Hi @vassilis, Sorry to jump on your post but wondered if you could advise me re your time on gilenya. I am due to start this drug, didn't want to but not really have a choice 🙄 Could you please tell me if: You have had side effects whilst taking the drug Have you managed to get on either everyday living I.e completing activities such as walking, cooking etc Did or do you experience shortness of breath, tiredness etc Amy advice on this treatment would be great..

Hi @katfight. I started Gilenya right after I was was diagnosed. Back in 2017, when I was diagnosed, my doctor said that MS was very active, he had never seen that during his 25 years of experience. I had new lesions every 3 months. I was diagnosed in July 2017 and started the treatment in November same year. After about 2 months all activity stopped and still remains the same, I am NEDA since then. I have had no side effects apart from tiredness, but this is coming from MS itself and mostly with high temperatures and I think psychologically. One thing that you have to keep in mind is that you can get sick more easily and get over it more difficultly. Especially when it comes to skin diseases, but these are harmless. All I all I have a very positive experience with the drug given the fact that is stopped progression of my extremely active MS right from the start. Some time it annoys me that I have to visit various doctors frequently as I get sick easily (hence the fear about Covid, especially because I have not developed antibodies after vaccination), but given the alternative, I cannot complain. This might be attributed to the fact that I have been through very rough times in the last years psychologically. All in all I think Gilenya is an excellent drug. One thing you need to keep in mind though, is that there is a possibility of a serious rebound of the disease in case you have to stop or switch Gilenya in the future. These are some cases reported that patients had an extremely fast progression of MS after stopping MS, but not sure how rare that is.