Anyone else on Gilenya/Fingolimod? Feeling low

Hi everyone I’ve been on fingolimod since September now and have felt awful since taking it. I get cold after cold and my hair is falling out and dry and brittle. I have highly active rrms and this is year 13 since diagnosis and I’m hoping it will be a good year. I’ve finally had to succumb to using my stick everywhere I go and if I’m lucky can walk 15 meters before my legs start to drag. I’ve had several doses of steroids which I hate because of side effects and always improve even so much so my consultant acknowledge that it isn’t a steroid high even though I feel awful taking them. Then after 2 weeks decline again. Just wondered if anyone else is having a rough time with it? Feeling really low at the moment and terrified that this is when it progresses with no return. Just feel that I’ve always made the wrong decision about my treatment. I suppose full of regrets.

Hi Anon, I am diagnosed RRMS (diagnosis 9 weeks ago) but not on any DMD’s yet but have been offered them. Sorry to hear you are feeling low. For the last 4 months i’ve had colds and over the last few days again more sneezing. The guy at the newpaper counter in shop had a heavy cold yesterday and sneezed everywhere. Hope you feel better soon xx

I’m on Fingolimod. Better for me than injections. My hair fell out more than usual, month 4 and it is slowing. Also had depression, both are listed as side effects. It can also lower your white blood cells, as that is part of the intention, but keep a check on it, maybe you need to ask for another BT to check, low white count leaves you at higher risk of bugs.

There is no answer to whether you may or may not be as you are. I always think, well maybe i would have been worse without the drug. There is no knowing. Everything we take comes with a risk we have to balance, it an be really hard at times. If you are really down maybe speak to your GP about it. Don’t suffer in silence, cos things seem worse then

How low are your lymphocytes and white cells? Mine used to be border line @ 0.2 always ill. Now i take fingolimod on alternate days (neurologist changed dose) levels are now 0.3. It may help

Yep, me.

Started Gilenya in May last year (after nine overall good years on Rebif but had two relapses in 2012, the last one an eight weeker) and not feeling the love. Currently on my third exaserbation.

Saw a neurologist yesterday who agreed it’s not working for me and has ordered a new MRI scan and if there is new activity or not, I’ll be referred to Cambridge to be considered for Tysabri although she thinks my relapse history is not going to be enough.

So yes, very frustrated and fed up the moment. I had my first episode in 1999 and I’m still walking completely unaided but I’ve had problems with my left leg for about five years now, kept under control by Pregabalin, but now experiencing noticable foot drop and feel it’s not going to recover this time and I’m very down about it whereas until the last couple of years, which have not been great, I was always really positive about how things were going. Yes, I was still experiencing relapses on Rebif but they were always very mild in the scheme of things and I have very little residual damage considering how long I’ve had MS. I just find it dishearterning that you have to be considered “bad enough” for the good (expensive) drugs. I know we are VERY lucky to have the NHS in this country but surely everyone should be getting the best treatment to stop the slide into secondary progressive…? I feel it’s such a small window of time that this needs to be nipped in the bud and I’m scared that I may have now missed the boat.

My lympocytese are currently 0.1.7. A little concerning. I feel ill in lots of respects at the moment ., mainly exhausted headaches etc. Have to have a BT on Monday, maybe i’ll have to reduce it too