Gilenya

Everyday living
1

Hi

I’ve had my annual appointment with the neuro today and have been offered Gilenya. I qualify for this as I’ve been on Avonex for 4 years but it doesn’t seem to be working very well now as I’ve had a couple of relapses during the last 12 months.

It goes without saying that I said I wanted it, I hate the injections but they’ve served me well.

Just trying to find out as much as possible for I start on it in June … Is anyone else on Gilenya? Is it working? How are you finding it compared to the interferons?

Thanks in advance

Ruth x

2

Ok so I take Gilenya for 3 months and I would say its the best next DMD for shutting up MS compared for Tysabri.

Saying this 3 other friends who took it got fatigue and one of them also got Vertigo.

The other person out of the 3 said the fatigue eased off after 3 weeks.

I would say at the end of the day if you won’t get on with Gilenya then its not the end of the world you just change to
a different DMD.

If you want to ask load of questions with people who have been on Gilenya for years then sign upto

3

Hi Ruth

I’ve been on Gilenya for over a year now and had no relapses in that time. I was previously on Rebif but had a couple of nasty relapses while on it so they offered me the choice of Gilenya or Tysabri. I tested positive for the JC virus and the (remote) possibility of PML put me off Tysabri so I opted for Gilenya. Although there is still a very small risk of PML, my neuro says it’s so small that it’s not worth even thinking about. There is an increased risk of infections etc due to the way the drug works, i.e. inhibiting white blood cell count, but I haven’t had anything like that.

I’ve had no side effects and no relapses. This is the best I’ve felt since my MS started 4 years ago. I know some people don’t get on with it and everyone is different but for me it has been a godsend and it beats the living daylights out of injecting and the nasty flu symptoms that come with it.

Good luck whatever you decide to do. Feel free to send me a PM if you want any more info about my experience of Gilenya.

JZ

4

Hi Ruth

I’ve been on it since November last year as Rebif stopped working for me. I’ve not had any side effects really and although I didn’t mind self injecting, I certainly don’t miss it! Starting Gilenya was certainly a breeze compared to starting Rebif with the horrid flu type side effects.

I did notice that the glands in my neck were always swollen for the first couple of months and I caught a couple of colds but they didn’t turn into any nasty infections. Apparently my lymphyocytes were very low at the last blood count in March but I think they must have risen again because my glands have gone down and I feel really good at the moment. I have another blood test next month so I’m sure I’ll soon find out. I think this is common and as long as they stabilise it’s not a big deal.

Good luck

Tracey x

5

Thanks for the advice and support, have joined the group on Facebook.

I’ve decided I’m going to go for it, the neuro said he thinks it the best of the tablets at the moment so nothing ventured, nothing gained!

Ruth x

6

I’m the one unlucky one on this forum!

I started it in May 2013 after two relapses in 2012 (previously on Rebif for nine overall good years - I still relapsed but I had a good quality of life on it until 2012)

I’ve had a very torrid time and came off it last month after four relapses (first was two weeks after starting it then three pretty much back to back ones since November) however, a new MRI scan shows no new activity so it seems to have done it’s job - I can’t say it’s felt like that! Spasicity, which I’d never really had before, has been a major new symptom and I am still really struggling with it. Lots of other crappy stuff too.

My neurologist has finally referred me to Addenbrookes to discuss what to do next. I’m going to push for Lemtrada - apparently Tysabri is out as I have no active lesions - but it’s fourteen and a half years since my first relapse and the one positive thing is I’m still walking unaided. I still think I can be ‘saved’ by the right drug.

7

Oh, I didn’t get any of the colds, infections, UTI’s and my bloods have been fine.