Allen5280

Don't forget Tysabri, I thought 8t had the worst issues with JCV causing PML? I may be mistaken but that was the info I recieved at the start of my searching stuff about DMT's. I could be wrong but I know at one time Tysabri was removed from the market here in the US because of it. A friend of mine uncle has MS and he told me at the time it was removed he was apart of trying to get it back cause it was doing good for him.

RoyceNewton in reply to Allen5280

I do not recall it but that means nothing, hope your friend's Uncle is doing well

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hairbrain4 in reply to Allen5280

Tysabri was removed in 2005 or 2006 due to PML. Once they found out it was the JCV causing the problem they brought it back on the market & test for JCV every month just like they do for Tecfedera.

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RoyceNewton in reply to hairbrain4

Great, okay I have to talk to the neuro about that now. oh ms os such fun.

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MS_Indestructible

JCV was a direct result of Tysabri. When is first came to market, a few people quickly came down with PML and many of them died. Tysabri was taken off the market till John Cunningham {I may have the last name wrong} developed a test for the virus that causes PML. The test was named after him. So it is a test for risk assessment of getting the the virus. The test was developed in order to bring Tysabri back to market. Since than JCv and the risk for PML has been greatly misunderstood and fear has taken presidence over logic. Anyway, the risk for PML possibly applies to Gilenya but the JCv test was not developed for Gilenya originally.

However, you are correct, JCV has nothing to do with Ocrevus and people need to understand that. Ocrevus is a direct result of Rituxan, which has been used off label for MS for many many years. Rituxan has been on the market for 20+ years and only had 3 reported cases of PML. Two were for on label use and not related to MS patients. Of the one case related to a MS patient, the patient had just changed from Tysabri and the PML was determined to be related to the Tysabri infusions.

Therefore Ocrevus is expected not to have any reported cases of PML and is considered the safest and most effective DMT for MS patients.

In my opinion [due to the fact that I take it], Rituxan is number one. But alas, I concede that I am out numbered, thus making Ocrevus number one.

Thanks RoyceNewton for bringing this subject matter the attention it deserves.

RoyceNewton in reply to MS_Indestructible

No problem and thank you. These are details that I did not know about or perhaps care to remember. O like Tecfidera., two tablets a day is very easy and no needles in my scrawny butt anymore.

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MS_Indestructible in reply to RoyceNewton

Yes, I can relate. Unfortunately I'm PPMS and Rituxan has been the only DMT that has done me any good. I had to go thru many of the RRMS DMTs first. I am happy that I no longer have to use a needle on a daily or weekly basis. Please be good to U and keep the great posts coming. ~terry

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Raingrrl

The misinformation about JCV and PML here continues it seems. Info is power but it needs to be factual.

Here is a clip from the following link talking about JCV, PML and Tysabri.

sciencedaily.com/releases/2...

“Progressive multifocal leukoencephalopathy (PML) is a rare and often fatal disease characterized by damage to the white matter of the brain. It is caused by the John Cunningham virus (JCV), a common virus usually kept under control by the immune system. But people with weakened immune systems, or on immunosuppressive drugs, are more susceptible to JCV-related problems. Natalizumab prevents immune cells from getting into the brain.

"An increase in the levels of anti-JCV antibodies could signify an increased risk of PML," said study senior author Heinz Wiendl, MD, of the University of Muenster in Germany and member of the American Academy of Neurology. The level of antibodies is a marker for exposure to JCV and therefore the risk for PML.”

CarolynK23

It’s early, so I can’t quite see straight to write much, but JCV and PML *are* concerns with Ocrevus and JCV testing before Ocrevus is recommended.

From Ocrevus labeling;

“Although no cases of PML were identified in OCREVUS clinical trials, JC virus infection resulting in PML has been observed in patients treated with other anti-CD20 antibodies and other MS therapies and has been associated with some risk factors”

Iona60 in reply to CarolynK23

I ask to have my jcv levels tested before each ocrevus infusion. Better safe than sorry.

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RoyceNewton in reply to Iona60

good point, no need to add problems when you do not have to

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RoyceNewton

I am pretty sure that is why I like Tecfidera even if it has a silly name.