ok 3pm and sill in pj's on a cery go slow day
ok 3pm and sill in pj's on a cery go slow day
just had three hours sleep sa not so bad .wait and see what tommorrow brings
well things just about the same , spoke to gp today as joint pain set in again especially my hands for some reason !!!!!
definately not going down to 7/2.5 doing to see what happens over the weekend
have had j pains when dropped before but not for this long
DEEx
Does any one know about any research on percentage of people with Wegener's disease that are able to actually get off prednisone totally? Since this would be a very individual thing it would seem the people with a milder form (no kidney or lung involvement) would be more likely to do so. It seems there are number of people here that reach a certain limit on how far they can go down on their prednisone without having problems or symptoms that require resumption of prednisone. It seems that getting off prednisone altogether is a desirable goal, but one that may not be attainable to many of of us.
I don't know any statistics about it, but Dr Seo told me the Weggies who have the most difficulty getting below 10mg or off pred are those with bad sinus involvement. Like you, I would have thought milder disease would be easier, but it's not.
I don't know any statistics either, but the docs at the Symposium certainly made it seem as though that was the 'normal' goal which would suggest that a majority of patients have a shot at it (presuming they are being treated with the correct immuno at the correct dosage.
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