Just some info please.: I have aih/pbc... - PBC Foundation

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Just some info please.

Alley27 profile image
6 Replies

I have aih/pbc overlap. Taking mercaptopurine for antibodies and have been on steroids as well. Consultant is tapering steroids and am currently on 7.5 mg, tapered slowly from 30. When I was on 12.5 things were ok, but I have been in pain right upper abdomen for two days now. I have been unable to get an appointment to see gp yesterday and they are closed today.

I took initiative and have taken 10 mg of steroid today. Should I be in pain at all reducing the steroids? and should it hurt when I breathe in. I am not unwell, no fever etc but just need some advice.

Thank you

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Alley27 profile image
Alley27
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Lisacj profile image
Lisacj

Hi,No medical expert here , but it is very common to have upper right area pain due to PBC. That is where the liver is and it may be a little iritated.. Try watching your fat intake till you get the chance to see a GP. When ever i slow down my intake of fat the pain eases.

Good luck :)

Alley27 profile image
Alley27

Thank you for your answer. I will give it a go although I don't eat much fat as am on slimming world diet and can't think of where I have gone overboard with fats. maybe I am a little more sensitive due to dropping steroids. Am not a huge water drinker and decided to flush system with mineral water.

Thanks again x

Not a medical expert either. Too many proteins also tax the liver, it isn't just fat. Also may I suggest you eat six small meals a day, unless you already are doing that. It is important to drink water, so try adding lemon to it. I know it makes it easier for me when the water is flavored. Feel better :) Judi

Axl888 profile image
Axl888

Hi there, I can remember when I came off the steroids and was put on mercaptopurine, I had as similar problem, but mine turned out to be due to anaemia and lack of oxygen getting around my body. Not sure if that was an indirect effect from steroids and medication ... might be worth checking ... You can tell if you are anaemic by pulling your eyelid down. Should have a good colour - if it is almost white, you could be anaemic.

Alley27 profile image
Alley27

Thank you for your answers....I forgot to mention I have dark stools sometimes since being on mercaptopurine but only when I have pain. I take 50 mg of the stuff. has anyone else on mercaptopurine noticed any changed in bowel movement.

Thanks xx

crundalite profile image
crundalite

Just a suggestion depending on where you live.. Have you tried NHS direct for advice when surgeries are closed?.They should be able to help with GP/computer informed advice and assistance.

Good luck!

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