Medication : Could you please tell me what... - PBC Foundation

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Medication

Alley27 profile image
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Could you please tell me what other medications are available for treatment AIH. My mercaptopurin is not working properly and tomorrow I have an emergency appointment with a hepatolagist at Selby war memorial hospital. Thanks

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Alley27 profile image
Alley27
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4 Replies
butterflyEi profile image
butterflyEi

sorry not to be able to help but wish you well with your hospital visit. come back and let us know how you get on.

SandraS profile image
SandraS

Hi, i have PBC/ AIH overlap and was initially treated with prednisolone but after the Dr stopped that the AIH flared again. I was then started on a course of budesonide and azathioprine. I took both for about 5 months then the budesonide was reduced and eventually stopped and i now remain on the azathioprine. I'm a non responder to URSO so my ALP is still high but all my other numbers are now in normal range and just started bezafibrate as a second line for the PBC.

Hope you get something that works for you keep us posted

Alley27 profile image
Alley27

Hi guys and thank you for your comments and support. I went to see Dr Hutchinson yesterday at Selby, it's the first time since diagnosis that I have seen an actual hepatolagist. He's not happy with my liver and general condition...he ordered a fibroscan which I had yesterday, plus an infusion of rituximab through a cannula....took an hour for the infusion...us lots of blood tests about 13 tubes worth. Hes checking for any other autoimmune conditions as well. My mercaptopurin is not controlling my disease and it needs controlling as we all know...hes switched my medication to mycophenolate cellcept and rather than prednisolone hes wanting me to try budesonide but we have to do something so I agreed fir a trial of 3 months....feel quite tired today but feel a tiny bit less nauseous, in fact I managed to eat a banana and some Greek yogurt this morning...I can't go back to work until my liver settles down and stabilizes my boss won't be pleased, but we will see....perhaps I needed this warning to keep me at home to rest and heal. In November when I was hospitalized with a flare I went back to work within 2 weeks and didn't give myself the time I needed to heal, now this...home it is. Thanks guys x

AliceYZ profile image
AliceYZ

Hello! I have PBC/AIH overlap syndrome. I was on all the same meds as SandraS. Still had high numbers so I was put on Imuran. Had a bad reaction. Went back on Prednisone along with Urso and Myfortic. Switched me to Budesonide . Numbers were still not in range. 2 months ago I was put on Tacrolimus in addition to Urso and Myfortic. Off steroids. :) numbers are good so I’m hoping to possibly wean off Myfortic in a few months. Took 18 months to get me consistently in good Levels. Everolimus is a drug similar to Tacrolimus. Gentler on the kidneys. So since this is long term for me maybe we’ll try it down the road. These drugs are used more for post transplant. Doctor said most people respond to regular treatment meds in 3-6 months time. Glad you are with a Hepatologist. Hang in there with the Budesonide if you can. It goes directly to the liver and affects less of your body than Prednisone. These meds cause dry mouth and I have upped my tooth brushing to 4 times a day. 5 cavities in 8 months!

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