PML isn't the only thing to worry about when taking tysabri infusions - back in '08, I was on tysabri for five months; then my white blood cell count shot up to drastically high numbers, and I wound up getting diagnosed with viral meningitis - all because the tysabri depleted my immune system soooo much... I wouldn't recommend tysabri for anybody, UNLESS they are complete homebodies who never leave home, never shake hands with folks, and are very vigilant in guarding their health - I say thumbs-down to the tysabri... -drew
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I was on Tysabri for 27 months. Right at month 27, the study came out saying the longer one is on it, the better the chances of PML. What also came out at the time was that there was a test to see if the JC virus was present in someone, even though dormant.
My neurologist at the time said he couldn't live with the odds of Tysabri after 24 months, and asked me to stop. His next option for me was pulse steroids and Rituxan.
It's my understanding that a high percentage of humans have the JC virus - maybe 75% or something like that. I'm pretty sure Biogen wouldn't be too thrilled about having all Tysabri patients checked for it, but isn't that the right thing to do? At the very least, neurologists or patients should insist on that test.
I believe that Biogen is going to squeeze every last penny out of the unbelievably expensive Tysabri treatment until they are forced to stop.
Tysabri most certainly stopped the progression of plaques in my brain. It did not stop exacerbations for me, but did reduce them. At first, I was really sad to be stopping it. It was so great to have a treatment that caused me ZERO side effects. At the same time, I was uncomfortable with the cost. Even though my insurance covered it, it seemed almost irresponsible to me to be on a drug that cost over $40K per year. In addition, I didn't trust what it was doing to my immune system, long-term. So in the end, I was relieved to go off of it, although I felt some fear.
I was not interested in pulse steroids or Rituxan. I chose to try LDN, to continue with the MS-Diet, supplements, etc. I haven't had an MRI since stopping Ty, and don't know if I will. I've had one exacerbation, which I chalk up to the "post-Tysabri" effect.
LDN doesn't work well for me because it disrupts my sleep and I have found no way around that - believe me, I've tried. So for now, I'm living with the way things are.
I am so very sorry that Tysabri has caused so many cases of PML, and that PML has taken lives. That is a horrible risk for anyone to have to take. I think testing for the JC virus is the humane thing to do.
What about Gilenya?
Hi Chilax, here is the information we have on Gilenya so far.
I receive healthcare at Kaiser Permanente in Oregon. I was just involved in a study to detect the JC virus. I did indeed test positive for the antibody (aprox 50% have been testing positive) The protocol at Kaiser is to recommned a four month drug holiday after 18 months of tysabri use. I have elected to stop at 17 months becuase of just spending a day in the ED with infectious colitis. I became VERY sick after consuming chicken, either cross contamination or undercooked. I have been sick off and on for the past 4 months--> shingles, upper respiratory infection , pink eye and on and on. I am tired of being sick I am considering not resuming the tysabri but of course am nervous.