Tysabri & Immunosuppressants

[beadyeyes]

My questions is since having taken immunosuppressant puts you at risk for PML when taking Tysabri are there any known risks with taking immunosuppressants after discontinued use of Tysabri?

[AnneLouise]

I know this doesn't answer your question, but personally, I don't want to suppress my immune system. I feel my immune system is misguided, not overactive.

[beadyeyes]

The reason for my question is to determine if after using Tysabri, if I were to be diagnosed with cancer would I be at particular risk for PML from chemo drugs....kind of double jeopardy!

I don't particularly want to be on immunosuppressants either, but just curious as to how taking the Tysabri risk could play out further down the road.

[Redwings]

Remnants of Tysabri have been found in cerebrospinal fluid up to six months after discontinuation. After sufficient time has passed and all remnants of Tysabri are no longer detectable, the risk of PML diminishes. I don't know what the statistics are about the incidence of PML based on length of time after discontinuation of Tysabri, but I'm sure they're available somewhere.

There was a recent case of PML after the person stopped Tysabri and started Gilenya after just a few weeks, while Tysabri was still circulating. The person posted on this forum and seemed to be very forgiving of his doctors. But with so little time passing and the risk of PML being so high, the neuro's choice to downplay the risk and start Gilenya anyway was just plain stupid.

I also don't know what the risk of PML is for immunosuppressants and chemotherapy after Tysabri discontinuation based on length of time. Chemo agents carry their own risk of PML, so you'd be at risk of developing PML anyway. But -- in theory -- if the med that's more likely to cause PML (Tysabri) has cleared out of the body, there would be less risk of PML from "double jeopardy." Cancer is probably more likely than PML to be fatal, so the risk of PML is assumed along with all of the other risks.

[beadyeyes]

Thank you, Redwings. I did read Jim's posts about his PML...I hope he is doing well.

Your explanation sounds highly valid...not being a medical person I wouldn't know right or wrong...but it makes sense.

I did email my MS NP and asked the same question...waiting for a reply.

Thanks, again!
Angela