Primary biliary cirrhosis: Finding it hard to eat

@kingstoncat - I have PBC and Autoimmune Hepatitis. I ended up cirrhosis and HCC. I was able to get a liver transplant almost 2 years ago. It’s always hard for me to tell what side effect is from what condition. I am always fatigued. My doctor wrote a letter regarding 4 dental cleanings a year because of my autoimmune disorders so that I can have 4 cleanings a year. I don’t have to pay extra. My dentist just scans the letter to the insurance company. It has helped my teeth a lot. I have lost a few molars, but I have a partial and that has helped a lot. I haven’t really had stomach issues. After my transplant I could it eat because the thought of food made my stomach turn. My transplant doctor okayed the use a cbd/thc gummie. That really helped. I just ate 1/2 at night. After one month my appetite was back. I think fatigue is always going to be a part of it. I work too, I think that helps a lot.

@kingstoncat
I’m very sorry about your ongoing health struggles. I had undiagnosed PBC, which was finally diagnosed when I had stage 3 liver disease. I was also fortunate to receive a liver transplant.

I agree with @ssapp1, I’d recommend a THC gummy. You can get a low dose. If it’s not legal in your state, you can get a medical prescription. If you’re not already on Gabapentin, I’d also recommend you speak with your doctor about a prescription for it as well. When I had liver disease, I took both and it helped my appetite, reduced anxiety/depression, and helped me relax and sleep.

I’d also recommend protein shakes. I take a product called Orgain. It’s got vitamins as well as protein. I mix it with fortified nondairy milk as it’s easier on my stomach than dairy. This will help you at least get protein and vitamins into your body.

Hang in there, I know it’s a struggle…

Thank you both so very much! Now a new problem the last abdominal sonogram shows possible bile stones, Thursday I am going to have a test to check the bile ducts for stones.

@kingstoncat
Let us know what it reveals. Be good to your liver!

I was dx with non alcoholic pic in 1999. I am 70 yrs old. I am not taking anything The meds my dr had me on had horrible side effects and my dr and me both decided it was not working. I recently had a fibroscan and went from a 1 to a 2. My new dr wants to put me on new meds that I could not afford. Last few weeks I’m not very hungry and when I do eat I so full from not eating much. Is this because of the pbc

I have PBC too, fortunately caught relatively early. Is Urso working for you? I echo the nutrition shakes, those help me. Also can recommend the PBC Foundation based in the UK, probably the definitive patient site in the world. They have an app, you can track symptoms. They also have a great newsletter and tons of articles on research and MD interviews. Also the book The Definitive Guide to PBC by Professor Jones. Small frequent meals also help me. There are some nutrition shake products (Kate’s, others) that have pretty complete nutrition and are given to patients who can’t get food down. Good luck

Hi all,
I realize this is a very old post, but im writing in hopes that one or some of you are still active in this platform.
My mother in law was diagnosed with Stage 3 liver disease and PBC 2 years ago with what the doctors are calling an autoimmune issue but have not been able to give her a diagnosis as to the cause (or what autoimmune disease would cause this). I was hoping maybe some of you could shed light on what autoimmune disease you have that played a role in your liver disease progression. I'm doing everything I can to help her avoid a transplant which seems to be a very likely thing to happen. Any and all information is appreciated.

@athenalee I've read many of your posts and found you so helpful. Youve expressed that you had a few autoimmune diseases. Sjogrens was one, any others that would potentially lead to liver disease? Thanks so much

@slaforgia20 Welcome to Mayo Clinic Connect! I’m glad you found this site. You certainly are remarkable in your effort to help your MIL I wish you luck and maybe someone here can help you.

@slaforgia20
I am a transplant recipient, and had a liver disease (PSC) that is related to PBC. I also had a family history of autoimmune conditions. I have vitiligo, a skin condition in addition to my autoimmune related liver disease. It is not unusual for a person to have more than one autoimmune condition where the immune system acts against the patients own body. PBC or Primary Biliary Cholangitis is an autoimmune disease in which the bile ducts are inflamed and slowly destroyed. (The name used to be called primary biliary cirrhosis.) So in your mother-in-laws situation, her actual autoimmune system is the culprit as it is attacking her bile ducts.
Here is information from Mayo Clinic
- Primary Biliary Cholangitis https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874
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From my experience, I've learned that liver disease can and will take a different path for each patient. Your best way to support your mother-in-law is going to be to help her to keep all doctor appointments, eat healthy meals, take her medicatiions, and be available to accompany her to appointments if needed. Has the doctor discussed transplant with her?