This is about my experience taking Gilenya for around 8 years. When I turned 60 my doctor and I decided to test which medications I’d been taking, were actually helping me and which, I could possibly do without. I already knew that I needed to stay on Baclofen from my experience having the Baclofen pump installed and then removed within two months. See My Life with MS – Background. I also knew that I couldn’t stop taking Effexor XR 150 mg. for depression. That left Ampyra and Gilenya.
First I cut down my dose of Ampyra from 2 tabs to one, then after a week and a half, stopped altogether. I did not feel good at all, I was very weak and tired so I started Ampyra again at my regular dose. Next I stopped taking Gilenya. This seemed to have no effect on me whatsoever. I talked with my doctor and we decided to stop this medication.
While I was on Gilenya, I had to be monitored by my eye doctor for Macular Edema, one of the side effects of Gilenya,(like optic neuritis, another MS symptom). For this I went every six months. While seeing the eye doctor, he stated that I had dry eye and he prescribed Restasis eye drops. I used the eyedrops the entire time I was on Gilenya and for two years beyond ending the medication. During that time my eyes ached terribly all the time. He told me to use over the counter eyedrops during the day. My eyes still ached.
When my prescription finally ran out I needed to go back to the eye doctor in order to get a new script. In the meantime I only used the over the counter eye drops.. My eyes stopped aching, I have no pain and did not ask for a new prescription for Restasis.