Mizamonie
10-07-2013, 03:23 AM
Hi all,
Just wondering if anyone knows of another whose primary symptom of Wegener's is pyoderma gangrenosum? For those of you who have not heard of PG, it is a disease of severe skin ulcerations. My husband has had one positive c-anca and then later nodules on his lungs. Methotrexate cleared up the nodules but didn't fully heal the skin. He is being admitted inpatient tomorrow again (4th time in 18 months), because his ulcerations are so severe.
No one biopsied the nodules when they presented because at the time we had no health insurance and it seems that without that biopsy no one wants to make the definitive diagnosis of Wegener's. A recent CAT scan showed continued sinusitis and often when he does his nasal rinses, large dark brown clots come out. I keep reading about Sed rates on other posts and am wondering if those numbers are a measure of Wegener's, or if there is another diagnostic measure when there are no other internal symptoms beyond joint pain.
I am dreading the process of him being hospitalized once more and seeing docs that can't seem to move him forward. P.s. No rheumatologist until Nov. 13th - a new one since no others want to touch his case with a 10 foot pole.
Just wondering if anyone knows of another whose primary symptom of Wegener's is pyoderma gangrenosum? For those of you who have not heard of PG, it is a disease of severe skin ulcerations. My husband has had one positive c-anca and then later nodules on his lungs. Methotrexate cleared up the nodules but didn't fully heal the skin. He is being admitted inpatient tomorrow again (4th time in 18 months), because his ulcerations are so severe.
No one biopsied the nodules when they presented because at the time we had no health insurance and it seems that without that biopsy no one wants to make the definitive diagnosis of Wegener's. A recent CAT scan showed continued sinusitis and often when he does his nasal rinses, large dark brown clots come out. I keep reading about Sed rates on other posts and am wondering if those numbers are a measure of Wegener's, or if there is another diagnostic measure when there are no other internal symptoms beyond joint pain.
I am dreading the process of him being hospitalized once more and seeing docs that can't seem to move him forward. P.s. No rheumatologist until Nov. 13th - a new one since no others want to touch his case with a 10 foot pole.