- Home
- Share
- Forum
- General forums
- Treatments for multiple sclerosis
- Fingolimod (Gilenya): Have you experienced side effects?
Fingolimod (Gilenya): Have you experienced side effects?
- 161 views
- 4 times supported
- 14 comments
All comments
Go to the last comment
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 96 in the Treatments for multiple sclerosis group
6 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
@Emma2190 Hi Emma, it's nice to hear from you, thank you for opening this discussion. I'm going to tag some members who may be able to share their insights with you.
@msslady @MS_283 @Monkey @Cgonlag @TheMSDad @padres44 @Hgood623 @looking4 @lester198 @siemprelucha @mickey @Niagia83
Hello everyone, do any of you have any experience with Gilenya? Do you have any advice for Emma?
Take care,
Courtney
See the signature
Courtney_J, Community Manager, Carenity US
Cgonlag
Cgonlag
Last activity on 04/21/2020 at 7:34 AM
Joined in 2020
3 comments posted | 3 in the Treatments for multiple sclerosis group
Rewards
-
Explorer
@Emma2190 Sorry - I have not taken that one... although I am in the middle of deciding what to switch to so I am interested if that is normal. Are you still having pain? - Carrie
See the signature
Carrie
Marques
Marques
Last activity on 10/15/2024 at 1:07 PM
Joined in 2020
2 comments posted | 2 in the Treatments for multiple sclerosis group
Rewards
-
Explorer
hello I'm marques and I'm just looking for people that can relate to talk to
Emma2190
Good advisor
Emma2190
Last activity on 07/04/2022 at 1:29 PM
Joined in 2018
94 comments posted | 70 in the Treatments for multiple sclerosis group
1 of their responses was helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
-
Newsfeeder
So hi all. I know I have not been here in a while but things have been very bad lately, so bad I went to the ER on Saturday by stretcher. :( Was shaking bad, felt like I could not breathe and tight in my chest. Is this a MS hug? And on top of all that happening I was losing my bowels and a CT scan showed inflammation in my colon.
Has anyone else been through problems like this? Anyone on Gileyna and have side effects or complications caused by the med? (I was told while in the ER by the doctor who saw me, that their may be a connection with infections or digestive problems and Gileyna.)
See the signature
Just trying to get by..
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 96 in the Treatments for multiple sclerosis group
6 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
Hello @Emma2190, thank you for your comment, I've moved it to this discussion for more visibility. I'm sorry to hear you had to go to the hospital, that must have been so scary! How are you feeling now?
Hi everyone, have any of you been on fingolimod (Gilenya) for your MS? Have you experienced any side effects while on it? Have you specifically had any digestive issues because of it?
@TheMSDad @Tracy23 @Pelaton @looking4 @Charmaine59 @Jennifermckinney @Tcampagna @Miamio123 @sammi.ray @Jans @emmemm12 @djbehret @Letschat @Rebeccaglenn @HashnMemms @Sherriblack @Corrie @Kbassett @P.Martin
Feel free to share any advice or experiences with us all here!
Take care,
Courtney
See the signature
Courtney_J, Community Manager, Carenity US
Sherriblack
Sherriblack
Last activity on 11/23/2021 at 4:31 PM
Joined in 2021
2 comments posted | 1 in the Treatments for multiple sclerosis group
Rewards
-
Explorer
I haven't had any treatment since I was diagnosed Dec17 2017. I can't find a neurologist that will take my insurance. And family Drs don't want to touch it. I wouldn't know .
Tracy23
Good advisor
Tracy23
Last activity on 09/25/2023 at 2:54 PM
Joined in 2021
5 comments posted | 5 in the Treatments for multiple sclerosis group
Rewards
-
Good Advisor
-
Explorer
I’m newly diagnosed only since December and have not started treatments yet but will be starting Kesimpta in a few weeks. I do know some people on Gilenya and no side effects for them.
Emma2190
Good advisor
Emma2190
Last activity on 07/04/2022 at 1:29 PM
Joined in 2018
94 comments posted | 70 in the Treatments for multiple sclerosis group
1 of their responses was helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
-
Newsfeeder
@Courtney_J Thank you for your reply and I'm doing ok off and on but they do have me on two meds for the stomach problems and a taper steriod for the flare up that does not want to end on it's own for a while. Soon to be going for an updated MRI that is focused on my spine this time as well as my brain, because of frequent falls..more has to be checked to see if lesions are on my spine now too, which hoping for it to be a not on that one.😔
Yes it was scary but even more so when I ended up there again because things got worse and that is when they took it more serious since I still was unable to keep anything down and was feeling horrible.
See the signature
Just trying to get by..
Emma2190
Good advisor
Emma2190
Last activity on 07/04/2022 at 1:29 PM
Joined in 2018
94 comments posted | 70 in the Treatments for multiple sclerosis group
1 of their responses was helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
-
Newsfeeder
@Tracy23
Not sure what Kesimpta is? Could you tell me about it perhaps?
Thanks
See the signature
Just trying to get by..
Emma2190
Good advisor
Emma2190
Last activity on 07/04/2022 at 1:29 PM
Joined in 2018
94 comments posted | 70 in the Treatments for multiple sclerosis group
1 of their responses was helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
-
Newsfeeder
@Cgonlag
For the most part it has been off and on with the pain, but I'm still doing a lot of research on Gileyna to see if others have had stomach problems, inflammation and anything else I have dealt with since being on this. The only thing I can say is, do as much research as possible before starting anything new..because a lot of the times the neurologost or MS specialist leave things out that would be helpful before going in blind so to speak. Not all I'm sure, but sadly my trust in medical professionals is fastly fading.
See the signature
Just trying to get by..
Give your opinion
Articles to discover...
11/18/2024 | News
Drugs and libido: Which treatments can affect your sexual desire?
11/08/2024 | Advice
11/04/2024 | News
02/20/2019 | Advice
Cigarettes VS e-cigarettes: an update on the consumption and pitfalls to avoid
03/11/2019 | News
04/15/2019 | Advice
02/14/2019 | Advice
Subscribe
You wish to be notified of new comments
You have been subscribed
Emma2190
Good advisor
Emma2190
Last activity on 07/04/2022 at 1:29 PM
Joined in 2018
94 comments posted | 70 in the Treatments for multiple sclerosis group
1 of their responses was helpful to members
Rewards
Good Advisor
Contributor
Messenger
Explorer
Friend
Newsfeeder
Hi all, I know it has been a long time since I posted here or talked. My depression has become worse than before, moods shifty and all over the place along with pain all over. They put me on Gileyna on March 2nd and now been taking it daily since then. What I need to know from someone with experience regarding Gileyna is does it make you really light headed(since I have been lately) and if so, how long does this last? Feel free to send me a message or reply here and thank you. ~Emma