Cross over liver diseases

hi all, I have been diagnosed with both anti mitochondrial antibodies (AMA) (primary biliary cirrhosis) and anti smooth muscle (ASM) (autoimmune hepatitis). Apparently it is uncommon to have both and I will be starting medication shortly Ursofalk and Entocort steroids. Anyone else out there in a similar position and does anyone have any idea whats ahead of me??

15 Replies

  • Hi

    I have also been diagnosed with primary biliary cirrhosis and autoimmune hepatitis too, I also have an under active thyroid. I was told of this quite some years ago and I have been taking azathioprine for about ten years which has kept it steady but have now been put on Ursodeoxychilic Acid as well, Not sure why and what this new prescription will do for me! I guess I will find out in due course as I only started the urso ones today.

  • How are u coping with both? Did you have to make any changes to your life style and have you had any problems with the meds or anything?

  • I cope well considering, although I get very tired and achy at times, especially when I have been overdoing things. I must admit that this new drug my consultant has given me, which I started today, is scaring me, as now I am thinking that perhaps my condition is worsening!! (although my consultant says not). I was first diagnosed with PBC after I had given birth to my daughter. My daughter is now 27 years old and I have not had to have a liver transplant, I also have a twenty three year old son too and a gorgeous 18 month old granddaughter who is my whole world.

  • I find my job is particularly during the summer so had been blaming that on the tiredness. I'm just so lost and dont really know where to turn.

  • Hi NormaM

    I have only just joined this site today as I have always been apprehensive about my condition and was too scared to join any thing before as I thought that it would make me feel very low at reading about my illness all the time! My husband joined a site as he and my son have crohns disease and finds talking to others with the same condition very satisfying! I am sure we will get the reassurance we need from this site and feel that we are not alone in having this horrible illness. I had never heard of it before I was diagnosed. When were you diagnosed? I am sure this forum will be of help to us.

  • only found off for definate yesterday that they were treating both at the same time but knew I've had them for about a month

  • Don't worry about the urso... It's for the PBC. The majority of us are on it. Very few side affects I don't have any it sort of slows its progression down. Lots of info on the PBC foundation site. X

  • Dont be scared of urso, technically its not a "drug" its more like a "supplement". I dont know why u werent given it beforehand, im pretty sure its first line treatment for pbc. I was prescribed urso 4 months ahi and i am pre-diagnosis(yet to have a biopsy). It does wonders to help your fatigue. First week it made me itch but that went away on its own.Within a month of talking it my lft levels were decreased my half!(still a bit high, but slowly going down)

    Best of luck

  • I had my biopsy nearly 2 month ago but only went back to the consultant yesterday for the decision about what treatment was suitable

  • Ohh somehow i misread that you had been diagnosed years ago...maybe im reading to many pbc group comments and I have them all mixed up!:)

  • It is uncommon as I was told by my specialist but there does seem to be a few of us on here. I was initially put on steroids to get it under control( auto hep). Later switched to azathioprine and I will be on that for life, ( specialists words till transplant anyway). Urso is the medicine for pbc that is recommended. Lots of people are on it and cope well with it. It produces very good results if you read up on it. I tried it and everything else that the specialist tried all eventually made me sick or had too many side effects so I'm now on nothing except questran for the itch. Which without that I would be itching so badly.

    Try not to get to stressed about it all as it's a lot to absorb all at once. You'll find hopefully that you can muddle along nicely and take each day as it comes.

    For me being diagnosed was a relief as had been ill for so many yrs and no one could work out what it was. Reading the info and knowing what's happening to me is pretty much same as everyone else on here to a degree helps. Good luck

  • Diagnosed over 2 years and on both Urso & Imuran. Was on steroids for 18 months. No problems at all, doing well, bloodwork always improving. Feel great. Nothing to fear xx

  • I have both PBC and autoimmune hepatitis. I take urso and azathioprine....

    For pain at night I take tramadol

  • Seems to be quite common to have PBC with overlap AIH I was diagnosed with the overlap after a liver biopsy earlier this year, just worried that I have been prescribed so many drugs, now as well as Ursofalk I take steroids and just started immunosuppressants wonder if I should just say no and take a chance the specialist tells me I have no liver damage? All is really confusing

  • I'm starting the Imuran next month. After checking up on it tho, I'm a bit worried, as apparently i will need to get Hep A & B vaccine and flu/pneumonia shots. I'm not too happy as I don't get sick (colds/flus) and I've read that once I take the Imuran, my immune system is compromised

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