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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

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  • barbara02082
    barbara02082 cathy67411

    Posted

    Hi Cathy, very interested to read your comments I was given Azathioprine which made me really sick and feeling generally rough for about 3 weeks after I stopped them, my ALP & ALT levels went sky high when I was on them, just 3 days after stopping them my levels dropped by half, this has now put me off any Immunosuppressants as I am nervous that I may react badly again,the only down fall is that I am to remain on Steroids (which seem to agree with me) although the dosage has now been reduced to 7.5mg daily. You seem have had the opposite reaction to me with the treatment. My AIH was only diagnosed last year as an overlap with PBC but usually I feel well, I have noticed that if I sit and take things easy I feel worse as the day goes on, so try to keep active as much as I can mind you I am considerabley older than you. I have heard that the hospital in Birmingham is really good so you are in good hands. Good luck. Regards Barbara

     

  • janet06428
    janet06428 cathy67411

    Posted

    Hi kathy I have autoimmune hepatitis too. Was diagnosed 9 months ago. I've been on prenidsolone ever since! Can't seem to get off it without having flare ups. Also taking 100 mg of azathioprine which I've been on for 16 weeks. Weaning down my prenidsolone again slowly. Hopefully if I can get off steroids lose my moon face and feel normal again . The azathioprine seems to be working well . 
    • cathy67411
      cathy67411 janet06428

      Posted

      Hi Janet, I was on combined Prednisalone and Azathioprine for just under a year before I could start weaning myself off the Prednisalone. I hope that you will be able to come off the steroids soon. I find that 50-100mg Azathioprine is perfect for me and touch wood I haven't had a flare up for over 5 years now. Luckily once your body gets used to the medication it's a disease that can be very easily managed. I find that staying positive also helps a lot. Do you mind if I ask how old you were when you got diagnosed? They think that the disease is linked to hormones... Would be interesting to know what on earth triggered it in the first place. Cathy
    • amy_57955
      amy_57955 cathy67411

      Posted

      I have AIH too and was diagnosed at 43, now 57.   They told me given the extent of the damage to my liver I may had this since I was 15 yrs old .  I suffered from anxiety asa child and into adulthood. I'm wondering how much panicattacks and anxiety played a part in triggering AIH.   Anyone else have the same struggles with anxiety? 

    • joanne32096
      joanne32096 amy_57955

      Posted

      I have just been diagnosed with AIH and have also had problems with anxiety. After 10 years of taking anti-depressants, I thought it would be ok to wean off. Big mistake! I suffered from anxiety for several months until I resumed the anti-depressants. It took a while to get the attacks under control. Then, within a few months, I have this new problem. I have wondered if anxiety attacks could trigger this.

       

  • janet06428
    janet06428 cathy67411

    Posted

    Hi,I was 62 when I started with the condition. A complete shock! Just retired from work. I had an ear infection and was prescribed fluxocillin and ibuprofen, I had 2 courses of these straight after each other. This was my trigger the consultant said. I feel well most of the time, had one flare up at Xmas .im down to 20 mg of prenidsolone now from 40. Have bloods taken weekly and consultants Appts 4 weekly. Apparently my immune system attacked my gall bladder first. Then started on my liver! I knew something was wrong  when I turned bright yellow! Waiting to have my gall bladder removed but surgeons waiting until my steroids finish. Having to take it really slowly now reducing steroids as when I get to 10 mg I get really horrible sickness and liver discomfort. I think I will be reducing in 1 mgs from now on. Yes I'm a positive person and tackling my condition head on, there were women in hospital far worse than me! Hope you are well . And nice to hear from you. Not many people know about this condition. Do you find it a pain having to explain what's wrong ? Even to professionals? As soon as you mention liver people think you are a raging alcoholic . 
    • cathy67411
      cathy67411 janet06428

      Posted

      Haha yes I find it really annoying. I feel like I'm instantly defending myself!! Nobody understands enough about the condition, not even the professionals. Its interesting that your doctor told you your ear infection/treatment was a trigger.. i was told it was a hormone imbalance. i guess we just need more research into how to reverse the immune system from attacking our own organs. It's great to hear from you too, hope things start to get better for you soon! Take care, Cathy
    • keifer13826
      keifer13826 cathy67411

      Posted

      Hi Ladies we got told our son possibly got AIH from being in contact with CMVirus which he tested positive to we dont even know what that is.
  • helen96579
    helen96579 cathy67411

