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Gilenya: low lymphocyte count
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by Jifr, Nov 10, 2011
Has anyone else on gilenya been told that your lymphocyte count is too low?  I got a call from my NP today telling me that my lymphocytes are not cooperating and they've dropped too low. I was at 196 last month and was at 164 from the test taken on tuesday.

I am to stop taking the Gilenya for two weeks and then get retested to see if they start to come back up again.

Has anyone had to go through this process yet?
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Member Comments (8)
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by wildcat2x, Nov 10, 2011
Hello Jifr.

I have not gone through this, as all my WBC tests have come back normal. although on the Gilenya facebook page there have been a few members that have had that problem and went off of Gilenya for 2 weeks then back on and didn't have the problem the second time around. Good luck.

Wildcat2x
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by Guitar_grrrlBlank, Nov 10, 2011
I know it is one of those things to watch out for.  Wildcat has a similar experience to others I have met who are on Gilenya.
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by Sarahsmom46, Nov 11, 2011
They did the right thing by taking you off the drug in order to get your numbers back up.   Are you sure this is the WBC number or the absolute lymphocyte number?  The reason I ask is because one of the things our doctors are told to look out for in the blood work is if the lymphocyte count ges below .2 then we must be taken off it for a few weeks or a month to get the numbers back up then retest to see what to do next.  As was already stated, most of us will have an increase in the counts and then we can go back on the drug.  Be cautious at this time though and report any sign of illness since your counts are very low you may be a bit more suseptable to picking something up.

I have been on Gilenya since last February.  I had a few side effects at the beginning, but they resolved. At this time my WBC and paticularly my lymphocyte counts are very low too.  Fortunately, my lymphocyte count is staying just above .2 so I am not being taken off it at this time.  We have been watching my blood counts monthly since I've been on it and my lymphs are around .3 each time.  This seems to be my baseline and is holding steady.  It would be a good idea for you to also keep track o your lab results as well.  Get an actual copy of it each time they do blood work on you to keep in your records. It is helpful in case you are having blood work for something else and with a different doctor so they don't panic when they see your low nmbers.  You will be able to easily explain that this is being caused by the Gilenya and is normal based on how the drug works.  

I hope this was helpful and also hope that you'll be back on it in a few weeks.  

-Julie

P.S.  Someone mentioned the Facebok Gilenya group.  I am a member of this group too and it is really a nice and helpful group of people.  You might want to check it out.  Just put in the search box "gilenya support group" and it should pop up.  :)
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by Jifr, Nov 14, 2011
Thank you for all for your input!  I SO appreciate it right now.  

Julie - it was the absolute lymphocyte count she was worried about.  It's at 164.  It was below 200 last month too and she said they're not cooperating.

So I'm off the drug for 14 days and I'll have a bunch of blood tests in the interim.

I'm definitely going to log on and check out the Gilenya support page on facebook.

Thank you for the tip!
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by Mckstacy, Aug 07, 2012
Got a call from my neuro today re: latest BW.  Have been on Gilenya since Nov. of 2010 with no adverse side affects & NO DZ PROGRESSSION!!!
I also have SPMS, which Novartis is supposedly working in clinical trials for this progressive stage of MS.

ANYWAY, most BW counts were okay - except the 'Lymphs PCT" went from 29.4 in 11/10 down to 11.7 last wk (08/2012)... and
HEMAGLOBIN 14.7 up to 15.3.
WBC 10.9 down to 7.4.
RBC up from 4.48 to 4.62
MCV 97.3 up to 100.
MCH 32.9 to 33.1.
Monos PCT went up from 8.1 to 9.4.
Neutros PCT was 58.6 and UP at 78.1.
EOS PCT 3.5 down to .5.
LYMPHS ABS 2.4 down to .9.
MONOS ABS remained the same at .7.
NEUTROS ABS 4.7 up to 5.8.
MPV 7.6 up to 8.3.

The P.A. at neuro's office said I should go to my PCP and get checked for either POLYCYTHEMIA.... or NEOPLASM!!
Please let me know if you've experienced anything even remotely similar!!!

Nothing on the Gilenya site or multiple searches via Internet about this!  Thank you for enduring thru all this "lab lingo"!!!
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by slloweBlank, Aug 07, 2012
Hi Mcstacy!

Woo hoo! Congrats on your 0 progression :) Wonderful news! You are only 1 of a handful of Gilenya users on our forum. Maybe they will see this and lend some useful info!

Wanted you to know your post was seen - Haven't seen Jifr in a bit - maybe she'll see this and pop back on too!
-shell
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by tnastrockoz, Feb 13, 2014
Thank you for your input. Puts my mind at ease.  I too am a Gilenya girl. My WBC are pretty low and lymphocyte count was 186... Being scheduled for more blood tests. But hematoligist thinks it's the MS med doing this to me.

On another note, I've been having abdominal pain since November. X-rays, ultrasounds, cat scans, scope to check for an ulcer, Hida screen to check gall blatter.... Having every possible test only be negative. my PCP took me off all of my medicines but my MS and Cymbalta...it's helping, but I'm still getting the indigestion pain... Anyone else having these issues???
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by debragm7, Jul 25, 2014
Mcstacy
What is SPMS?  I have been on G for almost two years.  Do you know what is the danger of these low counts other than being more susceptible to disease, ie.colds, ect.? Lypo...(.2) and white count....(3.4)

Debbie