Talk:Retroperitoneal fibrosis
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How
[edit]How was I supposed to know that the Lancet were going to publish a seminar on this 2 days after its creation? I'll update the page as necessary. JFW | T@lk 00:08, 25 January 2006 (UTC)
Adding sections to Retroperitoneal Fibrosis (RF sometimes referred to as IRPF)
[edit]1st suggested addition: There are a few online support groups for those with Retroperitoneal Fibrosis and caregivers https://groups.io/g/RetroperitonealFibrosis with about 300 members; has extensive collection of articles, papers, videos, links. There are archives of messages posted since 2001.— Preceding unsigned comment added by 98.23.50.223 (talk) 07:17, 8 March 2012 (UTC)
Add external link to http://retroperitonealfibrosis.com/
2nd suggested addition: What's next for the patient? "Proper" care for a patient with Retroperitoneal Fibrosis has not been proven by published trial results. (There has only been one randomized, double blind study, to compare prednisone vs tamoxifen. That study showed tamoxifen to be less effective than prednisone at reducing the RF mass.) However, there are a few standard protocols used by most practitioners with experience in the treatment.
Retroperitoneal Fibrosis is an extremely rare disease and most doctors never see an actual patient. Therefore it is up to the RF patient and/or their caregivers to make sure the proper care is given so as to minimize damage to kidney function. Expert RF aware centers are Guys in London, Mayo in USA.
Possible treatments: Will be up to your Dr to explain. Steroids, imuran, cellcept, or rituximab infusion - which seems to work best on IgG4+RF - and/or surgery (stents are considered surgery) are options. Usual treatment is preds at high dose (average is 60 mg/day) for about three months followed by slowly weaning and gradually increasing one of the three drugs mentioned above. These meds are used to reduce the RF mass from around the aorta and/or ureters.
If ureterolysis surgery is done, a complete/entire omental wrapping of the ureter is used to protect against Retroperitoneal fibrotic tissue re-growing & again attaching & encasing ureters (& other organs/structures) is important,particularly where less than a full wrap was undertaken. If there is not adequate omentum be aware of alternate "wrap material" eg. perinephric fat or other fat from within the abdomen.
If treatment doesn't work: Ask your Dr to check for IgG4+RF which may require an surgical biopsy (needle biopsy usually does not capture sufficient tissue for biopsy) if blood test for IgG4 is inconclusive (60-70 % of IgG4+RF does not show positive in blood work). IgG4+RF usually responds to rituximab infusions.--32.210.12.47 (talk) 23:38, 6 February 2021 (UTC)
Suggested by Putnam Morgan, Connecticut, USA 2.6.2021--Pmorgan7 (talk) 02:37, 9 April 2010 (UTC)
IgG4
[edit]doi:10.1097/BOR.0b013e3283412f7c IgG4 deposition seems to be an important mechanism. JFW | T@lk 13:46, 20 June 2011 (UTC)
endometriosis
[edit]It is recognized that endometriosis can lead to retroperitoneal fibrosis. 68.199.114.39 (talk) 20:09, 10 April 2024 (UTC)