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Autoimmune hepatitis.

Posted , 7 users are following.

AnnIsh
AnnIsh

I was diagonised with autoimmune hepatitis 3 years ago. This was caused by a virus which attack my immune system and in turn affected my liver. I had blood reading over 8 and 900 which should have been about 20 or 30. I was started on steroids, (15mg per day). This brought my blood reading back to normal. Then the steroids were reduced to 10mg per day. and the readings shot up to over 300. The steroids were increased to 30mg per day and azathioprine was also given, (doseage 150mg per day). This tablet enabled me to lover the steroids, and I am now down to 10mg per day plus the 150mg azathioprine. I just hate the way I look. I have not gained a lot of weight, but look and feel puffy. My doctor has told me that I will be on steroids for the rest of my life. I am 65 years old.

1 like, 6 replies

6 Replies

  • cathy67411
    cathy67411 AnnIsh

    Posted

    Hello AnnIsh, I wanted to write to you to say I also suffer with autoimmune hepatitis. I was diagnosed when I was 14 years old. I am now 28 so ive been living with this disease for half my life. I have been very lucky as now i am only taking 50mg of Azathioprine a day. I used to be on steroids and know how you feel, i had to go through my school days with a big 'moon face'. However things do get better and your body will respond to the treatment if you remain positive. I hope that you can move to a lower dose of predislone soon if not stop it all together.
    • helen96579
      helen96579 cathy67411

      Posted

      Hello Cathy, thank you for this encouraging blog. I have just been diagnosed with AIH and am going on imuran.  I have been reading up on this drug.- it looks dangerous to me.  Wonder about milk thistle therapy as well.  Have you heard of anyone using alternative treatments whilst using Imuran -  not as an alternative therapy but as a support to alleviate the immunosuppressant efects?
    • keifer13826
      keifer13826 cathy67411

      Posted

      Hello Cathy, my son has been diagnosed with autoimmune hepatitis and he has just turned 14.  His Doctors tell us its very rare for boys so he is quite special to his team of Doctors.  My son suffers alot of pain all the time, joints, stomach,sometimes in his back.  As his Mum I am beside myself with worry constantly not knowing what is happening inside his body and the feelings he is going through.  He is on 60MG prednisone and 1 week now on Azathioprine 50MG.  My son Keifer has had to take alot of time off school because he hasnt got out of bed, the pain and tiredness seem to affect him, he has been an athlete all his life and his new life in bed is a struggle, we try and be positive it is so hard to give him incouragement when all he wants is to be put down (his words) Reading your post showed me that life will get better for him, can you tell me if your energy levels have lifted.  Keifer does not eat alot of foods as everything makes him feel yuck, and being young is easily put off.  He has got the Moon Face from his steroids on them 5-6 weeks now.  Any advice you can send Keifers way on maybe what you experienced getting this nasty so young would be very much appreciated.  Keifer has weekly blood tests and has had numerous scans, xrays and a liver biopsy,hospital stays and visits, all the tests are mind blowing for me as his Mum, and having to watch him go through this not to mention how he must feel.  thank you to this site for being able to vent.
    • cathy67411
      cathy67411 keifer13826

      Posted

      Hi, very sorry to hear about your son being diagnosed with AIH. It is not very nice at the beginning but I promise it does get better if you fight it and stay positive (which is easier said then done). When reading your message it reminded me of what I went through, what Keifer is going through now is exactly what I went through and felt. I'm a farmers daughter who was very active on the farm growing up, helping with the lambing, helping my mum run her livery business, riding out the horses etc. So when I was diagnosed my world was turned upside down, I also experienced suicidal thoughts, because the doctors don't really understand the condition you are not sure what you are in for! I've spent the last 14 years fighting it on my own as I don't know anybody else with this condition so it's difficult to "compare notes" as to how I should feel etc. But I started to feel better once I came off the steroids, they are just awful, I was always exhausted and bed bound too. I can't remember when I came off them completely but it was over 10 years ago. I get by on 50mg day of azathioprine now, I have no pain, lots of energy (competed my first half marathon in May & I've signed up for the London marathon next year), I'm working full time as a commercial manager, supplying chicken to Tescos and Nando's. I also bought a horse last week!! I'm saying all this because there is hope (my horse is called hope too), life does get better, Keifer is at rock bottom now, but it doesn't get worse, it only gets better. Get those steroids reduced down (gradually) as soon as his bloods improve and hopefully the Azathioprine and positive mental attitude will put Keifer back on track (literally-good luck with those athletics)! Be strong and keep fighting Keifer!! X
  • trudy98661
    trudy98661 AnnIsh

    Posted

    HI Annlsh.

    I was diagnosed with AIH, 6 months ago when I was starting treatment for hep c. It was a stressful day to say the least!

    I am now 12weeks post treatment for HCV and have been negative for 12 weeks (which is considered cured).

    I get colds at the drop of a hat and have developed a condition called oral lichen planus which is chronic. It was probably brought on by the hep C or treatment. Right now my liver is being monitored every 6 months but I am scared. I have 2 teens to care for as well as a 77 yr old mother who has serious medical problems. I am 49. 

    I don't have answers for you but wanted to say that I think you are very brave and you're not alone.

    I understand treatment options are limited but perhaps eastern medicine is worth a look into.

    Along with a positive attitude, I plan on being very careful with what I put into my body as well as doing a cleanse, immune boosters and looking into acupuncture and Chinese medicine.

    one thing at a time ; )

    All the best

  • angela_38764
    angela_38764 AnnIsh

    Posted

    hi my foster daughter is 11 we are off for a biopsy to kings next week as they think she has auto immune hepatitis she became jaundas last week as we ended up in hospital we are home while we wait for our appointment at kings with antibiotics but shes very tired quite a lots low energy appetite not great its such a worry she also gas kidney problems too but this is out weighing that right now

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