tysabri antibodies

I had blood work done about 1 week before infusion #4 and found out last week that my tysabri antibodies test came back positive. Going tomorrow to see the dr for next step. Anyone have this experience of developing antibodies so quickly? What meds have been offered after tysabri?

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).

I have MS and Neuropathy. I am currently on Tysabri. Previously I was on Betaseron and IVIG. When I went to Tysabri my doctor took me off IVIG and now my Neuropathy is worse, my feet and legs are on fire. Does any one know if it is safe to be on Tysabri and IVIG at the same time? My doctor said she would need to consult with other doctors before she would add IVIG to my treatment.

There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

Which (CRAB/Tysabri) medication do think has the least side affects? Please vote because this poll is for an individual trying to make a serious decision, and the doctor told this person to choose their own treatment.

At my 3 month blood work my test for tysabri antibodies came back postive. My dr says that sometimes people will inially test positive and then later negative. He urged me to continue for 3 more months and then to retest. If the test is positive again then I will need to change to another therapy.

My mom has battled MS for over 20 years now and is now wheelchair bound. She has been on every medication available with little results, and has now been on tysabri for almost two years. 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.

I was taken off the Tysabri because I have antibodies to the JCVirus. Long story short with that...if you are on tysabri you run the risk of PML. Well if you have the antibodies to this virus then your chances of getting PML go up dramatically. It was a risk I wasn't willing to take any longer. So if you get off the drug, then there is no chance of PML. Our docs have evidently done a study or found a study that links the 2 together. Right now, the MS is back to "normal"...

- but there is no evidence that will reduce the risk of PML at this point. Plus, while you are off Tysabri, you could develop antibodies, and then it would not be effective if you start it back up ... and there is the issue of the MS having sort of a "rebound" effect once Tysabri clears the system totally, in 2 -4 months or so. At this point, we are staying the course - but we re-evaluate the situation each month when I get my infusion.

The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.

I am wondering how long of a timeframe you have experienced to get over a flare? I know this is a strange disease and no two people are ever the same so one can never tell. I was diagnosed almost 4 years ago-my first initial symptoms were left leg weakness/heaviness, being very tired , facial numbness and tingling in my rt arm. I started avonex and the flare lasted about 3 months.

I have been on every MS med and only the Tysabri was effective. I eventually tested positive for antibodies for PML and was taken off. I am back to deterioration. Tysabri was miraculous...use it if you can! Now I want to try stem cells.

ask your neuro about Tysabri.......they can run the JC virus test to see if you carry the antibodies (the brain infection thing) my neuro swears by it as one of the best out there plus you only have to desl with it ONCE a month. they sit right there with you during your infusion and an hour afterwards and then you are done foe a month. I sat last month with a young man who has been on Tysabri since 2006 and he says its the best. Take care and keep us posted, regardless of what you decide on.

Over the last 12 years he has been on all the ABC drugs. Now he is completing the 2 year mark of using Tysabri. Dr Appointment in 2 weeks assume he will stop infusions. I wonder what is next???? How are others doing after all these treatment and now what do they take???

s as part of JCV/PML detection protocol. I am having a blood test, brain MRI and an LP every 6 months as part of my Tysabri treatment. This article from the Journal of Neurology discusses this protocol. http://www.msrcny.org/sites/default/files/articles/JCVpaper.

Only people who have been exposed to the JC virus and developed antibodies (about 65% of the population) have contracted PML from taking Tysabri. PML is a disease of the brain, which is usually fatal or at least debilitating. There has not been a single case of PML in people who are JC negative. Being JC negative for me was great news. I had been on Copaxone for over three years and did well until late summer.

Food for thought for those on, or conteplating, Tysabri. Blood antibody testing for JCV may not be enough. http://www.medpagetoday.com/Neurology/MultipleSclerosis/39649?

My neuro decided to send me to UCSF to see if Tysabri would work for me. We had a LOOONNNNGGG talk about the risks and the specialist gave me the impression that the risks were MUCH lower than they are. He also gave me the impression that if I tested negative for the JC virus antibodies that my risks were almost nil..

I found out today that (my Nuero speaking now), I am positive to binding antibodies but negative to blocking antibodies. This may be his way of saying its low. I asked about the titer and he said 0. Told me to stay on Avonex and retest in August. If I increase on the blocking side, which he said may happen then I will have to look into another therapy. He said that this is the typical pattern of developing the NABs and that I could go either way at this point.

I am positive for the antibodies for the Tysabri and my first episode was not bad. He was the first doctor for the ms and made me believe that I was going to get a lot worse if I didn't do the Tysabri. I'm sure the drug company pays him a lot. As far as fudging just a little on my speed test the new doctor thought it would help me, which it has. It is not for drop foot and I don't have that! You welcomed me to this site and encouraged me to share.

he is now on steroids and has to decide what med to go on. he had to stop the tysabri because he was building up antibodies against the medicine. he former doctor suggested he go off it and consider the oral medince. since then his doctors prtice closed and now we are seeing a new doctor. we are very confused. does any one have any advice?

As Immie mentioned, both Lemtrada and Tysabri are monoclonal antibodies (MAB). Both are delivered via IV infusion. Tysabri is given monthly. Lemtrada is given over 5 consecutive days and then not for another year. I get a 3rd MAB called Rituxan. It’s given via IV every 6-12 months. All 3 of these drugs are a step up from the typical first DMDs like Copaxone, Ribif, Avonex and Betaseron. Rixtuxan may be two steps up.

Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!

Tysabri antibodies

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