@NicciS

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NicciS

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!

laurianne25

@laurianne25

@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

@Stumbler

@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. 😉

DominicS

@DominicS

@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

@NicciS

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.

Stumbler

@Stumbler

@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

@DominicS

@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

@Stumbler

Fair comment, @dominics . I've raised a question as you suggest. I'll post an update when I get an answer. 😉

DominicS

@DominicS

@stumbler - goodo :) I am acutely aware of such important matters and think it is crucial to get the correct answers.

arknat

@arknat

@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

@NicciS

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

@NicciS

@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

@californiadreamin

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, that’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 can’t tell from that count what you have.

Stumbler

@Stumbler

@dominics , @niccis et al, I posed the question:- <p style="padding-left: 30px;">"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?"</p> Looking at it, it is a slightly woolly question, which may account for the answer I got from MD :- <p style="padding-left: 30px;">"Possibly"</p> 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

@NicciS

@stumbler Thanks for trying!

DominicS

@DominicS

@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.

Karmen

@Karmen

I was told my lymphocyte count dropped to .2 on Friday. My Neuro told me she wants me working at home for the next 2 months and to retest my counts again in 2 months. I have been on Gilenya for 10 years and have not relapsed in that time. Previous therapies were Copaxone for 3 years, and I continued to relapse at least 4 times per year. I was on Tysabri for four months before developing antibodies against it and having breathing problems along with rashes. Gilenya has worked fantastic for 10 years. Six weeks ago I developed shingles and I am still trying to fight it off. My neuro is concerned with me having such a low lymphocytes level from the Gilenya that I am having difficulty fighting off other infections. She has altered my dosage on the Gilenya so that I take A normal dosage on day one and day two and take no dosage on day three. I will then take a normal dosage on day four and day five and take no dosage on day six. I will continue this process for the next two months. The hope is that my lymphocytes will rise to at least .5 at that time and I can return to work and go on about my life as I typically do. If my count does not increase, she will then remove me from the drug for a while and then either place me back on Gilenya or another therapy. I really hope this two month deal works, because my life has been pretty normal for the 10 years I have been on this medication.