Serene Forest

Monday, August 10, 2015

A New Drug For Periodic Paralysis? Helpful Or More Of The Same?

Hello All,

There is a big announcement in the world of Periodic Paralysis today!! A drug has been approved by the FDA as the first drug to treat Periodic Paralysis. It is Dichlorphenamide also known as Keveyis. It is a carbonic anhydrase inhibitors (a diuretic) and it is sulfa-based. It is not new to PP and has been used before but was pulled from the market while studies were done over a period of twenty-three years.

Until now a few other drugs have been used but they are all 'off-label' drugs. This means they were created for other conditions. They are forms of diuretics. They work for some people depending on the particular genetic mutation an individual has. They are not without side effects, both short term and long term. For some they can be very harmful, especially if one has an allergy or intolerance to sulfa-based drugs or the wrong genetic mutation.

This announcement is good for some lucky people and just "more of the same" for others of us who cannot tolerate the carbonic anhydrase inhibitors which are sulfa-based.

This drug,
Dichlorphenamide, needs to be used with great care, just as the off-label drugs.

It is nice to see research for treatments of Periodic Paralysis, but it would be nice to see research being done for those of us who cannot handle these drugs. It would be nice to see research outside of the proverbial box for Periodic Paralysis.

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