After having a liver biopsy done recently it has now been confirmed that I have PBC although with no evidence of copper associated protein

The biopsy also showed AIH. I am being treated with Prednisolone 80 mgs daily for I month then reduce to 60 mgs for a month with the anticipating need to immunosuppress there after. All seems very severe. My ALT on last blood check was 118 I am due early May to see the specialist and more blood results anyone out there under similar position. Any advise/shared symptoms would be helpful

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  • Hi, Also have pbc and aih.

    Only being treated for aih but you seem to be startig on the same regime. Starting on lots of steroids and I felt great! With that amount I took them after breakfast and found I needed a substantial meal to avoid nausea. As my steroids tapered so did breakfast. Then on azathioprine, immune suppressents, with two steroids.

    They kicked in quickly and my lfts went back to normal and I have maintained that for 7 months now. Fingers crossed that will continue. Now only on one steroid a day also but hoping specialist will kick that out on friday when I see him.

    Taking calcium and vit d as well. Find my joints ache and are hot which apparently has something to do with vit d deficiency.

    Also fatigue which is a struggle, although with longer daylight and re jigging my life is manageable. There doesnt seem to be any help for that.

    The azathioprine worked so well, my immune system is pretty suppressed so tend to catch all that is going around and as I worked with 5 year olds in a school found this just wasnt good for me at all. It gets depressing to be constantly ill so have retired from that job. Busy studying right now. Looking at it all as a chance to reavaluate my life and my direction.

    Have become a bit paranoid about any change in health, bumps lumps etc but i think that may be normal. Bowel movements have changed also.

    I hope this helps, its only my own experience. Good luck

  • Thanks for the reply I found it really helpful, at times I find it a worry about the immunosuppress part of the treatment as I also have problems with chest infections. I am having bloods done on Friday before I see the Gastroenterologist to see if the steroids have helped my ALT 118 was a worry last time so it will be interesting to see if that has improved.

  • If its any conciliation my alts went to 250. The specialist said some people go into the thousands.( think he said diabetics as an example) So try and think that you are lucky it was caught so early, aih is aggressive - especially compared to pbc.

    Just recovering from bronchitis, and am also susceptible to chest problems but this was my first. Get a flu jab each season also.

    Taking the immune suppressents in my opinion is the lesser of two evils and with any luck aftet two years remission.

    Try not to worry too much and that you are not alone :-)

  • I was relieved to hear the ALT news I wish these people would explain more it is so much to take in during the consultation now I have a good list of questions for him to answer. Could you tell me do you drink any alcohol?

  • On the weekend I will have a glass of wine. I know that this seems to be an explosive topic but my specialist said daily limit and my reasoning is that one or two glasses a week isnt going to kill me. Any more than the strain on the liver of taking over the counter painkillers for example.

    We have a small vineyard and have never been big drinkers but I do enjoy a glass with a meal. My philosophy is to still enjoy life as much as I can, to be more aware careful with what I put in my body but not to make it a miserable life. Its bad enough having this illness :-)

    Took my husband to my first consultation and he took notes, as most of what he said went in one ear and out the other as I fixated on the negatives! Having my third visit tomorrow and have a written list of more question....

  • My thinking as well although in my youth I was quite a big drinker now I only have a couple of glasses of wine at the week ends if I want, also on holiday or special occasions but hardly anywhere near a fraction of pre PBC/AIH times. I now have quite a few questions to ask my consultant next Thursday thanks to your help. I will let you know how I get on, please do the same after your consultation. I am 65 by the way and live in West Yorkshire we don't have any meetings in the area PBC foundation did start a meeting in Leeds but that folded.

  • Those were the days :-D

    I'm 47 next week and in Northamptonshire but decamp to Italy in the school holidays- need the sun.

    Will let you know after tomorrow. Have a good weekend

  • Lucky you I love Italy, good luck for tomorrow I look forward to hearing from you, maybe a glass of wine on Bank a Holiday Monday

  • hey,

    Had my visit but didn't see my specialist as he was called out during clinic to emergency. But the specialist I did see was really good and answered all of my questions. Another 2/3 years on medication then we take biopsy etc to see if we trial going off the azathioprine. bit disappointed that it will be that long. All my levels are now in the normal rage so the liver is responding well.

    go in with lots of questions!

  • Great news,sometimes an alternative specialist is more helpful, I have found they seem to be more interested in you. 2/3years does sound a long while but at least you are going in the right direction. Will let you know how I do tomorrow I have lots of questions to ask. I have just reduced the steroids to 3 x 20gms a day for a month so I am early days still with them. think my next drug will be azathioprine so let's hope I respond as well as you have. Good for you, maybe a glass of wine to celebrate!

  • Good luck today.

  • Hey. How did your visit go?

  • MrsworryGuts

    Hi, just found out why you probably didn't get my last message, think I deleted it rather than send it. Anyway like you I saw a different specialist who answered all my questions. My ALT level is now 27 and all my levels are normal! Steroids have now been reduced too. Next step is immunosuppressants which I start when my TB blood tests come back which is the bit I am worried about, if you could give me any tips on that although I know we are all likely to act in different ways to azathioprine. Hope you are feeling ok, I am in a feeling tired mode at the moment. Maybe it's because the sun has not been out for a few days. Anyway look forward to your reply.

