Quote:
Originally Posted by roadaction13
hi. I'm overdue for infusion 7 or 8 now. going through a break-up and single-parenting a 1 year old so things are really complicated. i'll try to do it week after next, so that's just a 1 or 2 week delay.
but i got the positive test result for JC virus. I know people who died of PML, because i've been an AIDS activist for 20 years and remember what it was like.
i'm really scared and sad. I don't want to be on this drug. I had 2 mild flares (sensory symptoms that totally resolveD) then a big scary one that started 2 months post-partum. I was diagnosed 3years ago but think i maybe had mild stuff going on going back 15 years before that.
So I appreciate what Tysabri has done, as far as putting the flare in check after 2 rounds of steroids and 1 round of IVIG didn't.
But the literature says that post-partum flares don't predict future progression or risk of future flares. So do I need to stay on Ty?
But now I've got likely-permanent neuropathy in feet and legs, and other more transient/less noticeable symptoms as a scary reminder that flares are real.
And I'm also scared of the immune reconstitution syndrome that could happen if I go off Ty.
I couldn't tolerate copaxone, the supposedly mild one - went down to every other day and still was too sick from it.
I'm thinking I'll stay on Ty to get through the hot summer, and then consider going off, and maybe on something else to see me through the risk of the immune reconstitution, and then decide whether to stay on or off treatment.
please share your thoughts with me. I'm sad.
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Hello Roadaction13 and welcome to our Tysabri thread! Sorry you have to be here but still glad you came!
Boy you have a lot on your plate and in your post. I'm going to piece through it and try to answer what I can.
First off- a positive JCV test does not mean you will get PML. We don't know yet what the test results will mean. The reason I say this is we don't know what triggers PML. We don't know how people get the JC virus and we don't know whether it is all variations of JCV or a specific subset of JCV DNA that has mutated that starts PML. We just don't know. Those of us who test negative could test positive in 6 months and not know how we picked up the JC virus. There's a lot of unanswered questions.
Knowing what you know and seeing what you have seen with AIDS patients has got to be hard to deal with, especially when you are on a drug that could trigger the same scenario when it comes to PML, but not all people who test positive for the JC virus get PML, otherwise 50-55% of us would have PML, wouldn't we? Again, it means we don't know all the variables.
As far as IRIS goes, it seems that it's people who undergo plasmapheresis who develop IRIS. I'm not saying that discontinuing Tysabri won't cause IRIS but the data says it's after reconstitution of the immune system after plasmapheresis is when it is seen most often. Many, many people have discontinued Tysabri and gone on other meds with no problems. I've searched and can't find anyone who developed IRIS after quitting Tysabri, but there may be some out there we just haven't heard of. I do know most people go onto something else after clearing Tysabri from their system on the advice of their doctor.
As far as going off Tysabri, that is a decision you and your doctor have to make together. There are folks here who have gone off Tysabri and started other meds, and I hope one of them will pop in and give you some information as to how they are doing now.
I don't know if any of that helps you, but if you want to talk, someone's always home!
