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

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.

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...

I got the infusion with the usual bit of fatigue that day and next day but no other troubles...

I also got a bill from the hospital for $10,608 a few days before that, so something seems to have gotten confused between my insurance company so I've left a bunch of messages and will have to follow up on that!

I'm at an HIV medical conference and am going to talk to some neurologists here who have been dealing with PML through the years, to see if they can help informally speculate on things to consider for those of use doing tysabri while antibody-positive for JC virus...

best to you all,

JD

It is three weeks today since I had my first infusion. But, now for the past 4-5 days, I have had very red irritated, watering eyes, burning/tingling/aching down my right arm, burning mouth, extreme fatigue, vibrating sensation in my left buttocks and down my thigh, as well as a severe migraine for 4 days straight, and this feeling of an internal tremor (I have never had this before) it is from my brainstem area to my stomach....like I am shaking inside.

Do you think this is a Flare? or a reaction to the Tysabri? about one week after the infusion, I had a irritated, runny, congested nose...and off and on abdominal cramps (that lasted about a 5-6 days)

Clarkstar, I premedicate with benadryl 30 minutes prior to an infusion. It helps me a lot!!!!!!!!!!!!!!!!! Itching is a problem for me all of the time. I would never make it through an infusion without my benadryl My side effects include fatigue, headache, pain in my arms and legs.....sometimes I feel slightly feverish. The side effects for me last anywhere from a couple of day to a week. But, usually they are only there for a few days

My infusion center doesn't like to do blood work either I have to beg to have my blood drawn. If they don't do it every 3-4 infusions I go to my dr and have them do a blood test for me.

good luck!!!!!!!!!!!!!!!!!
Shayna

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.