  • Hi,

    that is great news!

    Wow I didnt realise you were also being tested for TB. Its funny how that seems to be a disease that is rearing it head again. Why are they testing you for that as well?

    The azathioprine seems to be doing its job rather too well I think. side affects I am not sure of. My bowel seems to be playing up without going into too much detail- very gasey, sludge. Not sure if it is the medication or something else so am having an endoscopy on the 20th of june. Blood test for coeliac and also check my vit d levels for the joint pain/heat. My white blood cell count is very low at each blood test so my immune system is pretty weak. When I worked in year one at school I came home every day with a sore throat and was off in total a week each term at least due to illness. I found instead of working through something I would have to stop and rest otherwise I just didnt recover. Now that I have finished working and am away from small children I havent been ill at all which is much better.

    Still get tired but can manage it better.

    The sunshine seems to perk me up so take the dog for a hike when its out but the specialist said the sun and azathioprine dont mix so its covered up and sunblocked- which I hate. My fatigue is also not as bad now its warmer and sunny. Last weekend was great, warm, sunny just perfect, today its been chucking it down but the first bit of sun and will grab the dog and head out- the joints are still a bit uncomfortable so a walk helps.

    Its hard to tell what is the illness and what is the medication. Always take it with food, like the steriods as you can get nauseous. I take steroids in the morning and the aza at night.

    I think I had more effects from the steroids, weight gain and apparently I was getting hairier ( face) although my husband and daughters didnt tell me that until my steroid intake had reduced and it had disappeared.

    I hope the sun came out for you yesterday and you managed to get some to help the fatigue, but I am really glad your LFT are back in the normal range. Let me know how you are getting on. Sarah

  • Hi Sarah thanks for your reply we seem to have so much in common even down to the sun loving.did a bit of a yuk at avoid sun with Az which I haven't started taking yet. Still awaiting TB results? Not sure what that is about. My bowels are a bit of a problem always tend to be a bit constipated so Syrup of figs and liquorice daily, I tried a healthy fruit intake diet to try and help but ended up with the most horrific spasms in my chest which turned out to be indigestion so back to square one with the diet. Starting to look a bit like a Gerbil with the Steroids but at least it puffs out the wrinkles? I do Pilates a couple of times a week which seem to help with my aches but like you not sure whether it is medication or complain that is the problem. Like you it is poring down here in Yorkshire today but I do make the most of the sun when I see it. Enjoy bank holiday and please keep intouch. Regards Barbara

  • By the way good luck with the endoscopy is it your first?

  • Sun?whats that? Found that I am needing a nap most cloudy days beginning to think I am a toddler going down for the afternoon sleep.

    This will be my second endoscopy but I just want to get to the bottom of whatever is going on with my body. Am paranoid about getting cancer.

    Pilates is good to do, I live with fitness freaks so my youngest is busy building a fitness regime for me...thankfully she is off to uni in September. I prefer walking to anything else and like you it helps with the joints. The girls bought me a heat pad for mothers day that I wrap around whichever joint is worse on ready bad days.

    I hope the tb results come back negative, think this aih etc is enough to deal with. Good luck with the weather over the next couple of days as it looks like yorkshire is going to get a dumping!

    Sarah

  • Hi Sarah haven't heard anything from you for a week or two hope you are ok. Regards Barbara

  • Hi Sarah, well got a call from the gastroenterologist to say my TB results came back all clear, still not sure what that is about but didn't think to ask at the time of my appointment. Anyway now all clear to start the immunosuppressants, still a bit concerned about how I will feel on them but will hit it with a PMA and hope I get some good results, I am sure they scare you more than they need to,I know they have to warn of the side effects but it is a lot to take on board and like you I worry about what may attack my body next I will start them on 6 June as I am away until then. I have also been told to try a GF diet as it can help according to a few people on the PBC site. I left Yorkshire in the sunshine on Saturday and have spent most of the week watching the rain fall daily in Hertfordshire. We have a nice week planned at a Warners in Somerset to relax to which I guess I will need after a week with my lovely grand children. Hope you get some nice weather to ease your aches you seem to be suffering more than me with those. Take care and please keep in touch. Regards Barbara

  • Hi Barbara, I am so sorry I didnt get the notification of your reply and so hadn't checked. I am so pleased that your TB results were negative. How are you getting on with the azathioprine? How was your break away did you get to relax and rest? The weather so far this summer has been awful , we are off to Italy for a few days this week mainly to cut the grass in the fields and garden but have just seen its 33c down there so my body will be in for a shock.I have been doing really well esp as it seems my white blood cell count is getting better now I am not exposed to so many germs. It may be easier , if you are interested, to go swap email addresses? I need to see if we can do that in a private way off the forum.

  • whoops didnt finish. Regards Sarah

  • I have decided and sent a letter to the specialist to tell him that I will start the AZA treatment next month as we have a cruise booked for 11-18th July and would need to be a home for my bloods etc plus I don't want to be early stages of a new drug when I am away. You are doing well and a great inspiration to me and I am pleased that your progress is improving. Well done, enjoy your break in Italy, where will you be? My email is barbara@remmers.me.uk if you send me a mail I will pick up your address, although mine may go straight into your trash. Enjoy the sun. We had a good break but too much food of course all recharged after a week with the family. Not feeling tired except tired of the weather.

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