I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!
Hello @jlsk1974, welcome to Mayo Clinic Connect. There is another active discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.
@jlsk1974, asking questions and preparing for your upcoming appointment is a great idea. Do you normally write down a list of questions for your doctor or upcoming appointments? I have done this for appointments when I did not want to forget to ask a question.
Hi @jlsk1974 I wanted to join @johnbishop in welcoming you to Connect. Per his suggestion, you may have noticed I moved your post to this existing discussion on Primary Biliary Cholangitis so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.
I also would like to introduce you to fellow Connect members @peach414144@cinnamon215@ca426 and @rosemarya as they have similar experience or may be able to provide you support.
What concerns do you have about your symptoms or your conditions? That may be a good place to start building that question list as @johnbishop suggested.
I was diagnosed with Lupus, Sjogren, and primary biliary Cirrhosis in 2010. I just got diagnosed with Primary Biliary Cholangitis with scarring of the liver this month. I have a couple of weeks before my appointment with my GI doctor. What questions should I ask? What are some good resources for information and the stages of PBC? Thank you for your time, God bless!
@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.
Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor. https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.
@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.
Hello again, Rosemary. I came back over to read your message again. I was not familiar with vitiligo and researched it a bit. But I was familiar with PSC because my GI first considered it (among other conditions) before he sent me to Vanderbilt in Nashville for a liver biopsy. Your AI experiences have been so drastic, and I am so sorry for all you have been through. I have quite a "collection" of AI diseases now, so I try to learn something new everyday. My doctors have helped me, bless their hearts, but they can't be at my beck and call every time I develop a new symptom! 😉 Since the PBC diagnosis, my experience has been that new symptoms usually turn out to be a new diagnosis. I certainly hope you have not developed additional AI conditions. You have had enough trauma for a lifetime!
Thank you for sharing with us here.
@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.
Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor. https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.
I meant to ask you, Rosemary, perhaps you can point me in the right direction. I am hearing more and more about the use of CBD oil for the liver inflammation (etc.) and the good results it gives. I am aware of everything I put in my mouth and filter it through "is this going to hurt me or help me?" I would like to know what the truth is. What research, if any, has been done on the effects on the liver? Thank you.
Hello again, Rosemary. I came back over to read your message again. I was not familiar with vitiligo and researched it a bit. But I was familiar with PSC because my GI first considered it (among other conditions) before he sent me to Vanderbilt in Nashville for a liver biopsy. Your AI experiences have been so drastic, and I am so sorry for all you have been through. I have quite a "collection" of AI diseases now, so I try to learn something new everyday. My doctors have helped me, bless their hearts, but they can't be at my beck and call every time I develop a new symptom! 😉 Since the PBC diagnosis, my experience has been that new symptoms usually turn out to be a new diagnosis. I certainly hope you have not developed additional AI conditions. You have had enough trauma for a lifetime!
Thank you for sharing with us here.
@cinnamon215, Hi, it is good to hear from you. Thanks for checking on me. I am curious about your mention of 'new symptoms' equating with new diagnoisis. What do you mean? I realize that autoimmune diseases often share symptoms, and that is why they are so dicfficult to name.
Since your PBC diagnosis, have you been receiving any treatment or monitoring? If so, you should not feel you are placing them at your beck and call everytime you have a new symptom. Successful treatment requires open communication between you and your provider.
A lesson I learned early on with liver disease was that if a roomfull of people have the samy liver disease, that each one might exhibit different symptoms. Each symptom needs to be dealt with as it appears. Another thing is that all of the different liver diseases do share some common symptoms.
I have no information about research for the safety and use of CBD oil and liver. I urge you to go to only credible resources, and to avoid the 'dot coms' who are promoting a product for a profit.
I commend you for your good practice of being careful of what you put into your body.
I @julie3258 you may have noticed I moved your post to this existing discussion on autoimmune hepatitis so that you can connect with others who have experience with this condition. Simply click VIEW & REPLY in your email notification to find your post.
