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I was supposed to start Ocrevus, but now my neuro says no due to testing JCV +, not sure what my titer level was. My neuro wants me to go back on Aubagio or start Copaxone. I refuse to go back on Aubagio and recent studies show Copaxone is the least effective DMT on the market, when it is effective at all, not to mention the high incidence of anaphylaxis and post-injection reactions. Are there any other options? Help!
Tecfidera. My sister has been on Copaxone for over 16 years. When I was diagnosed, I researched for 3 days and read about each of the MS meds. My top 2 choices were Tecfidera & Gilenia. My neuro said that if this stops being effective for me, he’d put me on Ocrevus. It’s been 2 years and I feel like me again. So, I say Tecfidera.
@A MyMSTeam Member I Found this on Web MD:
The JC virus, or John Cunningham virus, is a common germ. More than half of all adults have been exposed to it. It doesn't cause problems for most people, but it can be dangerous if you have a weak immune system. There's no known way to keep yourself from getting it.
The virus was first discovered in 1971. A doctor found it in the brain of a man with Hodgkin's lymphoma and named the virus after him.
Experts don't know how it's spread, but it's thought that many people pick it up as kids through food or water that has the virus in it. It settles in your urinary tract, bone marrow, tonsils, or brain. It can stay there for years, and most people never know they have it.
Who Gets Sick?
In people with very weak immune systems, the virus can bring on a serious brain infection called progressive multifocal leukoencephalopathy (PML). PML damages the outer coating of your nerve cells. It can cause permanent disabilities and can even be deadly.
People with HIV/AIDS are most at risk for PML. Those with Hodgkin's disease, leukemia, or lymphoma are also at risk, as are people who take certain immune-suppressing drugs because of multiple sclerosis (MS), rheumatoid arthritis, or organ transplants.
I've been on Avonex (mean injection) and Copaxone (wimpy injection) for 3 years, got tired of being a human pin cushion so I switched to Tecfidera. What a GREAT decision a pill twice a day, the worst side effect for me was flushing ALOT at first!! I've been on it for 6 years now. Don't plan on changing any time soon UNLESS a miracle drug comes along!! Ther's always HOPE!! :)
What is JCV?
I've been on Copaxone for 11 years, and haven't had a problem with it. Feeling like a human pin cushion is annoying, but some of the alternative DMDs have worse side effects.
Im on tecfidera too for 7 years it is fine. taking peanut butter 10 minutes before the pill resolves the flushing for me . . or it could be cheese-something high in fat about a tablespoon.
No new lesions this whole time for me so that is the measure by which they say it is working.
I wish you well . . .
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