped working for me.
Until then it worked really really well with absolutely no side effects what so ever i was also jc positive from the very beginning.
it is a shame it stopped working, i am now on chemotherapy which gives me about 2 weeks releif which is better than non