    Posted

    Hi Cathy, I'm from Australia, saw your post.  I was diagnosed with AIH about one month ago, took the drs a loooong time to sort it out. Now on Prednisilone and AZA which I have just commenced.  I want to have some teeth removed, before the immunosppresant really kicks in.  The specialist said would be ok, but the dentist said to double the dose of prednisilone for the day of the extraction. Don't know what to do now.  I'm inclined to believe the dentist at this stage. Thank you for your post.  There's not a lot known about AIH in the general community.  I find the work hepatitis scares people off a bit, they think "infection" and catching! Hope we can all keep in touch.
    • cathy67411
      cathy67411 helen96579

      Posted

      Hi Helen, thanks for getting in touch. Sorry to hear you also have AIH. It's a very complicated one, I know what you mean about the word hepatitis. I now just tell people I have an autoimmune disorder, where my own immune system attacks my liver. I would be wary about doubling the dose of Prednisalone, it's not one to mess with as it can have side effects. I have had lots of work done to my teeth, wisdom teeth out whilst being on AZA, no problems at all. I would stick to your specialist advice. Hope it all goes well, having teeth removed is never fun! Lucky you being in Oz, would love some sunshine right now! England is cloudy and rainy most of the time!
    • helen96579
      helen96579 cathy67411

      Posted

      Thanks Cathy, no its been too hot here in Oz this summer -  not fun at all! 

      Whilst on that subject, the pahrmacist told me AZA makes one sensitive to sunlight. Guess this would be ok in the UK, but here it could be a problem as I see a side effect of AZA is skin cancer. I'm still a bit nervous about it all, but good too know you have not had any trouble getting out teeth.  Maybe I'm being overcautious. 

    • BeckyRee
      BeckyRee helen96579

      Posted

      Hey Helen!

      I'm from Australia as well and have only been diagnosed this past week after a scary 3 months (1-2 months of which were in hospital) I would love to chat to you about all of this.. I'm so in the dark and extremely scared about it, I'm 30 years old and its been a crazy bumpy road to get here.. How are you going now after 12 months? You might not get this as it's been so long.. I hope you're going well :-)

      Bec :-)

      (From Sydney)

    • margie321
      margie321 BeckyRee

      Posted

      Hi Becky, I was just diagnosed this month with AIH .. It's my second flare up , I had a week visit in the hospital in September 2015 they couldn't for sure that it was autoimmune at that time , I wasn't given any medication and my levels and liver function went back to normal on their own ..they said it could be a "virus " that attacked my liver .. I had a liver biopsy, MRI, CT scan , ultrasound and still they couldn't diagnose me .. Until 2 wks ago having a second flare up ..and because of my symptoms and blood work only , they concluded it was AIH .. I'm on 40mg of prednisone for now and they want to start imuran (aza) I wish there were alternatives.. Do you know of anything else?
    • barbara02082
      barbara02082 margie321

      Posted

      Hi margie321 I have had PBC since 2006 and 2 years ago after a liver biopsy was diagnosed with AIH as well I have reduced my steroids to just 5 mg daily and stopped taking Aza after just 3 weeks when they made me so poorly and it took 5 weeks to get back to feeling well again. My ALT & ALPs are steadily going up and my gastroenterologist wants to put me on immunosuppressants again which I refuse to do. There is a lot of cancer in my family and I also see a lot of my grandchildren who are always poorly with something or another so don't feel that I should be killing off my immune system, so I have decided to stick to steroids and take my chance. I have to take so many drugs that will effect my liver readings anyway, and cannot see the point of taking something that makes things worse, 
    • chris2012
      chris2012 BeckyRee

      Posted

      Hi BeckyRee

      i hope things have settled down for you. It is scary when you are first diagnosed. I have had AIH for 2 years now and am doing well on imuran. Didn't have prednisone but had budnesonide instead which had less side effects. The research shows that treated AIH has a great prognosis no different from the rest of the population.

      I'm from Australia too.

      cheers

      Chris

    • nancy7777
      nancy7777 BeckyRee

      Posted

      Hi BeckyRae-

      Newly diagnosed 47 y. o female with AIH too. Wold love to share stories and expereinces if you are interested. 

       

    • noreen_65192
      noreen_65192 margie321

      Posted

      Hi margie321,

      Not sure if you still check this but was wondering how you are getting on, your diagnosis sounds very similar to mine, I've just been diagnosed, they are still not 100%, it's mainly based on my blood results also.

      Thanks.

