Anyone else on fingolimod?

Hi everyone

Just wondered if anyone else is on Fingolimod (Gilenya) as I’m seriously considering it following my annual review with the neuro yesterday.

First the good news. All the yoga stretches I have been doing have improved my legs considerably and I passed my neurological check-up . I knew my legs had improved a lot as they aren’t painful any more, I just can’t walk as far as I used to. My balance is still a little off but I can work on that too. I’m thinking of cancelling the physio referral as I don’t think there is much they can do for me now. The neuro didn’t really comment on this so I guess it’s up to me.

Secondly, he says I have had two clear relapses. My right leg was affected at the beginning of March and just as it was improving in mid June my left leg was affected. As there was three months between the two events, this counts as two relapses and not one continuous one (which is what I was hoping for). Silly really, but I didn’t want to hear that my MS has been more active this year despite being on Rebif.

The neuro feels that Rebif isn’t working for me any more after 3.5 very good years (I had a minor sensory relapse just after I started on it). So the choices he offered me were Copaxone (I rejected that four years ago as I didn’t fancy daily injections and one of the side effects may be breathlessness and I’m asthmatic), a talk to the Campath trial team (have serious reservations about that as I’ve heard about the side effects) or Fingolimod, the new daily tablet marketed as Gilenya. I’ve got time to think it over but I’m already 99% decided on Fingolimod so have had the ECG and blood test in preparation for it.

I would have the first dose as an in-patient as it causes your heart rate to drop so they monitor you for six hours after the initial dose. It means an early start one day as I have to be at the hospital at 8am and it’s a minimum 30 min drive to the railway station, 50 min train journey and a short bus ride (however I always manage to miss a bus and have to wait 20 mins for the next one!). Then I have to have 3 monthly check-ups for the first year, in common with all DMDs, and six monthly after that. It feels like starting all over again in a way.

So, to return to my question, is anyone else on Fingolimod and what are your experiences?

Tracey x

Hi Tracey,

Ive been on fingolimod for 2 months now. Best thing ever as far as I am concerned. Both Avonex and Rebif slowed down my relapses but didn’t stop them. What I didnt realise / notice was the fog they had put on my brain, till I stopped taking them. My head feel so much clearer now.

I was admitted overnight for the first pill, hourly monitoring for the first 8 hours, then 4 hourly for the rest and released. My hea rate dropped, but if the nurse hadnt told me it had dropped I would have never known. The monitoring is dull, although after a couple of hours the nurse showed me how to disconnect, and reconnect all the monitoring equipment without calling them, so I could go to the toilet without any hassle.

The nurse also had an unhealthy obsession with shaving my chest for the ECG, and I had to explain I had had them before without it being required, although that may not be an issue for you :smiley:

2 lots of blood tests have shown no liver or kidney problems, so next month its the opthamologist to check for macular edema. Just hoping its fine too although not noticed any difference in vision.

The only side effect I seem to have is that I want to sleep more, I have to get the full 8 hours or it’s permanently tired for the whole day.

Oh and I am mildly OCD, as the packet of pills has a day printed on each, and even though they are identical, and the nurse jut popped the first one out, I now have to use the one with correct day of the week on.

Good Luck with it.

Gary

Hi Tracey,

Ive been on fingolimod for 2 months now. Best thing ever as far as I am concerned. Both Avonex and Rebif slowed down my relapses but didn’t stop them. What I didnt realise / notice was the fog they had put on my brain, till I stopped taking them. My head feel so much clearer now.

I was admitted overnight for the first pill, hourly monitoring for the first 8 hours, then 4 hourly for the rest and released. My hea rate dropped, but if the nurse hadnt told me it had dropped I would have never known. The monitoring is dull, although after a couple of hours the nurse showed me how to disconnect, and reconnect all the monitoring equipment without calling them, so I could go to the toilet without any hassle.

The nurse also had an unhealthy obsession with shaving my chest for the ECG, and I had to explain I had had them before without it being required, although that may not be an issue for you :smiley:

2 lots of blood tests have shown no liver or kidney problems, so next month its the opthamologist to check for macular edema. Just hoping its fine too although not noticed any difference in vision.

