Last reply 6 months ago

Hi Everyone 😊 i’m new to this site and was wondering if someone could help me. I have been offered the drug Fingolimod but after researching information on the Internet (i know you shouldn’t do this) it’s made me very nervous. If anyone’s taking the drug or has experience with the drug would like to share their experiences with me i would be very grateful πŸ’• thank you xxx

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6 months ago

Hi @teresa_davies and welcome.

As you can imagine, there’s been a few previous conversations about Gilenya (Fingolimod).

You can access these previous conversations by selecting the “Gilenya” tag that has been automatically added to the foot of your post above. πŸ˜‰

6 months ago

I’ve been refusing all sort of MS treatments
Gileneya Fingolimod is the one I partly accepted
I’m taking it now
No side effects a part from headaches rarely
But it feels like water
I also feel discomfort im the left side of my chest
But it truly saved me after god’s well from so many relapses i could of got

6 months ago

Thank you everyone much appreciated πŸ’•πŸ˜š xxx

6 months ago

Been on Gilenya/Fingolimod since 2016 and relapse free since then. I’ve also had clear MRIs during the period.

For the first 3 months, I had elevated liver enzyme counts. That came to normal after the 3 month period. Other than lowering the lympocyte count which is by design btw, I’ve had no side effects from Gilenya worth mentioning. We have quite a few in this forum on Gilenya and are happy with it.

6 months ago

My blood tests before and after 3 months are perfect

6 months ago

I have been on it for two an a half week. It was the only option here… regarding the side effects it takes at least a few months to find out however what i found from my reading sources is that it is risky to use it for a long time but what is a long time and how long is long could not find. You definitely have to get checked regularly… if anything comes up then what to do is a problem.

I have had some eye problem 3 days after starting it, I have never had eye infection before and according to the dr it is not directly related but as it suppressed the immune system other issues are likely to come up,


6 months ago

Thanks Zulfihand for sharing your experience πŸ’• xxx

6 months ago

Hi, you partly answered your own question when you said you looked it up on Google.

Unless you are accustomed to interpreting trial results they do look insanely scary. If someone had to list the dangers of being in a car in the same language that is mandated, you’d never go near one.

As your Doctor/Nurse to put the risk of the stated possible side effects into context. They are usually pretty good at making that scary-ass looking data sheet/study reports into context.

After all, life is a fatal disease. With MS drugs it is a risk/benefit calculation in the same way it is to decide to drive instead of walking.



6 months ago

And you better know if you decided to stop it without doctors observation and permission
Your condision will be worse than it had been before you’ e taken it even
I only worry sbout my heart
It hasnt been normal since i started the med
There is slightly bit of pain
I must cut down dark coffee
And tea even for my own safety

6 months ago

Hi Teresa

I took Gilenya (Fingolimod) once and it turned out I was quite allergic. They keep you under observation the first time that you take it and monitor your pulse and blood pressure over three hours. This need for observation came about after some very few instances of what happened with me although it is very very rare and not something that I would say that you need to worry about. At my hospital they had never ever had a case like mine out of who knows how many patients. Me and the nurses have a little joke about the whole incident now when I’m in for my Tysabri especially if the Fingolimod treatment day is the day before mine.
Anyway, I’m fine even after that reaction, my heart rhythm sorted itself back out the following day– needless to say I never took it again though (not that I was allowed to)!

My advice on the whole DMT thing is that you never know which drug is going to work best for you in terms of reducing relapses, you just have to try and try again πŸ™‚
Wishing you the best of luck with things

6 months ago

It would help to know what specifically you have read that’s made you nervous. I’m on Fingolimod as it was the most effective on offer but there are other more effective treatments that have other risks. The main risk to me is that without treatment is that things get worse sooner and especially brain atrophy. Try to see the benefits as well as the risks.

6 months ago

Mr. Dominic very positive and sugar coated comparison .. positive outlook is good like it but how realistic is a question..

6 months ago

@teresa_davies, I’ve been on Finglimod for several years (maybe four?). I’ve never had any bad effects from it at all. I have to have blood tests every six months and my lymphocyte count is always low – which is what it’s meant to be. Everything else is always fine and I don’t seem to get infections or anything like that. I have my eyes checked every six months as well because there is a small risk of macula odema (high pressure in the eye).
So I think it’s an effective, lowish risk DMT.
The only problems with it are (1) you have a 1 in 5 chance of getting bad rebound relapses if you stop taking it and (2) it might compromise the effectiveness of Lemtrada or Cladribine if you wanted to go on one of them instead.
I haven’t had many relapses while on it but I have deteriorated a lot. From what I’ve heard, I think that’s because I’m over 45 – all these DMTs are much more effective in slowing progression if you start them when you’re young.

6 months ago

Thank you sewing-chick for sharing your experience πŸ’• xxx

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