jonm 17/05/18
Last reply 1 week ago
Low white blood cells

Been a good while since ive been on here. Was on Rebif the last time i was here. Been on Gilenya for nearly 4 years now and its been great. The last 6 months however my white blood cell count has fallen off a cliff. Having blood tests every 2 weeks at the minute. Should i be worried? Do i need to do something different? Are they likely to change my meds?

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mmhhpp
1 week ago

Just to clarify @jonm , do you really mean white blood cells or lymphocites? what are the value for the white blood cells and the lymphocytes ?


jonm
1 week ago

Lymphocytes, that’s correct. Whenever I talk to my GP he always refers to white blood cells, I am aware that it is actually lymphocytes. Measuring 0.1 at the minute? No clue what the measurement should be or where the thresholds are?


mmhhpp
1 week ago

@jonm
I’ve been battling with that for the last nine years , I’ve been taking Fingolimod for the last four years every other day to avoid lymphopenia but even then it would go below 0.2 easily . Apparently being a woman with low body mass index makes this more probable.

Last year they saw new spot on the MRI scan and they thought it was PML but after a lumbar puncture it showed it was negative now I am trying to go into cladribine it has been A long battle . I stopped the medication in December last year and lymphocytes are going up slowly , Still not one and it is May

The problem with Fingolimod is that it will not stop secondary progressive MS although it is good at stopping relapses. I don’t think it is a risk if lymphocytes go 0.1 in fact some centres Let them go 0.1 and didn’t see any problem in my opinion it looks like an arbitrary number set by big Pharma. That risk of infections is not bigger I can find a date for you if you are interested . Doctors may be concerned about PML .

Like you in my case it got worse over time


jonm
1 week ago

Thanks for that, all just a bit weird why all of a sudden they’ve dropped when they’ve been done for ages. Spun me out a bit I have to say.


mmhhpp
1 week ago

@jonm you should ask the consultant different hospitals different protocols I guess
You need to know what their plan is


look
1 week ago

Hi, I have a printout from my Neuro of blood test results and next to my results it shows normal ranges for comparison. Lymphocyte normal range is 1.5 to 4.0 and wbc between 4.0 and 10.0. I hope that helps a bit. I’ve had 17 separate blood tests of everything since January as my ms drug was getting the blame for my “deranged liver enzymes” and low lymphocytes but it actually turned out to be totally something else (viral) and not ms drugs at all. Best wishes,
Loo K

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