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.

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.