Does anyone have autoimmune hepatitis as well as lupus?

I have recently been diagnosed with lupus and already have autoimmune hepatitis (AIH) and wonder if there are others of you who have both disorders? It might be useful to exchange experiences as I find it hard to unravel which symptoms are from what, or even whether some symptoms are side effects of medication. I also have suspected Sjogren's syndrome.

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  • It seems with lupus any organ can be affected by the auto immune problem. One day my kidneys are bad, the next it can be my liver or I can get pains in the chest and tachycardia, etc. the list goes on and very difficult to manage. The cold and wet affect me, too.

  • Thank you for your response Cann. I was in hospital with jaundice and my antibodies showed I had AIH, confirmed after a biopsy. 2 years later I have been diagnosed with lupus, but actually I think lupus preceded the AIH. I am on a cytotoxic drug (mercaptopurine) for the AIH, and wonder if this is damping down some of the lupus symptoms. I recently started taking hydrozchloroquine for the lupus. But I still get stiffness and aching joints, problems associated with dry eyes, indigestion-type pains, fizzing in one foot, extreme fatigue and my hair is falling out. I don't know which symptoms are part of which condition or whether any of the symptoms are caused by medication. None of the doctors seem to know either.

  • I understand how you suffer such symptoms because I suffer, too, B. It is extremely difficult for doctors because it seems each patient is different with different and can have different reactions to drugs. Mine started 13 years ago after terrible trauma and shock. I know from reactions to all the drugs I have taken that I just cannot take any more. My doctor understands this and said that I am one of about 5% of the population who suffers from hypersensitivity and abnormal immune reaction.

    The symptoms are so frustrating and limiting. I, too, lose my hair - I lost most of it at one point and now have patches which I keep cut short and wear a hat or wig. I feel too cold to go without either anyway. I, too, suffer with aching joints to the point where I can't walk at times and dry eyes, too. The pains in my gut are worrying at times, but I do my best to think they will go, but then another pain comes in it's place. I do my best to keep positive and we have a lovely support group in the South West. This helps because we share our problems, knowledge and information. Have you got a good support group in your area?

  • So sorry to hear about all your problems Cann. So far, and as I have only recently been diagnosed with lupus, I am trying to carry on as normal and not let my symptoms impact on my life. I am still working full time but may have to go part time soon as I realise stress is a contributing factor to my autoimmune illnesses, and in fact triggered them in the first place. I haven't joined a support group as yet and don't know if there is one in my area. If i go part time at work I may have time to look into this.

    Keep positive, you are very brave.

  • Good for you, B. At least you know that stress affects the autoimmune problems and you will know if you need to cut down on work.

    I find it good to meet with those who suffer similarly, although in different ways, because there is never any judgement or insinuations of it 'all being in the mind', like it can be with those who don't understand. However, with more and more people suffering some form of ill health these days, more and more people are becoming understanding.

    Keeping positive/being brave really is the only way, but it is hard at times.

    Take care.

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