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First Death from Gilenya Reported

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Old 12-15-2011, 04:59 PM #1
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Default First Death from Gilenya Reported
NMSS reported on 12/12 that a person died after receiving a first dose of the oral DMD Gilenya...the FDA has been notified.

I like to wait til the kinks are out of new car models and new meds before I buy...

Prayers to the family of the person who died...
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Old 12-15-2011, 05:00 PM #2
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Well, that's scary. What was the official cause of death, the med? or something underlying that the med might have affected?

edited to add:

Apparently it was somehow cardiac in nature according to the story in the link below

http://www.bloomberg.com/news/2011-1...g-gilenya.html
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Old 12-15-2011, 05:06 PM #3
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I heard about this. It is so sad and IMuneducatedO, it seems that Gilenya was probably the cause of it as it happened within 24 hours of her 1st dose.

Saying some prayers for her family!
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Old 12-15-2011, 07:08 PM #4
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The family is in my thoughts and prayers.
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Old 12-15-2011, 07:49 PM #5
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How perfectly awfull.
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Old 12-15-2011, 07:55 PM #6
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Terribly sad. Keeping her family in my prayers.
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Old 12-16-2011, 09:43 AM #7
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Quote:
Originally Posted by Debbie D View Post
NMSS reported on 12/12 that a person died after receiving a first dose of the oral DMD Gilenya...the FDA has been notified.

I like to wait til the kinks are out of new car models and new meds before I buy...

Prayers to the family of the person who died...
I had read that there was concern over the possible dangers of Gilenya but to be fatal so quickly after taking the first dose!! Hmmm.

Harry
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Old 12-16-2011, 10:14 AM #8
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Quote:
Originally Posted by Harry Z View Post
I had read that there was concern over the possible dangers of Gilenya but to be fatal so quickly after taking the first dose!! Hmmm.

Harry
Hadn't seen that report. I am on Gilenya now and working with HR, Novartis and ins. to get on it regulary. Co pay is over a grand a month and even with Novartis co-pay over $200 a month. I'm thinking of trying LDN. I refuse to go back to injections. I'll have to search online and check with drug reps. I know to see if I can get any inside info. Yeah it does make you go Hmmm.
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Old 12-17-2011, 10:17 AM #9
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When I first asked my doc about the drug, he was very unimpressed with it and urged me to continue with the shots. He thought the drug a bit dangerous. HMMMM
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Old 12-19-2011, 09:39 PM #10
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When I first asked my doc about the drug, he was very unimpressed with it and urged me to continue with the shots. He thought the drug a bit dangerous. HMMMM
That's the issue with these medications. We all know we're playing guinea pig.

I'm glad, karilann, that the shots are working for you, and your doctor gave his honest opinion about the medication (which I haven't looked into, but I imagine carries a heavier price tag than the DMDs).
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