Originally Posted by
gilders
People and doctors have different opinions of what remission is.
My personal view is very similar to Drz's - symptoms under control and no meds or no new meds planned on being used.
But even if you achieve med-free remission, you're likely to have some long term, permanent effects. Some of this can be directly linked to a damaged organ, but there also seems to be things like fatigue that can't be pinpointed to anything other than "after effects" of Wegener's even when you've been in remission for a long time.
Fatigue is major issue for Weggies and was main article in the last Vasculitis Foundation Newsletter. I attribute my feelings of fatigue and lack of endurance to my damage from the Wegs to kidneys, lungs, neuropathy, etc and weakness caused by meds and maybe some to the stress of trying to manage two chronic illnesses (diabetes and Wegs). But it seems there is also some additional unclear, unknown or undiscovered reasons for why fatigue is such a big issue to many, perhaps most, people with Wegs or similar autoimmune disorders.
Yet there are the extreme examples of some Weggies doing impossible physical tasks that most healthy people cannot do, like climbing Everest, running the Idatirod, biking cross country etc. that are harder to explain given our tendency to often feel fatigued.
Last edited by drz; 08-11-2015 at 06:58 AM.
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