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A MyMSTeam Member asked a question 💭
Plano, TX

My neurology is suggesting that I get on Tysabri, I'm just a little concern after reading the side effect. Can anyone who's on Tysabri let me know how has it been for you?

September 12, 2013 (edited)
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A MyMSTeam Member

Thanks Jen for letting me know about this question. Adele, I have been on Tysabri for over 5 years. It is totally understandable you would have some concerns. I don't have any side effects from the actual infusion. I know PML is a big concern for many people. There is a blood test you can have to see if you have been exposed to something called the jc virus. People who test positive have a higher chance of PML, but I think overall it is a low chance you would get PML. Ask your doctor about the blood test and let your doctor know about your concerns. If you have any questions, please let me know!

September 12, 2013
A MyMSTeam Member

Tysabri is GREAT!!!! I was nervous, but I can walk and write again. Im back to work and my life is almost "normal." Its hard to think that I went to bed almost everyday at 3 in the afternoon bc I could not sleep at night and I don't have the body pain anymore. I love it. I don't have side effcts and whatever health company you are with they should monitor you while on it. Its safe and reliable.

September 12, 2013
A MyMSTeam Member

I have now decided to stop tysabri after my 11th infusion. I feel symptoms are the cause of this treatment for me; sever headaches, sleepless nights, emotional, more spasms, nausea, mind wonders off, mood changes. everyone is different and take it differently. For me.. I don't want to take any treatments anymore.. changing my life style completely and putting my faith in to action.. thank you Jesus. My cousin from Australia living with lupus is completely off medication and doing so great and no symptoms.. it is different from MS but he too was suffering from a 'uncured disease' but he is finally in control over his life with out western medicine. He has motivated me.

October 8, 2013
A MyMSTeam Member

I was diagnosed in march and started tysabri in may. It is the best decision I made. I went from barely able to walk and almost using a cane to walking almost 3 miles per day ( not at once of course!). I was passing out at night by 8 pm and no have no trouble staying awake to 11 or later. I am not perfect. Still a lot of spasticity in my lower legs and my mind can't tell my legs how to run or dance ( I used to be both a runner and a dancer). I also don't walk down a flight of stairs without holding a banister That said, I am a new person and hoping for more improvement. I also tested jcv negative. My doctor said my risks of getting pml are about the same as getting run over by a car. For right now, I feel good about my decision.

September 15, 2013
A MyMSTeam Member

I'm on Tysabri it would be my 8 Infussion, it's better then dealing with self injection everyday. I only feel fatigue, muscle spasms 1 week before its time for next infusion.

September 13, 2013

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