Has or is Anyone on this oral drug? I have the chance so long as I pass all the medical tests … Bloods ECG bp etc, I’ve read the pros and cons and I’m so confused. I’m on rebiff now I know I’m very lucky to be considered for the oral drug but it makes for dome scary reading… Anna xx
This may not really help, but I have been offered gilenya too as my first treatment since recent diagnosis (rather than starting on copaxone or beta interferon) as I have had 2 relapses in 8 months. It does make for some scary reading looking into gilenya, which I find difficult as fortunately I feel good at the moment. I am currently stuck between going for copaxone or gilenya and cannot decide!! Xx
It’s a big step to consider. I like your self don’t know which way to turn. It is a drug that many would give their right arm for. But when you read bout it it makes me wonder. The effects on the heart frightens me. I’ve been on rebiff for about 5 years and have had a few relaps a year. Ill wait and see what the results of my last mri and decide from there. Good luck with your choice xx
Maybe I missed something but I didn’t find the choice of going on it scary at all. I’ve been on it since November 2013, no relapses since. I have had a few UTIs which has been annoying but other than that, it’s suiting me down to the ground.
Hi
I’ve been on Gilenya since April last year. I was previously on Rebif but it wasn’t working for me. I had several relapses while on Rebif so I was offered Gilenya. I was also offered Tysabri but I’m JC positive so the risk of PML scared me off. Like you, I was nervous and couldn’t find much in the way of reliable information. I can tell you that since starting Gilenya, I have had no relapses and no side effects from the drug whatsoever. I was worried about infections etc but apart from the odd cold and cough I haven’t had any. My white cell count is very low but apparently that’s to be expected. I had to go into hospital for my heart to be monitored after taking my first dose. I was there all day. Apparently it dropped a bit in the first few hours but to be honest, if they hadn’t told me, I wouldn’t even have known. It certainly beats injecting and the nasty flu side effects that came with it. For me it’s been a godsend.
Hope this helps. Good luck whatever you decide.
JZ
Meme is it Fingolimod (Gilenya your on? Jz that all sounds very positive think you. Xx
Hi,
Have been on Gilenya just over a year - no side affects and beats injections any day.
Good luck
I’ve been on Gilenya since November and haven’t had any problems. The heart rate thing was a big concern for me due to a history of heart disease in the family but you are monitored for at least 6 hours after the first dose and my heart rate barely dropped. I don’t miss doing injections at all even though I didn’t mind doing them (I was on Rebif for 4 years before it stopped working). My latest blood test shows my lymphocytes are very low and I’ve just caught another rotten cold but apart from that - no problems. I thought the side effects sounded less severe than some of the other options eg Campath, Tysabri. Tracey x
Hi,I’ve been on Gilenya since September 2011,and before that was on the drug trial (Fingolimod/FTY720) for 2 years from 2007 to 2009.I learnt afterwards that I was on the drug,not the placebo.So,that’s about 4 and a half years.Between stopping the drug trial and restarting with Gilenya,the number of lesions I had doubled.I also had lots of small relapses,and then a bigger affecting my arms.
Since being on Gilenya in 2011,I haven’t had any new relapses or lesions.I have had new symptoms,but they weren’t counted as relapses.You wouldn’t know I had MS,to look at me.I do get colds more easily,but that’s about it.I sometimes wonder if I don’t get breathless more easily when doing sports.I’m not really sure.
My pulse did go down to 49 or 47 (can’t remember) with the first dose,then came up,and was fine again.
Have a look here.It has lots of useful info.
My lovely neurologist has told me that I will be on Gilenya for the rest of my life,or until something better comes along.I’m more than happy to take it,as long as he’s happy to prescribe it.
Hope this helps you.Good luck,Brenda x
I’ve been chatting on FB to someone who says been on it for 7 and only had one relapse in that time and all MRI scans showed no changes.
Only been on it for 10 days but I’m sure energy levels are up and thinking is quicker also.
Hobs that great… You’ll not know yourself with a bit of energy…when do you get checked again… Your heart and bp or I’d that it after the first tablet?
You wired to ECG on first pill for 6 hours mine went down to 42 and felt weird but nothing bad. After 3 hours it slowly creeps up if I laughed from 42 it would jump up to 60 so with each hour after my lowest would be 52, 60, 70 etc. Then they do a ECG print out at the end and Dr comes in to look at check it out then hopefully say your good to go.
I did not feel dizzy or have headaches etc and drove home on my own.
4 days later it was like I had mild food poisening or ate 50 bowls of albran so I took an imodium next day I was fine.
So far I have to say with ease and how I feel its better than Tysabri and that was a good drug to be on briefly.
Sorry but I’m firmly in the negative camp on this one. Started at the end of May 2013, after nine overall good years on Rebif (had two relapses in 2012 hence the move to Gilenya) I’ve had three relapses in nine months. First one was two weeks after starting it then two back to back before and after Christmas. Spasticity, which was never an issue for me, is horrendous, foot drop, which was barely noticeable is now a lot worse (I have a physio appointment tomorrow) Also now have problems with swallowing, I fell over in the car park at work and pain is increased. It has not been great for me. I feel I have deteriorated and wish I’d stayed on Rebif. The injections never bothered me - small price to pay for being well and having a life. The only thing that’s been good on Gilenya is I haven’t had any cold, infections etc. I had a new MRI scan five weeks ago and waiting for a referral for Tysabri. I think it’s the only thing that can save me now. I heard from my MS nurse that all but one person who started Gilenya at my NHS Trust has come off it. A girl I work with, whose sister has MS, has also come off it after only a couple of months due to her white blood cell count. I feel it’s only fair to give you the other side of the story. Good luck with whatever you choose
It’s great to get first hand advice from all sides, really helps. Good luck at the physos today, I hope it works for you. Thanks for the honesty, means a lot and really helps! I spoke with a ms nurse who says a lot of people have had to come of it as it done more harm than good. Anna xx