Primary Biliary Cholangitis and Autoimmune Hepatitis

Posted by mahdi123 @mahdi123, Dec 16, 2018

Hi this is Mahdi

@mahdi123

Thanks a lot for your advice
I just want to know the possibility of treatment or transplanting in the clinic whether they have or not

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Mahdi.
Wanting to know the possibility of treatment is exactly the reason that you should call and begin a conversation.
I don't know how the system works where you are, but there would be no obligation on your part by making phonecall and having a conversation. That is the only way to find out if there is any need to set up an appointment for you.

In my case, my transplant doctor called Mayo and begen the conversation. Then he sent my records before Mayo agreed to see me. Then an appointment was scheduled because I needed to be seen by a specialist who was there. I do not know about how anyone else made their contacts.

I would be interested to hear what you learn. If you do need to make an appointment, I will help you if you want.

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@mahdi123

Thanks a lot for your advice
I just want to know the possibility of treatment or transplanting in the clinic whether they have or not

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@mahdi123 I think your best bet will be to call or go online and schedule an appointment.

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@rosemarya

Mahdi.
Wanting to know the possibility of treatment is exactly the reason that you should call and begin a conversation.
I don't know how the system works where you are, but there would be no obligation on your part by making phonecall and having a conversation. That is the only way to find out if there is any need to set up an appointment for you.

In my case, my transplant doctor called Mayo and begen the conversation. Then he sent my records before Mayo agreed to see me. Then an appointment was scheduled because I needed to be seen by a specialist who was there. I do not know about how anyone else made their contacts.

I would be interested to hear what you learn. If you do need to make an appointment, I will help you if you want.

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My gastro Dr. Referred me. FL Research Institute ordered a biopsy as part of a clinical trial for NASH., so I had that and a diagnosis and a Fibroscan.

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@jeanne5009

My gastro Dr. Referred me. FL Research Institute ordered a biopsy as part of a clinical trial for NASH., so I had that and a diagnosis and a Fibroscan.

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jeanne, Have your doctors given you and indication if or when you might need a transplant?
You mentioned a clinical trial for NASH, What does it involve? – only if you are comfortable in sharing. Are you still participating in it?

Liked by jodeej

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@rosemarya

jeanne, Have your doctors given you and indication if or when you might need a transplant?
You mentioned a clinical trial for NASH, What does it involve? – only if you are comfortable in sharing. Are you still participating in it?

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I am waiting they said Within two days they will call me

For transplant not determined yet

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@cinnamon215

Hello, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.

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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, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.

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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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@cinnamon215

Hello, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.

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@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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@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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Thanks for sharing important information

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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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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

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@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

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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

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@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

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

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@mahdi123

Thanks for sharing important information

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

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