Last reply 3 months ago
Gilenya stopped :-(

I’m so gutted. Got a text from my MS nurse on Friday telling me to stop taking Gilenya immediately. My lymphocytes have been at 0.2 or below since before Xmas. Blood test on Weds last week showed them at 0.15. I’m so disappointed because although I’ve had a few weird symptoms, I’ve felt so much better in myself since starting Gilenya than I ever did on Tecfidera, and now I’ve got to venture into the unknown again and try something new. Anyone else moved from Gilenya because of super low lymphocyte levels? What did you move to? What are your experiences? Tell me sonething that will make me feel better!

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laurianne25
3 months ago

@niccis, I’m sorry you are being made to stop! I am new to MS just diagnosed in February and im not on treatment yet, but I know there are plenty others on here that have been through this and can give you good advice! I hope you can feel better soon.


stumbler
3 months ago

@niccis , use the Forum Search function (magnifying glass, top left) and search for “Gilenya lymphocyte”.

You’ll locate a few previous posts on this aspect of Gilenya. ๐Ÿ˜‰


dominics
3 months ago

@niccis All is not lost.

It sounds pretty crucial that when stopping Fingolimod there should be another therapy lined up. I am not trying to scare you, just to make you aware of the potential for rebound disease activity after c. 6 weeks. Definitely, something that should also be covered during the ‘stop it’ discussion.

https://sites.google.com/giovannoni.net/clinicspeak-dmt/dmts/fingolimod?authuser=0

https://www.pharmacytimes.com/news/fda-stopping-treatment-with-ms-drug-gilenya-carries-risk-of-severe-disease-worsening

Ocrelizumab, Cladribine, Natalizumab are some of the alternatives. Not knowing your specific case there seem to be many potential alternatives. Good luck.


niccis
3 months ago

Thanks @dominics. I did ask my nurse about the potential for a rebound relapse. She said my lymphocytes were so low that it shouldn’t be possible?! I’m off work tomorrow so plan on chasing them. Thank you.


zulfihan
3 months ago

I am on Gilenya since december, can i ask what kind of symptoms you have experienced and how long have you been on gilenya..? because of all these scary side effect i am not taking it on the weekends.. my own decision.. did not tell the dr who i will tell next week.
Thanks


stumbler
3 months ago

@dominics , do you agree with “low lymphocytes=no chance of rebound”? I’m not sure I do, but it’s stretching my knowledge. Any views?


dominics
3 months ago

@stumbler – you put me on the spot. I am neither neuro nor neuro researcher. But, I can and so read. Sometimes things are obvious by their absence. In the brief reading I have done there was a distinct absence of any mention of low-lymphocytes somehow reducing the risk of rebound.

The smart money would ask that exact question here: https://multiple-sclerosis-research.org/2019/05/may-q-a-2019/ because it is highly likely to be answered by a real expert.


stumbler
3 months ago

Fair comment, @dominics . I’ve raised a question as you suggest. I’ll post an update when I get an answer. ๐Ÿ˜‰


dominics
3 months ago

@stumbler – goodo ๐Ÿ™‚

I am acutely aware of such important matters and think it is crucial to get the correct answers.


arknat
3 months ago

@niccis, Imo, a lowered lymphocyte count would reduce the probability of rebound adverse effects but is not non existent. Will wait for an expert answer.


niccis
3 months ago

It does seem to make some sense – less lymphocytes swimming round the system = less chance of attack on immune system. But that’s my very crude understanding and I haven’t had any time this weekend to investigate it any further. It’s my day off tomorrow and I’ll be on the phone as soon as I’ve dropped my son at school! Thanks for all your help and interest.


niccis
3 months ago

@zulfihan I was on Gilenya for a year and previously on Tecfidera for 18 months before that. Strange symptoms included cramp in my toes on one side, sporadic lower back pain, sporadic toothache on one side, acute ear ache on one side, stabbing pain behind eye on the other side etc etc – all probably MS symptoms rather than Gilenya side effects. I dont think i suffered any side effects except the low lymphocyte count.


californiadreamin
3 months ago

As I understand it the risk of rebound comes from lymphocytes that have been trapped in your lymph nodes now being released. So even though your count might be low, thatโ€™s not where the concern for rebounds come from. I do not think the advice you received is correct. In addition your lymphocytes are comprised of T cells and B cells , etc and you canโ€™t tell from that count what you have.


stumbler
3 months ago

@dominics , @niccis et al, I posed the question:-

“If you were instructed to stop Gilenya for an exceedingly and consistently low lymphocyte count, would this low count negate the possibility of rebound activity?”

Looking at it, it is a slightly woolly question, which may account for the answer I got from MD :-

“Possibly”

So, the MS Nurse wasn’t categorical in their statement and there’s now been some interesting argument which suggests that this is, like all things MS, unpredictable!


niccis
3 months ago

@stumbler Thanks for trying!


dominics
3 months ago

@st7mbler – MD or Mouse Doctor is a research neuro who specialises in MS.

To get a possibly from him is a definite maybe, maybe not.

I guess the only thing you can do @niccis is to be super vigilant and plan for it. If it doesn’t happen then super news. If it does at all then forewarned is forearmed I guess.

All the best.

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