Steroid versus immunosuppressant

[Biddyb]

I was diagnosed with PBC around 2006. And put on URSO, about 4 years ago my specialist thought that I had AIH overlap and put me on prednisone a liver biopsy was not conclusive and after a couple of years he recommended Immunosuppressant which made me really ill and took 5 weeks before I felt better my ALT and ALP levels yo yo. In October of last year I got a transfer to an hospital in Manchester as I felt that I was getting no where with the consultant I was seeing. I have been weaned of Steroids and at the moment waiting for my ALT to reach 120 when I will need to have another liver biopsy my levels have gradually increase since stopping steroids the outcome is to be put on immunosuppressant which I refuse to take. Anyone have any input your thoughts will be most welcome. I would rather take steroids which seem to keep things in order than loose all my immune system therefore opening me up to all sorts of illnesses

[Hidden]

This concerns me too. Is this how we get other diseases

[Belliver]

Hi Biddyb; sorry to hear you going through this upset. Perhaps you could ask for a referral to a hepatologist who has a particular interest in PBC/AIH overlap & get a second opinion. One specialist I saw a few years ago thought I had overlap of AIH along with PBC --- next visit had a different hepatologist who told me that not the case & why by referring to all the blood test results, very informative as well as reassuring. Biopsy sometimes not definitive. Do ask about the difference between immunosuppressant & steroids, ; I was on prednisone for 4 years ( psoriatic arthritis) but weaned myself off, the side effects of prednisone are quite serious & sorry to say but prednisone is considered to be an "immunosuppressant " as well. Make the doctors talk to you about your care & tell them your fears & concerns, I find a lot of doctors prefer to deal with a patient that wants to be part of the decision making, & that's how you sound to me. Good luck

[Biddyb in reply to Belliver]

Thanks Belliver, that is exactly what I did as I was getting nowhere with my Gastroenerologist so I got a referral to see an Hepatologist at Manchester they had I choice of two one of which specialises in PBC/AIH overlap, unfortunately I got the other one. Who is very good but still insists that if I do have the overlap then immunosuppressant success Mecaptopurine may be the way forward as Azathiaprine made me really ill. I understand that Prednisone is an immunosuppressant but apart from a moon face (which nicely conceals wrinkles) and a little weight gain did the job of keeping down my liver readings. Also the steroids helped with my arthritis and asthma So I will as a final straw ask to go back on them. It's all very confusing but I really don't want to be put at risk by loosing my immune system

[Hidden]

My liver enzymes are perfect for once. I am taking prednisone and azathioprine and Urso.

Yes I feel the slap with azathioprine. Hopefully I will only be 5 weeks Ill like you were. I'm going to do as my Dr prescribes for now.