Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Margo You have given me hope!! 14 years!! Even though the research I have found has said the survival rate with out meds is 10 years, and with meds u can live a sortive normal long live?? I have never heard that 10year mark for meds?? it's hard not to get depressed with this " unknown crap " I'm having my second biopsy in november (to see how long , it is before we need to talk to transplant people ) quote from my doctor. Since that visit I have been so worried, and no one gets it, the pass it off as me being negative?? I'm not I'm just scarred and that is aloud Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi I have a friend in denmark, and his daughter is 7/8 I believe and she has aih. He I believe does not belong to this group. the mail is too much for him. If you want to contact him, I emial him and see if it is all right Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Hello thank you, my birthday was the 24th of september lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Geri I am sorry to hear you are having so much trouble. I too have had normal labs for several months now I am down to 2.5 mg of pred. and 100 immuran I just saw my Dr. and asked if my labs are normal why do I feel worse than I did in a long time My body hurts like crazy I feel dizzy which I had not been dizzy for a long time and I am soo tired almost all the time.Her answer was due to coming off Pred. We have reduced it very slowly 2.5 mg every 6 weeks. I don't get how if you are doing better why do we feel so badly. Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 Auto Immune Hepatitis---when you body for some reason decides that your liver is a foreign body and attacks it, much like it does when you receive a transplant---Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 This may sound silly, but I and my mother take unflavored geletin every day for joint pain, give it 3 weeks or so, it helps. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 > I have been doing some research on autoimmune hepatitis and discovered the pains i suffer are called arthralgia pains.My fingers,knees, shoulder, etc. You can look it up thru search. It looks like there is not much I can do to try and avoid them. check it out. Any feedback would be appreciated. > > Bobbie Hello bobbie I have had AIH for almost 5years now...... I can not believe it's been that long... I expreienced a great deal of pain in my 2nd and thrid and some into my fourth year with this and then guess what.. I was having chest pains and they could not figure out what it was.. and then a conclusion was an inflamation of the chest wall... they (doctors) recommended to try Vioxx as a prn.. so I did and it did not just cure the chest pain, it cured all pain.... I have no more joint pain... unless i do not take it.. I usually take it on days that I know I have to go go go. I have not experienced these pains in my chest for a long while now... but the vioxx has not only taken away my joint pain everywhere but also has helped in the migrane department which I was getting everyday!!! it also makes me peppy!!!LOL So I have told my doctor I like to stay on it, and it's ok... it has not affected my liver so far... and minmal chance.. etc.. just keeping an eye on it... But i feel good, so that's what mattters to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Thanks Ginger!! This might answer s question. How are you doing? Love and serenity Jerry Source: Current Medical Diagnosis & Treatment 39th Edition, 2000 McGraw Hill Publishers ( ISBN 08385 15916) Edited by: Lawrence M. Tierney, Jr, Stehen J. McPhee, Maxine A. Papadakis AutoImmune Hepatitis This is generally a disease of young women but can occur in either sex at any age. Affected persons are often positive for HLA-B8 and -DR3 or, in older patients, HLA-DR4. The onset is usually insidious, but about 25% of cases present as an acute attack of hepatitis and some cases follow a viral illness such as Hepatitis A, Epstein-Barr infection, or measles or exposure to a drug or toxin such as nitrofurantoin. The serum bilirubin is usually increased but 20% of patients are anicteric. In classic cases, examination reveals a healthy-appearing young woman with multiple spider nevi, cutaneous striae, acne, hirsutism and hepatomegaly. Amenorhea may be a presenting feature. Extrahepatic features include arthritis, Sjogren's Snydrome, thyroiditis, nephritis, ulcerative colitis, and Coombs-positive hemolytic anemia. In classic (type 1) autoimmune hepatitis, antinuclear antibody (ANA) or smooth muscle antibody (either or both) is detected in serum. Serum gamma globulin levels are typically elevated (up to 5-6 g/dL). In patients with high gamma globulin levels, the enzyme immunoassay for antibody to HCV may be falsely positive. A second (type 2) rarely seen in the United States but more common in Europe, is characterized by circulating antibody to liver-kidney microsomes (anti-LKM1) without anti-smooth muscle antibody or ANA. Concurrent primary biliary cirrhosis or primary sclerosing cholangitis has been recognized in up to 13% of patients with autoimmune hepatitis. Prednisone with or