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!

Thanks so much for the words of support and information.

I know that the PML is very rare, and that the antibody test just means that at some point I was exposed. But it's still super scary to me.

I didn't know that the IR was all or mostly all people who had plasmapherisis. I think I was conflating it with the possibility of a flare happening in the first 6 months of going off drug. So it's good for me to remember not to mix them up...

ok now i have to call to reschedule the infusion...

JD

2nd infusion down. exhausted the last couple days since, and itching all over later that day. otherwise good.

i asked them for complete cbc and they said yes but actually didnt do it. they dont listen to me

In the US, government legislation determines a "rare disease" is one that occurs in 1/1500 patients. PML's numbers, which started off at 1 /1000 for Tysabri users, is now about 1/500 for users that have been on the drug for more than 2 years.

Testing positive for the JC virus doesn't mean you will get it. Testing negative for the virus doesn't mean you won't get it.

Just makes deciding what medication to use all the more difficult.

Harry

My doctor was talking about the option of doing a spinal tap in the end of the summer (which is when I told her I was thinking of going off tysabri, as I don't want to risk another hard summer like it was last year at peak of the bad post-partum flare...) So that would be to look for different kind of evidence about if JC virus is there or not? Anyone have more details/experience with this?

Rescheduled infusion for next tuesday.

Have you spoken with your doctor about this, Clark? Are you taking anything, like benadryl or claritin or any antihistamine? Some folks premedicate before infusion with benadryl or one of the antihistamines.

Another thing you can try is having the infusion nurse rotate the bag gently during infusion to ensure that it remains mixed. That is what worked for me when I had what I called "pinpoint itching" during infusion. It was almost like having a flea biting me or something. As long as I didn't scratch it didn't get bad but scratching activates the histamines and makes it worse. Benadryl didn't work for me so I did an item by item look to see what might have been causing it, and found that the drug was separating during infusion (20 minutes or so into infusion) and we rotate the bag now and that stopped it.

Talk to your doctor! They may be able to help.

I had one LP when I was diagnosed. It took 5 tries to get the sample. I never want to do that again...so I don't have any experience with LPs other than that. I'd be asking my doc a lot of questions if he said he wanted another LP!

Hope the next infusion goes well. Let us know how it goes.

yeah LPs are awful. I've had two so far, the second was right after I was diagnosed... not eager to do it but if it could rule out or tell me I'm not at elevated PML risk, I think I'll go for it.

JD

While cleaning out files I found an excellent synopsis of JCV and PML risk.
I do not know where I got it. I am sorry I cannot give credit to anyone for it, but whoever it was, if they see this-THANK YOU!

PML (best guess and best evidence) is a multi step process....
First, you must get the 'standard' virus which hangs out in the kidneys and lymph tissue. During this short time, you will be JCV DNA positive. From this point on, you will also be JCV ANTIBODY (IgG) positive (after 3 to 4 weeks).

After primary infection, it goes dormant but may flare up periodically. When flares up you could be DNA positive.
Also, when it flares up, it may mutate.
When mutated, the infection usually is quickly controlled.
However, some mutated versions can go to the brain.

If in a brain with a 'normal' immune system, PML will not develop as the virus is quickly neutralized by resident immune cells.

With Tysabri (or Rituxan or some other drugs), there is less ability to control the mutated virus in the brain and PML may develop.

So, a person who was exposed to JCV will be JCV positive for the rest of their life but be JCV DNA positive only short rare intervals.....and when DNA positive, it does not mean the mutated form which may cause PML.

The STRATIFY study is for the JCV Antibody.
If JCV Ab positive, your risk of PML after 18-24 months is about 1:400.
If JCV Ab negative, then your chance is very small (probably 1:10,000 range).

The reason risk is not zero is because no laboratory test is perfect and because if you are negative, you have a small chance of getting the standard (non-mutated) virus infection in any given year and will then be JCV Ab positive,

If you get the standard virus, all other steps must happen to get PML.

thanks. i have an appt next month to see my neuro doc. sucks that it takes so long as i made the appt in january...


also i noticed my headache in the right front area of my head came back yesterday and my balance was all out of whack. i almost fell several times...