Daughter age 26 with retroperitoneal fibrosis since 13

My daughter was diagnosed at age 13 and has been on high doses of prednisone ever since. Currently she is also on Enbrel. Doctors have tried cyclosporin, tamoxifen, immuran, cellcept, methotrexate and have not been able to decrease prednisone. Currently she is having extreme pain in renal area and unable to control the pain. Renal scan shows ureter is not blocked. She has also had masses in lacrimal glands, right axilary and salivary glands. She has undergone 2 biopsies that have not helped determine other traetment options. Doctors do not want to do surgery at this point. Has anyone had any success with any other treatments or have similar history?


Sorry to hear the trials that your daughter (and you) have been through.

Where are you? where are the doctors? are they experienced with RF? What was the duration/strength of each of the meds? did any help at all? what is being done for the pain?

Write me at pmorgan7@sbcglobal.net




My gosh, 13 is awfully young to be going through this crap. But who knows when and where it starts? It just seems like it is everywhere in the body.


Good luck to you and her!


--- On Tue, 4/29/08, crest wrote:

From: crest
Subject: [rpf] Daughter age 26 with retroperitoneal fibrosis since 13
To: marlahornsby@yahoo.com
Date: Tuesday, April 29, 2008, 5:16 PM