Month one of the immunosuppression drug trial is now behind us! After a rocky month that included a couple of falls and a rapid decline in leg strength (I'm currently using a wheelchair for my own protection :-)), Amy and I attended my first checkpoint with the University of Utah team on Monday the 28th. My neurologist agreed that the unusually rapid decline most likely results from the drug regimen itself. What is unclear is which of the five medications is having the undesired effect.We do have a leading candidate thanks to our discovery that one key drug, known to have some neurotoxicity, is concentrating in my blood in a way it was not expected to. Though we have already begun to talk about whether and how to bring the trial to a close, I'm considering it a silver lining that the drug trial IS having an effect!… this is something that was not a given at the outset of the trial... Because there is no known cause for ALS, including no known way to speed up or slow down disease progression, the fact that my symptoms have progressed dramatically is actually incredibly exciting AND very scary.
We hope to provide further updates soon as we work through the adjustment and or close of the trial. Sincere thanks to all of you for your ongoing support.
All our love,
Seth and Amy