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A MyMSTeam Member asked a question 💭
Camarillo, CA

My doctor wants me to go on Tysabri and I am JCV negative. But I am still a bit scared about the PML. If you use Tysabri, how did you get past this? How is your experience with Tysabri?

February 22, 2016 (edited)
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A MyMSTeam Member

I've been on Tysabri since 2006, and without it I would probably be in a wheelchair. I honestly believe this was my God given miracle!! Was I anxious? Am I still at times? Definitely... If I allow myself to dwell on the "what ifs". I just make the choice to have faith in God and leave it to HIM!! I know He's got it!!

February 23, 2016
A MyMSTeam Member

Hey there! Just wanted to add my take. Of course you can see everyone's experience is different, but my experience has been great! I've been on Tysabri since 2014. I get a very minor headache after my infusion and feel a bit more tired then usual, but it's nothing.
I love it because you don't have to worry about meds, just the 1 infusion every four weeks. My neurologist felt it was the best medicine for me in terms of long term outcomes. I am also JCV negative, so I feel OK with the risk.
While PML is scary, a lot of times the framing of the statistics makes it worse. To say 1 out of every 10,000 people develop PML sounds a lot worse than to say 99.99% of patients take Tysabri safely without developing PML. Know what I mean? These are the same statistics (which I believe are still considered correct) framed two different ways. Only you can know what you're comfortable with.
Also keep in mind if you do go on it, you'll be getting regular blood tests to check for JCV. So you can always reevaluate if your risk increases. Best of luck!

February 24, 2016
A MyMSTeam Member

I've been on it for a few months. The first few infusions I was extremely tired for a few days afterward. My uncle who is a retired physician has had many patients on tysabri with only positive effects. He told me to give it a try. I haven't had any problems.

February 23, 2016
A MyMSTeam Member

I am on Tysabri,I didn't want it before even though I'm jc negative,and when I did my 1st infusion I was scared cause I kept thinking about my 3 kids,but I did it and it was the best thing,I keep thinking that even with that risk, imagine how I would be without it,good luck!

February 23, 2016
A MyMSTeam Member

I'm jc positive and on Tysabri, your watched very close for symptoms or change in Mri. It's a personal choice. I only have a slight headache on infusion day.

February 22, 2016

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