I spoke with Taro's Health & Safety department concerning the HKPP episode(s) that occurred on Keveyis. They asked questions and recorded my answers to send to the FDA. Unless anything changes, my use of the drug is permanently discontinued and this will conclude my documentation on it.
I have resumed acetazolamide (DIAMOX) with mixed results, as my body is acting like it had never taken it before, so it is having to adjust to the initial side effects all over again. My PRN fast-acting potassium bicarbonate (EFFER-K) has been increased during this time and is making a difference.
I have other things to share. Talk to you soon.