Primary Biliary Cholangitis: I would like to connect with others

Posted by jackieg @jackieg, Jul 29, 2016

I've recently been diagnosed with this disease and don't know much about it. If you have info that may help please answer. I mainly would like to know how you cope with knowing it is not curable.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@colleenyoung

Hi @jackieg. I want to add my welcome to Rosemary’s. Glad to have you join the Connect community.
I’m happy to introduce a few other Connect members to this conversation about PBC. Please meet @ageorge714 @lorettanebraska @tiffanyandrews @bobbutler @mrsdeecee.

Jackie, you may be interested in reading this discussion about PBC and itching https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-primary-biliary-cirrhosis-5-yrs-ago-i-have/

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How do u feel. Can u tell if ur disease has progressed. What meds do u take.

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Stay calm stress is bad watch your diet low fat exercise and be kind to your liver a cup of hot water with lemon is the best in am they are making strides I have since 09 try to cut sugar aka carbs out no processed foods lots of vegis and fruit organic and free range I learned alot from Paleo anti immune diet would be my honor to help you but tired in NY I will leave you a post tomorrow I do know a lot of this disease you can live a long healthy life if you take very good care of you body and mind stress kills !

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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You are lucky to find such a great doctor!Sounds like your in great hands ! Very happy for you Im so tired will share in am have pbc and others problems have some formal medical schooling ànd hope to help and be heped good nite and bless us all Dee

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@colleenyoung

Hi @jackieg. I want to add my welcome to Rosemary’s. Glad to have you join the Connect community.
I’m happy to introduce a few other Connect members to this conversation about PBC. Please meet @ageorge714 @lorettanebraska @tiffanyandrews @bobbutler @mrsdeecee.

Jackie, you may be interested in reading this discussion about PBC and itching https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-primary-biliary-cirrhosis-5-yrs-ago-i-have/

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Thank you Colleen nice to meet youDee

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Its safer than a EUS that’s when they put like 30 feet of camera down your
throat your under but woke up in so much pain this was 2010 Not only do I
have PBC Drs said I was at highest rate of pancreatic cancer I wanted to
know why well about a year or so they seen residue from a stone that was
pushed in pancreas for years?From EUS test! Pancreas is a gland not an organ ? Going for
blood work and discussion about damage to pancreas I am 53 now and have no
energy I am going to be treated holistically traditional Chinese medicine
don’t think I am candidate for liver transplant? But I’m in NY drs in NYC
in Ohio they do pancreatic bile duct transplants they always leave your
pancreas in incase of brejection I thought going to Sloan Ny Presbyterian
Cornell and Columbia was my best bet! I want to try the pill test sounds
great and instead of liver biopsy there is a fibro scan for liver? Good
luck God Bless Dee

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Not till stage 4

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Jack do you what the pill test is called? Interested Deena

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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Everybody’s body is unique. And everybody will respond differently to some treatments. That is why it is good for you that you are being monitored by your highly qualified physicians. Listen to them. This is new to you, but familiar to them. I remember one of my doctors telling me that you could look at 5 patients with the same liver disease, and each might experience different symptoms. And no one knows how fast or even “if” it will progress! Medical research and advances continue to discover new treatments and medicines. For now, focus on “now” and let your doctors do their doctoring! You are not alone. Rosemary

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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@jackieg That is amazing!! Thanks for sharing your experience. I’m happy it didn’t blow you up – I can relate to those kinds of fears!!
I hope that the information that has been obtained will provide the information that can lead to treatment for you. Rosemary

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Is any one on urso acid if so can you tell me if and any help? I have had many allergic reactions to medications bug bites ect I dont think I can take anymore predisone. There is a new med for PBC approoved May called OCALIVA it is very expensive and manf. Is willing to help with cost its over 5 thousand for 30 day suoply and over 60 thousand a year if any one is on this please let me know I read some of the trails with placebo it causes servere Pruritis aka itching fatique ab pain throat and mouth pain abnormal thyriod skin eruptions edema of extremities fever jauntice palpatations asites sleep disturbances I have some of these symptoms with out meds? Eczema seems taken with urso brought ALP alkaline phosphotase down 15 % You can look it up online and call a rep I did anyone have a stent put in since 2009 have had no course of treatment ? If any one is familiar with these meds and reations good or bad please let me know .have a blessed day Deena

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@rosemarya

Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here is an informative link to this disease.
http://www.mayoclinic.org/diseases-conditions/primary-biliary-cirrhosis/basics/definition/con-20029377
My girlfriend has Primary Biliary Cirrhosis, that was discovered when she was being treated by a cardiologist for something else. She was diagnosed around 7 years ago and is doing well with no symptoms. She is seen by gastroenterologist at 3 month intervals, and has labs drawn along with that. She is also on some medications to help keep it stable. She is healthy and active and a grandma/great grandma! I, on the other hand, had Primary Sclerosing Cholangitis, which is also related to autoimmune disease. I would be happy to chat with you and maybe answer some of your concerns or provide you with some information.
Rosemary

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@mrsdeecee I want to say that I am sorry that you are struggling with your health issues. The fatigue, alone, can be all consuming. thanks for reaching out and offering to encourage others. Rosemary

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@mrsdeecee I took urso for about 8 years with no adverse reactions. Have you discussed this with your doctor? Who is prescribing it? Rosemary

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