Primary Biliary Cholangitis and Autoimmune Hepatitis

Posted by mahdi123 @mahdi123, Dec 16, 2018

Hi this is Mahdi

@rosemarya

@mahdi123, I am happy that you found some helpful information that was posted here. How are you feeling?

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Sorry to say quite irritated (But not because of you). It is really getting to me. Just found out on top of everything else my kidneys have shrunk quite much. I had been telling my doctors about the pain in the back where the kidneys are for about a year now. They did not want to address this issue. I am guessing because of the many other health issues I have confuses them. Holding on with much irritation and wanting to lash out. Wish I could afford to move elsewhere. Thank you for listening. Take care. Peach

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@peach414144

Sorry to say quite irritated (But not because of you). It is really getting to me. Just found out on top of everything else my kidneys have shrunk quite much. I had been telling my doctors about the pain in the back where the kidneys are for about a year now. They did not want to address this issue. I am guessing because of the many other health issues I have confuses them. Holding on with much irritation and wanting to lash out. Wish I could afford to move elsewhere. Thank you for listening. Take care. Peach

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@peach414144, You have every right to be more than quite irritated. Thank you for feeling trust to share this unfortunate situation here on Mayo Connect. We are here anytime to listen, and "Yes" you can lash out here. We understand.
I was just scrolling thru the Mayo Transplant Facebook and saw this, so I want to share it with you – "Today is the last day of National Kidney Month I hope it gives you some helpful information.
http://bit.ly/2uzoSVb

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@peach414144

Sorry to say quite irritated (But not because of you). It is really getting to me. Just found out on top of everything else my kidneys have shrunk quite much. I had been telling my doctors about the pain in the back where the kidneys are for about a year now. They did not want to address this issue. I am guessing because of the many other health issues I have confuses them. Holding on with much irritation and wanting to lash out. Wish I could afford to move elsewhere. Thank you for listening. Take care. Peach

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@peach414144
Hang in there…sometimes our docs dont listen..i have a great relationship with my PCP and can tell when Im getting my point across. I was REAL mad at him last week when he asked me if I was drinking…AST level was up. I pounced on him like a cat on a canary. He laughed and got the message. Also. I think communication with our specialists is difficult because they deal with so many like us. I always make a list on my phone of notes before and after each visit. That way I can go back and show them what I was talking about and when.
Im sorry you had to go through that…make sure you let them know how you feel…in the nicest way..of course..lol

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@ethanmcconkey

Hi @cinnamon215 you may have noticed that I moved your post to this existing discussion on Primary Biliary Cholangitis, per the request of @johnbishop, in order for you to connect with other members who have similar experiences.

I wanted to introduce you to fellow Connect members, @mahdi123 and @rosemarya as they have had similar experiences to you and may be able to offer you support.

Back to you @cinnamon215 how are your symptoms at this point?

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Thank you for your reply. I am just overwhelmed by the very nature of the question about my symptoms. It has been hard for me to put into words all I am dealing with since I first got sick a few years back. That's the same question that most of my doctors have opened the conversation with at my visits…which brings up another question that I need to jump to…I'm sure you can answer this one. Why do doctors ask something like "So, what brings you in today?" or "How are things going?" like they are a blank slate. This, after having spent a considerable amount of time filling out all the paperwork about my medicine, symptoms, medical history, etc. including the answer to the first question: "What is your chief complaint today?" and he hasn't even glanced at the paperwork. Since I developed all these miserable AI diseases, I don't know which doctor wants to know what, so I end up telling them my list of concerns and symptoms so they can pick and choose which ones they want to address which wastes a lot of valuable time. If I am in the middle of a flare, I tend to just shut down with that question because I can't answer it. With the stress of getting to the appointment and accompanying mental fog, sometimes it is a big ordeal to communicate.

