jcv: JCV has nothing to do with Ocrevus... - My MSAA Community

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jcv

RoyceNewton
RoyceNewton

JCV has nothing to do with Ocrevus. It is a problem related to Gilenya, so unless "YOU" plan on taking Gilenya it should not concern "YOU"

When it comes to side effects read the forms they give "YOU" if "YOU" can as they are in small print. Legally they have to note all side effects encountered in the trial on the Patient Information pages that never get read. At least I never have. Get to know your chemist\pharmacist really well and talk to them. I have found after the second ER visit I actually asked a question and only OD'd once more. I can assure "YOU" that opioids are not really very useful. At least not for Trigeminal Neuralgia.

So, my friend, the point is. Without being too crass, open your mouth and ask a question of a professional before "YOU" get scared, ask and learn your risks. Ask until "YOU" are comfortable, but do not procrastinate too long. ms loves when "YOU" delay. I took six months but then was very hard on myself for several years. Do not just believe the first thing that "YOU" see or some rumour. LEARN LEARN LEARN all that "YOU" can about this condition.

I will tell "YOU" that it is a very very long-term condition. I am twenty years along and I expect that I should do another twenty or thirty years barring stupid accidents, of which I am known for. Do not despair, just take a moment. If "YOU" would like to, talk to your dog and have a cry. Having a cry is really okay. I get a little weepy sometimes, not sure why but that is a consequence of our condition. "YOU" are not weak or any less than anybody else, "YOU" just have this "something" causing mischief in your body. That nobody knows why or where it comes from. It really is fun to look at all the crazy ideas people have. Most absolute rubbish though, but still funny.

ms, today tomorrow and the next day is a DOABLE disease. All "YOU" have to do is make a choice, and do ms.

Royce

Make that decision, LEARN and do not be scared

12 Replies

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.

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

hairbrain4
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.

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

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.

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.

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

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.”

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
Iona60 in reply to CarolynK23

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

RoyceNewton
RoyceNewton in reply to Iona60

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

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

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