i haven’t been on the site for a while, everything seems very different!, what have I missed?!
Ive been taking gilenya since April this year. At first all seemed to be going well, little hair loss and lack of appetite (probably a good thing!), all better than the nasty flu effects if rebif. Then in July I had a pulmonary embolism, which I thought was the ms hug at first, but luckily my husband wasn’t as convinced and took me to a and e otherwise if could have been a different story! Since then I’ve also developed anemia, had a relapse, 2 chest infections and a couple of uti’s.
I know gilenya can lead to infections as it lowers your WBC, but 4 in 4 months seems, to me, excessive! It feels as though my health is going down the crapper pretty damn quick. I’m only 30 and have two small children 6&4, I’m as so exhausted all the time, constant ms annoyances to deal with also like stiff legs, pain etc… and although I try my best to stay positive and look on the funny side of life, it’s all starting to take it’s toll.
Im wondering if the gilenya is my main culprit, and if so is it time to try something else? Especially as I have continued to relapse. My nurse thinks it’s early days still (8m in?!) and no neuro appt till February. My gp hasn’t a clue, just keeps telling me to rest - yeah good luck, I’ll just let the kids look after themselves lol.
Has anyone else noticed a sharp decline in health after starring Gilenya or am I just unlucky? Help and any advice you can give me would be appreciated muchly!
Sorry this is so long. …ssdd x