The only side effect I seem to have is that I want to sleep more, I have to get the full 8 hours or it’s permanently tired for the whole day.

Oh and I am mildly OCD, as the packet of pills has a day printed on each, and even though they are identical, and the nurse jut popped the first one out, I now have to use the one with correct day of the week on.

Good Luck with it.

Gary

Hi,I take Gilenya and I’m thrilled with it.I was on the drug trial for two years then had a gap of two years with no treatment ( I had lots of small relapses during this time,but didn’t consult a neuro) and since September 2011 am back on Gilenya.I found out later that I was taking the drug during the trial and not the placebo.I was prescribed Gilenya by my new neuro in 2011 when I had a relapse affecting my arms.I haven’t had any more relapses since beginning the drug in 2011,though I have had new symptoms.I’m not really aware of any major side effects-I do catch colds more easily.You’ll be very closely monitored btw.My heart rate did drop with the first tablet,from 55 to 48,but it only lasted a short time.I have had raised liver enzymes sometimes,but I’m not sure if this is directly to do with Gilenya,or another tablet.I hope to be able to take Gilenya for many years to come.I hope it goes well for you.You can pm me if you want.Take care,Brenda.

Hi Gary

Thanks for your reply. I don’t think my monitoring will be quite as thorough as yours. Just six hours and I have to arrive at 8am but apparently I can catch up on my sleep once I am there - I think that’s a given :wink: !! I think I would prefer an overnight stay but of course that costs more …

Had to smile at the chest shaving comment, as you say it won’t be an issue for me. Dad had an ECG a while back at Papworth’s and he is very hairy. They didn’t worry about shaving him so when the time came to remove the sticky pads the nurse realised there may be a problem and said she would just rip them off as quickly as possible. I think it ended up resembling a waxing session :smiley:

I’m hoping to get my first dose in the school holidays - back to work on 2nd September so they may just be able to squeeze me in!

I’ll report back when I start on it, in the meantime I’m keeping up with Rebif as my nurse said there isn’t any need to have a gap between treatments and it would be best to keep taking something and not risk further relapses.

Tracey x

6mths all good:-)

You can check out the Gilenya Diaries over at MS-UK.

http://www.ms-uk.org/forum/forum_posts.asp?TID=41&title=msuk-gilenya-diaries

I have no advice to offer but just want to say good luck hun and I’m sure you’ll be fine. Your a positive one I know that from your posts and you messages to me. Hopefully this will work for you and on the brightside no injections again for you :wink: xxxx hugs (((())) x

Ooh can I ask why did he offer you copaxone? Only I would have thought if rebif was not benefitting then that wouldn’t? X

I forgot to mention this site :www.gilenya.com You might find it useful.Brenda.

Brenda, thanks for your replies - I work in a high school so will have a chat with my boss when I return to school just to keep her up to date. I’m also going to need extra time off this year for the 3 monthly monitoring check ups but I do have an understanding line manager these days. I’ll just have to keep my fingers crossed that I don’t pick up every virus that goes round :wink: I’ve had a look at the Gilenya site and it seems very useful.

Carolgees - thank you. That’s what I need to hear. When you start to read the list of side effects it’s a bit worrying but all my other tablets have side effects too and I take them regardless.

Whammel - thank you for that link. That was exactly the kind of thing I needed to read, they just take a tablet each day and no great drama. I’m feeling calmer already.

Lisalou - Thanks hun. I wasn’t feeling so positive on Friday. I really wasn’t expecting to hear that I have to switch meds, Rebif is like an old friend now (I never thought I’d say that about self-injecting!) The funny thing is that I always hold it together in front of the neuro and then have a bit of a breakdown afterwards when it hits me! I’m allowing myself this weekend to wallow in a little bit of self-pity and then tomorrow I’m ringing to arrange the Gilenya and put my sensible head back on and get back to fighting it. MS can have this battle but not the war :slight_smile:

I think the neuro suggested Copaxone as it isn’t a beta interferon and some people do better on that than on the beta interferons. However he skimmed over that quickly as he soon said that if it was him he would opt for fingolimod. I quite like being nudged towards a treatment as it makes it much easier this time around :slight_smile:

Tracey x

Glad to be of help.For me,Gilenya really is a wonder drug.I hope that it works out for you.It’s good that work are understanding.Bye,Brenda.

