Last reply 3 years ago
Gilenya Patient has been diagnosed with

Hi I just got this letter from my neurologist that a gilenya patient was diagnosed with progressive multifocal leuconcephalopthy (PML) is an opportunistic infection caused by JC VIRUS. It’s typicall seen with tysabri patients.
This is the first case of PML SEEN IN 114,000 gilenya treated patients. However many of these patients have only received gilenya for less than 1 year ( total experience is 196,000 patients years)

I just thought I’ll point this out. Im on gilenya nearly 1 year so going to see my neurologist on Friday.

My gilenya has been dragging me down lately, I just got this letter the other day.

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3 years ago

3 years ago

Looks like PML is effecting one treatment or another- so far Tysabri (most of the cases here), Tecifedera and Gilenya- all of them for slightly different reasons but the base reason is that all are immune suppressants.

The PML virus is carried by most of us but our immune system keeps it in check. When we suppress our immune system this virus can gain a foot hold.

So far PML has not been tied to Lemtrada (one case in Campath (alemtuzumab is the base drug in both but used in much higher doses for cancer treatment), but not the doses used in Lemtrada.

This may be just a matter of time or it may be that with Lemtrada you are not immune suppressed for as long as you are with other MS treatments.

PML is real and the consequences are no joke. Here is a good overview of PML if you are seeking more answers:

Take care,

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