Gilenya
Hi I'm new here I was just wondering how well gilenya worked for you if you ever took it. And pros and cons. I was diagnosed in November 2021 and didnt start meds until July 31st 2022.
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My reply is not related to the Question i was daignosed 2004 age 17 was offered to take gilenya when it was first released I refused to take it because i was young to take such a strong treatment im taking it since 2018 and frankly its like a sip of water No relapses since 2018
Hi, I've been taking Gilenya (Fingolimod) since 2018 and have not had a relapse since. I tolerate it very well, with only more frequent runny noses which I can live with. I have had MS for at least 17 years and wish this DMT would have been a firstline treatment then. Started on Tecfidera (Dimethyl Fumarate) in 2014, but relapsed in 2017 and new lesions. Every person is a unique and will tolerate the drug differently. I am a busy, parent who is studying fulltime and plan to return to employment soon. The pros for me are:- 1. It has reduced my relapses . 2. It's easy to take - one tablet daily and doesn't have to be eaten with food. 3. The tablets are delivered straight to my home or a harmacy of my choosing. 4. I'm closely monitored bloods etc. You get more monitoring in the first year and then if you tolerate it well the appointments are less frequent. 5. I can always email nurses if I have any issues and they reply promptly. 6. It sounded more scary than the reality for me. Cons for me 1.I have to travel to a hospital an hour away from where I live. However, this is very infrequent, especially since the start of the Covid -19 pandemic. Virtual appointments are available most of the time. Only one appointment once a year with a consultant neurologist if you are stable. 2. Blood tests have to be at park n ride cos difficult to get my GP to do them. This will vary across countries. 3. immuno-supression was a bit anxiety-inducing when Covid came. Particularly because I started a healthcare university course at the same time and had to continue studying, but I took precautions and for me the experience of Covid was between a bad cold and flu and more about the fear of what 'might happen'. 4. I may have to come off it in the future, which is something I have thought about. I think you have to wait longer than other DMTs before starting another and the risk of relapse increases in that period. However, one thing at a time, and if it works for you, that's great. If it isn't right for you then you'll be supported to deal with that when it happens.