Tecfidera and low lymphocyte count

[Yogagirl123]

Had my routine 3monthly blood tests on Monday, call from GP today, lymphocyte count is the lowest it has ever been since starting Tecfidera in July 15.

GP wants a repeat of the full blood count Friday morning so she has results before the weekend.

My MS Nurse is away, my regular GP is away! Don’t you just know it!

I have contacted my Neurologist and waiting for a reply.

I presume I continue on the Tecfidera, unless I am told to stop, took a dose lunchtime, before the phone call.

I have had this awful chesty cold that is going around, I am recovering now, but I wonder if that may have affected the count? Anyone been in this position? I also tested positive for JC Virus prior to starting on treatment. So I know the risks associated with low lymphocyte & PML etc.

Hello Yogagirl! I’m not sure this is helpful but am on Tecfidera and remember them talking to me about this when I started it. My MS nurse told me you have to be consistently low for a prolonged period to be at risk of PML. She said that if lymphocytes fall out of normal range, (believe 1.1- but could be totally wrong!?) they would move to more frequent testing, monthly I think, to see if they pick up before pulling you off the meds. Personally I would just carry on taking it, and see what the GP says when the next bloods come back. Mine fluctuate quite a bit (within the normal range though) so hopefully it will just be one of those random things! Hope it is all ok. X

Thanks Flops, I will see what news Friday brings. Just what I didn’t need to be honest! Keeping my fingers crossed, Tecfidera is really convenient so I hope it’s just a blip.

Will keep my fingers crossed for you! X

All is well, I spoke to the MS team, they assured me it was ok and continue on treatment, no need for another blood test for 3mths!