Blimey I wish they had notifications like they do on fb to tell you when someone’s replies as I forgot yo check this thread to now. Tracy can see why you wouldn’t initially be pleased as no one would but you like me try and rise above and plod on as they say. I’m sure this is the rigjt route now and at least no needles this time. Good luck and keep us posted xxx

Well, I phoned on Monday to confirm that I do want to switch to Gilenya but the nurse phoned me back yesterday to say that they have to get the test results back first before ordering the drug in for me. They will do their best to fit me in by the end of August but if they can’t then work may have to be even more understanding …

Tracey x

Good luck!I hope that it works out.Brenda x.

Good luck Tracey x

Hi Tracey,

Just wondered if you had managed to get started yet?

Gary

Hi Gary

In a word - Nope.

I’m back to work on Tuesday so that means I know I’ll be making the 2 hour return journey to the hospital five times this year and I’m doubtful that many of the appointments will fall in school holidays. I’ll have to find five minutes with my line manager during the two inset days and just let her know what’s going on with me so she’s forewarned. Then there’ll be the opthalmology appointment after 3 months and I don’t know if that will be local or at Addenbrooke’s.

In the meantime BUPA are due to deliver another month’s supply of Rebif on Thursday. If I hear from the hospital before then I can always cancel it as they will then order the Gilenya but it’s not looking likely.

I’ll give it another couple of weeks and then chase it up. Seriously though, how long does it take to get back test results from an ECG and routine blood test that I had done at the hospital that day? The blood test was just the standard liver function, FBC and an extra one for chickenpox virus (herpes simples). Surely they are all done at haemotology within the same hospital? Addenbrooke’s is a University hospital so it must be able to do these tests and get results back to Neurology within a week or so.

Having made the decision, I just wanted to get on with it but I have now remembered how frustrating it was 4 years ago when I started on Rebif …

Thanks for remembering and asking. Are you still doing fine on Gilenya?

Tracey x

Hi Tracey

I’ve been on Gilenya for nearly 5 months now and no relapses. Feel absolutely fine, no side effects.

My MS Nurse said one of the blood tests needs to go to Denmark (?) for analysis so maybe that’s what’s holding it up. Mine was pretty quick though.

Hope you get sorted soon and that it works for you.

JZ

Hi JZ

Thanks for letting me know. Apparently it’s not the blood test that’s the problem now.

My ECG showed some very slight irregularities so it had to be sent to the heart consultant for his opinion. He is also an expert in Gilenya so they trust his judgement. The believe he has emailed my neuro but my neuro is on holiday until the end of this week so we cannot do anything else until we know what the response is. I may need further tests or I may be clear to start treatment.

I had to ring and ask as BUPA were due to deliver a month’s supply of Rebif on Thursday and I didn’t want it to go to waste as it is so expensive. My nurse says if we get the go ahead on Friday/Monday I could be in clinic by Friday, 13th (luckily I’m not superstitious) to have the first tablet, so told me to cancel the delivery and she can always rearrange it if need be.

I will be pooping myself though as there has been a helluva lot of heart disease in my mum’s family (my mum, four out of her seven siblings, both of her parents and 2 of my first cousins). The only one of my uncles who escaped heart disease had 2 strokes instead. I just hope the heart consultant makes the right call .

I really wish my ECG had been absolutely perfect then I wouldn’t have had to think about all of the rellies with bad hearts but I suppose what really matters is my heart and what the specialist thinks.

Keep your fingers crossed for me as I also don’t want any more bad years like this one. I did walk to work this morning without my stick as I’m now working on my balance but carried my hessian MS Soc bag so people didn’t think I was drunk at 9am lol. It should be a 10 - 15 min walk for me usually at my leisurely pace but still takes a few extra minutes. I’m sure the weaving adds on a few extra paces ha ha.

Hoping Gilenya continues to work for you, it seems to have a much better success rate than the injectables. I’ll be quite happy to hang up my needles :slight_smile:

Tracey x