JC Positive!!!

[xedenitex]

Due to have 26th infusion of Tysabri on Tuesday but was told on Friday I am now JC positive.
Surprised doesn't even come close.
The last 2 years of my life have been fantastic and, with only 2 minor relapses, almost symptom free, after a varied and sometimes awful 8 year MS History (at one point I was totally wheelchair bound and unable to clean my own teeth). I thought I'd stay on Tysabri forever!

I have a soon to be three year old daughter and the prospect of being like I was terrifies me. I was recently diagnosed with Sjogrens syndrome which has been far more distractingley painful than my MS has been. (I've always found that after time the painful MS symptoms become like background noise, no less painful but not all consuming after a while) and was due to start hydroxychloroquine on the 21st Oct. My MS consultant, Ben, has recommended I have the infusion on Tuesday, he is attending a conference where he hopes to consult with others about my situation on Wednesday but is very concerned about starting any other drugs whilst the Tysabri is still in my system (he says it will take about 3 months to flush) as PML has occurred more frequently in those taking combined medications.

At a total loss, any one with any similar experiences, advice or suggestions feel free. Feel if PML don't get me brain may explode anyway!!!

[rdmc]

I don't use Tysabri, so I'm not as informed as I should be. But I wanted to ask explanation of your post. I thought that most of the population was JC virus positive, something like upwards of 80 percent.

Any info you could provide would be appreciated.

[0485c10]

rdmc- I believe you are right, that the majority of the population is thought to be JCV positive.

I asked my doc if I could get the blood test, which is now a part of 2 trials: strata 1 &2.

She said no the clinic would not participate in the trial because at this time they would take no actions based upon a positive test, until the results of the trials are finalized in 2 years. She said what does a positive test mean when someone could get the virus a day after having the blood drawn for the test? Kind of like because you have a negative strep throat test today, does not mean you don't have strep throat next week. It just means that right now you don't have strep throat & that was the doc's thought at my clinic--they have more confidence on the Touch monitoring program than the JCV test, until the trial is completed and what the JCV test means is determined.

I read one post that their doc's have decided to put those with a positive JCV anti body test on a 3-6 month Tysabri Holiday, resuming tysabri after the suspension is over. And another person who has to decide whether to switch to Gilinea or (Copaxone + Methotrexate).

From what I have read on the JCV test it is part of the strata trials, meant to stratisy(seperate) Tysabri users without the JC virus from those that have itt. Those without the JC virus should be at a low risk of PML, those with the virus would be at the risk now quoted for PML --1.46 per 1,000 for those between 2 & 3 years.(I'm going for #26 on thursday too)

The idea of testing for the anti body for the JC Virus came about when 11 people who had blood samples saved from before the got PML ALL had the antibody for JC Virus. But if only 50% as was speculated have the JCV or even 80% have JCV at least one who had gotten PML should not have had the JC virus. But all did have the virus.

Hence it was assumed that the JCV antibody was a necessary requirement to get PML---(necessary but not sufficient, some can have JCV and use tysabri without getting PML????)----so the trials started to separate those using Tysasbri with JCV antibodies from those using Tysabri without JCV antibodies.

All that is needed is one person to get PML while using Tysabri without having JCV antibodies to disprove the basis of the trial.

The strata trials is 1& 2 because one trial is just to test for the JCV antibody & the other one is to test if the JCV antibodies become more prevalent after using Tysabri?

Once aquired the JC virus can lie dormant in the bones, kidneys, spleen, throat + other organs. Does tysabri disloge the JC virus where it is laying harmlessly dormant and cause it to get into the blood stream where it can mutate and go to the brain?? As some researchers have speculated. So that is what one of the strata trials is testing if the JCV antibodies become more prevelant after tysabri use? and one trial just to test the JCV antibody positive status of Tysabri users---and the PML risk from that.

Its a big hope for us Tysabri users that finally something will predict PML risk---but really its not that certain. It will be interesting what your doc advises. Please post that & be well. We are all interested in it & with a 3 year old child you have too much to lose from PML if PML happens to you.

[rdmc]

Thanks for the great explanation of why they're testing for this. I was confused thinking what difference did it make since most people carry the virus. Now I understand why they're doing it.

Hi

I was told by my Infusion RN also that so many people carry the JCV virus, it is kinda like the CMV virus or herpes virus. He said the TOUCH program just keeps closer tabs on people with the JCV.
BTW, he said the initial symptoms of PML are visual problems,
but that is just what I was told when I asked.

[lindaincolorado]

Thank you 0485c10 for the great explanation
I will get tested in about a month when I get to my AZ neuro (I am a snowbird) and hope I am negative but I plan on staying on Tysabri whether neg or pos.

[Scooter24]

We had Nuero as quest speaker at support group yesterday and they said that the test they are using is only about 80 % accurate from what they have seen in the past.