Cariad
5 years ago
UK fingolimod (gilenya) users

Hi all,
Just to let you know that there is a fb group for those who are UK users (or are considering starting) of fingolimod (gilenya). It is a closed group so no-one can see what is written except for other group members. Also, no comments from the group will be visible on your timeline. Those from other countries, please don’t take offense that this group is only for UK users but as different countries prescribe drugs differently, this is a group for everyone in the UK & Ireland receiving fingolimod treatment to share news, views and experiences. (Anyone from other countries, feel free to post on shift as I’m more than happy to share my experiences with anyone who asks.)We’re only a small group at the moment but every group has to start somewhere:) xx

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It would help if I told you the page name haha. Search for ‘UK Fingolimod users (Gilenya)’ and request to join the group. The reason you have to request to join the group is to keep it private-don’t want spammers etc joining.x

Read there are some serious side effects with this?

Hi jonnydrama, there’s risks with any drug but the main things that I was warned about fingolimod were that it may lower my heartrate temporarily. To look after you during this time, (in the UK), you are kept in hosp for 6 hours after taking the first tablet having your heart monitored (plus ECGs etc) and have a follow up soon after. Also, it can cause swelling at the back of your eyes. This is apparently reversible so if it did happen, I was told you would be taken off the fingolimod. Again, in my hosp, we automatically have an opthalmology app. to check that there’s no issues with your eyes after having started the tablets. I haven’t had issues wuth either of these things and no minor day to day problems either. (rebif I felt flu-ey and bruised very badly, tysabri-there’s a small risk of PML etc-there’s risks with everything though.)x

Hi @Cariad thanks for posting this, I’m in the process of switching from avonex to fingolimod (fingers crossed) and was planning on posting to find out if there were others on shift- I shall go and join the fb group now- thanks! Jane x

Thanks for the post Cariad, I’m hopefully switching from avonex to fingolimod very soon so good to know that there are others out there to chat to! I just tried to join the fb group but couldn’t find it, putting “UK Fingolimod users (Gilenya)” into the search box bought up nothing- any chance you could send me a link? Jane x

Hi Jane, can you see if this link works. Sorry, the users in the group found it just by typing in ‘uk fingolimod users (gilenya)’ – not sure why it’s not coming up for you. Hopefully when I’ve done it a few times, we won’t have the teething problems.x: https://www.facebook.com/#!/groups/220969861369180/

@Cariad, that link should work for jane. It worked for me. I just tried it to be sure for you.
🙂

thanks stumbler:)

Hi @Cariad (and @stumbler!) that worked fine, thanks! Sorry about the weird multiple post earlier- there appear to have been some gremlins at work of late!

No porbs Jane-like I said, it’s a small group at the mo but slowly but surely, it will grow:)

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