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Offered fingolimod - questions!

I saw my neuro yesterday, who delightfully ignored pretty much everything I tried to discuss with him and skipped straight into haranguing me into taking fingolimod.

There was no real discussion; more an assumption that this was the best option (I have been on all the injectable DMDs to no effect) and that I had very little say in it. Of course, I’m grateful that it’s on offer and I know that others aren’t lucky enough to be given this chance, but I was really miffed by his attitude. I was in and out in 5 minutes.

Another issue I have is that I like to do my research; I’m a nerd who is interested in trial data and it concerns me that long term follow-up information on the drug is thin on the ground. Also, the lowering of your immune system worries me in that I struggle with work now but I’m able to work at home when I’m bad - but if I were to get infections (I know this isn’t necessarily going to happen), will I even be able to do that?

I’ve re-read this and sound like a right whinger - I don’t mean to. I just got so wound up yesterday! Please don’t think I’m ungrateful, but I need some guidance

Very best wishes

hi SJ

if you aren’t happy with his suggestion, tell him!

it’s a huge deal.

at least you should have time to do a bit of research.

like tecfidera regular blood tests are a big part of gilenya.

with tec it’s liver problems they are looking for.

hopefully you will have few problems with it and it should reduce your relapse rate considerably.

good luck

carole x

Hi

You don’t sound like a whinger - however your neuro sounds like a right ar$e!

I was on Rebif for 4 years, relapse free, until I had 2 disabling relapses within 3 months. My neuro felt this meant it was no longer working for me and we should consider other options. This was a bit of a shock to me as I was hoping the 2 relapses would count as 1 long relapse (more a case of denial to be honest), and I thought I would still stick with Rebif.

My neuro set out the different options with pros and cons and left me to make the final decision although he said if it were him he would opt for fingolimod which is what I was already leaning towards. I must have spent a good 30 to 40 minutes with him while he did a ‘full MOT’ of my body and discussed my future options. I had the weekend to think about it and then rang to confirm my decision.

I did find this long term study about fingolimod:-

There is lots of anecdotal evidence on the fingolimod users Facebook page.

I, like you, was also concerned about the possibility of infections. In the first few months, I did feel cold, my glands in my neck were constantly swollen and I felt just not quite right but nothing specific. I also caught a few colds but they didn’t turn into anything nasty. I also had my only ever UTI since having MS but it was cured quickly by a dose of antibiotics.

At around the 3 - 4 month mark my neuro wrote to say my lymphocytes were very low following a routine blood test but as I was generally keeping well he would leave me on the drug and see what happened. At the next blood test, they had obviously picked up because there was no further action.

I work in a high school, in an administration in position, in regular contact with the students. They have the usual array of childhood illnesses and yet I rarely get ill, not even a common cold. I have now been on fingolimod for 2 years and feel very well for someone with MS. Best of all, I don’t seem to have the constant brain fog that I had from Rebif. I didn’t even know Rebif was the cause until I stopped taking it.

I hope this answers at least some of your questions. Good luck whatever you decide

Tracey x

I’m in pretty much the same position. I’ve been on Tysabri for four years and have deteriorated massively in that time. I’m wondering whether to change to Fingolimod. I change daily as to whether it is a good idea or not. At the moment, I feel terrible for nearly a week after having Tysabri and it doesn’t seem to be doing me any good. But I could feel worse and deteriorate faster on Fingolimod. I don’t really believe that anyone can tell me what’s going to happen to me, whatever choice I make.

Your neuro sounds poor - but in truth he doesn’t know what will happen to you if you go on this drug - no one does. Just to make the choice more difficult, if you start it and it doesn’t agree with you, you are at risk of rebound relapses if you go off it again.

Your neurologist sounds like a bit of a bully. I know we complain about neuros who give us a list of drugs and then say ‘pick one’! But determining exactly which one you should be on with no discussion, or giving you any choices makes him seem (as Tracey said) like a ar$e. What about Tysabri? Or Tecfidera? Both are better than beta-interferon or copaxone, as is of course fingolimod.

Is it more to do with what clinic s/he has set up? If that’s the case, then you might well be best advised to give fingolimod a go, because it will be directly supervised by your own neurologist, and not require referral to a different neurologist. And if you were to opt for a treatment that is not supported with a clinic in your hospital, you might have a lot more travelling etc.

And you may find that you start fingolimod and have no problems with infections etc.

Best of luck anyway, whatever you go for.

Sue

Hi, this isn’t probably going to be much help as I was only on fingolimod ( Gilenya ) about 2 months before I was taken off it by neuro. I was looking forward to getting Gilenya as I had such a bad time with Rebif.

I just had to have a blood test for the chicken pox virus, can’t remember why, sorry. Then you have to have a day in hospital to have your first pill and they monitor your heartbeat/pulse. If your heartbeat goes too low then they may not let you have it. Started taking it and I felt absolutely fine, no horrible side effects BUT I did start getting a frequent " pulling " feeling below my right eye and didn’t think much of it. Just happened to mention it to my ms nurse and she immedietly got neuro to refer me to eye clinic. They discovered I had some sort of hole in my fovula? so neuro decided to pull me off it straightaway and then the pulling sensation stopped.

I also had really low lymphocytes too, they took two lots of blood over two months and the ms nurse said " oh dear, they’re a lot lower than we would expect". She hoped they would get better but I never got to find out whether they would increase. I think Gilenya gives a really good reduction rate of relapses but tecfidera gives the same rate and I don’t think there’s the danger of possible heart or eye problems with tecfidera.

I wonder why you neuro is so insistent on Gilenya unless of course your health authority doesn’t prescribe Tecfidera yet. There is also Aubagio to consider but I know this requires very frequent blood tests so I would think your immune system takes a battering with that one and that’s only a relapse reduction rate of about 30%.

Don’t agree to take anything you’re unsure about, have you got an ms nurse who knows more about Gilenya and can discuss it with you.

Whatever you decide to do, good luck,

Anne-Marie

Thank you everyone for replying. I would have to go to a different hospital to where I currently see my neuro to have the initial dose, and I have no information on where any follow up appointments would take place for blood tests, etc. My husband already has to take time out of work to get me to the hospital where I see him now, (public transport from where I live to there is impossible), so it all seems very daunting.

As for discussing it with my nurse…I haven’t seen my nurse for well over a year (no contact from them), I don’t know if it’s the same one I saw last time, etc…I write it all off with a sigh as I’ve got used to it all after being diagnosed over 10 years now, but if this was all new I’d be very anxious.

Thanks again! x

Tell the neuro, “fark off buddy, i want to give tecfidera a try first.”