1. Community
  2. Bones, joints and muscles
  3. Azathioprine

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

Prev Next
  • keifer13826
    keifer13826 cathy67411

    Posted

    Hi my 14 year young son has AIH, he takes 40MG prednisone, 100MG Azathioprine.  He suffers Bloating most nights sometimes during the day, he sufferrs pain in his back around liver area,tiredness.  He has Hyoscine Butylbromide 10mg 4 times a day for stomach pain, he has also been put on omeprazole 20mg twice a day to protect stomach from all his medications. He takes Ibuprofen and paracetamol once -twice a day. One of his Doctors has put him on Gabapentin 300mg three times a day because apparently he should not be in all the pain he has so now they are trying to tell us its in his head,I do not believe this, my son is intelligent and has been a sporty boy all his life, he can not play sports now because of pain and tiredness.  They have also sent him to a Psychologist which has only made him angry every time we go near the hospital for his weekly blood tests and consultation.  My sons bloods have gone down and up and down and up the Docs have decreased Pred and now increased pred and Azath how can they say he has no pain while his bloods are up and down and his little body is so bloated from chest down to thighs and his face.  He has gone from 38kg to 46kg in weeks obviously stretching all his skin and making him self concious and miserable.  Can anyone else back up his pain experiences 
    • hazel50320
      hazel50320 keifer13826

      Posted

      Hi My Son is 16 and was diagonosed in July this year. He is now on 5mg prednisolone from 40mg and 100mg aziathioprine. He has just increased his dose of omoperazole to 40mg a day due to 4 weeks of sickness  and even anti sickness pills  are not working and he is still being sick. He has also suffered from bad stomach pains on his lower right and left side under his rib cage which was tender when examined and he ended up in hospital with the pain but as blood tests showed no infection or appendicitus they said it was must be muscular as the conditionautoimmune hepatitis isn't painful, even though when my son first showed signs of this he was jaundice and had bad pain in his liver and spleen area which was very tender when touched. That pain eased after 4 weeks and he had 1 week of feeling well then the sickness and twisting stomach pains started. After 2 weeks we went to the doctors and he said it was the medication and increased the omoperazole but the liver consuntant said it wasn't the meds it was probably just a virus. After 3 weeks of sickness and tiredness I tried to get an out of hours doctor appointment only to be sent to A& E wherethe Dr  told us  he would need a magic wand to make him better and that it was expected that the meds would cause sickness and tiredness and he would just have to put up with it. He has now started with with the runs as well as the sickness so i'm taking him back to the GP tomorrow as its now been 4 weeks and its heartbreaking to see him having to suffer but its equally heartbreaking when we keep being told there's nothing they can do or making out he's not in pain.
    • Xxxmarie
      Xxxmarie hazel50320

      Posted

      Hi hazel..i was diagnosed with this condition in august...all the symptoms youve described that your son is having is exactly how i feel...i was taking 30mg steriods & 50mg of the azth..my steriod intake is now down to 15mg n still 50mg of azth..everyday i am in pain..like your son..just below the rib cage n really bad stomach cramps, i went to see my doctor few weeks ago n due to go for a scan, touch wood i havent been sick but the feeling is there, i take my azth at night because within n hour im so so tired i could sleep standing up..hope you n your son get some answers of your doctor..let me know how you get on...many thanx
    • hazel50320
      hazel50320 Xxxmarie

      Posted

      Hi Marie, My sons sickness, runs and pain stopped at the weekend and he's been feeling well. He saw his new consultant today and he said it is a common side effect of Aziathioprine and it normally lasts 8-9 weeks till your body is used to it which ties in as he's been ill  9 weeks and he's been on them about 11-12 weeks. He recommended he takes 20mg of omoperazole in the morning and then 20mg in the evening as it stays in your system 14-15 hours so doing it this way will give your stomach 24hours protection. He also said its ok for him to take the prednisolone am and the aziathioprine pm if this helps the sickness etc I hope this helps and your pain eases soon
    • Xxxmarie
      Xxxmarie hazel50320

