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Anyone taking Gilenya/Fingolimod? 20 questions...

Hi all

Is anyone taking this drug and how are you getting on?

My neurologist wants me to start Gilenya after I have had three relapses in a year on Avonex, which I have been on since 2010.

Did you have any concerns/hesitate before starting it or was it an easy decision for you because of the way your RRMS is developing?

Did you experience bradycardia (slow heart rate) on your first dose? Did this go back to normal and have you experienced it again? Have you experienced any of the side effects such as nausea, headache, diarrhoea, increased infections (ie flu, colds) or the more serious ones including macular oedema, very serious infections, abnormal hearth rythms, and I also heard that some patients in the trials developed a type of skin cancer but these were removed.

Did you have the less serious side effects when you first started and have these now subsided?

Do you/your doctors think it’s working for you or is it too early to say?

Would be interested to hear people’s experiences.

Thanks,

Fizz

Hi Fizz

I’ve been on Gilenya since April 2013. I was previously on Rebif injections but relapsed twice.

Since starting Gilenya I’ve had no relapses, no side effects at all and I generally feel better. I was walking with a stick because my left leg failed completely after a few minutes. I can now walk quite comfortably without my stick for at least 20 minutes. Over short distances you wouldn’t even know my leg was dodgy. My other symtoms remain the same but my walking has definitely improved. My heart rate did drop a bit during the first few hours after taking the first dose but to be honest, I wouldn’t even have known if the nurse hadn’t told me.

I was worried about the increased risk of infections associated with a suppressed white cell count but I’ve only had one moderately bad cold and a tummy bug (which the whole family got). My neuro said as long as I live healthily, I shouldn’t get any more infections that anyone else. I also worried about PML but the risk is so small it’s negligible. I’m also loving not having to inject and feeling rotten 3 times a week.

Gilenya has given me a new lease of life. Hope this helps. Good luck whatever you decide.

JZ

I’m on Gilenya since November 2013 so only a couple of months so far.

I chose it over Tysabri when Copaxone stopped working for me. I had 3 new brain lesions so I wanted to start on something stronger as I’m more worried about the MS symptoms than the DMD side effects.

My heart rate slowed at the first dose but it went back up again and I was fine. Felt a bit tired for the first few days but no other side effects. I have had a couple of bladder infections since starting but I’m not sure if that’s related or not. I’ve gone to the GP right away and started on antibiotics to prevent it getting too bad. My liver enzymes have been elevated also so I’m having bi weekly blood tests until it settles down.

I feel good though. I’ll stay on it if I can.

Hi, I took my first dose of Gilenya yesterday after 3 years on Avonex…I didn’t know what to expect and tried not to Google! My heart rate slowed a little but i wouldn’t have noticed if the Nurse hadn’t told me…i was just so bored sitting in the Hospital ALL day…it was a relief when i was allowed home. I’m not going to dwell on any of the side affects,i’ll just deal with it when and if it happens. I just registered with this website today and i look forward to reading lots of positive posts.

Hi Fizz, I’ve been diagnosed since 2001 although my first official relapse was at the end of 1999. I’ve been on it since the end of May 2013 after nine good years on Rebif. I had two relapses in 2012 and felt it had stopped working for me. I went on Gilenya as nothing else was offered. I had a new MRI scan - the first since I was diagnosed - and was told I had the qualifying number of lesions. Personally, I don’t feel it’s helpful to discuss or analyse MRI scans at length - it would just give me more to worry about! My heart rate was all fine on the day and I didn’t experience any of the other side effects. No colds or other bugs either. My test was macular oedema was clear. I had a three week exacerbation after being on it for two weeks in. Both my MS nurse and a neurologist didn’t have an explanation - I have found the lack of information quite shocking as I was told only about 5% of the MS population in the UK are on it - so I joined a Facebook group full of Americans who have been on it for years. It turns out it’s quite common. Personally, I think it was the crossover of the two drugs. Since then, it’s not been great to be honest. I have stiffness and pain on a daily basis now - spasticity was something I rarely had and my pain was under control. Right now, my walking is severely impacted by the tightness in my calves. My mild drop foot is now worse - although I am still walking unaided - I have never really experienced problems with my mobility. In addition to the unknown problem at the start, I had a small relapse before Christmas, two weeks back at work now another one. I am seeing my MS nurse and a neurologist on Thursday and I am going to be pushing hard for Tysabri. I am totally prepared to take the risk of PML even if I’m JC+ For me, it’s not been a success. I waited three years to get on Rebif and it changed my life. It improved everything especially my fatigue, which had been crippling, and I could just get on with living my life. I still had relapses but only every year to eighteen months and they were all just sensory and actually pretty mild. The injections never bothered me and I only experienced any side effects very early on. I know the DMD’s aren’t supposed to make you feel “better” but Rebif did. I guess I was expecting Gilenya to do the same but it’s just not worked out for me although there are two posters here with positive stories. Good luck with whatever you choose xx

