Like all of my posts, the following is my layman’s understanding of a drug and it’s issues. My understanding may not be accurate and please don’t rely on it for medical advice.
Tysabri is one of the more effective disease modifying drugs used to treat multiple sclerosis. It is a once a month transfusion. That would suit me well given my work travel schedule. I would gladly waste an afternoon once a month so as not to have to bother with pills or shots.
But there is a catch. If you have been exposed to a virus called John Cunningham virus, or JCV for short, Tysabri increases the risk of developing progressive multifocal leukoencephalopathy (PML). PML has no cure and will likely kill you.
Now keep in mind that even if you test positive for JCV, the odds are small that you will get PML on Tysabri, but they do exist. Even a small percentage chance doesn’t quite seem like a good risk reward ratio if the loser of the trade dies.
If you test negative for JCV and go on Tysabri, you will need to get regular tests to make sure that you didn’t pick up JCV along the way. If you did test positive, you could have had it up to a month since your last test and I understand that Tysabri can hang around in your system for a couple of months after discontinuation. That gives you roughly a three month window where you need to pray that you don’t get PML. Not likely, but scary nonetheless.
While scary, Tysabri is one of the more effective treatments. Scan the blogs and twitter and you will find countless people that have had great results with it. That makes it a tough choice.
As readers may know, I was on Rebif but developed an allergic reaction to it. Yesterday I met my MS doctor to discuss our next treatment. We reviewed my recent blood test and found that I tested positive for JCV.
Mixed feelings. Disappointment because it means that one of the more effective treatments is no longer an option for me. But at the same time, relief. Taking Tysabri off the table as an option means that I don’t need to bother with the anxiety ridden debate of whether the effectiveness is worth the risks of the drug.
Coming up next, being offered a choice…..