Natalizumab was approved in 2004 by the FDA for multiple sclerosis (MS). It was subsequently withdrawn from the market by its manufacturer after it was linked with three cases of PML. All 3 initial cases were taking natalizumab in combination with interferon beta-1a. After a safety review the drug was returned to the market in 2006 as a monotherapy for MS under a special prescription program. As of May 2011, over 130 cases of PML had been reported in MS patients, all in patients who had… read more
I am on Tysabri. They checked for the JC virus but never told me if I was positive or negative. The Doc. did tell me he would only keep me on Tysabri for one year. I made to decision to go on Tysabri based on the fact that I have a leison on my cord at the C2 that grew twice the size in 6 months time. And I developed another one on my cord at the C3. So if they keep growing at that rate I will have a disconnect and that will shut me off like a switch. So I'm damned if I do or damned if I don't. I know they will be drawing blood every two months. So there you have it. Sometimes there are no other options.
Symptoms of PML can develop over several weeks to months. Symptoms depend on location of damage in the brain and the degree of damage. The most prominent symptoms are "clumsiness, progressive weakness and visual, speech, and sometimes personality changes" The lesions affecting the parietal and occipital lobes can lead to a phenomenon known as alien hand syndrome
There is a lady on this site with PML. Look under q&a. I take tysabri. I got off it after 2 years and crashed and burned on tecfidera. No problems w tysabri. Jc negative. Got back on it. Had three Neuro opinions. All said tysabri is the best. And the risk minimal. I have blood tested every 3 months. No problems.
@A MyMSTeam Member what is your doctor doing about the PML?
I have PML but there is only one spot of it. It wasn't official until the beginning of May 2015 but it can be seen in MRI starting in September 2014. I was taking Tysabri for 4 years. It was stopped in December 2014. It is hard to tell symptomaticly what is ms & what is PML. The Tysabri touch program told me it wasn't PML because I only had one spot but I was diagnosed by NIH via a brain biopsy - I definitely have PML.
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