    • noreen_65192
      noreen_65192 BeckyRee

      Posted

      Hi Becky,

      I'm recently diagnosed and just seen your posts and wondered how things were going for you? I'm in my early 30's and have also like you had a few scary months leading up to this diagnosis also they are still not 100% but have out me on medication to try and regulate the liver levels.

      Thanks

      Noreen

    • margie321
      margie321 noreen_65192

      Posted

      Hi Noreen , I seem to be doing fine .. my blood has been normal .. 75mg of Imuran which does upset my stomach. I get my blood drawn once a month now .. how about you ? Is your levels on a steady decline ? It does go down slowly .. it takes a few months to get them to normal .. for me, anyways. I believe that this could be connected to the food we eat .. GMO's and all the other things they do to food.. I've never met so many people with some sort of auto immune .. everyone I talk to knows someone or has it themselves .. why isn't anyone talking about that ? They say this is rare , but is it ? As I research, Our food in the USA isn't regulated like you would think , they don't need to say if the food has GMO's .. and most have it .. I've been trying to do as much organic as I can .. but somehow I feel the damage is done ...

    • noreen_65192
      noreen_65192 margie321

      Posted

      Hi margie, 

      Thanks for your response. Pleased to hear you are doing fine. Mine are on the decrease but still a little high (200) at the moment but I'm only going into my third week on prednisolne (40g) which they are reducing to 30g in the next two weeks. I have no symptons and feel fine so it's so hard to get my head around it all.  

      I've been on a health kick over the last 4 weeks of clean living, no processed food in the hope this will also help but no idea if it will. It's giving me a focus and helping me not put on weight with the medication so far anyway. Do you find the organic food is helping? 

       Presently Im not drinking but wonder in the future when hopefully the levels are under control I'd love to be able to meet friends and enjoy a glass of wine and not feel like I can't but don't know if this will ever be possible or a cocktail on holiday.....

    • margie321
      margie321 noreen_65192

      Posted

      I have a couple glasses of wine occasionally , a few more this past Saturday then I should have smile my doctor doesn't want me to have any.. but I can assure you , this disease has had nothing to do with drinking ..my entire life I have rarely drank , contrary to what people think , when you tell them about our disease .. I'm sure their first thought is that were fall down drunks ..lol .. obviously not the case .. I had a Bachlarette party a month ago in Miami .. I indulged a bit smile and had my blood work done when I got home and it was normal .. I'm not going to say drink up, but be reasonable and when you get to normal again , and you will..smile an occasional glass of wine will not hurt you , in my opinion .. everyone is different.

      March 2016, I had my 2nd flare up .. I changed my eating , eating as clean as I can .. I have been fine , I don't know if that had anything to do with it , but it doesn't hurt .. I'm sure smile

    • noreen_65192
      noreen_65192 margie321

      Posted

      That's good to know. It's just so hard as I don't know how much will change and also it's so early on I feel like I have a long way to go until I'm able to relax a bit. My friends were trying to oranise a weekend away in January to help with the winter blues just feel like I have to exclude myself because I just don't know what's instore. 

      Thank you for sharing, it's really helped. 

    • dcgriffon
      dcgriffon nancy7777

      Posted

      Hi just found this msg board. I found out today I am probable for AIH. Pretty bummed about it. I am 53 female in Seattle WA. Would love to talk to someone about it. Hopefully you will see my msg. I have not started any meds yet. But am really hesitant to start them. They thought it was drug induced. But they are not sure now. May have to start the drugs soon. I really miss alcohol though. Love drinking beer and wine on the weekends. So depressed about this. Let me know if you want to chat some time.
    • nidia53744
      nidia53744 dcgriffon

      Posted

      How you doing?  I am on week 4 of prednisone  30 mg. And Imuran. Eating good and scared and depressed. 
    • christine06248
      christine06248 dcgriffon

      Posted

      Hi,

      I just found this message board and saw your post. I'm also a 53 yo female, recently diagnosed with aih. They want me to start taking meds. I'm very worried about doing so. I'm wondering if you have taken meds and how are you doing?

      I hope you are well.

      Christine 

    • wendy16928
      wendy16928 dcgriffon

      Posted

      Hi dcgriffon, I was just diagnosed myself with AIH and am currently in the process of getting a Dr appt. I am also wanting to see a physician in Seattle who specializes in this...any recommendations?? 

      I’m 53 yrs female and sooo scared right now. I think I’ve cried  so much over this that there’s probably no more tears left in me.  Any information would be appreciated. Thanks Wendy 

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