without azathioprine has been shown to improve symptoms, decrease the serum bilirubin, aminotransferase and gamma globulin levels, and reduce hepatic inflammation. Symptomatic patients with serum aminotransferase levels elevated tenfold (or fivefold if the serum globulins are elevated at least twofold) are optimal for therapy, and patients with more modest enzyme elevations may be considered for therapy depending on the clinical circumstances. Prednisone or an equivalent drug is given initially in doses of 30 mg orally daily with azathioprine or mercaptopurine, 50 mg/d orally, which are generally well tolerated and permit the use of lower corticosteroid doses. Nevertheless, complete blood counts should be monitored monthly thereafter because of the small risk of bone marrow suppression. The dose of prednisone is lowered from 30 mg/d after 1 week to 20 mg/d and again after 2 to 3 weeks to 15 mg/d. Ultimately, a maintenance dose of 10 mg/d is achieved. While symptomatic improvement is often prompt biochemical improvement is more gradual, with normalization of serum aminotransferase levels after 6-12 months in may cases. Histologic resolution of inflammation may take up to 18-24 months, the time at which repeat liver biopsy is recommended. Failure of aminotransferase levels to normalize invariable predicts lack of histologic resolution. The response rate to therapy with prednisone and azathioprine is 80-90%. Cirhosis however does not reverse with therapy and may even develop after apparent biochemical and histologic remission (absence of inflammation). Once remission is achieved, therapy may be withdrawn, but the subsequent relapse rate is 50-90%. Relapses may again be treated in the same manner as the initial episode, with an expected remission rate again of 80-90%. After successful treatment of a relapse the patient may be kept indefinately on azathioprine up to 2 mg/kg and the lowest dose of prednisone needed to maintain aminotransferase levels as close to normal as possible. Nonresponders to prednisone and azathioprine may be considered for a trial of cyclosporine or methotrexate. Liver transplantation may be required for treatment failures, and the disease has been recognized to recur in some transplanted livers as immunosuppression is reduced. Ginger-gehud119@... MAY YOUR DAY BE BLESSED WITH JOY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 Hi Judy, I was dx when I was 14 (1995) and had a transplant on the 6th July 1999. I had a few complications but nothing the doc's couldn't handle. I was in hospital for only two weeks. But the next year, in March 2000 the AIH came back. This is because transplantation does not cure the basic genetic defects relating to control of the autoimmune reaction. But the good thing is I feel a lot better and I can do more and I'm not in hospital as much as I used to be . I still get tired and that, but thats to be expected. I'm sure you will be fine All the best Matt Hastings ================================================== --- judynor@... wrote: > I was diagnosed with AIH 3 yrs. ago. I have been on > 6mp and aldactone > since that time. In nov. I flared and was placed on > Prednizone 15mg. > I was referred to UAB to be evaluated for the > transplant list and was > listed. I really didnt expect to even be placed on > the list. I would > like to know if anyone at this site has had a liver > transplant and if > so how you are doing? My symptoms are FATIGUE,wt. > gain, yellow eyes, > hemangiomas of the skin, slight edema that > fluctuates. I have good > days and bad days,but I am still working full time. > I just need to > hear from someone going through the same thing. > > > Judy > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 But the next year, in March 2000 the AIH came back. Dear Matt, I have a question for you -- did you continue to take prednisone post transplant? And what testing did your tx team do to determine the AIH is back? I know that transplantation does not cure AIH and that you will always have it. But I understood that prednisone treatment helps keep it in "check". Thanks, Cheryl & Randy Randy tx 12-14-99 AIH Cheryl is his living liver donor Cleveland Clinic Foundation, OH Living Liver Donor Surgery #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 In a message dated 4/28/2001 6:58:28 PM Central Daylight Time, judynor@... writes: << Has anyone else had problems with vision? >> Actually, right before I was diagnosed and in the throes of acute attack, I had problems where my vision would literally black out for 5 minutes at a time. It was really weird. I could funtion in every other way, but I just couldn't see anything at all. It was one of the things (as well as many others) that finally forced me to see a doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Hi, This is Judy from Pensacola,Fl. I've been reading everyiones messages,but havent had time to email. I saw that Jodie's fund was based in Haines,Fl. I was wondering where this is located and where will the transplant be done? I'm on the panhandle and have been seen at UAB in Birmingham. Great doctors. It's amazing to me that I had never heard of AIH until my diagnosis and yet there are