#gilenya - Shift.ms

@Gillo

16 Sep 2022 13:45Last reply 22 Sep 2022 08:48

Gilenya

Hi can I hear your thoughts on Gilenya, I'm due to start it soon, thanks

Dublin, Ireland

7

@Hd78

3 Aug 2022 13:25Last reply 7 Aug 2022 00:36

Gilenya experiences?

Hi my MS has progressed & my neuro is changing me from Tecfidera to Gilenya. I was just wondering if many of u are or have taken it in the past. What did u think of it?

5

@Sophia86

20 Jul 2022 20:48Last reply 21 Jul 2022 08:58

Anyone else on Gilenya?

I've just started this DMT & wondered what peoples experience is on it and also why was this drug recommended to you over others? Thanks very much.

7

@Luper17

30 Jun 2022 01:22Last reply 30 Jun 2022 11:51

Has anyone is taking Gilenya?

I will like to heard, you experienced if you taking GYLENYA.

7

@flan30

4 Dec 2016 19:38Last reply 25 Jun 2022 09:20

Hi I am wondering could some one help me. I'm freaking out here. My period was late recently and I took a pregnancy test (actually took4) and it was positive. I was shocked (still am) cos my husband and I were not planning on having kids any time soon. I came off the pills a few months ago as I was ...

5

@molly89

29 May 2022 07:38

Gilenya to Ocrevus

Can anyone who has moved from Gilenya to Ocrevus share how long it was from when they were told to stop Gilenya before their first infusion? I'm in the 'waiting period' ....and waiting for my infusion date (am off meds)

London, United Kingdom

@Beccabi

7 May 2022 06:13

Stopping Gilenya & Prolonged QT on ECG

Hi there, Has anyone had to stop taking Gilenya due to a prolonged QT interval on their ECG? My Gp who did the ECG didn’t seem too concerned but I mentioned it to my MS nurse and my MS consultant has asked me to stop it immediately! I’ve been ticking along on it nicely for eight years without a ...

@pixxelated

10 Aug 2021 11:07Last reply 15 Apr 2022 12:08

Gilenya periods... or lack thereof

Just wondering if anyone else has just lost their period since they started Gilenya? I mean... I'm not complaining (per se) and my GP didn't seem especially bothered when I told her about it in December, she did a few blood tests and it's not early menopause so that's cool, but 9 months on still not...

Cork, Munster, Ireland

1

@sdaniel628

10 Apr 2022 23:00Last reply 11 Apr 2022 08:53

Taking Gilenya?

If you take gilenya, have you ever accidentally taken your medicine twice on the same day? Did you have any issues from it?

1

@Mathew_Hare

6 Apr 2022 15:21Last reply 7 Apr 2022 22:51

Moving from Tysabri to Gilenya

Hey all, I’ve been on Tysabri since March 2020 and have been fortunate to have no relapses but my MS team told me a couple of days ago that I need to change to Gilenya due to a change in my JC status. I had my last Tysabri infusion earlier today and the neuro nurses seemed very confused about wh...

5

@Polinezia1

22 Feb 2022 13:29

Gilenya extreme low white blood counts

Hi all. I have RRMS and been on Gylenia for almost 5 years already. Descreasing the white blood cell count is something exprected from gilenya and my value was constant to 0.6 untill now that since Nov last year it got as low as 0.4. My neurologist says this is a critical low level already and if it...

Hamburg, Germany

@katfight

3 Feb 2022 14:16Last reply 3 Feb 2022 17:43

Gilenya

New to gilenya - does anyone take this as would like to know if - Does your pulse drop everything you take your daily dose Do you feel tired straight after taking your daily dose? Want to know if this is normal for others. Thanks

2

@Vassilis

12 Jan 2022 15:15Last reply 14 Jan 2022 06:30

COVID with Gilenya

Has anyone got sick with Covid (or know anyone who did)? I am on Gilenya since 2017 and I have read reports that Covid vaccines are not so effective with that particular drug. It would be very helpful to know if anyone got sick with Covid and share with us his/her experience

3

@katfight

10 Jan 2022 16:08Last reply 12 Jan 2022 18:05

Mavinclad v Gilenya

Discussion with Nurse re mavinclad but they would like me to try Gilenya. Not sure if I should just say OK or say no I want mavinclad. I believe mavinclad is better so why not just go straight to it? Help please

6

@Tired

8 Jan 2022 11:31Last reply 9 Jan 2022 11:56

Anybody tell about their experience getting off gilenya?

Nervous about rebound episode. Can anyone share about their experience of getting off of it?

3

@Tired

8 Jan 2022 11:31

Anybody tell about their experience getting off gilenya?

Nervous about rebound episode. Can anyone share about their experience of getting off of it?

@Elisabeth_Turner

20 Jun 2019 06:39Last reply 8 Jan 2022 11:25

Gilenya no longer working?

So I have had RRMS since 2000. Was on Rebif for 2 years back in 2005, and that seemed to stall the progression. I started on Gilenya back in March 2017 and for the first year I felt great. But this last 3 0r 4 month I've been steadily going downhill. Brain fog, fatigue, balance issues, lung issues. ...

3

@leanne411

11 Nov 2016 15:28Last reply 23 Dec 2021 07:27

Gilenya washout

Hi I have just been agreed to start Lemtrada in Feb. I have to have a wash out from Gilenya for three months which is really stressing me out. Doc won't prescribe an injectable to take for protection during this time. Anyone else been in this situation, did you relapse? Did you get prescribed anyt...

4

@DonJaime26

6 Dec 2021 19:36Last reply 8 Dec 2021 06:29

Vaccine Alternatives for Gilenya

Hi everyone, this is my first post here on Shift. It's good to be here! I'm posting because my wife has MS and she takes Gilenya daily as part of her treatment plan. As many of you may know, data shows that Gilenya doesn't allow the COVID vaccines to produce antibodies. We're trying to find ways to...

7

@Bkboo

10 Mar 2018 11:52Last reply 20 Oct 2021 18:54

Gilenya and shortness of breath

I have been on Gilenya for 4 years and this year I have experienced being short of breath, some days its ok and some says Its awful. I have had a Pulmonary function test which was normal. My doctor has me signed up to do further tests to find out whats going on. I think it may be Gilenya, I know it...

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