1. < Autoimmune Diseases

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.

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jackieg | @jackieg | Aug 3, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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Thank u Rosemary. Haven't gotten results yet but hope its good. If not I want to know that too.

REPLY
jackieg | @jackieg | Aug 3, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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They just called it the pill cam.

REPLY
Deena | @mrsdeecee | Aug 15, 2016

I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 18, 2016
In reply to @mrsdeecee "I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my..." + (show)
@mrsdeecee

I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

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Deena, I can understand why you are frightened about testing. My question is this: Is it possible that the PBC is being ignored because the pancreatic issue is a higher priority? I mean, PBC is generally a chronic condition. I don't know what you mean by saying you saw a "cold hearted" GI. But perhaps he/she just has a terrible bedside manner? If it were me, I think I would want anther professional opinion of what to do. Then I would move forward from there. Be patient! Medical appointments and procedures do not happen fast!!! I hope you can find the level of care that you deserve. Rosemary

REPLY
Deena | @mrsdeecee | Aug 19, 2016
In reply to @mrsdeecee "I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my..." + (show)
@mrsdeecee

I have a pancreatic specialist in NY Prebyterian been trying to contact I went into my records the PA reveiwed then not doctor? She called to tell me my liver specialist had wrong diagnosis. I want to know the extent of pancreas damage their was a stone in their for 5 years the pain was horrible no one believed me in medical community. I was thinking about going through a traditional chinese medical doctor I did study it till broke my leg in 2010 seems no doctor in versed in PBC I tested for 7 years every 3 months no treatment no anserws I do have good ins a multi plan if you know or anyone of PBC doctor in New York area please refer. What do you think of liver foundations its on Broadway NYC for referral ? It is an understudied disease they caught it early summer 2009 I had no symptoms till stone was pushed into pancreas during a EUS? Every GI I seen was cold hearted and focus on pancreas would tell me going to die of most aggressive cancer no cure least common and have dilations of intra and extra bile ducts.Thank you for asking no one ask me how I am doing what so ever? I am frighten to test been 18 months the PA thinks she saw a lesion on pancreatic head thats when I stopped exactly where they said I would get cancer? Chinese medicine concentrates on calming the shen (mind) If you were me what would be your game plan out of curiosity I will not hold you too your opinion ! Have a wonderful Day!

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No doctors as off yet! Im going to look on PBC web site and see if I can find a doc that specializes in PBC because it involves liver biles ducts my case pancreas and could lead to kidneys? In advance could effect other systems , Last time I went to GI around the block, I live in medical central their are 3 hospitals in a 5 mile radius the cold hearted doctor was out he had a fill in dr a foreign dr could not understand I wanted my blood ran basic,liver profile ect he told me to take my pants off which I found odd? I thought he wanted to check my pancreas or liver for tenderness? He proceeded to put his finger up my anus without gloves I honestly felt violated my issues are in the right upper quad?? And did not give me a script for blood work!! Now you know why I am hesitant ha ha ha! That was about a year ago! Pancreatic specialist no reply from NYP?

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Deena | @mrsdeecee | Sep 6, 2016

Rosemarie I post at night when tired, Im repeating my post ? Sorry Ill leave you a post tommorrow when Im not falling asleep its 2 am still up? Deena

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 6, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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Hi @jackieg , I've had you on my mind. You've had so many tests already, and last time we chatted, you were waiting to see your doctor for the results. I hope you have a diagnosis. And a treatment plan.
I remember that for it seemed to take forever to get a firm diagnosis. Getting a name for my disease was almost a relief. Because now there was a treatment plan. Rosemary

REPLY
jackieg | @jackieg | Sep 7, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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

Jump to this post

Hi Rosemary, Just got results from pill cam and it was normal. It seems I'm<br>really healthy except for my PBC and I don't think that is bad. I do have a<br>question though. My primary Dr wants me to go on a statin for high<br>cholesterol but I read statins can cause liver damage. Do you know if this<br>is true. Thanks for keeping in touch.<br>

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 8, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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

Jump to this post

@jackieg Thanks for the update. Congratulations on your good health!
As for the statin cholesterol drug, that is a doctor/pharmacy question. Be sure he is aware of your PBC. A lot of drugs, both prescribed and over the counter, have this 'can cause damage to liver' warning. Benefit vs health risk is considered. And routine labs to monitor liver functions are often scheduled.
Are you going to be monitored for your PBC by your GI?
My primary care doctor and my GI communicated with each other when questions arose.
Rosemary

REPLY
jackieg | @jackieg | Sep 8, 2016
In reply to @rosemarya "Hi jackieg, I think that primary biliary cholangitis is the same as primary biliary cirrhosis. Here..." + (show)
@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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Hi Rosemary, i checked with my Liver Specialist about the statin and he approved.. I was concerned because of the side effects listed with taking the statin. My primary care Dr. knows I have PBC. I started back taking the statin after consulting with my specialist. I am fortunate to have good doctors who keep up with my progress. I'm feeling better since I've gotten so much good info from the people on this group and thank you for your help.

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