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    Includes Expert Content
    Auto-Immune Hepatitis
    avatar
    hunnebeee posted:
    Everyone always talks about Hepatitis C. I would like to discuss
    Auto-Immune Hepatitis. I was told my Auto-Immune Hepatitis was caused from over-the-counter medicines. OTC drugs with acetaminophen and other ingredients. I never was a pill popper; however, I use to take three tylenol, or other head-ache pills (not together, of course.) because two gave me no relief. I found out I was at stage three auto-immune hepatitis and then started taking steriods and immuran. Also, I gave my blood every week for over two and a half years and had biopsies.I would love to discuss with anyone else how this disease has affected their life and if they have been healed or are in remission.
     
    avatar
    forrose40 responded:
    My mother was diagnosed with Auto Immune Hepatitis several years ago. Although my mother had never taken any OTC drugs, she fell victim to this disease. However her case is rather unusual as she inherited this disease. My mother is a direct descendant of a grandparent from England, another words a second generation English/American. We have learned that those with direct English roots are more susceptible to autoimmune diseases of which have proven to be true in our family's case. I had an aunt, sister to my mother, diagnosed with myasthenia gravis, I had a granddaughter born with gastroschisis, a daughter that carries the gene for CF and I have two autoimmune diseases. Please be prudent in your health care, keep diaries of all diagnosis tests, keep copies of lab records, etc. as these are useful in your care. Doctors who aren't familiar with autoimmune diseases can cause more harm than good out of ignorance so make sure you have doctors who have had some autoimmune disease education, experience and/or training. Biopsies can become dangerous with autoimmune hepatitis and my mother has never had one because of that. Make sure your ammonia levels are checked regularly, keep an eye on your liver enzymes, etc. My mother was taking 50 mg of immuran and it caused her to loose all sense of taste and she started loosing weight. Her hematologist and her gastro doctor agreed to lower her dose to 25 mg after being off of it nearly a month to cleanse her body. It worked and she started eating. She has lived with this disease for nearly a decade and I recommend anyone with this disease read all the information you can about it and talk to your family about it. My brother and I are the only caregivers our mother has and it is stressful. We are not guaranteed many more years with her but we cherish every day and do a lot of things to make her days full of joy and happiness. There is no cure other than getting a transplant if the disease is caught early enough nor have I heard of anyone in remission. My mother takes folic acid, immuran, spirolactone, prednisone, lactulose and another pill (a regiment she has been on for nearly a decade). She also has a good GI doctor, PCP, hematologist and neurologist who she sees regularly - it is to maintain her health. Of course with this comes difficult times being sick and recovering along with hard recoveries from hospital stays. We are here for you if you need us.......
     
    avatar
    darkus responded:
    I AM 58 YEARS OLD AND I STARTED GETTING SICK IN DEC 2015, MY PEE WAS DARK I WAS WEAK LOSS MY APPETITE I WAS WEAK TO THE POINT WHERE THEY PUT ME IN THE HOSPITAL 4 DAY THATS WHEN THEY TOLD ME I HAVE AUTO INMMUNE HEP. THIS WAS IN FEB2015 I HAVE BEEN ON PREDISONE AND AZATHIOPRI FOR TWO MONTHS THEN I WAS TAKEN OFF RREDNISOME FOR A MONTH ,BUT STILL ON AZATHIOPRI.AND WHEN A LIVER BIOSPY WAS DONE THEY CALLED ME AND PUT ME BACK ON PREDNISONE DOUBLE ABOUT 40MGS. NOW IT JUNE AND I WAS TAKEN OFF PREDISONE AGAIN AND MY BODY IS TRIPPIN, IM TAPPING OFF SHOULD BE ALL THE WAY OFF IN A WEEK.. BUT I SEE MY PEE IS GETTING DARKER BY THE DAY IM SHAKING BAD IM WEAK AND VERYSICK TO MY STOMACH , BUT THE REASON HE SAID HE TAKIN ME OFF PREDISONE IS CAUSE MY BLOOD TEST ARE IN RANGE. BUT IM STILL SICK MY HEART RATE IS UP. MY P.PO .IS SENDING IN NEXT WEEK FOR A FULL CADI WORK UP AND A PLUMARY WORK UP CAUSE I DO HAVE HIGH BLOOD PRESSURE. SINCE IVE HAD THE AUTO HEP, THEY TOOK ME OFF ALL HIGH BLOOD PRESSURE MEDS . IM SWOLLEN IN MY FEET AND BELLY AND I HAVE GAINED 40 ILB . HELP!! I CANT GO BACK TO WORK YET AND HES SENDING ME BACK WHAT TO DO? WILL THE AUTO HEP COME BACK LIKE LAST TIME OR SHOULD I JUST DO THE LIVER BIOSY IN JUNE30TH AND SEE WHAT HAPPENS ? I THINKING THE SIDE AFFECTS FROM THE MEDS WILL GO AWAY WITH TIME. WHAT DO YOU THINK? IS THIS SOMETHING I WIL HAVE TO PUT UP WITH FOR THE REST OF MY LIFE . I HAVE BEEN ON 4 BLOOD PRESURE MEDS FOR 16 YEARS I THINK THATS WHY I MAY HAVE THIS .
     
    avatar
    SusanOb15 replied to jal333's response:
    What was your reaction to Imuran? I think it was poisoning me. Felt like I was getting the flu - constant all over body pains and generally ft like hell
     
    avatar
    mccindy replied to forrose40's response:
    I have been in remission for about 7 years and I no longer take prednisone or Imuran. Wish I knew how many others are in remission.
    Cindy
     
    avatar
    sroger replied to CplusAuto's response:
    I also have both. I haven't started treatment yet either. It's really a slow process with GAP. I'm grateful for the gov't insurance but I started the process in july and still have not seen a hepatologist or gastrointestinal doc. I have a appt. oct. 12th. I also have a lot of pain City. But never tested positive until now.
    I really don't know what to think or do. When I eat lately my stomache and intestines swell and become hard. Don't really no wha


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