PBC/AIH overlap, anyone else with this diagnosis and on Steroids plus immunosuppressants, I would be interested to hear from you

I am about to start my immunosuppressants next month and am a bit concerned about what to expect the specialist has explained the pros and cons but I would be interested to hear from anyone experiencing this medication whilst I realise that we are all different and react thus it would be helpful to hear from you

7 Replies

  • I was on steroids for 18 months and am on imuran since October 2012. I have improved so much it's fantastic. I feel wonderful. I have really very few symptoms. Also on Urso, calcium & a gastro tablet just to mind my stomach from all the Meds. Also have osteoporosis so have a tablet every month for that too. I gained no weight while on the steroids surprisingly and although I can't say I had any side effects while on them, I do feel great now that I am off them 6 months. But bottom line they work. Back to Consultant in August (had a six month gap) hopeful that all will be fine with bloods etc but I do feel well and lots if energy so would be surprised if showed anything bad.

  • Thank you Junolee, a great positive reaction has made me feel a lot better about things. Hope you get good results in August. I am 3 months into Steroids with a bit of weight gain, but I do tend to yo yo also take Ursofalk, calcium & vit D, plus tabs for high cholesterol & high BP as well as gastro-resistant tablet for my stomach should start to rattle once I start immunosuppressants maybe I should blame the weight gain on all the tablets. Good luck and thanks

  • Hello, can you tell why r u on immunosuppressants?


  • I am getting ready to start the steroids and here in a month I think the immunosuppresents. I am curious as well.

  • I was firstly diagnosed with AIH. I was prescribed steroids for 2 years and I put on loads of weight, later on azathioprine, The azathioprine did not work for me according to my blood tests and I was reassessed. I was diagnosed as PBC/AIH over lap. I have responded well to Ursodeoxycholic acid and now believe I just have PBC. With the steroids I felt great, all the pain and itch subsided, didn't sleep much, but had a big appetite. I just felt ill with the azathioprine, but I can't explain how. As you say everyone is different and I hope all goes well with you.

  • Thanks Tracylouise, I have just completed my first week on Aza and so far no side effects, I have a nice moon face from the steroids at least it fills out my wrinkles. All seems a lot of drugs to take as I don't seem to suffer to many symptoms of either ailments. Will keep on taking the pills till I see the specialist at the end of August then see if I can reduce some meds 4 Urso, 3 prednisone 2 adcal plus tablets for high blood pressure & cholesterol just seems too much. Hope you keep improving what happened to your AIH

  • Hi MrsworryGuts, So pleased to hear your meds are working great. Im confused to whether I have AIH, but I'm not worry about it unless my blood tests show abnormality again.

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