My experience of the MS treatment fingolimod
Tomas Ince is 31 and was diagnosed with MS in 2013. At the time, he had optic neuritis and before that, reduced sensation in his leg. He’s tried one of the beta interferons for his MS and now uses fingolimod (Gilenya).
When I was first diagnosed, I met with my MS nurse consultant and she talked me through the options that were available at the time. I started one of the beta interferons (Avonex) quite quickly. Another MS nurse showed me how to inject into the muscle, which I did weekly. I had quite bad flu like symptoms with it, which made it difficult to sleep. It was really affecting my quality of life. It got better, but it was hard to continue with the medication. After around eight months, I said I was struggling.
Researching different MS treatments
In 2014, they suggested fingolimod, which is a daily pill. At the time, I was very assertive. I’d done quite a lot of research about what I might want to change onto. I felt like the onus was on me to do the research. Natalizumab (Tysabri) had been mentioned but I wasn’t having regular relapses so it wasn’t appropriate for me. So I went with fingolimod. The MS Society website helped me make my decision.
Since taking fingolimod, I’ve done extremely well. I’ve not had any relapses since I started. What I would get sometimes is the odd fungal rash on my leg, the odd urinary tract infection (UTI). I’ve also had bad tonsillitis. I would say I became more prone to unusual infections. But, it’s tolerable and the last few years have been better.
It’s absolutely routine taking a pill now
It’s much, much easier to take a pill. I’m not shy about needles but it was difficult to do, and painful injecting into the muscle. I used to do it on a Wednesday or Thursday evening. Leading up to it, I dreaded it a bit. At the time I was on Avonex I went to China, and it had to be stored at a cool temperature. The logistics were more challenging.
It’s absolutely routine taking a pill now, I may forget it once or twice a year. I take it when I clean my teeth, that’s my cue.
Fingolimod and the COVID-19 vaccine
I went to see my consultant a few weeks ago and they mentioned that fingolimod diminishes the COVID-19 vaccine’s ability to work. He said if I was older or had other health conditions I might need to consider switching but because I’m young and healthy it should be fine.
I’ve had no other major side effects. You can’t have the yellow fever vaccine while you’re taking it so it does limit the countries I can travel to. But I’m very, very happy on it.
I have the option to go up if I need to
I follow the research less vigorously now, so I’m guided by my MS team. Unless there’s a new treatment that could really limit the chances of stopping disability in five or 10 years’ time I won’t change in the near future.
I personally find it very easy to take fingolimod, with minimal side effects. It’s prevented me from having a relapse over the past eight years and I’ve done extremely well on it. It’s a good intermediary between the beta interferons and the stronger medications that come with more risks. I have the option to go up if I need to, and that’s reassuring.
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