Fingolimod and hair loss- has this happened to you?

Everyday living
1

Hi - sorry for anon. Neuro wants me to start fingolimod and I’ve read on the Novartis website that one of the common side effects is hair loss.

For some reason this terrifies the life out of me. I tell people I have MS on a need to know basis and you can’t tell I have it at the moment. This would be such a big sign that I’m not well. I feel like crying just thinking about my hair falling out.

I’m sorry if I’m upsetting anyone who has had hairloss - the logical part of me can see that it would be very far from the end of the world, especially if it’s a toss up between losing hair and having a massive relapse that could have been prevented, but hairloss is something I’ve always feared well before getting MS - it’s like my worst nightmare actually. Don’t know why I’m more scared of hairloss than MS.

How can I feel better about this and stop feeling sorry for myself? :-((( Sometimes it’s hard to keep brave when you have this hateful disease. Sometimes it just sucks big time!

2

I’ve been on it for 3 months and haven’t had any hair loss. Didn’t even know it is a potential side effect

3

I’ve been on it for 3 months (bar a couple of days) and haven’t noticed any hair loss. I have very thick, curly hair and I would notice if my hair was falling out more than usual. I haven’t noticed that I’m blocking the drain in the shower any more than usual, lol! If I was, I am quite sure my son would mention it as he hates finding my hairs in the tub even though I do my best to remove them all …

Tracey xx

4

Hi, I’ve been on gilenya for about 8 months and have felt really good since starting it! I was so poorly before, and was on Rebif! My own personal feelings towards fingolimod are really positive, and I haven’t suffered hair loss :wink: goodluck

5

Hi

I’ve been on Fingolimod since last April with no side effects whatsover. No relapses and feel good.

All the best :slight_smile:

JZ