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.

@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

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

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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 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

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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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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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@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, Hi jackieg. I’m clearing out some of my past email notifications and I came across your name. I hope that you are still doing well with managing your PBC. And that you are feeling okay. 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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Thanks for asking. I'm on ursodiol and having some nausea and vomiting problems but doctor changed the way I'm taking it and so far it is ok. Won't know if it has progressed until I go back for blood work this summer. I feel pretty good but not great. I'm working on that with exercise and healthy eating. 

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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, I am so happy to hear from you. Thank you for your reply. It sounds like you and your doctor are coming up with a good plan for the nausea and vomiting and ursodiol. It is my understanding that it does cause some side effects for some people. Anyway, it is neat that your doctor is changing how you take your URSO, hopefully that may help reduce some of the uncomfortable side effects. I can’t remember how I took them – with/without food or time of day. But I do remember that my hubby called them ‘horse pills’ because of their size!
I want to congratulate you on exercising and healthy eating That is often so hard to do, but so-o-o important, especially when dealing with a yucky chronic condition like this one.
Sipping gingerale (flat and room temperature) helped me when I felt nausea. Also sucking on mints gave me some relief.
I will be having my routine labs drawn end of Jan. People can’t believe me when I say that I dread that needle. They think that because I’m “used to it”, that it should be easy for me. Ha!
Keep in touch. Let me know how the change in taking ursodiol affects the discomfort.
Rosemary

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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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My son just got that diagnosis…he is in the hospital and because they could not get in to
Put stents in his bile ducts that are clogged, they put a drain directly in .

They hope to be able to put stent in tomorrow (2nd attempt) … what is his prognosis treatment and as it progresses what will his quality of life be like?

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@shawnvidali56

My son just got that diagnosis…he is in the hospital and because they could not get in to
Put stents in his bile ducts that are clogged, they put a drain directly in .

They hope to be able to put stent in tomorrow (2nd attempt) … what is his prognosis treatment and as it progresses what will his quality of life be like?

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@shawnvidali56, I want to welcome you to Mayo Connect. My first message to you is that your son is where he needs to be right now, in the hospital where he can be observed and treated as needed. When the bile ducts are damaged, bile can back up in your liver and sometimes lead to irreversible scarring of liver tissue (cirrhosis). I had a stent once when my bile ducts were becoming clogged from a different liver disease.

Primary Biliary Cholangitis (PBC), is a chronic disease Currently there is no cure. By working together with the doctor, medications are available to help slow the progression of the disease and prevent complications. Sometimes if the medications and lifestyle do not stop the progression of the disease, a transplant could be necessary. My girlfriend was around 65 when she was diagnosed and she had no complications from it.

Here is information about Primary biliary cholangitis. You will find information about diagnosis, treatment, and healthy lifestyles, as wall as possible symptoms and outcomes.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
shawnvidali56, I hope that your son has a good night. And that the stent placement goes well tomorrow.
I had a different bile duct disease, and I want you to know that I am here and ready to help you in any way that I can from my experience.
What kind of symptoms did your son have leading up to the PBC diagnosis and hospitalization?

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@shawnvidali56

My son just got that diagnosis…he is in the hospital and because they could not get in to
Put stents in his bile ducts that are clogged, they put a drain directly in .

They hope to be able to put stent in tomorrow (2nd attempt) … what is his prognosis treatment and as it progresses what will his quality of life be like?

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@shawnvidali56, It has been a while since I heard from you and I am concerned. Were the doctors were successful in the 2nd attempt to put in a stent. What have they told you about any future treatment?

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