Hi everyone,
I was wondering you are at risk of pml is it if your lymphocytes are low ? Is that how you are monitered ? I am on Tecfidera.
Thankyou
Risk is very low. Only a handful of cases in the world, much more of a problem with some other DMTs. There is some variation in the level and duration of low lymphocytes that are considered acceptable. Some places take 0.8 and others 0.5 before deciding to take you off it or monitor more frequently.
Problem is that it is normal for Tecfidera to lower lymphocytes and then for them to bounce back.
I was taken off because of low lymphocytes then but back on after a relapse then taken off again after they fell for the second time. Recovery in lymphocytes was quite slow the second time but appears to be very susceptible to infection.
COVID made monitoring more difficult and the frequency was reduced. It makes sense that you would be monitored more frequently at the start of treatment then less often as time progresses if your lymphocytes are stable.