Hello I’m one of those people that buries their head in the sand when it comes to finding out things about the illness and only post when I’m going through a crap time, anyway, I was dx 9 years ago and have done not too badly until this year, I was on copaxone for a few years and only stopped when I started having a bad reaction to it caused by stress as I was going through a lot of emotional things (divorce and associated issues) up to that point I tollerated copaxone very well, I was then put onto another injection but gave up after 1 month as it gave me awful headaches, but for the last 4 years I have been on gilenya, it started very well but this year has been a bit of a nightmare, I get every little bug that is going around and pretty much feel ill all the time, so far this year I’ve spent 4 months signed off work with debilitating fatigue (not a bug) and was sat in my flat unable to do anything, for the last 9 months I’ve had a urinary tract infections that won’t go away and pills do nothing to shift it, I’ve had shingles for 2 months now and again medication isn’t shifting it and to top my horrid year, yesterday, the left hand side of my face swelled up from my temple to halfway down my neck and my new bulbous head is going from mildly annoying to very painful, oh, and the bottom of my spine is also very painful, this started yesterday too. Well, what I’m wanting to find out is whether or not any others on gilenya find themselves getting a disproportionate amount of other illness, viruses and infections? And whether or not anyone thinks that gilenya might be a factor, apart from the ms I normally keep well and avoid all of the bugs that are going around, at the time of typing this I am sat (tenderly) on my shingle rashed bum, sat slightly forward to help my back pain, with my head tilted to the right to help my swollen face a bit,
Oh! I think I have just vented apologies but if anyone has any information or views on gilenya I’d appreciate some feedback as I’m tempted to stop taking it (gradually of course) I would talk to a GP about it but getting an appointment is a lottery and the neurologist is the same, plus I value information about it from real life experience.