I have no medical background, but it is my understanding that being positive for the JC virus (John Cunningham virus) is not a good situation.Mbates1990 wrote:I just got lab results back and they indicated that I tested positive for the JCV antibody. Is this somerhing that I should be concerned about? Also, I have read that this is a side effect of using Tecifidera. Has anyone else experienced this?
I urge you to do your research and discuss the situation with your doctor as soon as possible. The topic of JCV and progressive multifocal leukoencephalopathy (PML) first appeared when Tysabri came onto the market (PML was the reason that Tysabri was temporarily withdrawn from the market.).
It might be easiest to start with Wikipedia: https://en.wikipedia.org/wiki/Progressi ... phalopathy
Two things: be very grateful that you have been tested as a lot of people are not and secondly, Tecfedira has been given a black flag by the FDA because after continuous use for around four years it triggers JCV to activate and PML ensues.
This is the FDA note - http://www.fda.gov/Drugs/DrugSafety/ucm424625.htm .
PML is an irreversible auto demyelination in the brain leading to death. You are not a suitable person to take Tecfedira. I would contact your prescribing doctor and request a change of treatment.
I can help with thisMbates1990 wrote:I just got lab results back and they indicated that I tested positive for the JCV antibody. Is this somerhing that I should be concerned about? Also, I have read that this is a side effect of using Tecifidera. Has anyone else experienced this?
This suggests that you have been exposed to the JC virus.
The JC virus is common in the general population, and about about 50% of people will test positive for the JC virus antibody. On its own, this is insignificant as the immune system shuts down the virus and prevents clinical infeciton in immunocompetent individuals. However, reactivation of the JC virus in people with weakened immune systems and cause a serious brain infection called progressive multifocal leukoencephalopathy (PML). This disease is rare and does not generally occur in people with a competent immune system.
The JC virus has been found in the urine of pregnant women or in contaminated water, but it is not known if or how the virus is spread from person to person.
PML has been reported in people with multiple sclerosis taking certain disease modifying therapies. In particular, the risk is greatest with the drug tysabri (natalizumab). There are >450 cases of PML in multiple sclerosis patients taking tysabri. To my knowledge, there are three cases in patients taking tecfidera (dimethyl fumarate) and one patient taking fingolimod (gilenya) (there are also some "carry over" cases in patients taking tysabri previously).
Again, your JC virus antibody status on its own is not a concern, but this could influence whether or not you would choose to receive certain multiple sclerosis therapies.
hope this helps