      Posted

      Hi hazel...glad your son is feeling a lot better..i also take 20mg omoperzole in the morning and my other medication the same routine as your sons but think i may need to start taking more omoperzole at night as thats when pain feels worse n also first thing in the morning when i first wake up...had my scan on friday n said spleen, liver n pantricas looks fine but i feel everything is swollen, should be seeing my consultant this month sometime as not seen him since i started medication n that would of been august...your son will be glad he, s finaly feeling better, just in time for xmas ☺
  • chris2012
    chris2012 cathy67411

    Posted

    Hi Cathy

    i have had autoimmune hepatitis for slightly over a year and am currently taking azathiaprine at a low does with, thankfully, no side effects. Initially I was prescribed budesonide instead of predisolone to manage acute stage. I also had no side effects. Budesonide is now quite commonly and successfully used for AIH and has less side effects than predisolone . You could try discussing this with your Doctor.

    kind regards

    Chris 

  • sheree79988
    sheree79988 cathy67411

    Posted

    Hi everyone,

    I was diagnosed with AIH 27 years ago. I was on prednisone for about 7 years ( which I hated). Then some brilliant drs at Cedar Sinai Medical Center and UCLA medical center in Los Angeles tried treating my AIH as if I had already had a transplant, because in AIH the immune system attacks the liver as if it were a foreign organ. I was put on cyclosporine. It worked. After years of that, I was switched to mycophenolate mofetil which is also working. Since I've had AIH for so long now, my liver is not in great condition but the plan is to keep me going as long as possible before I will need a transplant. I hope this helps.

    • keifer13826
      keifer13826 sheree79988

      Posted

      Hi Sheree79988

      Wow 27 years you have had a big road.  My son was diagnosed 1 year ago at 13 he has been on mycophenolate mofetil for 10 months now as well as prednisone still.  He suffers severe stomach bloat not sure if its part of AIH or treatment.  Doc said there is nothing they can do for him but I was wondering if there may have been a little remedy that you may have found works if youve experienced it?

  • martyn25767
    martyn25767 cathy67411

    Posted

    Hi,  I was eventually diagnosed with AIH about a year ago and put on Budesonide which made me very prone to bruises and skin lesions, also a weakness in my legs. I was weaned off this about 3 months ago and as I was coming off I was starting on AZA which I am now solely on.150mg per day. I am now suffering from severe limb aching and stiffness, is this a common side effect. I have not been back to my consultant.
    • Xxxmarie
      Xxxmarie martyn25767

      Posted

      Hi martin..i was diagnosed in august past with AIH..my medication is prednisone and aza..some days my legs feel like lead & getting really short of breath..i am too still waiting on seeing my consultant since starting my medication..it must be working as have to get blood counts done every 2wks and doctors are really pleased with the results, but like you hate the side affects off pills...i wonder why ppl with this disease gets given different medication...
  • brenda83506
    brenda83506 cathy67411

    Posted

    Hey Cathy67411 i have a few questions regarding AIH. I was recently tested for AIH and my blood test came back on the high postive for the disease and my doctor has done a liver biopsy and which he said everything was ok but I had a little inflammtion. My liver enzymes have been elevated for years now. I had my gallbladder taken out when i was 18. The doctor told me that he did not want to diagnose me at this time with the disease but I have my concern because I have my good days and bad days. I know in the recent year I have became more tired, Nausa, achy all over and pain in the right upper side but this comes and goes. I told my doctors I feel like I am going crazy and that nobody believes that anything is wrong. Can you tell me about your journey to diagnose? I am having all this test done and I don't know how long it will take to figure out if i have it or not.

     

    • barbara02082
      barbara02082 brenda83506

      Posted

      Hi Brenda I was diagnosed after a liver biopsy which confirmed I have PBC / AIH overlap can't understand why your tests have not confirmed your condition I am having trouble getting a straight answer from my specialist as to how my liver condition is I am thinking that I will ask my GP if I can get a second opinion as all my gastroenterologist wants me to do is start a course of immunosuppressants which I really feel so strongly against. Good luck hope you get your diagnosis soon
  • cathy23109
    cathy23109 cathy67411

