Starting Gilenya Tomorrow, advice please :)

Hello all,

Im starting Gilenya tomrrow and as you can imagine feeling bit nervous. Woiuld just like to know what to expect of the day etc and if anyone else on here is on it.

Did any of you have any side effects to begin with?

Thanks :slight_smile:

Oh cool good luck Kelly, good luck and pls post how it went etc.

Oh and good luck lol dunno why that came out twice when I edited it

Hi Kelly.

I’ve been on Gilenya since April last year and I’ve had no problems with it at all. No side effects, no infections and no relapses (touch wood).

When I went in to hospital for my first dose, I was in for 8 hours. They hooked me up to a heart monitor and took my blood pressure regularly throughout the day. I sat and read a book, listened to music and even nodded off. It was the most uneventful day of my life. Apparently my heart rate dropped a bit after the first hour but gradually went back to normal. If they hadn’t told me this I wouldn’t have known. Didn’t feel any different.

It’s been the best thing that’s happened to me since being diagnosed. Don’t worry, you’ll be fine.

Good luck :slight_smile:


Hi Kelly

I started on it in November after some delay getting approved for it. There is a long history of heart disease on my mum’s side of the family so I was very nervous about it and I had to have a heart scan before I was given the go ahead.

In the end it was a total non event. I was monitored for 6 hours, both for heart rate and BP and my heart rate dropped very slightly. Like JZ I took plenty of things with me to keep me amused; a novel, puzzle books and some music. I also had a little nap in the afternoon as it was a very early start in the morning. For the first week I did feel the cold a bit more than usual but that is the only thing I noticed and that may have just been fatigue.

Since then I haven’t had any side effects whatsoever. No relapses, no infections, no stomach problems. I’ve just had my eyes checked and they were fine too.

It’s so much easier to pop a pill every day and I don’t miss doing injections at all .

Good luck

Tracey xx

I’ve been on gilenya for 8 months, I’ve been healthier and so much happier on it! On the first day, it was on the ward with a heart nurse to keep you company until your heart rate behaves normally, then you go home and take it everyday! Easy peasy! :slight_smile: Good luck for tomorrow! :slight_smile:

Thanks everyone, I guess the the unknown can just be a little scary sometimes. Im taking my mum for company so we can both be bored together.

I have had all the relevant heart checks but im still worried as we lost my nan very unexpectedly just before christmas due to heart problems which could be hereditary. I know she will be with me in spirit tomorrow as she was always very concerened about my ms.

Better buy some magazines on the way home from work tonight then

Thanks guys, guess im jus nervous of the unknown, taking my mum with me so we can be bored together.

We lost my nan just before christmas very unexpectidly to heart problems and its in the family so im a little worried about that although Ive had all the tests etc so should be fine. I know my nan will be with me in spirit tomoroow as she was always very interested to know about my ms.

Must remember to buy lots of magazines on the way home tonight.

Are they still making everyone pick up tablets once a month, this was told to me at Charing Cross which is a bit of a

Hi Kelly, Toure bound to be nervous, I was too… And probably everyone on it! :slight_smile: my mum and my brother (who’s younger than me) have both had heart attacks and stents… But I’ve been more ok than before! I have a medical company that phone me to arrange delivery each month! I have also found that a fixed time for taking the tablet is a good thing… I take mine in the morning, as if you forget it, you have the rest of the day to remember! Nella

Kelly - way too many to mention in our family with heart disease so I was very nervous until the heart scan confirmed I was fine. As it was my heart rate barely dropped. It’s good to know that some bits of me work really well :wink: Like Nella I take my tablet in the morning with all my other meds and if, very rarely, I forget it then I take it as soon as I remember.

Hobs - my hospital is a 2 hour drive away. They ring me when the next prescription is due and if I’m over there that week they will hold it for me, if not they post it. It’s a signed for delivery but if I’m out it goes to the Royal Mail office and I pick it up from there. Hope this helps

Tracey x

Oh cool maybe they relaxed rules etc as at one time Charing X wanted people to stay overnight now they say have to stay for 5 hours only.

Hello all, just to update you, yesterday was a sucess, after 6 hours monitoring I was aloud to go home :slight_smile:

No problems, just a long boring day. Ive never been more glad to see the back of injections :slight_smile:

Hi Kelly, That’s great news…I’ve been so much better on the gilenya and I hope you will be too xx

Woo hoo, Kelly

Welcome to the club. I didn’t mind doing injections but I certainly don’t miss them :slight_smile:

Here’s hoping Gilenya does the trick. I feel really well on it and no horrid side effects.

Tracey x

Hello everyone

After an appointment with my consultant today he has decided to put me on Gilenya. Don’t know how long it’s going to take to get it but I can finally see an end to the injections 3 times a week and I certainly won’t miss the injection site marks!!!

Just out of interest how long did those of you who are now on Gilenya have to wait to be prescribed it?

Take care

Pen xx

Hi Pen, I told the ms nurse and consultant that I couldn’t do the Rebif anymore as I seemed to have relapse after relapse on it and painful site reactions! I said I would be happier taking nothing at all as the meds weren’t working anyway! Obviously my consultant wasn’t too chipper about the idea and put gilenya in the equation! I decided that I’d give it a go… After all, what did I have to lose?? The longest part of the wait is the heart nurse and hospital bed, all in all… I was on gilenya after about a month! The healthcare at home deliver it about a week before you run out! No more remembering to order it :slight_smile: Good luck Pen xx

Hi Pen

I think I took an unusually long time because first the heart consultant was on holiday, then my neuro was on holiday and no-one else could access his emails. I then had to have a heart scan and there were also some blood tests missed at clinic so I had to have them done locally.

Eventually, after deciding to switch to Gilenya at the end of August, I started in early November. I had run out of Rebif by then but despite me stressing about it, I didn’t relapse so it all worked out fine. I’m sure it normally goes through much quicker than it did for me.

Good luck

Tracey x

Hi everyone,

I’m also going to be starting Gilenya soon.

Had an appt. with my usual consultant after my ms nurse rang me to say she was worried about me and wanted me to have an emergency appt. Well I saw him and he said he wanted to refer me for a 2nd opinion to the MS specialist at the hospital…HALLELUJAH !!

Saw the ms specialist Wednesday and he was great, has arranged another brain mri, got me in for an ECG and blood test straight after my appt. and is arraging for Gilenya to be started. Wow!!! It all happened so quickly.

My husband also asked if I could now become his patient which he was more than happy to do. Wow again.

I am so glad to be getting off Rebif ( providing I pass the 6 hour test on Gilenya ) as I hate those injections with a passion, they have never got easier with the pain and I now find 10 months in that the flu symptoms are present even if I take painkillers.

So all is looking good and Pen it’s lovely to see you back again and coincidence that we’re probably going to be starting Gilenya together like the Rebif.