Hi all,
Does anyone have experience of this drug making other illnesses like colds worse? I was taking rebif for 10 years and went on to gilenya in June this year because of declining injection sites. Although I had nearly all the side-effects listed within the first 6 weeks, I thought everything was settling down. Then I caught a cold a week ago and have had to have a whole week off work because, well it felt like I was dying! I would normally brush off a cold in a few days, but I could barely get out of bed and still have the most terrible headache. Now my worry is this: if every time someone sneezes near me, does it mean I am going to have absolutely no ability to fight back with my immunity decreased so much? I’m a teacher,so am in contact with illnesses on a daily basis and cannot afford to have time off. I’m not sure whether to contact the neurologist to say I want to return to rebif, or to wait and see if this was a one off event.
I’d be grateful for any advice. Thanks
Hello Ajay, I started taking Gilenya on 22/09, so very new to me. My MS nurse warned me that I would get ill more or things that normally would be easy to fight off can turn nasty. Funniest thing was when she said to try and stay clear of illnesses, I have a daughter in nursery so impossible! And then she said to stay away from crowds of people! She told me that it’s the way Gilenya works and reduces your white blood cells which we use to fight illness with. As I always say MS drugs give with one hand but take with the other! Think I’ll be buying a mask 
xx
Hi, Honey,
Thanks so much for your reply. I had exactly the same thought about the mask but I think it might alter my teaching style rather too much! I wish you all the best with the meds and the ms. Alison xxx
Thank you Alison. Hopefully the meds work well for us both and we stay infection free Kind Regards x
Hi Alison
I’ve been on Gilenya since November 2013 and I did find in the first few months that I caught more colds and sick bugs than normal. Luckily for me they didn’t turn into anything really gruesome like chest infections but they did knock me off my feet by way of fatigue and weakness. I did have to have time off work with them but that is normal for a head cold and I always moan that even a simple head cold goes straight to my legs. Shortly afterwards the 6 month blood test that showed that my wbc was very low but my neuro said while I was doing okay he would keep me on the drug and see what happened.
At the next 3 month blood test, my wbc had stabilised and I wasn’t picking up every bug going around.
I am the attendance administrator in a high school and have kids in my office all the time. The sixth formers like to come and tell me how sick they are and that they need to go home early and I’m trying desperately to get rid of them as fast as possible before they pass their germs on! I have been known to spray disinfectant spray around the room as soon as they have gone. I did get a bit paranoid for a while but I’m not so bad now as I haven’t picked up any nasty bugs for a long while (touches wood).
Stick with it for a while and see how things go. I think the first few months are the hardest as it takes your body a while to get used to the way the drug works. I honestly feel better than I have done in years. I’m not up to running a marathon but I don’t suffer so badly with fatigue like I used to and I don’t have the constant brain fog that I had with Rebif. I didn’t realise how crappy Rebif made me feel until I made the switch.
If it really doesn’t agree with you after another few months, then you may have to switch but at least you can say you gave it a good go.
Good luck
Tracey x
Hi, Tracey,
Thanks so much for your reply. I’ve decided to stick with it and then rethink if I have another bout like last week. I have invested in some antibacterial hand gel for school - I might consider a spray too! I’m so glad you’ve found gilenya helpful. To be honest over the 10 rebif years, I thought I was completely in remission, but when I went through the MRI scans with my consultant, there was a noticeable increase in lesions, so let’s hope I can stick with this. Thanks for your support.
Alison