Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 , Not much time tonight, but wanted to throw this out there to you - I have lots of autoimmune markers in my blood that suggest autoimmune hepatitis. This was also one of my initial dxs; however, my recent biopsy ruled out autoimmune hepatitis. My understanding (please correct me if I'm wrong Stef or ) is that a liver biopsy is the only way to definitively determine whether it is there or not.(Of course, it must well timed in the course of the disease and lucky enough to get a good sample.) I think a lot of doctors mis-diagnose PSC as AIH in women because we fit that profile more nicely. PSC is " supposed " to be a disease of men... Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, MELD 17 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hello Everyone May I introduce myself? My name is , I am 35yo female in Australia just diagnosed with PSC. I have 2 beautiful little girls and a very supportive partner. My apologies....this will be long. Nearly 2 years ago I had an abnormal liver function test. Since then we have been searching for a diagnosis. Initially they picked up copper overload and the suggestion was that I may have s Disease. I was treated with chelators (D-penacillamine) to remove the excess copper. The D-Pen cause more damage than good, ie what was called 'gut-rot'..... I stopped that treatment 18 months ago and my gastro system is still extremely tender to touch. After that it was suspected that I had probable marked negative autoimmune hepatitis and have been treated using prednisolone and azathioprine. Over the last 6 months my health has been steadily deteriorating and after ERCP, PSC was suggested. I was told on Monday 6/12 that I have PSC just before I had a colonoscopy on the same day. By Wednesday 8/12 I was in the emergency room with extremely high temperature, low blood pressure and high heart rate - pretty scary especially after passing out during xrays. I was told it may have been an infection in the bilary tree which also caused an infection in my blood. I don't understand any of this yet but was told it may happen again as the disease progresses. I have always had pain/tenderness in the shape of a backward C around my abdomen since using D-Pen. The last 5 days I have developed pain (like hundreds of needles stabbing at the same time) across my upper abdomen but it seems to be getting better. I started on URSO 4 days ago. I wonder about everything with this disease....I've read whats available on the internet and want to bury my head in the sand and hope it all goes away. Diet? Does it always progress to liver transplant stage? What can I do to avoid that happening? What came first AIH or PSC.....which caused the other? Take care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Hi ; I think that this same message was posted earlier on 12/15/2004; see message 66658 in the archives. So several of us have already replied to your questions (see messages 66675, 66664 and 66696). Let us know if you need directions as to how to find messages in the archives. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2004 Report Share Posted December 18, 2004 Sorry, still getting the hang of this listserve....and had email probs over the last few days.....i did miss those messages. Thank you to all for your advice.......its amazing the similarities in your messages to my circumstances......lots of little things that I wouldn't usually associate with this illness which I now realise may be associated. I was relieved to see I'm not the only one losing my hair......I now take Berocca and the hairdresser is able to see new growth after 3 weeks of taking Berocca. Hooray! Take care Re: Newly Diagnosed > > > Hi ; > > I think that this same message was posted earlier on 12/15/2004; see > message 66658 in the archives. So several of us have already replied > to your questions (see messages 66675, 66664 and 66696). Let us know > if you need directions as to how to find messages in the archives. > > Best regards, > > Dave > (father of (19); PSC 07/03; UC 08/03) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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