PML, the JC Virus, and Misconceptions
Last updated: March 2023
Many people with Multiple Sclerosis live with a pretty big fear of three letters: PML. The very mention of this acronym, which stands for Progressive Multifocal Leukoencephalopathy, can be terrifying to many people who take particular disease modifying medications to slow down the progression of MS. The source of this fear is pretty understandable: simply put, PML can kill you. It has killed people with MS in the past, which is a big reason why people live in fear of it. A lot of people seem to want to blame the medication when it comes to talking about PML, because I think that there are some misconceptions about it. I want to help clear up some of the concerns.1
What is PML?
PML is a rare brain disease caused by being infected by the John Cunningham (JC) virus. It can also be caused by the re-activation of the JC virus (much like herpes or the chicken pox, when you have JC, it never really goes away, but can flare up). Most people can have the JC virus and never know about it. There aren’t any physical symptoms that you would notice. In fact, it’s been estimated that between up to 90% of the population has been exposed to it. JC only really becomes a problem if you have a compromised or weakened immune system. When your immune system is comprised, the JC virus may not be kept in check, which can cause it to reactivate. It can then damage the brain and attack myelin, just like MS, but more aggressively. That destructive process once the JC virus crosses into the brain is PML, and it’s what can kill you.1
This isn’t just a Tysabri problem
This is all a big deal for people with MS because of our immune systems. Several of the medications used to treat MS can increase the risk of PML, including Tysabri, Gilenya, and Tecfidera. Tysabri is often considered the big culprit. A lot of people want to push a lot of blame to Tysabri, but I think there needs to be a bigger understanding of what’s going on here. Yes, there is a greater risk of PML when you have the JC virus and take Tysabri. That’s because Tysabri can weaken and alter your immune system. Remember, with MS, it’s our own immune system that’s attacking our body. A large number of MS drugs alter or suppress the immune system (which is their purpose). So with many MS drugs, not only Tysabri, you may be at more of a risk of infections (You’ve probably seen other articles talking about how many of us get sick a lot of the time, it’s the same reason).1,2
When it comes to PML, it is not solely a Tysabri/MS drug thing. It can also happen in HIV-AIDS patients, again, because their immune system is compromised.1
Fighting the body's immune system comes with risks
Tysabri is a big concern because cases of PML with it have often made headlines. But I think the reason Tysabri is a risk is because it’s good at its job. MS is an autoimmune disease, we are literally fighting our own immune system to treat it. Tysabri helps us fight our immune system, it suppresses it to help limit the damage it can cause us. Suppressing the immune system will always put us at risk for other potential issues, after all, our bodies have this system for a reason, to help protect us. Sadly for us, it’s not working right.1,2
Fortunately, we now have a great test that wasn’t around when people sadly passed away from PML with MS. When someone is on one of the major MS treatments that poses an increased risk, they will often have a blood test done every six months or so. Doctors can now determine not only if you are positive, but the level of antibodies in your blood. This can help estimate the risk of developing PML. This has been a major breakthrough because it has allowed some people to test positive but remain on their treatment.1
Taking any of the the disease modifying medications is a big decision. However, I do feel that some people steer away from potential life changing treatments because of PML. There is a risk in anything, but for many, there are risks to not taking medication as well (I have witnessed this first hand, my grandfather deteriorated and passed away because he went untreated with MS). PML is a serious issue, one that should be discussed with your MS specialist after having the proper blood work done. However, it’s important to understand PML and make an educated decision. It’s important to realize that it’s not solely a Tysabri problem, that proper testing can be done, that there are also potential repercussions for not using an MS treatment, and people can and do become positive for the JC virus and still take one of these medications.
Thanks for reading!
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