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@johnbishop

Hello @cinnamon215, I know it's difficult dealing with multiple autoimmune diseases and especially when there are a lot of unknowns. I'm really glad to see that you are learning as much as you can about your health condition and being a strong advocate for your health. There is another discussion on Connect that is similar to yours where your post may get much more visibility. I'm tagging our moderator @ethanmcconkey to see if he is able to move your post to the following discussion where you can meet other members discussing Primary Biliary Cholangitis and Autoimmune Hepatitis.

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

Here are a few links that may help answer your question – which chemicals and toxins affect the liver.

NIH – Toxic hepatitis in occupational exposure to solvents
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374978/

Industrial Chemicals Associated with Toxic Hepatitis
https://www.haz-map.com/heptox1.htm

Common toxins to avoid
http://loveyourliver.com.au/common-toxins-to-avoid

Do you think you may have been exposed to any hazardous chemicals or toxins?

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Hello, John, thank you for the great links you provided. If you know of other resources, I would appreciate reading those as well. I worked for 32 years at a Superfund site.

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@cinnamon215

Hello, John, thank you for the great links you provided. If you know of other resources, I would appreciate reading those as well. I worked for 32 years at a Superfund site.

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@cinnamon215 here are a few superfund specific links I found.

Superfund – Superfund is a U. S. Environmental Protection Agency (USEPA) established program that addresses abandoned hazardous waste sites.: https://www.sciencedirect.com/topics/earth-and-planetary-sciences/superfund

Superfund: is it safe to go home? : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038095/

Superfund Human Exposure Dashboard: https://www.epa.gov/superfund/superfund-human-exposure-dashboard

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@johnbishop

@cinnamon215 here are a few superfund specific links I found.

Superfund – Superfund is a U. S. Environmental Protection Agency (USEPA) established program that addresses abandoned hazardous waste sites.: https://www.sciencedirect.com/topics/earth-and-planetary-sciences/superfund

Superfund: is it safe to go home? : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038095/

Superfund Human Exposure Dashboard: https://www.epa.gov/superfund/superfund-human-exposure-dashboard

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Hello John, You know, it is amazing to me that there are people in this world who, like you, volunteer their time to help others. And what is also amazing is how quickly you guys at Mayo Connect respond with worthwhile and valuable assistance! Who does that any more? You are my life saver in the ocean of life today! LOL — I bet no one ever told you that one! Seriously, John, thank you so very much for serving in this way. And thank you Mayo Clinic, for providing this most valuable service!

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@cinnamon215

Thank you for your reply. I am just overwhelmed by the very nature of the question about my symptoms. It has been hard for me to put into words all I am dealing with since I first got sick a few years back. That's the same question that most of my doctors have opened the conversation with at my visits…which brings up another question that I need to jump to…I'm sure you can answer this one. Why do doctors ask something like "So, what brings you in today?" or "How are things going?" like they are a blank slate. This, after having spent a considerable amount of time filling out all the paperwork about my medicine, symptoms, medical history, etc. including the answer to the first question: "What is your chief complaint today?" and he hasn't even glanced at the paperwork. Since I developed all these miserable AI diseases, I don't know which doctor wants to know what, so I end up telling them my list of concerns and symptoms so they can pick and choose which ones they want to address which wastes a lot of valuable time. If I am in the middle of a flare, I tend to just shut down with that question because I can't answer it. With the stress of getting to the appointment and accompanying mental fog, sometimes it is a big ordeal to communicate.

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I think the easy answer about the doctor's is that they want to hear you tell them what is going on its just a way to get a dialogue going to get a read, of where you're at, with your health. They just need to hear from your own lips what you're feeling.

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@ca426

I think the easy answer about the doctor's is that they want to hear you tell them what is going on its just a way to get a dialogue going to get a read, of where you're at, with your health. They just need to hear from your own lips what you're feeling.

