Primary Biliary Cholangitis and Autoimmune Hepatitis

Posted by mahdi123 @mahdi123, Dec 16, 2018
@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?

Jump to this post

Thanks for sharing important information

REPLY
@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?

Jump to this post

REPLY
In reply to @peach414144 "@johnbishop" + (show)

How can a person make an appointment with Mayo for more than just one medical problem. In other words multiple medical problems which work together to bring on the many problems? Does the Mayo only take one medical problem at a time and not consider the whole? Sincerely, peach414144

REPLY
@peach414144

How can a person make an appointment with Mayo for more than just one medical problem. In other words multiple medical problems which work together to bring on the many problems? Does the Mayo only take one medical problem at a time and not consider the whole? Sincerely, peach414144

Jump to this post

Good morning, @peach414144. I found a link that will address that question, and I want to share it with you. Appointments FAQ https://www.mayoclinic.org/appointments/faq

REPLY
@rosemarya

Good morning, @peach414144. I found a link that will address that question, and I want to share it with you. Appointments FAQ https://www.mayoclinic.org/appointments/faq

Jump to this post

Thank you both. Very informative information. I do appreciate. Peach

REPLY
@mahdi123

Thanks for sharing important information

Jump to this post

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

REPLY
@rosemarya

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

Jump to this post

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

REPLY
@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

Jump to this post

@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

REPLY
@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

Jump to this post

@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

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

@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

REPLY
Please sign in or register to post a reply.