I switched to Gilenya in November 2013 after being on Rebif for almost 5 years. I had had two disabling relapses in March and June 2013 so my neuro said Rebif was no longer working for me and I needed to consider switching DMDs.
I had a check up with my nurse one month after starting Gilenya with blood tests. After that it was every 3 months for the first year and the eye check up at the 3 month point as well. Now that I’ve been on it for a year and the blood tests haven’t shown up anything untowards, I only have to go every 6 months (once with neuro and once with nurse). I thought this was standard in the UK because Gilenya lowers your white blood cell count and can affect your liver so the blood tests are very important in the first year to keep an eye on this. My white blood cell count was very low at the 3 month point (if I was on the trial I would have been taken off the drug) but my neuro said while I was feeling well and not picking up infections he would leave me on it. By the next check up, my body had sorted itself out and my white blood cell count was back within an acceptable range.
I kept my nurse up to date in the first year regarding illness and infections so they could log these on my file. I was lucky and didn’t have many to report. I did catch more colds than usual in the first few months but they didn’t turn into anything more nasty. I did have my first UTI at around the 3 month point but as they are common with MSers anyway I wasn’t unduly concerned.
It did take a while before I felt any better but my mobility had been affected by the relapses so the Gilenya plus (eventually) physiotherapy did help and after a few months I did notice a difference in my walking. I did notice a difference in my cognition fairly quickly though and hadn’t realised how groggy Rebif had made me feel until I stopped taking it. I do still suffer with fatigue so I do still have zombie moments when the fatigue hits and I can’t put two thoughts together lol!
If I were you I would be questioning why you are not having check ups every 3 months at the very least. Even if it’s just a 5 minute phone call with your nurse? Do you at least have blood tests scheduled for every 3 months?
Hope Gilenya works for you as well as it seems to be for me.