FAQ/Help |
Calendar |
Search |
Today's Posts |
![]() |
#11 | |||
|
||||
Magnate
|
Quote:
![]() 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! ![]()
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
|||
![]() |
![]() |
|
|
![]() |
||||
Thread | Forum | |||
LDN Information & Check-in 2 | Multiple Sclerosis | |||
Tysabri Information and Check In part 2 | Multiple Sclerosis | |||
Tysabri Information & Check In | Multiple Sclerosis | |||
LDN Information & Check In | Multiple Sclerosis | |||
Looking to Share Information & Support | New Member Introductions |