@bound2camp

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bound2camp

gilenya

I have been taking gilenya for a year now for my RRMS. I have had no relapses, not sure if its the drug or just the way it would normally go for me. Is anyone else using it?

norfolkgal

@norfolkgal

I have been on it for 6 weeks now @bound2camp and I have been thinking how strange it is so soon but I feel better than I have for the last year or so. I just thought it is a relapse coming to an end but all fingers crossed Gilenya keeps this up for me...........and you.

JimmyT

@JimmyT

Been on it since July. With the relapse rate I have been having for the past few years I would have expected at least two relapses since I started. So far so good, no relapses. However, with few lymphocytes floating about doing their thing I have had cold after cold with sinusitis a particularly nasty symptom. Things do seem to have settled now though. Having to watch my total white cell count with the Doctor as it keeps dropping a bit too low to be comfortable with, this could be a side effect.

Klewton

@Klewton

I started it in July and so far so good. No relapses and in good health (despite working crazy hours -15 hour days for several weeks, weekends etc before Xmas). Was on Rebif and Copaxone prior to this so thrilled with no injections!

katten

@katten

I have been taking it since May last year. no side effects and feeling much better, more energy, no relapses... feeling 'normal' whatever that means!! Still have some issues left over from the last relapse (numbness etc) but managable. Hope it continues... All the best

janep

@janep

I've been taking it since last Feb so almost a year for me too. No relapses since starting (touch wood!) and no side affects except slightly more minor bugs and sniffles than before but loving the lack of needles in my life! xx

pommykev

@pommykev

Hi, 18 months in and relapse free. All going well at the moment. Keep away from people with colds and try to remove anything that stresses me. K

Ros

@Ros

Just about to hit my first anniversary on it following over 3 on Rebif. I do seem to get backache and headaches though...anyone else get these side effects?

kerrylousie

@kerrylousie

about to have my first dose on 27th Jan but reading up on others experiences there seems to be nothing but good comments so hopefully .........

Aileen

@Aileen

I call it my miracle drug! Been on it almost 3 months now and feeling better than I have in years! Was previously on Rebif had a hard time with that so saying goodbye to injections was brilliant. I was so disappointed when my JCV test came back positive, I was putting all my hopes on Tysabri but I wouldn't swap G for the world. Never had a single side effect on Gilenya and so far no relapses (touch wood!). No bad symptoms either, it's even cleared up my migraines (I think anyway!) First blood test was all ok and have my eye test end of March but expecting that to be ok (fingers crossed) as my vision is fine. All the very best of luck @kerrylouise I hope it works for you x

irishgaz

@irishgaz

I've been using this for 12 months after Rebif for 9 years. No relapses and no side-effects although I may be more exhausted than I was before but then is that the drug? or the condition? Generally very happy with it although the 3/12 MS nurse visits and bloods cause havoc with work life as my employer pays no sick pay even for a few hours except for the chosen few in the practice, miserable sod. It's also rather depressing to realise just how much it costs the NHS as well - £12000/year and it would be £15000 if the bloods etc were to be done outside of the hospital environment when VAT would be added

Stumbler

@Stumbler

@irishgaz , you may want to have a read of this and see if your employer should be a bit more considerate - they may be breaking the law! http://www.mstrust.org.uk/shop/product.jsp?prodid=246

pepe

@pepe

I have been taking it for 8 months and everything ,apart from my balance,is much better.

irishgaz

@irishgaz

Thanks Stumbler, I've read the relevant pieces and he has given me the option of altering my day off on the appointment weeks which is reasonable and appropriate for him, just not my preference when I don't feel an hour and a half paid sick leave is that unreasonable. More me and him and the optical world than a legal issue. Thanks for looking though