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I have never taken Tysabri. A lot of people say they are glad they tried it. They get the JC virus and have to go off of it. What is the JC virus. When you stop taking Tysabri, how long does it take for MS symptoms come back. Do they come back worse then before you started it ?

September 10, 2013 (edited)
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A MyMSTeam Member

Everything is stable. There has been no change in my MRI's since my diagnosis in 07.

September 12, 2013
A MyMSTeam Member

I have been on Tysabri since it was rereleased in like 05-06? I took a break from it in 2010 when like yourself I wanted to try for children. I was off it for a little over 3 months and had the biggest flare up I've ever had. It caused me to be hospitalized for a month and I've still not regained all of the functions it hit. Recently I tested JC virus positive. Because of what we knew happened when off of the Tysabri, my neurologist and myself opted to remain on the drug. According to my neuro with the small amount of virus thy found my risk factor is better than what was originally given to me. I've kept up on Tysabri and risk factors with pregnancy. Thus far the registry that was released recently showed no greater risk of birth defects than a normal pregnancy. Tysabri has been the only drug I've responded to so right now it's the best option for me. Good luck!!

September 11, 2013
A MyMSTeam Member

First they switched me the once ever two months. I have now started with Tecfidera. So far (a little itchy) so good

September 10, 2013
A MyMSTeam Member

I have been on Tysabri for 66 months. In my opinion it has been effective in slowing down the progress of the disease. The JC virus is a common virus found in over 50 percent of the population. The virus has minimal effect until activated by Tysabri causing PML to develop. This is a serious disease in which there have been 345 reported instances out of the 77,000 people who have used the the medication. As to dealing with the disease the one treatment that I have read about is plasma ferisus.
As to the withdrawal issues occurring once a person stops taking the Medication. There have been numerous reports about the disease coming back strongly once the medication is stopped. However these have been antidotal in nature without any statistical information on time period, number of people, or degree of severity being released.

September 10, 2013
A MyMSTeam Member

I tested positive so decided to try Aubagio instead. I have been on it for 2 months, and no real issues so far! My doctor agreed that this was the best route and we could always visit Tysabri later if necessary. I recommend doing all the research you can, the go with your best options...

September 10, 2013

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