Forum

Gilenya or Tecfidera

Hi I haven’t been on here for a while, but I thought i would ask your opinion.

I was on the Gilenya ( fingolimod) trial since 2007 until it was given to me when it was licensed. I have been made fully aware of the side effects such as basel cell carcinoma (skin cancer) but thought it was worth the risk.

But unfortunately I have developed one of these on my leg, which I am having removed, but I have been asked to consider changing my meds to Tecfidera, which I have been given all the blurb. I have been so well on Gilenya that I am loathed to change, one because of the side effects and also if it didn’t agree with me then I would not be able to go back to Gilenya.

One bit of me thinks I will stay on Gilenya as I have been fine on it but another thinks I should change.

The thing is I have always been a sun worshiper and even used sun beds, so this could have happened any time.

I am tempted to stay on Gilenya for now if anything else happens change then, I think it’s the mention of the flushing I am of a certain age that my hot flushes are not as bad as they used to be, so I don’t like the sound of that also I already take omeprazol for bad stomach problems.

I would appreciate your thoughts

Julie

hi julie

tecfidera is ok once your body accepts it.

just make sure you don’t take it on an empty stomach, part way through a meal is best - trapping it between two lots of food.

doesn’t matter what the food is.

they used to say have fatty food but there is only evening meal when i can face that.

flushes can be helped by taking an aspirin before and maybe an anti histamine after.

you’re aware of the risks with gilenya so if you stay on it be very observant of any changes in your skin.

ain’t it a b*tch when you are so scared of side effects?

good luck

carole x