@melissag

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melissag

Gilenya low lymphocytes

Hi everyone, I saw my neurologist yesterdayand lets just say it was a frustrating experience, I won't go into the details here, I've already written a big blog post ranting about it all, but one of the things that came out when I was speaking to the nurse after my appointment (the Dr didn't even notice) was that my last blood test from a couple months ago showed my lymphocyte count was dangerously low. So low that they wanted me to stop taking the Gilenya (at least until it raises back up). Good thing I met with the nurse, or else who knows how long it would've taken anyone to notice my results! Anyways, has this happened to anyone else? And if so, did you start back on Gilenya again after the levels evened out? I met with the nurse initially to discuss other med options, and I've been offered tecfidera or Aubagio if I choose to change... Just a bit confused at the moment! And a little scared to not be taking anything for the first time in 2 years...

Stumbler

@Stumbler

Have a read of the news article dated 05/01/15 on this website :- http://www.ms-uk.org/gilenya

melissag

@melissag

That's interesting @mbrsinc What did your neuro say about that, or did you not tell them? I actually brought that up to mine and he of course would not even discuss it, just saying there is no evidence of that working.

Stumbler

@Stumbler

Your Neuro should try visiting this blog from Bart's Hospital in London, then he would be more up to date :- http://multiple-sclerosis-research.blogspot.com/

Caterpillar

@Caterpillar

@melissa.g and @stumbler I am on Gilenya, have low BMI, and yes low lymphocytes are a problem. Melissa did not say exactly how low her counts got, I guess lymphocyte count was under 0,2 - then Novartis recommends pausing the medication until the counts get better. My lyphocyte count was 0,35 2 weeks after starting Gilenya, it is still abnormal but has been hovering around 0,45 for the past 6 months. I asked about reducing my weekly dose of Gilenya ( to f.ex. 6 x a week), but was told to stick to the doses with known benefit ( that is 1 capsule 0,5 mg daily). Do you know your lymphoctye values @melissa.g ?

melissag

@melissag

@stumbler it would be nice if he read my test results too, lol! @caterpillar I believe they said mine was just under a 0.3, and that they wanted me to stop until it came back up to a 1... Who knows how long that will take!

Caterpillar

@Caterpillar

@melissa.g How long have you been on Gilenya? Our MS nurse claims lymphocytes "tend to get better" with time. ( My values are better than they were, that's true, though still far from the normal range. )

anettauk

@anettauk

I've been on Copaxone for almost 7 years and thinking about switching to every other day injection. I'd like to hear from anyone who has done so.

JasFromTas

@JasFromTas

Finding the mixed experiences on here rather interesting... I have had a Lymphocyte count of 0.2-0.4 for about a year on Gilenya, and both my neurologists (both MS specialists) and GP have never considered stopping it. In fact, one neurologist was positively gleeful when my level was 0.2 "If the little blighters aren't in your blood, they're not going to be able to eat your brain" --- Hmmm...Thanks! (I think) And I certainly do not have a low BMI that might be a contributing risk factor!

Caterpillar

@Caterpillar

@JasFromTas in a way, what they say is true... but it comes with a higher risk of infections. European Medicines Agency recommends stopping Gilenya at lymphs under 0,2: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/002202/WC500104528.pdf But then again some neuros do not feel comfortable with values under 0,5 ( which is the general caution threshold). I am not 100% comfortable with that myself, especially in the long run - but I have chosen to "grin and bear it" for now, at least until my next MRI.

melissag

@melissag

@jasfromtas @caterpillar It really is interesting how every doctor has a different idea about the matter. The MS nurse told me that all of the neuro's at the clinic except one has patients stop when it is that low.. To be honest I'm glad to stop because im really hoping I will start to feel a little less run down and horrible.. At the same time it's a bit scary to not be on anything, they do a good job of scaring me off of doing that! But I'm just thinking of it as a meds vacation!

US-Emma

@US-Emma

The concern with low lymphocyte counts is PML- a brain infection that is lethal in about 30% of cases and cause irrepressible brain damage in the rest. PML is most commonly associated with Tysabri but has been found infrequently in patients taking both Gilenya and Tec who had low lymphocyte counts. Most MS treatments leave you "chronically suppressed" as @jasfromtas describes. This opens you up to the PML risk. This is another reason I favor the monoclonal antibodies like Lemtrada, Rituximab or a different formulation of Ritux out later this year. With these treatments you are only suppressed about 3 months in year 1 and 2 months in year 2 and snot need the medication after that for effective treatment for 5-10 years. So to compare: Conventional, older MS meds leave you suppressed & prone to PML for a long time over 10 years of therapy, possibly everyday once reaching a suppressed state. Monoclonal Antibodies leave you suppressed for 5 months out of this 10 years, lowering your PML risk.

Caterpillar

@Caterpillar

Hi @US-Emma :-) As rituximab is not registered as treatment for MS ( and probably never will be as Roche would not earn money on it - it will probably come as ocrelizumab for MS), I don't know how it is administered. If it is repeated dosage( as in RA - every 6 months), then it definitely raises infection risk. As for PML... it is a danger of immunosuppression in general, and rituximab is no exception. There have been cases of PML on rituximab ( I clearly remember a warning letter from Roche a few years ago). But rituximab is nowhere near Tysabri that carries a much higher risk of PML.

US-Emma

@US-Emma

@Caterpillar Here is some more information on Ocrelizumab- it is IV (I thought part of the change from Ritux was to go sub-cutaneous). They review some of the side effects- interestingly the high dose arm had more side effects than the low dose. http://www.medscape.com/viewarticle/781671 I am sure you will get it in the UK- final trial results are due in 2015 so approval should soon follow. No PML in any arm of this research but yes- Ritux has had PML issues- especially when combined with other immune suppressants (as in RA- methotrexate is used concurrently). Ritux is being using in the US now for MS. Interestingly this study tested a defined schedule of dosing every 6 months. I have heard that- but also doing to CD19/CD20 % of >1. The latter makes more sense to me as it would be patient specific. This study was published in 2013 so it is a bit old.

Tabbycat

@Tabbycat

First time I was tested after starting gylenia they said I might need to stop, as the count was too low, but after a couple of weeks it crept back up , has stayed up and the drug suits me very well, so don't give up too soon if it seems to be helping.

mcgibaqt

@mcgibaqt

Hi! Do any of you have an update on what happened to you in the end? I’ve just had results of blood test at 0.3 and the GP was concerned and going to contact Neuros. I’ve been on fingolimod for 3 years.

Stumbler

@Stumbler

@mcgibaqt , GPs do get worried to see lymphocytes at such a low level. The Neuro should reassure them and just ask to keep an eye in case it falls lower.

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.