Yeap, that can be a problem. I don't know how many people have said "you look great", uh, yeah, but I feel like crap....The thing about us Weggies is that we don't really look that sick.
My family has been relatively supportive -- one younger brother has been trying to argue that it's not rare, but I'm not sure why that would be important and another younger brother and his wife believe the disease is no more serious than a common cold. Oh well.... On my tombstone, I think I'll put a quote "I told you I was sick!"
As for limited, my doc doesn't like the term either. He prefers "localized". The URL below is one of the better, updated articles I have read on GPA.....
Medscape: Medscape Access
Here is the portion on "limited".....
This designation [limited' is reserved for cases that fulfill the modified American College of Rheumatology (ACR) criteria for the classification of WG (see below) in the absence of disease features that pose immediate threats to either a critical individual organ or to the patient's life.
Specifically, this means the following:
1.The patient has no red blood cell (RBC) casts in the urine.
2.If hematuria is present (but no RBC casts), the serum creatinine level is 1.4 mg/dL or less, and there must be no evidence of a rise in the creatinine level of more than 25% above the patient’s baseline level.
3.Pulmonary involvement must be circumscribed, such that the room air PO2 level is greater than 70 mm Hg or the room air O2 saturation by pulse oximetry is greater than 92%. Pulmonary hemorrhage may be treated as limited disease provided there is no evidence of progression of process. In the absence of data on progression, pulmonary hemorrhage may be treated as severe disease at the discretion of the physician.
4.No disease may exist within any other critical organ (eg, the GI tract, eyes, CNS) that, without the immediate institution of maximal therapy (ie, pulse methylprednisolone or daily oral cyclophosphamide), threatens the function of that organ and/or the patient’s life.
Bookmarks