After five months in hospitals and rehab facilities I made it home. Labs are finally good enough along with no obvious clinical symptoms so rheumatologist is beginning taper on prednisone with plans to get me off Cytoxan to something less toxic by end of year if I can handle taper of Prednisone. I am down to 22.5 mg daily now and labs have been cut to every two weeks. The plan is keep cutting prednisone slowly to see how low I can go. I was told I will most likely be on low dosage of prednisone for long time since i started with 1000 mg Solmedrol in April. A switch to somethig less toxic will be considered once Prednisone is under 10 in lab and clinical picture still look good.
It is nice being home and I enjoy sitting outside, going out to eat at various restaurants, watching fall colors, feeding the birds in back yard. I was disappointed that some of my more grandiose dreams of going traveling, fishing etc have to wait since a 50 foot walk seems to reach my endurance limits but I think my strength is slowly increasing, so maybe next year.
Only concern so far is some pain injoints and foot seems to be returning as Prednisone is reduced. could this be Wegener's disease? Podiatrist doesn't know. Rheumatologist hopes it is temporary thing.
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