Anyone had a liver biopsy for Primary Biliary Cholangitis diagnosis?

Hi Gema98,

I to have PBC stage 4 cirrhosis with bilirubin at 3.9mg. Standard range is 0.2-1.2mg.

I’m not able to take any medicine for PBC. Urso made me very sick.

I’ve had PBC for 25/30 years. Generally I have done well with it. I exercise and watch my diet. It’s rare that I eat out.

I had my biopsy and did great too! I was diagnosed with early stage PBC and starting on Urso this week. Hopefully it will work and keep it from progressing too fast. Still processing the fact I have this illness with no cure.

I definitely understand that feeling and I have never drank alcohol. You will do fine with your early diagnosis and Urso! Lots of good information on books Dr David Jones and on PBC Foundation website also 💚

When my stuff was confirmed that I had PBC with no cure it honestly took me a year or two to accept it. I did follow all doctor orders and stayed away from blogs on this illness. I didn’t want reminders that I thought I would die early. Here I am 81 years old and enjoying every bit of my life. Always try to be an enjoyer but except the fact it will take time. Amen

Thank you for that! That helped a lot. I pretty much knew I had it before it was confirmed so I had already ready about it all. Lol

You are entirely welcome. I can tell your doing the right stuff for now which is finding all the pluses and minuses you may be facing. Connect with me anytime. I’m glad to help.

Karen

I am glad I read this thread. I recently was diagnosed with cirrhosis and figured I had a max life span of 10 more years if I am lucky. It sounds like I should not get too stuck on that. My primary complaint was itchiness and hives after getting illnesses like flu or cold. Most of that never happens anymore except for my last bout of covid I got a little itchy and swollen but no hives. So part of me thinks that if liver disease is what caused hives, I must have been worse 15-20 years ago and my liver is stronger now, but the doctors just pat me on the head and say believe that if it makes you feel better, but you are very sick. I don’t feel sick and in fact feel stronger every day. I am almost 67. I wasn’t planning on living longer than 10 more years which was driving my retirement decisions (when, where, yearly budget, insurance choices, etc). I feel inspired by you and will plan to live longer (at least as long as my money lasts LOL).

Thanks for all the hugs and likes. The support is really appreciated.

I am 71 and just learned of this disease 2 years ago. I felt fine and to learn I had NAFLD, PBC and cirrhosis I was totally shocked and scared. I try to live a normal life except for my food, so many things I will not eat to try and keep my liver compensated and not do anymore damage.

I’m sorry the Urso did not work for you, what did your hepatologist recommend? My liver enzymes were high for several years and then a Gastro Dr said my bilirubin was high that’s when I had a biopsy. I only eat out maybe once a month and stay on my clean eating. I only cook ck breast, ground turkey breast, salmon, shrimp for meat. Then whole grains, veggies, fruit, skim milk.
I have tweaked many recipes I love like chili, bean soup, pizza goulash to be healthy and freeze them. I exercise but not as much as I should. I have met some wonderful ladies with this one from WY who came to visit while travel and I’m in IL.