I’ve been on gilenya for over a year and for the most part it’s been ok and it totally beats having to have infusions or self injecting (both of which I hate). BUT, and I don’t say ‘but’ lightly, I’ve had a skin infection since a couple months after starting gilenya that just is not healing or going away. I’ve told the ms team about it and they say they don’t see it as a problem and not to worry as it should ‘clear up’… well, it’s not after almost a whole year. I’m told it’s not an problem and to just carry on taking meds but it’s a PROBLEM FOR ME! I feel like gilenya is stopping my immune system from working properly to kicking this infection. Its unusual for any infction to go on this long and on top of that I’ve been having terrible acne which I’ve never had before IN MY LIFE! Like painful cystic acne and skin not healing well. Is anyone else having problems with kicking infections on gilenya and do you think it’s a safe bet to give gilenya a break for a couple months or to stop completely. I’ve never had these problems before and still in my earlyish 20"s and I feel this should not be happening. What’s your experiences and your advice? It feels like my ms team are not listening to my concerns so much so that I’m thinking of getting a referral to another ms team at a different hospital.
Hi, I’m sorry this is happening for you. I started Gilenya in 2015 and developed cystic acne shortly after (face, body, scalp, in my ears, you name it), my MS nurse mentioned they had seen this in some patients, but it wasn’t something they really knew what to do with. It may seem superficial with everything else going on but it is another way MS can kick you whilst your down, so don’t be put off seeking help, especially if it is starting to get very deep (I ended up with cellulitis at one point). You might have been down this route already but my GP helped a lot, prescribing antimicrobial Dermol for washing / moisturising to protect the acid mantle (took a little getting used to), Duac gel for topical use, and as a bad flare up started oral antibiotics, it was best hit when the pain and inflammation started deep under the skin (it did feel a little like I was never off antibiotics for a while). I know it’s different for everyone but the good news was that for me after the first 2 years the skin infections settled down substantially and Gilenya has reduced my relapses significantly (only 1 serious event in 4 years as opposed to 2 a year on other DMD’s). It might be worth working with your GP to see if they can help get on top of it. The trick for me to minimise infections was to be really gently with my skin. I still use Dermol, Duac and very gentle skin cream, and haven’t needed the antibiotics in a year. I hope that helps, or just reassures you that this is something you can get help with