Hi. Can anyone offer me any advice about the oral treatment Fingolimod or Gilenya? My neurologist has said that I now meet the criteria to be eligible to receive it. I am taking Rebif at the moment but this may not be as effective for me anymore. I know that Fingolimod is stronger and it would be great not to have to inject any more (Been on rebif for 10 years), but my main concerns are the side effects. Do the benefits outway the risks? Can anyone let me know what side effects they have experienced? Do you think that changing from Rebif to Fingolimod is a good idea or not? Please. I need as much advice as possible to help me to decide.
Hi I was in the same position last year. I had been on Rebif for 4 years and had been relapse free for 3.5 years but then had 2 relapses within 3 months so neuro felt I needed to switch DMDs and gave me a couple of options of which Gilenya was my preference. I finally started on it in November after all the tests were completed. I was apprehensive about the side effects but so far so good. On the day of the first dose my heart rate barely dropped and apart from feeling a bit chilly during the week that followed I was fine. Since then I have caught 2 colds but they haven’t laid me up any worse than usual (everything goes to my legs anyway). My neuro has written to say that my lymphocytes are very low but he doesn’t want to take me off the drug while I am feeling well so we will discuss it when I am next at clinic in June. Good luck whatever you decide Tracey x
Hi, I have been on Gilenya for two years now and have never had a problem with the drug or side effects at all. I like the fact that no injections like with Rebif, as i was on this for almost two years and was told by my nurse that i should change to have better results, and she was right my results are great on Gilenya. I have had a bad relapse and just returned to work after 9 weeks off, but not bad going as its the only one i have had in three just over two years. Once you have had your first tablet in the hospital there is nothing to worry about after that.
Hi Tracey, Thank you for replying to my post. It’s good to hear that your side effects have been minimal. What does the Neuro mean when he says that your lymphocytes are low? What effect does this have? Thanks again. Hope all goes well in June. Anita. x
Hi Richie, Thanks for your reply. Sorry to hear that you have just had a relapse but it’s good that you are well again and that you have been doing so well on Gilenya. Thanks for the positives.
Can anyone let me know how they decided to go on to Gilenya? My daughter has been on Avonex for a year but the consultant wants her to go on to Gilenya as her latest scan shows more brain lesions. The side effects sound scary. She doesn’t know what to do.
Hi,
I have been on Gilenya for almost 5 years,so have lots to share,but don’t have the time just now.I should manage later on today to reply more fully.Most of my posts are about Gilenya,if you fancy looking back at them.
Have a look here:
Brenda x
Hi Anita
This is how Gilenya works. It traps T cells in your lymph glands so they can’t cause havoc in your immune system resulting in relapses. Lymphocytes are a type of white blood cell responsible for fighting off infection. Gilenya is supposed to lower them but in some poeple they fall very low. Mine are apparently very low and if I had been on the clinical trial, I would have been taken off the drug. Many neuros think this was over cautious so my neuro doesn’t want to take me off the drug while I feel well. I trust him to look after me and he says we will discuss this further in June (obviously if I am concerned in the meantime I can ring the clinic).
I have noticed that the glands in my neck are constantly slightly swollen but they are hyper sensitive every since I had glandular fever. When I had a cold recently they were very swollen and my neck was quite achy but at least the cold was just a cold and didn’t turn into anything nasty so my body is still capable of fighting back. I think the danger may be that I could pick up an infection and become very ill needing antibiotics etc however so far I haven’t. I have been scrupulous about hand washing etc as I work in a high school where viruses are always going round.
Tracey x
I was in the fingolimod trial having struggled with injection site issues on copaxone. I never experienced any side effects and was very well on it with no relapses for the first 2 years and then only infection related ms problems more recently. I have recently stopped it to plan a pregnancy and after 4 months am now suffering a relapse so guess that proves it works! Not sure if I will get it again in the future due to funding issues my team in my area but I really hope so as seemed to work for me and so much easier than injections.
[quote=“elmo”]
Hi Anita
This is how Gilenya works. It traps T cells in your lymph glands so they can’t cause havoc in your immune system resulting in relapses. Lymphocytes are a type of white blood cell responsible for fighting off infection. Gilenya is supposed to lower them but in some poeple they fall very low. Mine are apparently very low and if I had been on the clinical trial, I would have been taken off the drug. Many neuros think this was over cautious so my neuro doesn’t want to take me off the drug while I feel well. I trust him to look after me and he says we will discuss this further in June (obviously if I am concerned in the meantime I can ring the clinic).
I have noticed that the glands in my neck are constantly slightly swollen but they are hyper sensitive every since I had glandular fever. When I had a cold recently they were very swollen and my neck was quite achy but at least the cold was just a cold and didn’t turn into anything nasty so my body is still capable of fighting back. I think the danger may be that I could pick up an infection and become very ill needing antibiotics etc however so far I haven’t. I have been scrupulous about hand washing etc as I work in a high school where viruses are always going round.
Tracey x
[/quote] Hi Tracey, Thanks for all of your advice and information. Good luck for June. Anita. X
[quote=“brenda28”]
Hi,
I have been on Gilenya for almost 5 years,so have lots to share,but don’t have the time just now.I should manage later on today to reply more fully.Most of my posts are about Gilenya,if you fancy looking back at them.
Have a look here:
Brenda x
[/quote] Hi Brenda, Thanks. I will check out your previous posts and the web site. Anita. X
[quote=“MummyLou”]
I was in the fingolimod trial having struggled with injection site issues on copaxone. I never experienced any side effects and was very well on it with no relapses for the first 2 years and then only infection related ms problems more recently. I have recently stopped it to plan a pregnancy and after 4 months am now suffering a relapse so guess that proves it works! Not sure if I will get it again in the future due to funding issues my team in my area but I really hope so as seemed to work for me and so much easier than injections.
[/quote] Hi, Thanks for your reply. I hope all goes well in the future for you. X
Hi
I’ve been on Gilenya for a year now and I’ve never had any side effects at all. My lymphs are depleted but this is how the drug works and is expected. I haven’t had any issues with infections. No relapses since starting and I don’t have to inject any more. All good.
JZ