Originally Posted by
Pilot Muscle
Finally got a hold of the FAA medical department in OKC...They said Eculizumab (soloris) is an approved medication by FAA, as long as I'm consistent with providing documentation about treatment, getting quarterly lab reports, etc. and basically being proactive with my health records....I feel like the weight of the world is off my shoulders!
Great!
But go to Hopkins anyway.
First, because you will still need a work up that's going to convince the FAA that they should waiver you, second, because what you have IS a relatively rare condition that is potentially life threatening if not treated properly.
I ain't no hematologist or nephrologist but damage from free hemoglobin leaking into the kidneys tends to be cumulative and it is definitely better to avoid kidney damage then to deal with it after it happens. Also, you definitely want to start on Eculizumab BEFORE you get a serious venous thrombosis, because that will be a whole nuther work up and waiver if you do.
Unless your current physician has managed over five previous patients with pnh, go to a center like Hopkins that has. And when you do, TELL the guys at Hopkins about your aviation plans and have them tell you about your likely prognosis and treatment options in the pipeline.