Last reply 3 days ago
Newbie wanting to say hi :)

Just signed up. 5 years diagnosed with RR.
Been on Gilenya 18 months so far so good.
Wanting to reach out and see how others are doing, what meds work for you and how’s your fatigue levels. I’ve struggled to get out of bed most days. Lost TWO jobs since the Summer :,( but nobody in the workplace understands. I’m most certainly not lazy.

New job starts Monday. Just pray I can get out of bed! 🙏

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4 days ago

Hello @apple75 and welcome to i have been diagnosed for three years and am currently on Tecfidera which seems to be going OK. My fatigue levels changed a lot and seem to be under more control since following a particular diet for the last 2 years, high is Keto. But there are lots of others which suit different people. I have just gone down to working part time which is working out much better. Have had to find a way to make the finances work, but hey ho. Good luck with starting your new job! X

4 days ago

Never took that but recently found the You Tube set of videos Life of Seb and some of the early videos were when he was on Gilenya it sounds like the first week was rough and then he liked it until he had to go off it. If you haven’t tried his You Tube Channel check it out- The very first video dicusses it and his journey

4 days ago

hi a million 😉
glad Gilenya is working right for you.
been daignosed 16 years been on rebef 3 yrs and started gilenya this year
it makes me feel mysteriously good too. and easy to take
good luck with your new job x

3 days ago

Thanks all for getting in touch 😊 great feedback and advice. I need to look at my diet as well as it’s slipped recently and I’ve turned into a sugar monster 😬 which isn’t good at all. That might be having an effect on energy levels…

Thx also for the good luck wishes xx

Have a lovely day 😎

3 days ago

Hello and welcome,
I just found this social community last week and so far everyone has been so kind and real with sharing their stories. Good luck in your first day and give yourself a few personal hugs before you go in.

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