PBC Foundation


I am newly diagnosed with AIH and PBC (8 weeks ), and I am so happy I found this site. It has informed me more than my Gp or Consultant has just by reading everyones stories. Until I found you guys I was so upset about these conditions, I felt numb and uneducated. It's nice to know we are not alone in this debilitating disease. And I do understand that doctors don't know everything, but they do try to help if we are lucky.

I am becomming more accepting of my health conditions, and learning to live with it. I have had 2 good days this week, but the rest have been nasty, could'nt get out of bed for three of them..fatigue, joint pain and to add another symptom to all I alrady have, when i get what I now term as a flare up I also get diarroha.I am told that when I start taking Azathioprine things may improve..that is if my antibodies react well to this medication and there are not too many side effects.

I really do not like taking steroids. My face is becoming more rounded and I get odd blood sugar readings (i am not diabetic) I just keep an eye on glucose levels because prednisolone can cause diabetes. I also would not like to gain any weight..I have battled with my weight since after my son was born 18 years ago; when my hashimotos started. Fortunately for now there has been no weight gain, but that is possibly because one of my worst symptoms of PBC and AIH is no appetite. I have to force myself to eat or I don't. I even bought build up to help with the appetite, this is a worry to me.

I just want to say than you to everyone on this site for your support and encouragement. it's worth the earth especially to those who are not being heard.

Thank You All Very Much


3 Replies

I answered the steroid & Aza concern of this question under your blog about Hashimotos and rambled on a bit. Btw, I too am into alternative therapy. We all need to stick together.

Take care. x



Welcome to this site, lots of good information. Someone told me that it's best to eat small amounts often. A bit like grazing, large meals are harder for the liver to process. Hard to change eating habits but worth the try.

Best of luck to you, take care.



I too suffer with PBC. I was diagnosed just over 2 years ago. I am on a range of tablets which work sometimes, then dont?? The worst problem I have is the itching. It drives me mad! I have tried various creams and Xyzal tablets that I got from my doctor, but I still itch.

In the first few months of the condition, I didnt eat much at all. In fact some days I forgot to eat. I lost some weight which is always nice but my family told me I was getting too skinny so I started to eat small things a few times a day which helped. I am now a size 10 and fine in that department.I had a bone density scan recently which indicated my bones have become thin so I was told to take calcium tabs and Vitamin D. I was also told to maintain my weight.

As for the tiredness....It can be very depressing to wake up feeling wrecked. Also I noticed I start yawning in the middle of a conversation (not that I'm bored). It can be very frustrating. I am a grandmother now and find I get tired very easy when playing with my grandson.

I hope some genius finds a cure for this condition asap.

I only joined this site yesterday, and I'm glad I did. Its very informative and we can all share our problems and tips that might help. A lot of people dont know or understand what sufferers of PBC are going through because its relatively rare.

Letme know how you are getting on and I will do my best to help or advise you in any way I can.

Bye4now and take care.


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