Thursday, August 13, 2015

Big News for HKPP Patients: FDA Approves dichlorphenamide (KEVEYIS) for treatment of Primary Periodic Paralyses

I am so behind on everything, I am just now getting to this news:

Earlier this week, the FDA approved carbonic anhydrase inhibitor dichlorphenamide (KEVEYIS) for the treatment of all forms of Primary (Familial) Periodic Paralysis.

Thanks to the Muscular Dystrophy Association​, other Periodic Paralysis researchers, and study participants who made this possible.

Drug website is here: http://www.keveyis.com/

Drug info is here: http://sacdzn.com/clients/cambridge/taro/FINAL%20Approved%20Keveyis%20PI_%208.7.15.pdf

MDA Press Release is here: https://www.mda.org/media/press-releases/fda-approves-drug-primary-hyperkalemic-and-hypokalemic-periodic-paralysis

As for me, I am already on a different carbonic anhydrase inhibitor, acetazolamide (DIAMOX), but I will be discussing Keveyis with my doctors in a few weeks. My hope is that insurance will cover it and it will give me better function with fewer side effects.

I'll keep you posted.

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