Hello everyone, I am 40 yrs old and was diagnosed with RRMS 6yrs ago. I’ve ben taking Rebif since then and have been doing quite well until 6 months ago. I became unwell at the beginning of Dec 2013 after contracting flu-like symptoms which severely reduced my mobility. After a week of two I felt a little bit better until New Year’s Day when started to feel light headed. It couldn’t have been alcohol because I hadn’t even finished a small glass of champagne! The following day I woke up feeling drunk again and after a couple of days of familial pressure I went to my GP who diagnosed vertigo. The vertigo symptoms began with pains down the insides of my little fingers and into my forearms as well as sharp stabbing pains in my hands but at the the time I didn’t link them to the vertigo symptoms. Since then I’ve suffered badly with horrendous outbreaks of coldsores, fatigue and poor circulation. Probably other things too that I can’t remember at the moment. This has been the worst 6 months of my life with regards to MS and as such my Neurologist has arranged a new MRI scan and suggested a chat about a possible change of medication depending upon results - Fingolimod. So, I was wondering what your thoughts and/or experience are with regards to this new drug. I realise that no medication comes without it’s side effects but I’ve read the possible ones experienced with this drug and they’re bloody scary - pardon my French - even if it does seem to reduce relapses. So, what do you think? And words of advice?
I switched to fingolimod (Gilenya) in November after two relapses affecting my mobility last year. I was previously on Rebif for 4 years and had been relapse free for most of that time apart from a sensory relapse shortly after starting Rebif. It came as a shock when my neuro said I needed to switch DMDs as he felt that Rebif was no longer working for me.
I was a little nervous about Gilenya too when you read the side effects especially as there has been a history of heart disease in my family. However, after a full heart scan I was declared fit to start on Gilenya and the first dose was uneventful.
Since then the side effects have been minimal. I’ve had the odd upset stomach and a bit of back ache recently but I still prefer that over the flu type side effects I had at first with Rebif. For the first few months, I didn’t notice any side effects at all so I’m not even sure that the upset stomach and back ache are related to the drug but they are listed as common side effects and the upset stomachs didn’t seem like they were caused by a virus.
Of course, the big bonus is that it is a lot more pleasant to just pop a pill every day than doing injections. I never minded self injecting but I sure as hell don’t miss it!
Good luck whatever you decide
Tracey x
Hi
I’ve been on Fingolimod (Gilenya) since April last year. I was previously on Rebif but I had several relapses and new leisions on my brain so my neuro switched me to Gilenya. Since then I’ve had no relapses and no side effects at all. This is the best I’ve felt since my MS symptoms started 4 years ago.
When you take your first dose, you need to spend 6 to 8 hours in hospital having your heart monitored. This is because initially it makes your heart rate go down. Mine dropped a bit and then went back to normal over the next few hours. To be honest, if they hadn’t told me I wouldn’t have noticed. You get your heart checked beforehand as well. There’s a heightened risk of infections due to the way the drug works (reduces white blood cell count) but apart from the odd cold, I haven’t had any. There is a very small risk of PML but much less than with Tysabri (although Ty is apparently more effective). My neuro said the risk was so small that it wasn’t even worth thinking about (easy for him to say!).
Everyone is different and I’ve heard a few negative stories about Gilenya but for me it’s been a godsend. I just take one pill a day and no more nasty flu like side effects or painful injection sites. And most importantly no relapses (touch wood).
Hope it goes well for you. Please don’t hesitate to PM me if you want more info.
JZ
Thank you so much for your comments I’ll bare them in mind when I make my decision. This forum really is a godsend to people like us isn’t it.
Jenny
Started it in May 2013 after nine overall good years on Rebif and first MRI since diagnosis in 2001. Came off it last month after my fourth relapse on it. It was absolutely not the right drug for me and I’m now in limbo as a new MRI scan doesn’t back up what’s actually been happening and currently not on any DMD. Showdown looming with a neurologist on Wednesday who said back in January that she would refer me to Addenbrookes whatever the results of the scan were and she still hasn’t done it. She is going to regret playing with my life, I promise you.
Well, it turns out my back ache was due to a bladder infection which has now been treated with antibiotics (note to self - do not blame all symptoms on listed side effects!). I’m feeling great again now. I have a further check up early next month.
Tracey x