DEAR DR. GOTT: I was diagnosed with retroperitoneal fibrosis (Ormond’s disease) following a CT scan. My family doctor has never had a patient with this condition in all of his 35 years. Can and will you comment, please?
DEAR READER: I can believe your doctor hasn’t seen a patient with the condition. Neither have I, but then I’ve only been practicing for 40 years!
This rare disorder may be due to an unknown cause or secondary to a number of causes, including radiation therapy, cancer, infections and drugs, or this may have been triggered by the long-term use of medications such as methysergide, beta-blockers, bromocriptine, methyldopa and some analgesias. The disease occurs when extra fibrous tissue blocks the tubes that carry urine from the kidneys to the bladder, preventing the urine from flowing normally.
There are many ways this disease can present, such as with swelling and discoloration of one leg and pain in the abdomen that can increase in intensity over time. As the disease progresses and without treatment, urine output may decrease or cease altogether, and there may be nausea, vomiting and internal hemorrhage.
Treatment for Ormond’s is typically begun with corticosteroids or tamoxifen, a drug used to treat breast cancer or to reduce the risk of breast cancer in high-risk patients. Should these treatments be ineffective, surgery and drain tubes may be required. The prognosis is dependent on the extent of the disease, the amount of damage to the kidneys (which may be minor and temporary) and the cause (if it is secondary).
Involve the care of your primary-care physician, a urologist and perhaps a nephrologist with knowledge of this unusual disorder.
Readers who would like related information should send for my Health Report “Kidney Disorders” by sending a self-addressed stamped No. 10 envelope and a $2 check or money order made payable to Newsletter and mailed to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website’s direct link at www.AskDrGottMd.com/order_form.pdf.
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