Consultant appointment : Hi everyone, I am... - PBC Foundation

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Consultant appointment

Vespa27
Vespa27

Hi everyone, I am due to see liver consultant on 10 th Jan and what with the recent very bad flare I have been fighting...i am wodering what questions to ask. Its very different this time. There are lots of issues to be discussed. There was the mention in a London hospital that I need to tripple my dose of mercaptopurin to 150 mg, not to mention still taking steroids. Also to ask about a fibro scan to stage my liver disease. I am just so fed up and cant for the life of me think of questions to ask. Any help is appreciated thanks .

3 Replies
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Hi,

Here's a link to a great resource provided by PBC Foundation. It has a whole easy to understand section on questions to ask the doctor. I strongly recommend this AND if you haven't done so yet, join the PBC Foundation and you will have access to more info on research etc.

Here's Roberts post on the Foundation and its work for PBC patients.

healthunlocked.com/pbc-foun...

Good luck with appointment and keep us updated !

Vespa27 you say there are lots of issues to be discussed. I think I would itemize each issue and then put questions under each heading.

What is the mercaptopurin prescribed for and how does it impact on PBC? Are the steroids for an overlap syndrome? Depending on you answers to these questions it may help you to get to the questions you want to ask.

As EileenUSA has said the PBC Foundation is a great resource.

Hope all goes well on the 10th. Happy New Year.

best wishes

Vespa27
Vespa27
in reply to butterflyEi

Thank you butterflyEi....happy new year. I do have the overlap AIH PBC. The reason I say there's a lot to discuss, is regarding dosage of mercaptopurin. I hate taking this medication, its chemo based. I have been on it 6 years now, and I m so upset that it's not controlling my AIH. I recently had massive flare but this time, it affected my liver, spleen, pancreas and brain...very bad flare..consultant in London said the mercaptopurin needs to be tripled...it won't suit me.....the consultant from Pinderfields said we need to discuss it. I want to change medication, no one should have to take chemo for the rest of their life, especially if no cancer. I am sure there are options. My other option is no medication this is how bad this medication makes me feel most days. I just need to keep an open mind and see what happens on 10th. Thank you also for the idea of heading and questions I will sit and do this tonight.

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