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...

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

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!

The family is in my thoughts and prayers. :hug::hug:

How perfectly awfull.:(

Terribly sad. :( Keeping her family in my prayers.

It is very sad.

Thanks for the link Erin. It appears to be too early to tell what happened butthe article reported she was monitored for 6 hours after the dose:

"Whether Gilenya played a role in the patient’s death can’t be excluded or confirmed, Eric Althoff, a spokesman for the Basel, Switzerland-based drugmaker, said today in an e-mailed statement. The death is the first reported within 24 hours of the first Gilenya dose in more than 28,000 patients who have taken the drug, Althoff said."

Sad that it happened so close to Christmas. (or anytime actually)

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.:confused:

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).