PBC/AIH overlap, anyone else with this diag... - PBC Foundation

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

MrsworryGuts profile image
7 Replies

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

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MrsworryGuts
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7 Replies
Junolee profile image
Junolee

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.

MrsworryGuts profile image
MrsworryGuts in reply to Junolee

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

sap7649 profile image
sap7649

Hello, can you tell why r u on immunosuppressants?

Sap7649

breekins profile image
breekins

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

Tracylouise profile image
Tracylouise

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.

MrsworryGuts profile image
MrsworryGuts

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

Tracylouise profile image
Tracylouise

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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