hello there,

first of all, im 23 and i diagnosed with MS 2years ago. i started taking betaseron injections every other day,
however, i had a lot of relupses so my doctor suggested switch to gilenyum.I ‘ve been taking this drug since Octomber 13’,so 3 months already!

the first day u have to spend in the hospital for tests such as: blood test, heart rate. do not worry about it at all. i had a slow rate around 52, but within the next days i went back to normal.

since iv been taking it I feel better, as i didnt have any serious relupses such as: double vision, but i do noticed that i have blured vision. (my doctor said that its going to be ok it justs need time). the only exams i had so far were blood test, and the results were great.

This pill will definetely make your life easier. You must be happy and think positive that this will help u! stop worrying about the side effects! :slight_smile: pain killers have side effects too!

Hi Fizz

Just a quick add-on to my previous post: previous MRI scans showed new (significant) lesions while I was on Rebif injections. I had an MRI scan in December and just got the results today. It shows no new lesions since starting on Gilenya.

JZ

Hi Fizz

I’ve been on Gilenya since November 2013 and haven’t had any side effects so far. I, too, had read the list of side effects with trepidation but I needn’t have worried.

On the first day I was monitored in hospital per procedure, my heart rate dropped but only slightly and I wouldn’t have noticed if I wasn’t strapped to a machine that recorded it. I did feel tired and cold that week but it was a long day for me and a very early start that morning.

Since then I have been fine. I have a cold at the moment but it is just that - a common cold. No worse than any other I have had. I have also had a small operation with no complications.

I’m due to attend my eye screening text next week so I can report back then about the macular oedema but I certainly haven’t noticed any difference to my vision apart from the odd migraine auras which I get anyway. I’m assuming macular oedema is something quite different and noticeable …

I chose Gilenya as it seemed the least hassle out of the options I was given and, whilst I didn’t mind injecting Rebif 3 times per week, I wasn’t keen to switch to another injectable or a more aggressive drug just yet. I hadn’t expected to be switching DMDs as I hadn’t given it any thought. I knew I had had a bad year but hadn’t thought through the implications of that. My neuro made the decision really easy though by explaining my options, steering me towards his personal favourite and giving me some time to think it through. I have to say that popping a pill every day is soooo much better than self injecting.

Good luck

Tracey x

I’ve been on it for 4 months after going through all the injectables. BP went below 50 in hospital, but i was also on amitriptiline which i have since stopped, as it can interact with the smooth heart muscle and Fingolimod. Make sure your MS nurse etc know what other meds you take. I was reallt fatigued in the first few weeks and was aware of my heart slowing, but once the GP advised me to stop amitriptilne things improved.

My lympocytes are low than is ideal, even on Fingolimod, having lots of Blood Test to keep a check, worse scenario, i might have to do every other day for a while. Saying this, no infections, lots of hand washing though, everytime i come home from the shops etc, i wash my hands, really careful with food prep too. I’ve had tummy troubles, and headaches. Although, any side effects have been less than the injectables, and all meds have potential side effects. Remember although it is helpful to get experiences from others, and it can be reassuring, we are all individual and react uniquely. Best of luck with your decision, at least we have a choice, going back 10 years it was tough luck, get on with it.

Seems like everyone has had a good experience on Gilenya except me

I’ve just read Twinke3’s post with interest. I take amitriptyline too (only 20mg each night) but haven’t found it causing any problems with Gilenya. The hospital automatically take a full list of all other medication (including self-medication like the high dose vitamin D I take daily) before administering the first dose so they were aware of it.

My heart rate barely dropped which was the one thing I had been worried about given my family history of heart disease. I even had to have a full heart scan before the cardiologist would declare me a suitable patient for Gilenya.

On the day of my first dose, it was a complete breeze and it was soooo nice to have a day to lay on a bed and do nothing else except play on my i-pad and complete crosswords. Such a rare opportunity!

