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.