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Autoimmune hepatitis disease

Posted , 63 users are following.

cathy67411
cathy67411

Has anybody else got this condition that is willing to discuss their treatment and how they are coping with this disease?

I have been living with AIH for 14 years, first diagnosed when i was 14 years old. Luckily I am fairly stable with the odd flare up now and again. I am being looked after by the Queen Elizabeth Hospital in Bham and they are brilliant. Currently im on 50mg of Azathioprine a day and its brilliant with no side effects. I have been on Prednisalone in the past and ive not got on well with it. My doc keeps mentioning the possibility of me having to go back on it in the future but I dont like the side effects.

I am a busy professional who has no time to be poorly, so fingers crossed my Azathioprine continues to do its job!!

2 likes, 120 replies

120 Replies

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  • helen96579
    helen96579 cathy67411

    Posted

    Can anyone describe what their flare ups are like?  My own GP just looks at me when I describe symptoms that I believe are flare ups.  I don't think they know much about it at all! I would be interested in symptoms as my flare ups may mot be flare ups.  I wait to hear from someone so I can affirm or not.
  • janet06428
    janet06428 cathy67411

    Posted

    Hi Helen . I have ahi and have had a flare up recently. I had exactly the same symptoms as when I was first taken ill. Sickness.dizzy.tired and my blood results were really bad.liver function poor, I can only describe my own flare up, others may have different symptoms. Gastro doctor said blood tests show when a flare up is happening. I hope this is helpful to you. And I hope you are feeling better. 
    • helen96579
      helen96579 janet06428

      Posted

      Thanks Jane, I get red spots on my arms and legs like small blood blisters, but not raised like a blister.  Yes and a bit tired.  Was wondering, guess we are all different. This is a new field for Drs I think. 
  • hazel12984
    hazel12984 cathy67411

    Posted

    Hi Ladies....I am also Brit/Aus......6 months ago my water turned a browny colour which urged me to seek medical advise...to cut a long story short after GP doing blood tests my liver functions were all high Alt 1400 ASP 1100 and so on, he was treating me for Viral Hepititis and after weekly blood tests for period 3 months my LFT's were  all just about back to normal.....just to confirm his diagnosis he wanted me to see Specialist in this field, so after another couple months of further blood tests , the 4 tests on Antibodies 3 came back negative and 1 positive, so he sent me for Liver Biopsy...

    After visiting him today, he has diagnosed me with AIH.... What worries me is apart from the Urine being discoloured (now back to normal) I haven't had any other symptoms, no jaundice, no nausea , no nothing......so now he is putting me on 50 mg Imuran and 25mg pried and the latter being reduced hopefully to 5mg in 3 months....I am really frightened at beginning this medication as I feel so healthy at the moment, but after reading all side effects from medication I would hate to feel ill due to this. Trouble is, if I don't take the medication the outcome would probably end up worse than what it is! I understand my level is moderate he mentioned a figure 2 (whatever this means) your thoughts would be appreciated.

    • keifer13826
      keifer13826 hazel12984

      Posted

      Hi Hazel,we got told my son Keifer has 4+ damage to his liver after his biopsy but we dont know what that means?  I feel for you I am watching my 14 year young son go through this stupid AIH disease and I really hate filling him up with nasty drugs day after day and not being able to make him feel any better we have no control over what is happening to him, I dont believe the Docs know enough about what he is experiencing either Best Wishes for your journey.

       

    • margie321
      margie321 hazel12984

      Posted

      Hi hazel , I'm recently diagnosed , I'm so glad everyone is sharing their symptoms and experiences with this disease. It's actually rare from what I've read .. Im noticing that there are several of us and we have similarities and many differences .. I haven't yet started the AZA , doc says he wants me out of the " danger zone". (On 40mg of prednisone) My enzymes skyrocket to 3500 alt , Bad nausea At that high level and I feel like I'm having out of body experience, everything feels strange, Urine is almost Brown and smell like a chlorine pool ..I'm fatigued , and no appetite and I have a hard time articulating a sentence .. Once my levels drop to about 2500-2600 I start to feel better . I can tell you that I have no pain ..with 2 recent flare ups they have been the same ..dark urine is the first symptom.. I'm worried about the AZA .. Has anyone heard of a more homeopathic way to help this .. Diet?Why does everyone I meet lately have some sort of auto immune problem .. ? Is it an epidemic ?
    • nancy7777
      nancy7777 margie321

      Posted

      Hi Margie

      Newly diagnosed here with AIH and you story sounds alot like mine.  Alt was 2600 the first time had this and was so sick.  Came back again and now on 50 mg of pred and awaiting levels to decrease before they add imuran and wean the pred.  How is it going now for you?  Would love to exchange stories and expereinces.

      Peace-

      Nancy  

    • margie321
      margie321 nancy7777

      Posted

      Hi Nancy,

      It's going well .. I'm almost off the pred ..5 mg and now taking 75mg of aza .. They started me on 50 and just recently increased to the 75, my levels are not "perfect" but to me they are really good .around 78/40. The brand of aza is imuran .. I don't notice any side effects from it .. My doctor said that a major contributor to the flare ups is stress .. I believe it .. My son has crohns he will not go on the aza .. Crohns patients require 150+ mg of the drug and it Has a higher cancer rate at that level for those diagnosed with Crohns . And an interesting fact is not all AIH patients have a black and white diagnosis .. My liver biopsy was normal, they have diagnosed me by my symptoms .. And my liver specialist said that this does happen .. I am trying to get off the prednisone .. I have 1 more week , after next weeks blood work , if it's normal .. smile

      How are you doing now ?