    Posted

    My liver enzymes were elevated and my regular doctor decided I needed to have further testing.  My gastroenterologist ran a host of tests and I came back positive for Celiac Disease, later confirmed by biopsy in December 2015.  I went gluten free and was told that Celiac was probably the reason for my elevated liver enzymes.  Two months later the enzymes were even higher than before I went gluten free.  My doctor ran more blood work and I now came back positive for AIH, which I didn't two months before.  AIH was later confirmed by liver biopsy.  They started me on 60 mg prednisone and 150 mg of Azathioprine.  I was a crazy energetic person on the prednisone until I started to taper.  That was just horrific.  I finally tapered fully beginning of June 2016 and now only take Azathioprine.  Unfortunately about a month ago my liver enzymes started to be elevated again.  I have read it can take 6/9 months to know if AZA is working or not.  My big issue with AZA is I am super nauseated and fatigued.  I also have zero appetite and when I do get hungry I feel famished but nothing sounds good to eat and when I do eat I can only eat a few bites.  I am a littler nervous what happens if it is determined that AZA isn't working.  I really don't want to take prednisone forever because believe it or not it is said to be harder on our bodies than the chemo drug AZA is. 
    • cathy67411
      cathy67411 cathy23109

      Posted

      Hi Cathy,

      I recommend you ask your GP about Budesonide. It is a steroid but less side effects than prednisalone as its processed in the gut.

      Fingers crossed the Azathioprine works for you though!

      Cathy

    • nancy7777
      nancy7777 cathy23109

      Posted

      HI Cathy

      I was diagnosed with CD in 2008, Liver enzymes spiked last fall, tooks meds, decreased it.  The liver enzymes spiked again in April of this year and I was diagnosed with yes.... you guessed it.  AIH!!   UGH!   I am on Prednisone, and Imuran.  Starting the Pred wean.   Would love to exchange information.

      Nancy

    • cathy23109
      cathy23109 nancy7777

      Posted

      Would love to exchange info. I hate to say it but tapering off of prednisone was the worst I have ever felt. Take the taper really slow and I hear that helps.
    • nancy7777
      nancy7777 cathy67411

      Posted

      I asked my doctor about Budesonide after researching several different meds and he told me that insurance wont cover that med unless you are diagnosed with Crohns.   This is just what my doc told me.  I thought it looked like a good med too.  
    • anne68592
      anne68592 cathy23109

      Posted

      Hi Cathy

      I have had AIH for almost 2 years. Was on 40 mg of pred. I agree with you. I got every side effect on the prednisone. My joints were sore, I was exhausted but felt like my body and mind was on turbo charge 24/7.

      I also one day went to hospital cause I was getting blurred vision and feeling funny. Come to find out another side effect was diabetes. Well I was in disbelief how one drug that was supposed to help one disease cause so many issues. Had to go to another specialist for diabetes and test my glucose 6 times a day and take insulin 3 times a day.

      I was very happy when my specialist called and said I could start the imuran and wean off the pred. But weaning off the pred. Made me feel even worse,and also having to recalculate my insulin intake as I weand off.

      I'm glad to say I'm off pred. I take 100mg of imuran. I am also curious about hearing about flare ups. The last couple of weeks I've been feeling icky at night and more tired.

      Would also like to hear if anyone is having trouble loosing weight while on imuran.

      Anne

    • margie321
      margie321 anne68592

      Posted

      Hi Anne, diagnosed in February 2016 , after my second flare up .. Had a liver biopsy the first time in August of 2015 and tons of blood work but everything was inconclusive .. my blood is tested 1x a month now, tapered down from 1x wk , I've been on 75mg of imuran for 3 months ,they started me on 50 then increased me to 75mg, I guess to slowly get used to the drug..It occasionally gives me an upset stomach . If I feel funny, I just get my blood drawn and by the next day I see what my levels are.. My symptoms of a flare up ; first sign fatigue, tired , urine gets dark, then nausea , my blood pressure drops.. My liver enzymes jump up to 3000.. it seems like from my research , there isn't a typical case .. We're all kind of different.

    • anne68592
      anne68592 margie321

      Posted

      From reading everybody's comments it seems we are all different with AIH.

      I get blood work done every 2 months. And at my two year mark they will do another liver biopsy. It has definitely been a journey.

      Have you tried taking the imuran at night? That is what I do.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.