Joined
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4 Posts
Hi,
I found this site while trying find help for my discoid lupus. I was diagnosed 15 years ago. My face and ears are covered with active lesions and scars. I am allergic to many of the medications that I have tried. Most recently I have been taking Dapsone (5 years). It kept me a little under control but NEVER clear. Now I can no longer take it because it was causing problems with hemoglobin carrying oxygen to tissues. I can't tell you how many specialist I have seen and end up with no solutions. As of this week my dermatologist decided he should step back and let the rheumatologist take over my case.
Very nice! The rheumatologist doesn't feel that she can treat me because I have DISCOID lupus. Third time in 15 years this has happened. Now I have no medication and no doctor that wants to treat me.
As my "name" indicates I am HOPELESS! Anyone have any ideas on how to find a doctor that isn't afraid of difficult cases and will stay with me until we find something to help my condition? I live on The Outer Banks of NC which is at about 2 hours from the nearest "CITY"
I am seriously thinking about acupuncture, but don't know much about it or if anyone has ever had success with it for treating discoid lupus.
I am open to just about anything at this point.
I found this site while trying find help for my discoid lupus. I was diagnosed 15 years ago. My face and ears are covered with active lesions and scars. I am allergic to many of the medications that I have tried. Most recently I have been taking Dapsone (5 years). It kept me a little under control but NEVER clear. Now I can no longer take it because it was causing problems with hemoglobin carrying oxygen to tissues. I can't tell you how many specialist I have seen and end up with no solutions. As of this week my dermatologist decided he should step back and let the rheumatologist take over my case.
As my "name" indicates I am HOPELESS! Anyone have any ideas on how to find a doctor that isn't afraid of difficult cases and will stay with me until we find something to help my condition? I live on The Outer Banks of NC which is at about 2 hours from the nearest "CITY"
I am seriously thinking about acupuncture, but don't know much about it or if anyone has ever had success with it for treating discoid lupus.
I am open to just about anything at this point.