    • nancy7777
      nancy7777 margie321

      Posted

      Hi Margie

      Hope you are feeling well. My levels have all returned to normal thank god and my prednisone has been decreased a little every week. Now I am at 5 mg daily and imuran 50 mg. Started that several weeks ago. So far so good. That's interesting that stress is a trigger. Who doesn't have stress lol??

      How r u now?

    • Tlctisme
      Tlctisme nancy7777

      Posted

      Hi Nancy,

       I was just diagnosed with AIH last week and am terrified and having A hard time finding others to talk to. Are you still on this site,, ?I would love to see how you are doing

       

    • margie321
      margie321 nancy7777

      Posted

      Oops I missed this one , sorry for the delay Nancy.. I'm fine , it's been 6 months since my last flare up , completely off prednisone .. I take 75 mg of imuran and my levels are normal , I get my blood drawn once a month .. I get occasional stomach aches ..I think it's a side effect of the imuran .. I just deal with it .. How about you ? How are you feeling ?

    • margie321
      margie321 Tlctisme

      Posted

      I was terrified to .. I was diagnosed in March 2016 .. We're all kind of different but similar in many ways smile

      Weird I know .. Your are going to be fine and once they get your enzymes normal and in remission with the prednisone you will probably be on a immune suppressant like Imuran . I take 75 mg a day .. They watch my blood, it's drawn1 x month ..

      What happened , how did they diagnose you ?

    • Tlctisme
      Tlctisme margie321

      Posted

      Oh it's so good to have a face and actual person to talk to,, past 2 weeks have been agonizing, tears, fears, trying to get information and support.

      I was ok but moody and depressed and tired,,I Have Hashimotos thyroid and went in for blood test to adjust my meds. This is when my liver enzymes were found to be elevated to 900. Dr went on vacation went back next week up double, sent me to ER where I had scans, MRII ultrasound and 5 days in hospital. Diagnoses was 99.9 % sure according to my very young GI Liver Specialist,, who 10 seconds after my MRI shoved predisnone down me.  I escaped the Immuran and biopsy for now as levels dropped to 500 and I was sent home. Follow up this Thursday. I'm on 40 MG now, home, tired, dizzy but coping with med. I'm scared to take Immuran. I just want to hear that for most of us it does go away and I can feel normal again, play with my grandchildren and live a full life.. I'm so scared and feel like I'll never be normal again. My Dr said its a rare disease but very common for women with Hashimotos, so I'm not sure what that means,, more likely to get it I guess. How soon do you start feeling better after starting predisnone, I get up,work a little from home, but still am fatigued and little pings in my upper chest. not pain, I can deal, hate the dizziness, but am at least sleeping. Does it get worse the longer you take it? I'm trying to watch what I eat very carefully, I can afford to gain weight. Do the side affects get better or worse the longer you take it? I'm in 40 MG for now and he said in 3 to 4 months 8 will start reducing to 5mg..

        I'm happy to have found this site and you... it makes me feel not so lonely. 

      I will be positive, strong, and kick this with all I have, for now, I'm in the acceptance phase. 

        Please share stories.   I thank you for taking your time to respond to me! 

      Terri

    • chris2012
      chris2012 Tlctisme

      Posted

      Hi Terri

      Sorry ive been a bit slow responding. Ive had shingles so have been a bit under the weather.  Unfortunately autoimmune diseases often come in pairs. If you have one then you are likely to get another one.

      I hope you have a specialist looking after you. An Immunologist is probably a good idea. I wasnt put on predisnone

      . I was put on budnesonide and immuran instead. My levels returned to normal after 6 months and I am on a maintanece dose of immeran now. Seee the study in the link below.

      http://www.ncbi.nlm.nih.gov/pubmed/20600032

      I feel quite normal but get tired. Might be because I'm 63 years old.

      Life expectancy for well controlled AIH is also normal. I have changed my diet. More fruit, vegetables, oats, greek yoghurt. Less sugar and bread.

      Hope all goes well

      Kind Regards

      Chris

    • margie321
      margie321 Tlctisme

      Posted

      Ok , your definitely not alone .. My enzymes were over 3200 the first time, my tests and liver biopsy were inconclusive .. . like I said were all so different .. Last flare up they spiked to 2800 and that's when they diagnosed me , my doctor doesn't even see me lol .. Just calls me or texts and watches my levels via blood work every few days... to make sure they are going down ... I will not go back on prednisone if I can help it smile it's soooo long to get off it .. Lol and I don't like how I feel .. I reduced 5mg every 7-10 days, .. As long as my bloodwork was getting better. your on high doses of preg now and you won't stop that jittery feeling till they reduce more.. The only good thing about it is my back never hurts, no aches or pains anywhere !! Lol If you get another flare up they will put you on an immune suppressant , it's the only way to control it .. Don't worry you don't sound to severe .. If you didn't go in for the Hashemotto disease (my sister has that) you would have never known .. I couldn't tell till my levels are over 2000 that im getting sick .. My urine starts turning brown and I'm nauseous soon after & Feel funny, Out of sorts .. Itchy skin .. I feel completely normal now.. I just take my one medication Imuran everyday with occasional stomach ache .. Comes and goes .. Not to bad it doesn't last long .. Hope that helps

    • margie321
      margie321 Tlctisme

      Posted

      Not that I'm over ruling your doctor .. But I would ask if he could reduce sooner , seems awfully long time to be on the prednisone before lowering your dose .. If your liver enzymes levels are reducing , then there shouldn't be any reason you can't reduce .. I'm always challenging my doctor .. smile I don't like the meds .. And he wanted me on 100 mg of immuran , so we compromised on 75... smile

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