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Gilenya For discussing the first oral disease modyfying drug, Gilenya.

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  #1  
Old 11-16-2011, 07:39 AM
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jifr jifr is offline
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Join Date: Jan 2007
Location: Ohio!
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Absolute lymphocycte count down to 164

I've been on GIlenay since 9/1/11. My Lymphocyte count has been dropping rapidly. (I guess the Gilenya is doing it's job).

I have been instructed to stop the Gilenya, get blood drawn in 12 days and then restart the Gilenya on day 14 (so I don't have to do the re-observation first dose). I'll get tested again after restarting the Gilenya.

Has anyone gone through this before? What were your before and after absolute lymph counts?

Also, did you experience any odd issues following stopping the Gilenya? I've noticed that my hands are swelling a little over the past few days.

Thanks for any input.

.jifr.
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  #2  
Old 11-17-2011, 08:57 PM
Just a small town girl Just a small town girl is offline
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My lymphocyte count also tanked a couple of times. The first time it dropped to 200 and my neuro took me off Gilenya for 10 days, tested me and then I restarted. I didn't notice any side effects or differences during the 10 days I was off Gilenya.

After the break my lymphocyte count was back up to 700. Two weeks later my count was back down to 300, they ran another test a week later and it was back up to 890.

I haven't had any issues with my lymphocyte count since. I hope that everything works out for you the way it did for me.
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Old 11-18-2011, 01:06 PM
mary143 mary143 is offline
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Received my first dose yesterday. I am very concerned with the platelet issue. After my 4th cycle of cam path mine got down to 77 and had to see hematologist and do monthly labs to monitor.

Its in the mid 200 and if it dips below 200 have to stop. Next lab in 3 weeks will get idea.
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Old 11-18-2011, 07:27 PM
Just a small town girl Just a small town girl is offline
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Were you on Campath for your MS? I know it's a bit off topic, but that drug looks pretty promising. The Gilenya seems to be working pretty well for me, but I've definitely got my eye on Campath if it doesn't work out. What was your experience like with it?
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Old 11-19-2011, 06:58 AM
mary143 mary143 is offline
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I did 3 years of novantrone took year off from any chemo Completed 4 years of cam path. For me personally did not feel it did much but meet others who loved it.

Started gilenya just because not many choices left. Can not do tysbria.
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