Tracey xx

It’s odd how we all get different info from the doctors etc. At first, they didn’t mention the possible problem with amitriptiline. My heart rate was still around 50 2 weeks later, so was really sluggish. The GP then looked up the drug, and it came up with a caution, it didn’t say do not take. So in my case, and i have to say i am sensitive to drugs like amitriptiline, baclofen and modafinil, it didn’t suit. Strangely enough, when i saw the neuro he asked me if i was still taking the amitriptiline, i had stopped then. I miss it though as it gave me a nights sleep.

I suppose we have to all remember we respond differently, althoough it seems quite confusing at times

That’s very true, we are all very different and our MS reacts very differently too. I was so certain that given the family history of heart disease that I would have an interesting day with my first dose of Gilenya and then it turned into a total non event!! I have to say though that my neuro is rather handsome and when he popped in to check on me my heart rate soon went up !! I’m sure that helped …

Tracey xx

Wow, now this really has my interest.

For Meme, and anyone else. My understanding was thatGilenya/Fingolimod was only available to those who had previously been on an interferon first (and with some other conditions as well). So I checked and the NICE guidelines (2014) said:
… they have an unchanged or increased relapse rate or ongoing severe relapses compared with the previous year despite treatment with beta interferon, and

Now I am on Copaxone - pleased with it - relapse free since Feb 2012 until (maybe) last October, but with some hints that I could be reclassified as SPMS. If this happens, I could be taken off Copaxone, I could be left on it (treatment can be continued into SPMS if you know where to look and that rule has not been changed), or I am straight into the great unknown. I have an appointment with an MS Nurse in two weeks, and what may happen to me may/will depend on just what I say to her.

Reading the thread through I find that several people have been put on Gilenya in the last three months, so maybe there is a change in the guidance that has not reached the official publication yet; maybe some neurologists are going to do things their way, anyway; maybe it is just chance. But I am interested in why someone (anyone) was put on Gilenya. I have not had an MRI for several years, so the only things that the Nurse will have to go on will be my physical condition and what I tell her.

Geoff

Hi everyone Thank you so much for all your really helpful replies - very interesting reading and appreciated. Thanks, Fizz

[quote=“Fizz44”]

Hi all

Is anyone taking this drug and how are you getting on?

My neurologist wants me to start Gilenya after I have had three relapses in a year on Avonex, which I have been on since 2010.

Did you have any concerns/hesitate before starting it or was it an easy decision for you because of the way your RRMS is developing?

Did you experience bradycardia (slow heart rate) on your first dose? Did this go back to normal and have you experienced it again? Have you experienced any of the side effects such as nausea, headache, diarrhoea, increased infections (ie flu, colds) or the more serious ones including macular oedema, very serious infections, abnormal hearth rythms, and I also heard that some patients in the trials developed a type of skin cancer but these were removed.

Did you have the less serious side effects when you first started and have these now subsided?

Do you/your doctors think it’s working for you or is it too early to say?

Would be interested to hear people’s experiences.

Thanks,

Fizz

[/quote] Hi everyone, not sure if my messages are posting - I couldn’t log in earlier but a big thank you for all the very helpful comments and information. Much appreciated. Fizz

Hi

i was diagnosed about two years ago and since then I have been on Copaxone, I had an MRI about three months ago and it showed a small new small lesion. I want to talk to my doctor about switching to Gilenya because unfortunately the injections have damaged my skin and now I have big ugly dents in my legs and small one in my arms.

The part that terrifies me more about gilenya is he macular edema. I would like to know how you feel after taking it, and if any of you have developed vision problems and or macular edema. The gilenya website says to stop immediately after first signs of vision problems.

Any of you on Rebif?

thank you

I’ve been on Gilenya since 2011 - my neuro put me on it as part of a clinical trial. I have had visual problems while I’ve been taking it, but they weren’t caused by the drug. In fact, I haven’t had any side effects since the early stages of the trial. I’m much happier with Gilenya than I was with Betaferon.

Hi, I was just diagnosed in February (3 months ago). I tried Tecfidera and had a horrible, horrible time. Tomorrow is my first dose of Gilenya and I’m a little nervous. I’m very glad to read that so many people have had a good experience.

Take a book or something to do when you go for your first dose. You’ll spend a lot of time sitting around doing nothing.