I was just wondering if anyone knows anything about a problem that I’ve developed with Gilenya? I’ve been on it since early April and started with a lot of headaches etc but they settled down somewhat. However, I got a phone call yesterday to let me know that the last blood test I had (on Friday 16th) showed that my white blood cell count is down to 2. It seems that they want to have another blood test in two months time to see if it continues to drop. (usually the blood tests are three months apart) My question is… has anyone else had that problem? and if so, does it mean that I’ll have to change meds again? (Over the past three years I’ve gone from copaxone to tecfidera to gilenya)
My blood count was very low with one blood test, they just re did it a couple of weeks later and it was fine. Was told it can fluctuate, and its only a problem if it stays low or you are getting a lot of chest infections. told it could have been low due to fighting off an unknown infection. you might have to change if the blood results don’t show any change, but then again you could argue against the change if the med is helping you. my counts are still lower than “normal” but not low enough to be taken off the drug. (and I quickly avoid anyone coughing or sniffling when we are out to try to avoid getting sick.)
I’m taking Gilenya. I haven’t had any problems with my white cell count - yet. I have had problems with my liver function test recently, with raised enzyme levels. I have to go back for a repeat test in the new year. I’m hoping that the levels will be back to normal because I can’t go back to interferon. I don’t know enough about the other treatments to tell if they are suitable for me.
I’ve had raised liver enzymes with several drugs in the past and had to come off them. I didn’t have a problem with Tecfidera though so that might be an option for you if your LFTs remain high. Tysabri was one of the drugs I had to stop, but that doesn’t mean it would be hepatotoxic for you. The only problem is of course that you do have to wait till your liver gets back to normal before starting a new drug. Equally, Copaxone was OK, but of course that’s a much less effective drug.
The good news about raised liver enzymes is that your liver is remarkably robust. It can generally take quite a lot of abuse from prescription drugs and bounce back to normal fairly quickly. I’ve had drug related hepatitis 3 times now and when my liver has been ultra sound scanned, it’s perfectly healthy and my LFTs are well within the normal range. And that’s with my ‘healthy’ wine drinking habits!!