Tony,
I hope things improve and Maria feels better. It sounds very frightening!
I know you've probably read everything on the internet but I found this at
http://www.unckidneycenter.org/kidneyhealthlibrary/antigbm.htmlfor what it's worth:
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Once the diagnosis is confirmed (with the detection of the antibodies in serum and biopsy proven evidence of disease), there are essentially three components to treatment.
REMOVAL OF ANTI-GBM ANTIBODY FROM CIRCULATION BY PLASMAPHERESIS
Plasmapheresis is a procedure that takes the patient’s blood out of the body in small volumes, removes the antibody carrying component, and then the remainder of the blood is returned to the patient. Sometimes a fluid replacement is given back to the patient to replace the component that has been removed.
The number of plasmapharesis treatments can be quite variable depending on patient response. In general, most patients receive between 5-14 treatments – either daily or at some presecribed spacing over 14 to 21 days.
PREVENTION OF FURTHER ANTIBODY PRODUCTION BY IMMUNOSUPPRESSION
Most patients are given “pulse” large dose methylprednisolone by intravenous infusion each day for 3 days. This is a steroid that is quick acting and is used to quickly alter the immune system function and therefore decrease the production of new antibody. This is then followed by daily oral steroid therapy that may go for as long as 3 months (more or less based on disease response to therapy). Cyclophosphamide (Cytoxan®) is the other agent that is most often used with steroid therapy to suppress the production of Anti-GBM antibodies. This can be given orally or by intravenous infusion, but is in general given intravenously in single monthly dose.
AVOIDING OR PREVENTING FUTURE EXPOSURES
Avoiding potential chemical exposures/inhalations that may have caused the disease is important. Immunizations to prevent lung infections may also be useful.
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Please give her our best wishes and let us know how you're doing.