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Thank you, Charlie. I assumed that, and that really works well if you have a cold or a simple problem. With AI diseases, nothing is ever simple and it can be a challenge to choose exactly what they need to hear. I have learned that it depends on who you ask about a symptom. if you have a rash, for example, and you go to the doctor. Your primary care may say that something irritated your skin and you should use a good lotion to keep your skin from getting dry. The dermatologist may tell you that you have dermatitis and prescribe a cortisone cream to use a couple of weeks and see if it goes away. If you took that rash to an allergy specialist, they may tell you that you are allergic to a food. If you took that same rash to a rheumatologist, you may hear that it is a symptom of an autoimmune disease that could be life threatening. If you went to a hematologist, they may say you have a blood disorder. And on it goes for the complicated patient who most often hears "Well, that's not typical" and recommends you see another specialist.

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@jlsk1974

I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!

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Hello @jlsk1974, welcome to Mayo Clinic Connect. There is another active discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should 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 mentioned wanting to know what questions to ask. There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

I also found a few sites that are good sources of information on Primary Biliary Cholangitis that may be helpful.

National Organization for Rare Disorders:
https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/

American Liver Foundation:
https://liverfoundation.org/for-patients/about-the-liver/

@jlsk1974, asking questions and preparing for your upcoming appointment is a great idea. Do you normally write down a list of questions for your doctor or upcoming appointments? I have done this for appointments when I did not want to forget to ask a question.

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I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!

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Hi @jlsk1974 I wanted to join @johnbishop in welcoming you to Connect. Per his suggestion, you may have noticed I moved your post to this existing discussion on Primary Biliary Cholangitis so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

I also would like to introduce you to fellow Connect members @peach414144 @cinnamon215 @ca426 and @rosemarya as they have similar experience or may be able to provide you support.

What concerns do you have about your symptoms or your conditions? That may be a good place to start building that question list as @johnbishop suggested.

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@jlsk1974

I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!

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@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.

Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.

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@rosemarya

@cinnamon215, I am sorry to hear of your suffering with several autoimmune conditions. I have vitiligo, an autoimmune skin condition, and that is what caused my doctors to look at possibility of my liver disease also being autoimmune related. I was eventually diagnosed with a different disease that affects the bile ducts, Primary Sclerosing Cholangitis(PSC) and received a successful transplant in 2009.

I especially like the information that @johnbishop shared about Common toxins to avoid (— http://loveyourliver.com.au/common-toxins-to-avoid ) because it is directly related to everyday living. It is my understanding that there is research being done to look at the environmental and chemical toxins.
Since you are new to PBC, I want to share this information about Primary Biliary Cholangitis(PBC) from Mayo Clinic Patient Care & Health Information>Diseases & Conditions. It says that, "Primary biliary cholangitis is considered an autoimmune disease, which means your body's immune system is mistakenly attacking healthy cells and tissue. Researchers think a combination of genetic and environmental factors triggers the disease. It usually develops slowly. Medication can slow liver damage, especially if treatment begins early."
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I hope that this helps give you a perspective on this disease.

How are you feeling? How can I help you?

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Hello again, Rosemary. I came back over to read your message again. I was not familiar with vitiligo and researched it a bit. But I was familiar with PSC because my GI first considered it (among other conditions) before he sent me to Vanderbilt in Nashville for a liver biopsy. Your AI experiences have been so drastic, and I am so sorry for all you have been through. I have quite a "collection" of AI diseases now, so I try to learn something new everyday. My doctors have helped me, bless their hearts, but they can't be at my beck and call every time I develop a new symptom! 😉 Since the PBC diagnosis, my experience has been that new symptoms usually turn out to be a new diagnosis. I certainly hope you have not developed additional AI conditions. You have had enough trauma for a lifetime!
Thank you for sharing with us here.

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@rosemarya

@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.

Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.

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I meant to ask you, Rosemary, perhaps you can point me in the right direction. I am hearing more and more about the use of CBD oil for the liver inflammation (etc.) and the good results it gives. I am aware of everything I put in my mouth and filter it through "is this going to hurt me or help me?" I would like to know what the truth is. What research, if any, has been done on the effects on the liver? Thank you.

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