Guest guest Posted March 26, 2003 Report Share Posted March 26, 2003 Hi Everyone, My name is . I stumbled on this great web site while searching for anything related to liver disorders. To make a long story short, a dermatologist ordered blood work because of severe intermittent itching, at this point going on close to two years. Lo and behold blood work showed abnormal alk phos. reading. I found a gastro dr. and had blood tests which came back ANA and SMA positive. Thinking I had AIH I had a biopsy which showed only irritation. Had an ERCP which had normal results. I'm sure stranger things have happened!! Dr. put me on URSO for what he says is probably autoimmune cholangiopathy. The only troublesome symptom I've had is this infernal itching. Well, I should say I also have a bit of arthritis in my knee and at times a dry mouth (of course I could just be paranoid too!!) I've been on URSO for only a few days now, with no relief. When I started the therapy, I was not itching, it seems to come and go. I guess this is the nature of the beast. I've searched the web for anything relating to URSO and/or aic with not much luck. Lots of info on pbc and AIH though!! I assume they are closely related. My dr., being a dr., was vague as to what aic is, just that it is autoimmune, and did not give many details as to what URSO is and does. I've been searching the web with not much luck. I would GREATLY appreciate any info or advice anyone has. Mostly, though, I'd like to know if URSO is going to provide some relief for this horrendous itching. I think I'm going to lose my mind soon if I don't get some relief. Of course I've been saying this for a year so I guess I can hold on longer!! Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 ...when you posted the other day I immediately sent a site on autoimmune cholangiopathy and another on autoimmune diseases. There is plenty of info onthe net about urso and quite a few here are on it... I'm sorry that no one has gotten back to you yet, but I shal soundly chastise them . Let me welcome you to our family we are glad to have you her. I shall repost the info I sent so keep an eye out. I am on webtv so I usually send sites that show only the words " included page " followed by the subject of the site...just click pon there and the site will come up. Again welcome...I'm sure someone els will get in touch soon. I know of at least one person here who has AIC. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Hi Jerry, Thanks for the welcome. It's good to know there are others who can relate to having a liver disorder. I looked up the web pages you provided and they are helpful....thanks!!! I started taking URSO about five days ago and the itching has intensfied. A representative from the drug company says bile will improve within 30 days. I hope it's a lot sooner!!! If anyone has info on this let me know!!! I look forward to being itch-free. I can't remember what life was like before LOL!!! Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 Thanks Ruth, and good to hear from you again! I have been reading your posts, of course. Thought you would want to know that I have a new Vice President that I report to at work, and he has taken some of the stress from me already. God has a way of taking care of us when we can't take care of ourselves. Not only did he send this new leader to our hospital, but we replaced our consultant on the computer system install, and the new one is awesome! I told her the other day that, as far as I was concerned, that she was a product of divine intervention!!!!! I hope you are doing well and have a wonderful weekend. All my love, Layne -----Original Message-----From: hrby97111@... [mailto:hrby97111@...]Sent: Saturday, March 29, 2003 12:49 PM Subject: RE: [ ] Autoimmune Cholangiopathy Hi Layne!!! I know how it is with the crying, I think sometimes with the prednisone, I cry buckets, but sometimes I think it also has to do with the cycle of pain and fatigue will get me going. Be gentle with yourself, and do something just for you...my good friend and I when we are having a bad day will say to each other, "Calgon take me away..." Love Ya Lots, Ruth ", Layne" <lashley@...> wrote: Jerry, I cried all day earlier this week ( mood swings from the prednisone, I guess ). But, I promise you, after reading your email to , I am going to LAUGH all day today! Thanks, I needed that today! Layne -----Original Message-----From: gefox@... [mailto:gefox@...]Sent: Friday, March 28, 2003 10:15 PM Subject: Re: [ ] Autoimmune Cholangiopathy...I'm glad I helped a little, not having AIC idon't know muchabout it....I see Bozena wrote you ...a couple others have it too...theywill get to you soon I'm sure as tey fear my wrath. RE: itching and "ican't remember what life was like before".... I have the same problemwith my sex life (or lack of it....getting old is not for wussies)lve jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 Layne Sometimes a good cry is helpful, but a laugh makes you feel much better.... i haven't cried in 9 years I hope I'm alright... love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 from what I read AIC is PBC with a different sign (+ instead of - or vice versa) in front of AMA tested levels so I would think that it progresses much like PBC and I think that's what it said in the site I sent you.... we know the suffix ..itis... means inflammation or irritation (disease) the suffix ...pathy... means- disorder, suffering (being acted on) this would lead me to conclude they are intechangeable in the disease(s) known as AIC...they are the same thing. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 Jerry, Just read your post and had already posted my version of this. I notice you say that AIC is PBC (with a + or -), but my doctor has always said it is not PBC. He has always called it an overlap to AIH. This is probably a technicality, but that's how he describes it. Also the article posted by Matt Hastings looked at AIC possibly being an indicator of very severe AIH seems to take this view. My doctor has explained AIC as affecting the small bile ducts in the liver (apparently the liver has little bile ducts all through it that eventually go down to the main bile duct?????) I think PBC affects the main bile ducts while I am not sure if AIC does. One other thing he said was that PBC can fluctuate in its progression eg can go from stage 3 back to stage 2. I haven't asked him about the progression for AIC. Anyway, I haven't looked into it all in great depth and all this liver/bile stuff seems just so complicated........ BTW, how's that spring weather over there? Bet it's still colder than here!!! hee hee... Regards, Bozena > Message: 9 > Date: Sat, 29 Mar 2003 23:45:35 -0500 (EST) > From: gefox@... > Subject: Re: Autoimmune Cholangiopathy > > from what I read AIC is PBC with > a different sign (+ instead of - or vice versa) in front of AMA tested > levels so I would think that it progresses much like PBC and I think > that's what it said in the site I sent you.... > we know the suffix ..itis... means inflammation or irritation > (disease) > the suffix ...pathy... means- disorder, suffering (being acted on) > this would lead me to conclude they are intechangeable in the disease(s) > known as AIC...they are the same thing. > > love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2007 Report Share Posted June 5, 2007 I hope you and your doctor can discuss your treatment options, and who can explain AC to you. Be insistent, if information isn't clear and readily forthcoming. You shouldn't have to figure this out alone. I think you'll find several people in this group who are familiar with AC/PBC. Harper In a message dated 6/5/07 4:15:24 PM, itsukat@... writes: > I just had my biopsy it has a new word I have not seen before. > Autoimmune Cholangiopathy. Does anyone know anything about this. I am > afraid they will try to put me back on predisone, and I would rather > have a backup plan to taking that again. > Thanks. > Kathy in CA > > > ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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