I think I missed something

[RoyceNewton]

What has the JC virus got to do with tysebri I thought it only related to Gilenya

[Kenu]

Tysabri has the same effects and can cause the JC virus 🦠. While I was on Tysabri They ran blood work on me every month for seven years to watch for this. Luckily it never developed 🙏 Ken 🐾🐾

[Kompany in reply to Kenu]

I was put on Gilenya & was taken off because I kept getting a lot of infections. Then they wanted to put me on Tysabri but I tested positive for the JC virus. I had already started infusions! I was able to leave with no problems. But I made the decision to stop therapy because I didn’t want to take chances with the virus.

I was floored when I found out that I had been taking a medication that could cause the JC virus & I wasn’t told. But looking back, he was a terrible doctor 😒🤨🙁

[RoyceNewton in reply to Kenu]

thank you

[Raingrrl]

Tysabri, which I was on for 5 years, has a risk of causing PML if the patient has JCV antibodies in their system. There is an index that quantifies the risk for JCV positive people and there are lots of examples on the Internet if you want those details.

There is a lot of confusion around this as you can see from the other answers. Tysabri doesn’t cause JCV but if you have been exposed to JCV and carry antibodies to it in your blood, then you have a risk of getting PML if you go on Tysabri. PML is a deadly brain disease that can result in terrible disability or even death. Your risk also increases as you continue on the drug. This is why my neuro made me change to a Ocrevus even though I was doing well on Tysabri.

[RoyceNewton in reply to Raingrrl]

Thank you

[ahrogers in reply to Raingrrl]

In addition to this info I will add that the first drug I was given was Gilenya because it didn't have the PML risk associated with the JCV. My level was too high so Tysabri was off the table. Gilenya does have a potential side effect of vision issues for which I had to see an ophthalmologist every 6 months for testing. I relapsed after 6 months so switched to Rebif at that time. Now on Ocrevus.

I think my neuro said something like 80-90% of people have the JCV just at different levels. Also, each persons levels can rise and fall.

Personally I like the schedule of only going every 6 months for an infusion and practically no side effects with Ocrevus so plan to stay on as long as it continues to work. I have been on it 3 years now and doing well.

[RoyceNewton in reply to ahrogers]

sounds like an excellent plan stay well

[Bkboo]

They ran blood work on me before I even started Tysabri and while on Tysabri to watch levels.

[RoyceNewton in reply to Bkboo]

thank ou

[DoraAnn3265]

I was on Tysabri for 7 years, until I tested JCV + ....I have been on Ocrevus since then.

[RoyceNewton in reply to DoraAnn3265]

thank you

[Bkboo]

every body had the JC virus

[RoyceNewton in reply to Bkboo]

nice to know, you learn something new every day, at least I do

[Bkboo]

Roycenewton...they test are done to see levels of the virus...some are low and remain low while on Tysabri, not a problem. But some levels are tooo high and can increase the chances of PML.

[RoyceNewton in reply to Bkboo]

thank you

[kdali]

No, it can be a problem for several medications and diseases. My labwork was high and I was limited to only Ocrevus or the first generation shots, for example. Most people are exposed to the virus and the lab value will be quite low, meaning their risk for developing PML is quite low. There are some doing so well on Tysabri that once their JC labs come back concerning, the dose will be delayed a few weeks so the person can stay on treatment without their labs becoming worse.

I believe that PML use to only be found with AIDs patients, but it’s been a while since I went down that rabbit hole.

Hope this helps!

[RoyceNewton in reply to kdali]

thank you

[CV97]

Tecfidera is also on the list for meds that can cause PML when JCV+.

[RoyceNewton in reply to CV97]

Thank you first I ever heard of this after 10+ years on tecfidera