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Gilenya-low white blood cell count

Hello. I have recently started taking Gilenya. I took it for 6 weeks but have had to stop taking it because the lymphocyte count was far too low. My white cell count is back to normal. I am goingt o start taking it again to see what happens and whether my lymphocyte count will become low again or it will bounce back. My question is this: has anyone else begun to take it, had a low lymphocyte count and then your body has adjusted to the meds and gone back up? I know how the meds work and that it stops lymphocytes going into the bloodstream but they have to be at a certain level to continue the treatment. Would very much be interested to hear of others experiences. L

Hey Prof I can’t help. But when I have posted and received no replies I just think as usually the folk on here are so wonderful in replying that no one can help. So perhaps that is the same with you. Also Gileyna is a relatively new treatment so there won’t be many people on it. Wish I was! Here’s hoping for some more useful replies to you Min xx

Hey Prof I can’t help. But when I have posted and received no replies I just think as usually the folk on here are so wonderful in replying that no one can help. So perhaps that is the same with you. Also Gileyna is a relatively new treatment so there won’t be many people on it. Wish I was! Here’s hoping for some more useful replies to you Min xx

There really aren’t that many people on it. The lack of information about Gilenya is actually quite shocking - even amongst my own neurology team! I’ve had to get virtually everything I know from a Gilenya support group on Facebook which is full of Americans who have all been on it for years especially when I had what I thought was a relapse three weeks into it.

I’ve been on it since the end of May but had no problems with my bloods that I know of. I would direct you to the Gilenya (Fingolimod) Users Support Group on Facebook (sorry, it’s not letting me paste the link on here) and and hopefully Prof you’ll get a better response :slight_smile:

Thanks for that. I’ll check it out.

I’m on Gilenya for the last 4 weeks and am due to have my first lot of bloods done. I know my neurologist mentioned that if my white blood cells went too low, they might considering reducing the dose to one capsule every other day as opposed to every day.

Now, this was just a very brief mention, a passing remark from him when discussing side effects, but if your WBC drop to that level again, it might be worth broaching with your neurologist as to whether a reduced dose would be considered.

Hi.

I have been on Gilenya for over four years (two of those years were on the drug trial).

I have had lower levels of white cells (isn’t it lymphocytes?),but not too low to stop treatment.Low enough to warrant weekly blood tests.Mostly it’s been fine.I do get colds more easily.

This site may help you:

www.gilenya.com

You can pm me if you want,Brenda x

Hi, I have been on the drug for almost two years now and apart from the beginning when i started on the drug my bloods are fine, in the beginning my bloods were all over the place according to my nurse but i think this was abit of my folt as at the time i was working long hours at work and because of the pain i used to have in my legs i was drinking a few pints every night to help me sleep. I have not had a drink for over a year now and all my bloods are fine now, Still have pain but take Nortriptoline ( think this is how you spell it ) every night and works fine and does not react with the drug acording to my bloods anyway. The only thing that i think is is the drug working? what would i be like without it?

I also had low white blood cell count. I was taken off Gilenya. I switched to a new doctor and was able to get back on Gilenya. My doctor stated that he would have me take Gilenya every other day if there was another issue with my white blood cell count.