Hi I wonder if anyone can give some advice please? I was diagnosed with rrms on may 1 2013, started copaxone that month. Think I had a small relapse of Optic neuritis very mild in October. No other issues apart from symptoms. Saw my neuro today who wants me to go on gilenya. He says it should be used as the first line treatment when diagnosed rather than injectables? Anyone heard of this? He was singing its praises. Also said some trials took place at this Hosp. Thing is I want another baby. He said should try ASAP whilst on copaxone then go on gilenya after the birth. Has anyone had any situation similar and what are the side effects like? Thanks in advance x
Hi Leanne
I’ve been on Gilenya since April this year and I’ve found it to be excellent.
I was on Rebif injections for a year previously but had 2 relapses, one small and one ‘significant’. They gave me the option of Gilenya or Tysabri. I went for Gilenya as I’m nervous about the risk of a serious brain infection called PML with Tysabri. There is still that risk with Gilenya but I’ve been told it’s so small as to be not worth worrying about. Do you know how Gilenya works? It’s worth Googling to get some background info. You need to go into hospital for your first dose but it’s only so that they can monitor your heart rate. Mine dropped a bit and then recovered. I never even noticed.
Since starting on Gilenya I’ve never felt better. I’ve had no relapses (touch wood) and no side effects at all. It also beats the hell out injecting and the flu-like side effects that come with it.
Feel free to send me a personal message if you want more details. Good luck whatever you decide.
JZ
Hi Leanne, I have been on Gilenya for a year and a half now and found it to be perfect, I have never had any side effects from the drug, my only concern was regarding the first time its taken but spent the day in hospital with the people from the drug company after taking it but had no problem. I would recomend it to anyonr that has rrms for sure.
Hi Leanne
I was in the Bailey’s/fingolimod trial for a year and have continued taking it since. I’ve not had any side effects or any serious relapses since I started it two years ago. When I say not serious there has been a definite regression but possibly/hopefully not as serious as it could have been. It did raise my blood pressure slightly at the beginning.
To me it was and still is just 1 tablet once a day.
Please feel free to contact me if you need any more info.
Simon
Hi thanks for all of your replies. I’m still thinking about wether to start trying for another baby. If I do then I can’t take it but will def go on it after the birth. Thanks