My daughter has been on Tecidfera for one year. She just turned 18. She did test positive for JC virus and it was on the high side. She has been on other drugs but they haven't work so don't know what we will do if this one doesn't work out. I'm so worried about PML and so is she. I guess my question is how do you if you have PML? Is the only way to do an MRI ? Also what blood tests should be done? Is there any thing we need to be watching for?
I can certainly understand your concern given the recently publicity but I’m going to ask you to keep this concern in prospective and remember the following:
1. The risk of PML in people with MS taking Tecfidera appears to be very low
2. There is no known link between JC virus antibodies and the risk of PML in people taking Tecfidera
3. The main known risk factor for the development of PML in people on Tecfidera is a prolonged drop in absolute Lymphocyte count.
As long as your daughter has her absolute lymphocyte count checked every 3 to 6 months and stops Tecfidera if her counts persistently drop below 500, her risk of PML should remain low. Many of us are looking at ways to further define risk factors for PML in patients on Tecfidera and other common drugs, but monitoring the lymphocyte count is the best way to monitor people currently taking Tecfidera. To do this she only needs an order for a complete blood count (CBC), a test done routinely in every blood lab.
Please note that monitoring lymphocyte counts as a means of determining the risk of PML is NOT useful in patients on either Gilenya or Tysabri. Gilenya lowers lymphocyte counts routinely below 500 without apparently increasing the risk of PML and Tysabri raises lymphocyte counts and still has the highest risk of PML among all the MS drugs.
Please see my previous blog for more information on this issue READ MORE
Good luck and keep being a great mom asking the important questions.
Revere (Rip) Kinkel
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