Forum

Fingolimod (Gilenya)

Hi all, has anyone experienced pain whilst taking Gilenya? I’ve recently had an MRI and thankfully no new lesions however I have pain in my neck and down my arm - feels like nerve pain. I also have other symptoms which are mimicking a relapse but my scan didn’t show that. My neurologist is completely baffled and hasn’t a clue… help… anyone??

[quote=“Sausageface666”]

Hi all, has anyone experienced pain whilst taking Gilenya? I’ve recently had an MRI and thankfully no new lesions however I have pain in my neck and down my arm - feels like nerve pain. I also have other symptoms which are mimicking a relapse but my scan didn’t show that. My neurologist is completely baffled and hasn’t a clue… help… anyone??

[/quote] Hi, you might want to repost this in the Everyday living section Sonia x

I’ve not had any drugs for MS but you can get nerve pain without it. It isn’t well documented like other symptoms like fatigue etc, but it’s not add uncommon as we’re led to believe. My main reason for initially going to the doctor was severe nerve pain. There are meds for this specific pain but over the counter drugs don’t usually have much impact unless combined with them.

Make an appointment to see your Neuro or GP and in the mean time start a pain diary - when and how it started, what aggravates and relieved it, destruction of type of pain i.e. burning, throbbing etc, where it starts, does it travel etc. By making a diary you have had time to think and record it before you’re sat answering those questions to your doctor and getting all flustered.

It often takes a while to get on a drug combination that works for you but please persevere as it makes a massive change to your quality of life being comfortable and able to sleep again.

Take care

Cath x