tysabri pml jc virus

I wonder if you can still get treatment with Tysabri if you test positive for the JC Virus. My sister has been on Tysabri for three-four years now and is positive for the JC Virus. She's got nothing but great things to say about the drug . . .

Is your CSF JC positive as well? That is being reported as a more sensitive indicator of the JC virus. The first 24 months are the safest when JC negative. There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.

All 54 patients with PML for whom samples were available before the diagnosis were positive for anti–JC virus antibodies. When the risk of PML was stratified according to three risk factors, the risk of PML was lowest among the patients who were negative for anti–JC virus antibodies, with the incidence estimated to be 0.09 cases or less per 1000 patients (95% confidence interval [CI], 0 to 0.48).

In the time I have been taking Tysabri, they have obtained much more data, as more and more people began taking Tysabri and staying on it longer. The JC virus test has been very helpful, allowing people who are negative to go on Tysabri with much less worry of PML, as well as giving people who test positive a better idea of the risks and allowing them to make more informed choices and decisions. At this time, they have identified 3 main risk factors for PML while on Tysabri: 1.

I got the official JC virus results, and I am JC positive. We are still staying with the Tysabri at this point, since we feel it is helping me.

Does anybody have any experience with Tysabri? I just tested positive for the JC virus and my doc still wants to put me on it for 6 months. He says that the risk of getting the brain infection is very low since I will only be on it for a short period of time. My other option is to go on Gilenya, I am not sure what to do.

The equivocation comes from the occasional false negative of the JC blood test, so that the very rare person with PML and a negative result on the JC virus mostly likely actually has the virus which was not detected. There was some thinking that a Tysabri vacation could help prevent PML. I have not seen this evidence. Now - what I am about to talk about is not published and no one should act on it, but it is very interesting.

Kate, your friend hit the lottery with being JC Virus negative. There has not yet been a single case of PML reported of anyone who is JC Virus negative. This is an important item to discuss with the treating neurologist. I'm glad Rita came out and offered to talk with you about her experiences. Please consider taking her up on it - she is one of our resident experts on Tysabri, and is always willing to chat privately.

i have read up on tysabri and i dont like when i have read,they drew blood today to check for the jc virus.

I'm glad you stuck that up for discussion - I glanced at it briefly yesterday and thought it was significant. It made me think of you, Kyle, with the repeat LP to check for the virus. I'm due for my next JC virus assay in July- I hope it continues to be negative, but I will definitely ask a few more questions than usual.

I just saw a MS neuro at OSU hospital. He asked me whether I was interested in being in the Tysabri study. I am only 37 and have only had one relapse. I know I will be deciding on a treatment and not sure what direction to go. This neuro is big in research and he spent a lot of time talking with me about MS. He mentioned a JC Virus and took my blood to look for it. If I don't, I would be a good candidate for Tysabri. It has 67% reduction in relapses but also risks getting PML.

I'm just curious - what kind of study are you involved in? I'm on Tysabri too... just had blood drawn for the JC virus antibody study. Is that the one you are talking about?

Or the JC Virus? My neuro said he thinks that sex can increase your risk of becoming positive, however in studies ive read it looks like theyve found a link between the virus and contaminated food/water.

I am still scared about Tysabri but I read up on PML and you have to have the JC virus because that is what triggers PML. Can I catch the JC Virus tomorrow at the grocery store, absolutely, 50% of ppl carry it. I need to read more on that when I get the energy So my decision at the moment (my local neuro decided to fax my last report to UCSF...

My Neurologist is not a big fan however. She will suggest almost anything before discussing Tysabri, but now with the JC virus test, she seems to be warming up to the drug. I am going to put it off for a while and think about it. Luckily I haven't had any immuno-suppressant treatments so getting a negative JC test would certainly make me a good candidate for Tysabri. I just want to give IVIG a bit more time.

HOWEVER if you continue to test negative for the JC Virus there is no reason you should have to stop tysabri if it is working for you. In fact, stopping Tysabri is shown to cause serious relapses and is not something fun to go through. I would talke to a different doctor about tysabri and get off the holiday idea. Of course if you test positive for the JC virus, that is a different story entirely. good luck in working this through with your medical provider.

Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML. I believe she was told the odds went up to 1 in 800. However, she was also told that if she were to stop tysabri she was pretty much guaranteed to have an attack of the MS. She has an agressive form of MS and other medications don't seem to work.

She told me I was negative for the JC virus and would like to know my thoughts about this. Would I be willing to try Tysabri? She knows I was overloaded with info at the last visit and wants to go over all this. She said she has done lots of "thinking" about what med would be most effective for me. I appreciate her doing her job so well. I have total trust in her, but am really nervous about this med.

t think I would trade procedures, even being JC+. Every drug has a risk and PML is the only one associated. No one on ONLY Tysabri has come down with PML, only those on TWO or more drugs. Go to Tysabri's website and download the Patient Information Sheet and read it. The nice thing is that its not considered under your regular "drug" section of insurance but under outpatient procedures........

Then it appears your neuro has suggested Tysabri, but has done a horrible job spending time with you and explaining the drug. You can still take Tysabri if you test positive for the JC Virus - we have some people here who do so with also being positive. You can also take Tysabri for longer than two years - the risks if you are JC positive change some, and you have to consider if it is worth it or not . That is a case by case decision.

I've been on Tysabri for 28 months and continue to test negative for the JC Virus, so it is a no-brainer for me. They screen for JC and liver function every six months but would do it more if I reguest. Kat mentions what I like best - besides that it is working for me - is this is just one day a month that I set aside to do my infusion and then I don't think about it again for another 27 days. I don't have that constant reminder with daily injections that I am sickl.

Friday I called my neuro to find out if they want me to do a washout period on Tysabri, as they are considering me for the new drug out in March. I've ben on Tysabri almost a year and JC+ from the start The nurse told me my test showed 1.03. which means nothing to me. Anyone know anything about this test?

Tysabri pml jc virus

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