alot of us out there and probably a lot more that we dont know. I have a lot of joint pain and swelling right below my knees. Pain in my hands,too. I had an episode in Dec. where I lost the vision in the top half of my right eye for 5 min. Many test later they think it was a TIA not a migraine which I do get. Has anyone else had problems with vision? Judy/Pensacola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 My Dr. told me it was hereditary. My grandmother had cirrhosis and died at 89,never drank. I'll take 89 any day. Noone else has had this in my family,but I worry about my girls. Judy/pensacola --- nanacherry@... wrote: > Can someone tell me if AIH is hereditary? I thought > I read somewhere that it came from a predestined > gene. (If I know what I remembered). > thanks cherry > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Hi Gloria,isn't it interesting that many people have the same exxperience in the diagnosis stage,i was diagnosed seven years ago,i was put in isolation,my family were too,i was a horrible experience,and its still happenning.people,in particularly the people who ar ethere to care for us when we're in such situations need to be educated >From: gloriagauss@... >Reply- > >Subject: [ ] AIH >Date: Wed, 10 Oct 2001 08:54:09 EDT > >Hello! Patty, > I do not have cirrohsis, but peri-portal fibrosis in my liver caused >from a >severe flare up, I first found out that I had AIH in April of 2000, I was >like your symtoms you described, and in the hospital,not knowing what I >had, >in isolation, and the nurses were afraid to come in around me. I almost >died! >I suffer I think from just about every side effect of prednisone, and my >blood pressure is a real problem from it, I take three different pills for >it >as of yesterday, one more was added! > Hope to hear from you soon,gloriagauss@... _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 HI Gloriagauss, Im not familiar with per-portal fibrosis. I need to look it up. I havent had problems with high blood pressure but in Dec 2000 I had a migraine for 3 weeks! After MRI, Catscan Eye doctor my specialist in Anchorage said " oh thats probabally a side effect from the prednisone. " arghhhhhhhh!!!! Thats when I burst in to tears and begged to start the process of coming off prednisone. It has taken me since then to come off of it. Slowly!!!!!!! Anyway, thanks for the ear! Peady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 it makes me mad to that my clothes are tight in the waist,I guess its because the meds, cause the fat to settle there, my face was so bloated last Dec. I was ashamed to even look in the mirror, coming down on the pred. since than has helped that, it is still round, but not swollen anymore, and I finally have a neck again. It is so hard to look in the mirror and see the physical changes our bodies have gone through, But I keep telling myself keep the faith it will get better, but it is just not quite as quick as I want, and I can only pray that my liver keeps responding! Do you know if you can get cirrohsis if if our enzymes are o.k.? I wonder about that! gloriagauss@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 In a message dated 10/12/01 4:52:44 PM Pacific Daylight Time, gloriagauss@... writes: I was ashamed to even look in the mirror, Hey, we're alive and doing what it takes to get better. It is hard, as a woman, to not feel ashamed of those physical changes, but they are signs that we are on the track to a longer, better life. (My face became so swollen that I literally, physically couldn't smile, and I could open my mouth only a little way.) Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 > it makes me mad to that my clothes are tight in the waist,I guess its > because the meds, cause the fat to settle there, my face was so bloated last > Dec. I was ashamed to even look in the mirror, coming down on the pred. > since than has helped that, it is still round, but not swollen anymore, and I > finally have a neck again. It is so hard to look in the mirror and see the > physical changes our bodies have gone through, But I keep telling myself keep > the faith it will get better, but it is just not quite as quick as I want, > and I can only pray that my liver keeps responding! Do you know if you can > get cirrohsis if if our enzymes are o.k.? I wonder about that! > gloriagauss@a... Sorry--I do not know. One source seems to say yes and another no. I don't think anyone really knows. I already have cirrhosis, I had it when I was diagnosed almost three years ago. As far as I know, it's not worse--but I've only had one biopsy and am not anxious to have another. Glad things are improving for you on the pred--right now, I'm off pred and just on azath. However, there's no guarantee that I can stay off it--I take this good fortune month by month and hope for the best. I've sort of become kind of accepting of this(I'm not sure if that's just the right word). My attitude(now) is " do what I can and accept what ever is ahead " . It took me a while to get to this frame of mind I'll admit. Jean Quote Link to comment Share on other sites More sharing options...
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