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Fingolimod (Gilenya): Have you experienced side effects?

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Emma2190

03/11/2020 at 3:29 PM

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Emma2190

Last activity on 07/04/2022 at 1:29 PM

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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

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Courtney_J

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03/12/2020 at 5:31 PM

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Courtney_J

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@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

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Courtney_J, Community Manager, Carenity US

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2020-03-12 17:31:21

Cgonlag

03/17/2020 at 4:30 AM

Cgonlag

Last activity on 04/21/2020 at 7:34 AM

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@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

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Carrie

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2020-03-17 04:30:08

Marques

03/17/2020 at 3:21 PM

Marques

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hello I'm marques and I'm just looking for people that can relate to talk to

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2020-03-17 15:21:54

Emma2190

03/08/2021 at 4:15 PM

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Emma2190

Last activity on 07/04/2022 at 1:29 PM

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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.)

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Just trying to get by..

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-08 16:15:33

Courtney_J

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03/09/2021 at 7:06 PM

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Courtney_J

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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

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Courtney_J, Community Manager, Carenity US

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-09 19:06:01

Sherriblack

03/09/2021 at 11:57 PM

Sherriblack

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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 .

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-09 23:57:43

Tracy23

03/10/2021 at 12:29 AM

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Tracy23

Last activity on 09/25/2023 at 2:54 PM

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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.

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-10 00:29:16

Emma2190

03/12/2021 at 4:18 AM

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Emma2190

Last activity on 07/04/2022 at 1:29 PM

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@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.

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Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-12 04:18:36

Emma2190

03/12/2021 at 4:22 AM

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Emma2190

Last activity on 07/04/2022 at 1:29 PM

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@Tracy23

Not sure what Kesimpta is? Could you tell me about it perhaps?

Thanks

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Just trying to get by..

Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-12 04:22:53

Emma2190

03/12/2021 at 4:29 AM

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Emma2190

Last activity on 07/04/2022 at 1:29 PM

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@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.

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Fingolimod (Gilenya): Have you experienced side effects? https://www.carenity.us/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/long-overdue-update-1631 2021-03-12 04:29:45

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Fingolimod (Gilenya): Have you experienced side effects?

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