Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi Everyone, I joined the group about a month ago and read the daily mails from everyone and am quite entertained by the backward and forward banter about all sorts. I have been learning lots about all the different conditions - drugs used, side effects etc. To re-introduce myself for those who missed my first posting I am a 32 years old, a mom to Sasha(3yo), (3yo) - yes twins and Jordan (20 months) all girls. I'm married. We all live here in Durban South Africa. I was recently "diagnosed" with Auto Immune Hepatitis and Primary Biliary Cirrhosis. It seems my father who passed away two years ago this Christmas - had the same - which went undiagnosed - he was 53yo when he passed away. Hind sight is 20/20 vision and now i know that this is serious i'm trying to do all to be proactive. Joining this group has certainly helped educate and calm my fears to a large extent. I've had the liver biopsy which confirmed diagnosis and been on prednisone for three months now - having liver function tests monthly to get me onto the right dose of prednisone. I started on 30mg then came down to 25mg then 20mg and after my last visit to my gastro guy today - he's reduced it again to 15mg for the next month. My liver functions have all come down and into range nicely (i'm going to phone and get a copy of the exact results - just for my own records) but one concern today was that i had a raised bilirubin count??? 27 if that means anything to anyone - apparently 50 is something to worry about?? Can anyone explain this? Is it normal from being on the prednisone? I did question my doc but he was very quick to tell me it's not that bad and i mustn't worry about it (ja right). I got the feeling he either didn't know how to explain it to me or didn't know the answer(seems unlikely for a specialist doctor hey?). Does prolonged use of prednisone cause this to develop into a problem??? Is anyone else in the same boat? I know i'm very new to this and a bit "paranoid" about EVERYTHING! I also wanted to ask if there's anyone in the group from South Africa? Are there any support groups out here - does anyone know? Anyway, looking forward to hearing from you all soon in this regard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 My limited understanding of bilirubin is that it is a product produced by either the liver or the bile duct. Whenever my Daryl's bilirubin with elevated he itched something awful. Are you itching?? anne [ ] high bilirubin count Hi Everyone, I joined the group about a month ago and read the daily mails from everyone and am quite entertained by the backward and forward banter about all sorts. I have been learning lots about all the different conditions - drugs used, side effects etc. To re-introduce myself for those who missed my first posting I am a 32 years old, a mom to Sasha(3yo), (3yo) - yes twins and Jordan (20 months) all girls. I'm married. We all live here in Durban South Africa. I was recently "diagnosed" with Auto Immune Hepatitis and Primary Biliary Cirrhosis. It seems my father who passed away two years ago this Christmas - had the same - which went undiagnosed - he was 53yo when he passed away. Hind sight is 20/20 vision and now i know that this is serious i'm trying to do all to be proactive. Joining this group has certainly helped educate and calm my fears to a large extent. I've had the liver biopsy which confirmed diagnosis and been on prednisone for three months now - having liver function tests monthly to get me onto the right dose of prednisone. I started on 30mg then came down to 25mg then 20mg and after my last visit to my gastro guy today - he's reduced it again to 15mg for the next month. My liver functions have all come down and into range nicely (i'm going to phone and get a copy of the exact results - just for my own records) but one concern today was that i had a raised bilirubin count??? 27 if that means anything to anyone - apparently 50 is something to worry about?? Can anyone explain this? Is it normal from being on the prednisone? I did question my doc but he was very quick to tell me it's not that bad and i mustn't worry about it (ja right). I got the feeling he either didn't know how to explain it to me or didn't know the answer(seems unlikely for a specialist doctor hey?). Does prolonged use of prednisone cause this to develop into a problem??? Is anyone else in the same boat? I know i'm very new to this and a bit "paranoid" about EVERYTHING! I also wanted to ask if there's anyone in the group from South Africa? Are there any support groups out here - does anyone know? Anyway, looking forward to hearing from you all soon in this regard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Hi anne, To answer your question about itching - yes I am. I thought it may be mind over matter as I've been reading alot about AIH and PBC and obviously one of the symptoms is itching. I can say that i've been totally asymtomatic this far.... no symptoms at all. It's most unfortunate place to itch too... my upper thigh's (that's why i though it was in my head as this is not the norm according to what i've read - about itching). Thanks for your reply! Looking forward to hearing from anyone else! Also in connection with members in South Africa - also support groups anywhere in Africa. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 The prednisone helped bring my levels down and they go up when I am off the prednisone. I also take Imuran with it. I am not sure what to tell you but there are some very knowledgable people here who can help. Welcome to the group the WV hillbilly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 In a message dated 11/10/2004 12:56:34 PM Eastern Standard Time, kmw@... writes: Does prolonged use of prednisone cause this to develop into a problem??? Is anyone else in the same boat? My enzymes started to go up and my doctor told me that after a while prednisone can cause a slight elevation--but in my case I was on it a year. When I started on Imuran they came back down to normal. Regards Elaine Long Island, NY Quote Link to comment Share on other sites More sharing options...
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