Primary Biliary Cholangitis: I would like to connect with others

@jackieg, Hi jackieg. I'm clearing out some of my past email notifications and I came across your name. I hope that you are still doing well with managing your PBC. And that you are feeling okay. Rosemary.

Thanks for asking. I'm on ursodiol and having some nausea and vomiting problems but doctor changed the way I'm taking it and so far it is ok. Won't know if it has progressed until I go back for blood work this summer. I feel pretty good but not great. I'm working on that with exercise and healthy eating. 

@jackieg, I am so happy to hear from you. Thank you for your reply. It sounds like you and your doctor are coming up with a good plan for the nausea and vomiting and ursodiol. It is my understanding that it does cause some side effects for some people. Anyway, it is neat that your doctor is changing how you take your URSO, hopefully that may help reduce some of the uncomfortable side effects. I can't remember how I took them - with/without food or time of day. But I do remember that my hubby called them 'horse pills' because of their size!
I want to congratulate you on exercising and healthy eating That is often so hard to do, but so-o-o important, especially when dealing with a yucky chronic condition like this one.
Sipping gingerale (flat and room temperature) helped me when I felt nausea. Also sucking on mints gave me some relief.
I will be having my routine labs drawn end of Jan. People can't believe me when I say that I dread that needle. They think that because I'm "used to it", that it should be easy for me. Ha!
Keep in touch. Let me know how the change in taking ursodiol affects the discomfort.
Rosemary

My son just got that diagnosis...he is in the hospital and because they could not get in to
Put stents in his bile ducts that are clogged, they put a drain directly in .

They hope to be able to put stent in tomorrow (2nd attempt) ... what is his prognosis treatment and as it progresses what will his quality of life be like?

@shawnvidali56, I want to welcome you to Mayo Connect. My first message to you is that your son is where he needs to be right now, in the hospital where he can be observed and treated as needed. When the bile ducts are damaged, bile can back up in your liver and sometimes lead to irreversible scarring of liver tissue (cirrhosis). I had a stent once when my bile ducts were becoming clogged from a different liver disease.

Primary Biliary Cholangitis (PBC), is a chronic disease Currently there is no cure. By working together with the doctor, medications are available to help slow the progression of the disease and prevent complications. Sometimes if the medications and lifestyle do not stop the progression of the disease, a transplant could be necessary. My girlfriend was around 65 when she was diagnosed and she had no complications from it.

Here is information about Primary biliary cholangitis. You will find information about diagnosis, treatment, and healthy lifestyles, as wall as possible symptoms and outcomes.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
shawnvidali56, I hope that your son has a good night. And that the stent placement goes well tomorrow.
I had a different bile duct disease, and I want you to know that I am here and ready to help you in any way that I can from my experience.
What kind of symptoms did your son have leading up to the PBC diagnosis and hospitalization?

@shawnvidali56, It has been a while since I heard from you and I am concerned. Were the doctors were successful in the 2nd attempt to put in a stent. What have they told you about any future treatment?

I have just started taking Ursodiol for my PBC. I was told that I had clogged ducts in my liver and this drug would help clean them and get my liver functioning better. I was also told that it is not uncommon for women my age (71) to how clogged liver ducts. My complication is some hardening of the liver too which is irreversible. No doom and gloom in this diagnosis though unlike an earlier appointment before biopsy that left me thinking I was dieing.....SOON!

I was diagnosed with PBC about 11 months ago. I take Ursodiol as well. It has helped me. Unfortunately I have AIH as well. Both of these autoimmune diseases have caused me to have liver cirrhosis and I am waiting to be added to the list for a liver transplant. Keep an eye on the level of cirrhosis of your liver. Your doctor may be able to give you meds to help reverse the damage if it isn’t too far along.

PBC
I have about two decades of this rare disease. I wasn’t able to tolerate any meds to help the liver out so I went on a gluten free diet and rarely use salt in foods as my ankles are swollen. Oh, I’m on the last stage of cirrhosis. Along with PBC the body has ulcerative colitis and peripheral neuropathy which is very painful and is a challenge to walk. I’m so fortunate to have excellent specialists for all this stuff. Good luck and keep up th fight. 🙂