posted on Sep, 5 2008 @ 03:59 PM
Sorry I have not been back but work has been busy and there has been no new news. It looks like the have finally figured it out. Most likely
Wegener's granulomatosis is the diaganosis. Almost 2 weeks in the hospital to figure it out and it is a rare one. Our hospital is a top rated one but
he is going to be transfered to a teaching/level1 trauma center at the university. He is supposed to undergo 3-6 month of agressive treatment and then
taper off. The total treatment time may be 2 years. Here is some background I have dug up on it.
"The incidence is 10 cases per million per year. 90% of the patients are white. While it mainly occurs in the middle-aged, it has been reported in
much younger and older patients.
25 to 40% of patients suffer from flare-ups, but a majority respond well to treatment. Anatomical problems (sinusitis, tracheal stenosis) may require
surgery in a small proportion. Relapses can be long and troublesome. Long-term complications are very common (86%): mainly chronic renal failure,
hearing loss and deafness
Before steroid treatment became available, mortality within one year was over 90%, with average survival being 5 months. Steroids prolonged average
survival to 8 months. The introduction of cyclophosphamide (CYC) in the 1970s was a major breakthrough.
Initial treatment is generally with corticosteroids and oral cyclophosphamide (CYC), 1 mg/kg/day and 2 mg/kg/day respectively. Occasionally CYC is
given in monthly intravenous (IV) doses. Monitoring of the white blood count is essential during CYC therapy. Once remission is attained (normally 3
to 6 months), treatment is frequently changed to azathioprine or methotrexate, which are less toxic drugs. Total duration of therapy should be at
least 1 year, or longer in high risk patients. Corticosteroids are tapered to a low maintenance dose, 5-10 mg/day. Plasmapheresis may be beneficial in
severe disease or pulmonary hemorrhage. Experience with other treatment agents is very limited."