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Gilenya. Stopping and Starting
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Gilenya. Stopping and Starting

Hi - I know there aren't a lot of Gilenya users here but I wanted to see if anyone has struggled with getting their absolutely lymphocyte count to stay above .200.

My counts dropped to .162. I stopped Gilenya for 13 days and got tested again.  I was back up to .310 in that time.  I started the Gilenya again and 2 weeks later I'm at .210.  In all likelihood, I'll be back under .2 in a matter of days.  I get tested again in 13 days.

I asked my NP what they would do - and she said they would probably make me come off of the Gilenya again....and we'd go through the process all over again.  I asked if they would go to every other day dosing but she said that that hasn't been tested.  :-/

I wanted to see if anyone else has gone through this and if so, when your levels started staying about .200.

Thanks!

Jen

Tags: absolute lymphocyte count, gilenya
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572651 tn?1333939396
Jen, I hope someone here can share their experiences with Gilenya with you.  I have no personal knowledge but your drops in counts sounds like a serious problem to consider with your doctor.  

good luck,
Lulu
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