I was on Tysabri for 41 months. For that time I had zero relapses and I basically forgot that I had multiple sclerosis. Unfortunately I have the JC virus. Tysabri caused it to build in my system and caused PML. PML in turn caused a lesion on my cerebellum which has caused disabilities. If your doctor is suggesting to take Tysabri please push them to have you take the antibody test for JC virus. It's a simple blood test that won't even take more than a half an hour to an hour of your time. The short test will definitely save your life and save you from serious disabilities. I'm lucky I was transferred to a doctor at the University of Chicago that worked with another neurologist at Rush medical center that alleviated the number of patients with PML. I cannot stress enough how much I wish this test was available prior to the starting Tysabri.
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Hello emin21
I am sorry this happened to you. You didn't say how bad your disabilities are. Did your dr catch it early?
Have you started another med?
I hope you continue to get better.God Bless Us All -
Thanks for your public service of announcing what happened to you---but we would kind of like it if you would go into more about it. its nice that someone who survived PML is finally posting somewhere.
when did you first notice the pml symptoms? what were they?
what was done to diagnose it?
what was done to treat it?
did you get IRS after tysabri was stopped?(inflamatory response syndrome?)
in an article a few months ago they wrote of someone who had used an immune suppresant in the past & got PML within 6 months of starting Ty. He survived with some disability but he did not get IRIS and it was speculated that delaying plasmorpherisis..just stopping Tysabri when PML was suspected then delaying plasmaphoresis for a few months might have prevented the over active immune response of IRIS, which would have cause much greater damage. kind of a gentler re-introduction of the immune system into the brain???
Again thanks for posting, this decision to use tysabri is a personal risk versus benefit analysis and as tysabri has been used more they have gotten much more flexible on how much risk is needed.xxxxxxxxxxxComment
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emin21 -
Sorry, I sort of don't always read all the post before I respond to one.
I am so sorry you have to go though this. That just is so unfair in only trying to treat your illness, that you end up with what may be a worse one.
I have exchanged emails with someone who has been fighting PML for two years and it helps me to stay focused on watching very carefully for symptoms. So many of which are just like symptoms I have with the MS.
I too would really appreciate it if you could go into more detail.Comment
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emin21, I, too, am so very sorry this happened to you ...
I, also, would appreciate more info, especially if you had prior use of an immunosuppressant .
I hope you are doing really well!!!
LindaLinda
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emin21
I wish emin21 would respond. I read his 2 other posts and they are both about the same. I've had #64 and am always looking for info.Comment
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Also thank you . . .
The PML is rare they say. I did have the antibody test and now I am glad I did. That is the thing about MS in general there are a lot of new meds. The FDA is allowing approvals to be rushed (compared 20 years ago) so that you really need to be cautious. That is tough for those of us with MS. You are always looking around the next corner for hope. I hope you are better and thanks for sharing.Comment
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emin21, WOW thank you so much for your post! I am so sorry this happened to you. I too would like more info if you are willing to share. I just had infusion #15. I had the blood test since I went on Tysabri and have test negative every time I have taken it but now go on 6 month PML tests. I go to Northwestern and my Dr is very attentive of Dr visits, MRI 's, blood tests new symptoms, etc.
I really appreciate your sharing! I am glad I go to one of the top 3 MS hospitals in the Chicago area and the top 5 in the country. Rush is one of them too!Comment
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