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.

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

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 31, 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 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

REPLY
Deena | @mrsdeecee | Jul 31, 2016

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

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 31, 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

@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

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 31, 2016

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

REPLY
Deena | @mrsdeecee | Jul 31, 2016

Have not been tested in 18 months had a hard time Im live on long Island NY by Conn. The many GI I seen were not good they would tell me your going to die and need chlorestetal meds? Horrible So started testing in NYC problem is one doc does one organ the specialist seen a lesion on pancteatic head over a year ago and had a long talk with Dr friend no more testing I can read all results but I have a horrible feeling all the time maybe diabetes ? Runs in family so how did the urso make you feel any energy? Numbers come down?waiting on my psncteatic dr to call tomorrow so maybe he could hook me up with liver specialist in NY presbyterian why did you stop taking it? Heard a lot of itch complaints associated with urso or is it coinscidence? So tired right now I need to know when you get chance thankyou so much you cann only learn so much from books Deena

REPLY
1 reply
Deena | @mrsdeecee | Jul 31, 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

I am so optimistic since I started reading all these post have a new out look on my life! I felt so alone one of the worst symtoms of pBS is look fine Its finally showing now I gave up 18 months ago and owe thanks to the staff wonderful ladys and all the people that have posted on here Im going to give a fight! I want my life my world back. I have all of you on my side and of course I am on all off your sides I know quite a bit on auto immune nutrition and will be my pleasure to share what I have learned and thank you Rosemary yes I will follow you around the site thanks Once I get a little more familar with it on my phone need to be on PC !and Yes Collene I meant what I said about that lady! Have a great night thank you all for taking my lonliness away so tired hope we all have a pleasant night and sleep well Deena

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 31, 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

Fascinating @jackieg. Thanks for describing your experience with the pill cam. Mayo Clinic offers this information about capsule endoscopy http://www.mayoclinic.org/tests-procedures/capsule-endoscopy/basics/definition/prc-20012773, but I also like to hear people's first-hand experiences.

@mrsdeecee, the device used is marketed under the name PillCam (tm) small bowel capsule.

REPLY
jackieg | @jackieg | Aug 3, 2016
In reply to @mrsdeecee "Have not been tested in 18 months had a hard time Im live on long Island..." + (show)
@mrsdeecee

Have not been tested in 18 months had a hard time Im live on long Island NY by Conn. The many GI I seen were not good they would tell me your going to die and need chlorestetal meds? Horrible So started testing in NYC problem is one doc does one organ the specialist seen a lesion on pancteatic head over a year ago and had a long talk with Dr friend no more testing I can read all results but I have a horrible feeling all the time maybe diabetes ? Runs in family so how did the urso make you feel any energy? Numbers come down?waiting on my psncteatic dr to call tomorrow so maybe he could hook me up with liver specialist in NY presbyterian why did you stop taking it? Heard a lot of itch complaints associated with urso or is it coinscidence? So tired right now I need to know when you get chance thankyou so much you cann only learn so much from books Deena

Jump to this post

I'm on urso with no bad side effects. I was told itching is symptom of PBC. Haven't heard of the other med. Dr can do blood work to find out if you are diabetic. Take Care

REPLY
jackieg | @jackieg | Aug 3, 2016
In reply to @mrsdeecee "Stay calm stress is bad watch your diet low fat exercise and be kind to your..." + (show)
@mrsdeecee

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 !

Jump to this post

Thank u for post. I will check out Paleo diet. I know nothing about it but I'll do anything that will help.

REPLY
jackieg | @jackieg | Aug 3, 2016
In reply to @colleenyoung "Hi @jackieg. I want to add my welcome to Rosemary's. Glad to have you join the..." + (show)
@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/

Jump to this post

Thank u Colleen. I will read the links since I need to learn about this disease.

REPLY
View MoreView Less
Please sign in or register to post a reply.