Hello everyone.
Just a wee post to ask about goodbye side effects.
I’ll start by saying that i don’t usually read side effect leaflets that come with medication as I’m paranoid enough and a hypochondriac with ms would be a bad thing.
I had a neurologist appointment last week as I’m having major problems with fatigue and I’ve been unable to work for the last month. My partner came into the appointment that i was having so that she could tell what she sees, anyway, she mentioned that shortly after taking my daily dose of gilenya i sometimes have seizures, get very confused and i never have any recollection of it in the morning, i also always have at least a number headache that sometimes gets very sore.
The consultant then told me to stop driving until they get some tests done to see if it’s epilepsy or not, i asked if it was one of gilenya side effects but was told no, my partner had a wee look online and 1 of the rare side effects is “headaches, seizures and confusion” this was found on a Polish list of gilenya side effects, and she says that the polish website slated gilenya as causing more illness and misery than any other medication available.
My question being, how do i go about getting off of gilenya? And has anyone else had or know of anyone that has had the same side effects?
Apologies for waffling so much
hi grumpyman
i’m on tecfidera but my nurse said that if it didn’t work for me, i could try gilenya or even lemtrada.
so i’m assuming the same will apply to you.
tecfidera sounds scary but the side effects soon wear off within a month.
how scary those seizures must be for both of you.
it is just plain wrong that the polish version gives more information, this needs fixing asap.
ask your ms nurse to get you off it as soon as possible.
i don’t know how long it stays active in your system and this may mean you need time with no DMD.
good luck
carole x
I am taking Gilenya and I’m not afraid to read the advisory leaflet. It clearly states that Posterior Reversible Encephalopathy Syndrome has been reported in MS patients but it is rare. Symptoms include severe headaches, confusion, seizures and vision changes. The information is also on the Gilenya website, so Novartis aren’t trying to hide anything. Their advice in the leaflet is to tell your doctor, which is a neurologist in our case. The advice on the website is to stop taking Gilenya. I recommend doing both.
All medicine has side effects and different people have different reactions. It’s a matter of severity. Obviously seizures aren’t something you can live with. Gilenya should clear your system fairly quickly, so stop taking it now if you haven’t already done so.
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