Primary Biliary Cholangitis and Autoimmune Hepatitis

@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.

"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.

Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/

Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?

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I have a Hematologist who never picks up the phone to discuss my condition. She also believes that twice a year is enough to see her and get blood work done. When I do see her, she sees me for 20 minutes and never looks into my eyes.

Her Nurse hasn’t a clue and believes it’s alright to e-mail through “my chart.” I have sent a few condescending messages questioning why she won’t pick up the phone to answers a few simple questions to give me peace of mind. I also told her she was “cold” and in the wrong profession. She never takes responsibilities for her errors. She consistently blames other people. I find it difficult in dealing with liars. She doesn’t understand what PSC is.

I just don’t know who to turn to now. My faith in my Doctor and Nurse is soul destroying

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I have a Hematologist who never picks up the phone to discuss my condition. She also believes that twice a year is enough to see her and get blood work done. When I do see her, she sees me for 20 minutes and never looks into my eyes.

Her Nurse hasn’t a clue and believes it’s alright to e-mail through “my chart.” I have sent a few condescending messages questioning why she won’t pick up the phone to answers a few simple questions to give me peace of mind. I also told her she was “cold” and in the wrong profession. She never takes responsibilities for her errors. She consistently blames other people. I find it difficult in dealing with liars. She doesn’t understand what PSC is.

I just don’t know who to turn to now. My faith in my Doctor and Nurse is soul destroying

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If you are that unhappy find another Doctor!

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Was just diagnosed with this. Have lots of questions. Can anyone help.
Will the medication they gave me help me feel better.
Do I have to take the medication for the rest of my life?
Does changing my diet help?
Are just a few.

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Hello @foustr68, Welcome to Connect. There is an existing discussion for Primary biliary cholangitis (PBC) where you can meet other members and learn how they are managing PBC. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion.

> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
-- https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/

You can also find more information that may help answer some of your questions on the following sites. I'm also tagging @rosemarya who may be able to answer your questions.

Primary biliary cholangitis - Symptoms and causes - Mayo Clinic
-- https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
Primary Biliary Cholangitis - NORD (National Organization for Rare Diseases)
-- https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/

Have you asked your doctor about your question on taking medications and if a change in diet would help?

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Hi @foustr68 I'd like to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on Primary Biliary Cholangitis that John suggested so that you could connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

@rosemarya @jacinta and @djallan may be able to offer you support and answer questions you have.

Back to you @foustr68 what medication did your doctor prescribe?

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Was just diagnosed with this. Have lots of questions. Can anyone help.
Will the medication they gave me help me feel better.
Do I have to take the medication for the rest of my life?
Does changing my diet help?
Are just a few.

Jump to this post