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How long can you live with stage 4 autoimmune hepititis?
I have stage 4 cirrohsis (sp) and stage 3-4 autoimmune hepititis.  I am on prendisone and immuran.  Does anyone know how long I have before the symptoms get worse and then I guess I go into a coma.  I am not getting answers from the medical people and I was wondering if anyone could help.  I am extremely tired all of the time but can't sleep more than an hour or two at a time.  I have diabettes type 2 that is staying in the ok range for right now.  My liver is 4 times the size of normal and I noticed lately that I am thirsty all of the time and it is getting worse every day.  I am not a candidate for a liver transplant because they tell me that the auto-immune disease will just do the same thing to another liver and possibly worse.  (Even if that was an option I would not have one.)  I am not jaundice as yet and my daughter in law (a nurse) checks my eyes and skin all of the time when she thinks I don' t notice.
I hope someone reading this has some insite as to the length of time a person can live like this.  Please let me know.  And thank you all very much.
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You said: "I am not a candidate for a liver transplant because they tell me that the auto-immune disease will just do the same thing to another liver and possibly worse".
I don't know the particulars of your situation but I do know several people who are alive today after being transplanted for autoimmune hepatitis in 2000 or 2001.
This is from the Mayo Clinic:
"When medications don't halt the progress of the disease, or you have or develop irreversible scarring (cirrhosis) or liver failure, the remaining option is a liver transplant — a procedure that's often very successful in people with autoimmune hepatitis."
See: http://www.mayoclinic.com/health/autoimmune-hepatitis/DS00676

I have no idea how long you have but if the drugs you are taking are not controlling your disease you might consider discussing another drug with your doctor. On the other hand, if your doctor is insistent that autoimmune hepatitis is an exclusionary factor for a liver transplant seeing another doctor might be advisable.
Mike
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If your current medical team isn't offering you any hope or options, I agree with Mike that a second opinion is in order. Have you seen a liver specialist (hepatologist) at a transplant center? I think that would be the place to start but maybe Mike can confirm. Meanwhile, you might post the same question to our resident Medical Expert, over at the Professional Forum at this link: http://www.medhelp.org/forums/show/272
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I assumed the doctor was a hepatologist because I wouldn't think that a GP or GI would be prescribing prednisone and  Imuran and certainly not diagnosing AIH but, I could be wrong. That is a scary thought. Jim is right - if you aren't seeing a hepatologist you should be and one at a transplant center would be ideal.
Mike
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568322 tn?1370169040
What they told you about not being a good transplant candidate is incorrect.  I know several people who had autoimmune hepatitis and got transplants.  You should get evaluated at a transplant center.

Your diabetes is probably not as well controlled as you think.  Prednisone causes your blood sugar to go UP......and having high blood sugar causes severe thirst.  
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Thank you all for responding.  All good advice and I am thinking of checking out the Mayo Clinic, or something closer to where I live in upstate NY.  
I am seeing a Gastro Dr and he is perscribing the meds. What is a hepatologist?  I went to a hematologist 8 years ago when I think this all started, and she said it was because I was a smoker and to go home and stop smoking.  I had the rash and an elivated white cell count at the time.  I am not sure what a hepatologist does.  My second Dr. said I had a fatty liver and I was fine to go home also.  It wasn't until after I insisted and getting the pathology results did I notice the final diagnosis and started to ask questions.  That is when I went to another Gastro. and he told me what exactly I had.  Because of it all being stage 4, he mentioned a liver transplant.  I do not want one.  This is my decision not the doctors.  I thouhgt the only treatment was Steroids.  If you all know something else please tell me.
I am watching my sugar reading closely and so far they are staying in the 100-120 range so I am grateful for that, but the thirst is still there.  Something to ask the Dr about when I see him at the end of the month.
Thanks all
Cindy
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A hepatologist is a doctor who specializes in diseases of the liver, pancreas and biliary tree. A gastroenterologist specializes in diseases involving the gastrointestinal tract.
Gastros do treat liver diseases but the hepatologist is the specialist when it comes to liver disease.
Other drugs that I know about for treatment of AIH are Cyclosprin and Prograf (Tacrolimus) which have traditionally been used in the transplant population to prevent organ rejection. I don't know a lot about autoimmune disease and the current drugs that are used but it shouldn't be too hard to find with Google.
I think you should definitely get seen by a hepatologist and preferably one associated with a transplant center.
Mike
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233616 tn?1312790796
seeking out another opinion does sound like wisdom. I do know that the demand for livers is expected to rise 500% in the next few years, so criteria may be changing.

What type of autoimmune disease do you have and how aggressive is it?
What treatment has been used?

The reason I ask is not all autoimmune is caused by the usual suspects, some autoimmune is being generated by one pharmaceutical that creates the same scaring as seen with HCV. Marijuana also does this.

Were you able to mitigate your NASH at all before being pronounced not a candidate?
I know there's less chance of successful TP unless the fat intake and storage biology can be altered, so in some literature it's the NASH not the autoimmune that's the bigger issue.
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my husband has liver cancer and is being considered for a transplant. the problem is he has 3 very small nodules on the lung and the doctors are not sure if they are cancerous. So small they are not sure if a biopsy would detect any cancer cells. All the waiting is stressful and time is of the essence. Anybody with info about the nodules might help.



sunshine
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184420 tn?1326743408
why dont you want a transplant???

you should definetly be seeing a hepatologist and not just a GI ...

unfortunately hepatologists are a bit hard to find unless you are in a major city... i searched hepatologists in my network for my insurance and there was NOT ONE except up in North jerzey near NYC... and i live 20 minutes from Philly, i guess all the hepatoligsts in Philly are NOT IN MY NETWORK I HATE HMO'S  my dr is a GI but im only stage 2 right now and he is pretty well informed but if i was cirrotic i would be looking around for a hep dr asap
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My husband has Stage 4 Autoimmune Hepatitis and is considered NOT a transplant candidate due to age and heart condition.  He is continuing to pursue options and is encouraged by his Gastro to do so, but was told by Mayo Clinic Hepatologist that he was not a candidate for the above reasons. He has days of being jaundice and then coloring okay...days of almost a grey color and then okay.  Confusion and memory are issues...again, they come and go.
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4766299 tn?1358901763
what is your comment about marijuana stating ? I dont quite understand.
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I have autoimmune hepatitis. I am seeing a doctor in Cherry Hill, NJ who is affiliated with Our Lady of Lourdes hospital in Camden.  His practice is the only liver practice in South Jersey.  His name is Hisham ElGenaidi, on Kresson Rd. in Cherry Hill.  There are also two other doctors in his practice.
I am currently on Soc.Sec. disability at his insistence, and he accepts my insurance.  Check with your insurance co.
I am really surprised that your insurance doesn't cover some one n Philly given our vast choices of hospitals and specialists in our area.
My initial doctor was affiliated with Einstein Medical Center in the Northeast.  They have an excellent Liver Dept. as well.
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