#gilenya - Shift.ms

1 Jan 2014 05:40Last reply 24 Oct 2016 08:11

Gilenya weakness / fatigue

Hi everyone, I started on Gilenya about 2 weeks ago. I had no side effects for the 1st week but over the last week I've felt very weak. Less strength in my legs and somewhat fatigued. I see that these are reported as side-effects. Has anyone else experienced this on Gilenya ? Did it pass ?

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@Anawith1n

25 Mar 2015 10:02Last reply 29 Mar 2015 21:04

On Gilenya ( fampyra or lemtrada)

HI it's me again seeing my neourologist on Friday im going to ask him to change my treatment. I'm on Gilenya now for nearly a year. I've just heard about these 2 drugs this week. Fampyra yes it's quite expensive here in Australia but I hear it gives you energy and u can walk better. Lemtrada well I...

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@Chate-Patel

21 Jan 2014 16:51Last reply 14 Aug 2014 07:15

Fingolimod (Gilenya)

I'm going to be taking Fingolimod soon... What's your opinion? Is it effective?

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@melissag

3 Jan 2013 16:41Last reply 7 Feb 2013 14:26

Gilenya?

Hi guys, hope everyone had a great holiday! I just wanted to ask today if anyone had much experience with Gilenya, I'm having a lot of sensitivity to the copaxone shots I'm on an the MS nurse said the dr will most likely want to switch me to gilenya because of that. The shots leave me swollen, sore ...

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@Leogirl

13 Dec 2018 12:28Last reply 16 Dec 2018 21:20

Gilenya

Hi, I just wanted to ask how often anyone on Gilenya have MRI’s. I was previously on Tysabri and I had them every four months. I changed to Gilenya in 2016 and I have been having them every four months as well. After my last visit to the clinic I received an MRI appointment for a years time. I qu...

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@Anawith1n

23 Jun 2014 09:03Last reply 29 Jun 2014 19:45

3 months in gilenya and loving it!!!

Wow 3 months on gilenya, please don't give me the evil eye. But so far so good. Touch wood everybody. ( 3 times please) All good! Highly recommend it.

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@insomniacoffeelover

14 Mar 2019 14:27Last reply 28 Apr 2019 22:44

Gilenya - 6 months scan new lesion

Hi all, I had my scan 6 months after starting Gilenya (Fingolimod) and it showed a new lesion. The rest were stable. The nurse told me not to panic as new lesions can appear when patients are between treatment (I was off treatment for a month between Tecfidera and Gilenya) so I will get a scan in a...

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@melissag

20 Feb 2015 15:27Last reply 22 Nov 2020 16:03

Gilenya low lymphocytes

Hi everyone, I saw my neurologist yesterdayand lets just say it was a frustrating experience, I won't go into the details here, I've already written a big blog post ranting about it all, but one of the things that came out when I was speaking to the nurse after my appointment (the Dr didn't even no...

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@NicciS

6 May 2019 19:53Last reply 22 Nov 2020 15:55

Gilenya stopped :-(

I'm so gutted. Got a text from my MS nurse on Friday telling me to stop taking Gilenya immediately. My lymphocytes have been at 0.2 or below since before Xmas. Blood test on Weds last week showed them at 0.15. I'm so disappointed because although I've had a few weird symptoms, I've felt so much bett...

17

@gojira

3 Feb 2016 16:59Last reply 14 Apr 2016 13:25

Gilenya

Hello all! Just wondering if anyone would like to share any experiences with Gilenya. I am starting a study pretty soon between Copaxone and Gilenya. I dont know for sure what im getting yet but they said that its a 20% chance of Copaxone and 80% Gilenya. Reading the booklet they gave me on Gilen...

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@DannyJ

19 Dec 2015 14:48Last reply 23 Dec 2015 22:19

Lemtrada or Gilenya?

After almost 3 years on Tysabri I've stopped taking it because I've now become JC positive. I've been offered Lemtrada and Gilenya and will now look into both options. Any recommendations? I'd love to hear - thanks. Danny

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@Firefrau26

3 May 2018 21:51Last reply 22 Aug 2018 15:14

Stopping Gilenya to start Mavenclad

Stopped almost three weeks ago and have started to have pain all over and incredible mood swings. Has anyone experienced this. I work full time as a nurse and have found it almost impossible to organize my thoughts since stopping.

15

@bound2camp

17 Jan 2014 12:28Last reply 20 Jan 2014 21:16

gilenya

I have been taking gilenya for a year now for my RRMS. I have had no relapses, not sure if its the drug or just the way it would normally go for me. Is anyone else using it?

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@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...

14

@Francishannon

15 Aug 2017 08:12Last reply 1 Sep 2017 11:43

Gilenya fingolimod

Hello there ms warriors I am starting a new treatment next week gilyena fingolimod is there any one out there on it and what are the side effects and how do you feel on it I would be great full for your information peace out people

13

@Diva40

22 Mar 2020 18:00Last reply 2 Apr 2020 22:16

Gilenya

Hi has anyone had issues getting Gilenya ? Only have 10 left!!!! In touch with Lloyd’s pharmacy.....

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@Mirbir

28 Sep 2021 22:54Last reply 30 Sep 2021 15:04

Gilenya and shortness of breath

Hi there. Has anyone else had persistent shortness of breathe due to Gilenya? and did you have to change treatment or are there ways to manage it?

13

@Gwenny

14 Sep 2014 05:28Last reply 24 Sep 2014 01:10

Changing from Tysabri to Gilenya

I have just tested as Positive to the JC Virus, so my Neuro is talking of switching me to Gilenya in 12 months time. Has anyone else done this, I would be interested in your opinions please.

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@pebbles19

5 Aug 2013 08:36Last reply 22 Aug 2014 14:07

Tysabri or Gilenya??

Hi!! I was told last week at my annual appointment that after a year and a half on Avonex, that it is not working and I have to move to stage two treatment. The two options I have been given are Tysabri and Gilenya and there seems to be so many side effects to both of these that I am overwhelmed ...

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@Amy_Forrest

29 Jul 2019 13:14Last reply 31 Jul 2019 17:10

Gilenya?

Hi guys. I have been taking gilenya for 1 year and 4 months now and I'm wondering how people are getting on with it. I'm terrified about PML and it's sending my anxiety through roof with panic attacks and what not. I'm thinking of coming of it as MS won't kill me but PML will and I don't want to tak...

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