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Calling Gilenya users

Hello all

I just wanted to ask a question to others on Gilenya. I started on G back in October, I have just had the 3 months later eye scan and blood tests. I dont have an appt to see anyone until September and I just wondered if that was normal for Gilenya users?

I am sure it is normal but it just seems like a long time to me…I thought they tried to keep a good eye on your blood pressure and things like that? Maybe I have just been spoilt with my previous experience of being on Tysabri and seeing my MS nurse every 28 days and then my neuro pretty much whenever you wanted/needed to!!

I dont have a particular need to see anyone at the moment so I wouldnt ring and ask for an earlier appt - I just wondered if this is the path for everyone on G?

Thanks for reading

xxx

bump

hi hayley

do you feel better on gilenya? i ask as i am going on it very soon, having previously been on rebif and coming off it as i had really bad side effects.

btw what does ‘bump’ mean? sorry to sound thick

bump means you’ve been bumped up to the top of the board,

i was tired - too tired to type more than four letter words.

good luck on gilenya

carole x

Thanks for the bump Carole!

Fluffy Ollie - no! I really really dislike Gilenya. I was on rebif for 2.5 years continued to relapse so moved over to Tysabri. Loved Tysabri, which just really suited me, I didnt relapse, I felt great on Ty. Unfortunately had to come off of that and made the move to Gilenya in October 14 - I havent relapsed thankfully, but I just feel terrible on it. On Tysabri I had days where I completely forgot I had MS, now I feel something everyday, my fatigue is shocking, I work full time and apart from when I was in a relapse have managed that perfectly well. Now I struggle to do a full day let alone a full week!

That being said - I know plenty of people that are doing very well on Gilenya . There is a group on facebook “UK Fingolimod users (Gilenya)” you should join if you are on facebook. Very friendly bunch!

xx

hi carole- sorry for again sounding thick (you young things and your ‘street talk’ eh?). thanks for telling me before i offended someone!

hi hayley - sorry for me being thick and getting the wrong end of the stick. really sorry to hear you’ve had a rotten time on gilenya. i will have to hack into my wife’s faceache account as im not on it (and for a few reasons, don’t want to become a member… no problem with people who are, i just don’t want to be one… obviously getting irrational with my old age!).

did ty stop working for you? hope the gil sorts itself out for you soon

take care, fluffyollie

p.s. ‘bump’! (listen to me, being all ‘street’!) xx

Hi Hayley

i started on Gilenya Oct 14 too after being on Rebif for 2 yrs. I saw my MS nurse 1mth after starting where they checked my bloods, white blood cell count and kidneys etc as well as my blood pressure, I then saw her again Feb (3mths on) for the same checks, my next app will be in another 3 mths time, then after that I think she’s stretching it to 6 mths. I also had the eye test done 1mth after starting.

Ive noticed an improvement, sml but a noticeable improvement with fatigue and general day to day energy. Don’t get me wrong I’m still having bad days but on the whole an improvement, fingers crossed I might continue to improve further.

Hope that helps

Liana :slight_smile:

Thanks Liana. I think all hospitals must do it differently. I may just see if I can see a nurse at my GPs and get my blood pressure checked. I have always naturally had low blood pressure but I feel like I have symptoms relating to high blood pressure now and I know that G can do that. I am glad you have noticed an improvement - albeit a small one. xx

Fluffy Ollie - Ty didnt stop working, but I was JC+ (just a virus in my system) alot of people are JC+. But if you are JC+ and have Tysabri there is a very very slim chance you can develop something called PML. After a routine blood test we found out that my chances of developing this PML were really high so my neuro decided I should come off it. I would jump (or try to) at the chance of getting back on Ty!

liana- did you have any side effects?

hayley- sorry to hear that. ive heard of pml but need to remember the acronyms better so will now look it up. i hope you get some responses soon to your original question. i was told there is an excellent faceache (aka fb) forum on this drug if that’s any use?

xx

Hi Hayley

I switched to Gilenya in November 2013 after being on Rebif for almost 5 years. I had had two disabling relapses in March and June 2013 so my neuro said Rebif was no longer working for me and I needed to consider switching DMDs.

I had a check up with my nurse one month after starting Gilenya with blood tests. After that it was every 3 months for the first year and the eye check up at the 3 month point as well. Now that I’ve been on it for a year and the blood tests haven’t shown up anything untowards, I only have to go every 6 months (once with neuro and once with nurse). I thought this was standard in the UK because Gilenya lowers your white blood cell count and can affect your liver so the blood tests are very important in the first year to keep an eye on this. My white blood cell count was very low at the 3 month point (if I was on the trial I would have been taken off the drug) but my neuro said while I was feeling well and not picking up infections he would leave me on it. By the next check up, my body had sorted itself out and my white blood cell count was back within an acceptable range.

I kept my nurse up to date in the first year regarding illness and infections so they could log these on my file. I was lucky and didn’t have many to report. I did catch more colds than usual in the first few months but they didn’t turn into anything more nasty. I did have my first UTI at around the 3 month point but as they are common with MSers anyway I wasn’t unduly concerned.

It did take a while before I felt any better but my mobility had been affected by the relapses so the Gilenya plus (eventually) physiotherapy did help and after a few months I did notice a difference in my walking. I did notice a difference in my cognition fairly quickly though and hadn’t realised how groggy Rebif had made me feel until I stopped taking it. I do still suffer with fatigue so I do still have zombie moments when the fatigue hits and I can’t put two thoughts together lol!

If I were you I would be questioning why you are not having check ups every 3 months at the very least. Even if it’s just a 5 minute phone call with your nurse? Do you at least have blood tests scheduled for every 3 months?

Hope Gilenya works for you as well as it seems to be for me.

Tracey x