I'd like to introduce you to fellow Connect members @charicen and @mahdi123 as they have mentioned autoimmune hepatitis in the past. I also wanted to introduce you to @rosemarya as she has experience with another liver disease and can offer you support.
Back to you @julie3258 how long have you had these illnesses? How are you currently being treated? How are you feeling?
@julie3258, I have experience with liver disease and liver transplant. I am happy that I have been tagged to meet you, and I am available to share any information from my own experience. I successfully transplanted 10 years ago, and my doctors always told me that there are some commonalities with all liver diseases, so even though I didn't have either AIH or fatty liver disease, I am here.
How can I help you?
@julie3258 I did not have hepatitis, but I did have fatty liver, which caused cirrhosis. Once you have cirrhosis, from what I have seen, things are pretty much the same, but different, no matter the cause. I say the same but different because we all tend to have different symptoms. The first recognition that I had something wrong was when I had an HE episode. From that point until I was finally diagnosed with cirrhosis, was almost a year and a half. The hepatologist told me I probably had cirrhosis for about 10 years but it takes a long time before it makes itself known.
If you have any specific questions, please feel free to ask. We are here for you. I wish I was aware of this forum when I was going through so much prior to transplant.
JK
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Hello @jlsk1974, welcome to Mayo Clinic Connect. There is another active discussion where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.
> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
-- https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
You mentioned wanting to know what questions to ask. There are some good tips on seeing a new specialist or doctor by @roch here:
— https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
I also found a few sites that are good sources of information on Primary Biliary Cholangitis that may be helpful.
National Organization for Rare Disorders:
-- https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/
American Liver Foundation:
-- https://liverfoundation.org/for-patients/about-the-liver/
@jlsk1974, asking questions and preparing for your upcoming appointment is a great idea. Do you normally write down a list of questions for your doctor or upcoming appointments? I have done this for appointments when I did not want to forget to ask a question.
Hi @jlsk1974 I wanted to join @johnbishop in welcoming you to Connect. Per his suggestion, you may have noticed I moved your post to this existing discussion on Primary Biliary Cholangitis so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.
I also would like to introduce you to fellow Connect members @peach414144 @cinnamon215 @ca426 and @rosemarya as they have similar experience or may be able to provide you support.
What concerns do you have about your symptoms or your conditions? That may be a good place to start building that question list as @johnbishop suggested.
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Like -
Helpful -
Hug
1 Reaction@jlsk1974, Primary biliary cholangitis, was previously called primary biliary cirrhosis. So it looks to me like your diagnosis has not changed, however the disease has progessed a little with some scarring since you were first diagnosed. Unfortunately, it is a chronic disease, and this is what it does. I have a friend who has known that she has had it for nearly 20+ years, and she 'just has it' Her only symptoms are tiredness. She is cared for by a GI. She had been taking URSO, but I have not chatted with her recently about it.
Here is one of my favotire resources, because it is an easy read, and easy to locate information with the headings. I want point out the questions that you will want to ask your doctor, and also the questions you should be prepared to answer for your doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I am happy that you have come here with your questions. I had a different bile duct disease, and I am here to lend any support that I can.
I look forward to hearing from you.
-
Like -
Helpful -
Hug
1 ReactionHello again, Rosemary. I came back over to read your message again. I was not familiar with vitiligo and researched it a bit. But I was familiar with PSC because my GI first considered it (among other conditions) before he sent me to Vanderbilt in Nashville for a liver biopsy. Your AI experiences have been so drastic, and I am so sorry for all you have been through. I have quite a "collection" of AI diseases now, so I try to learn something new everyday. My doctors have helped me, bless their hearts, but they can't be at my beck and call every time I develop a new symptom! 😉 Since the PBC diagnosis, my experience has been that new symptoms usually turn out to be a new diagnosis. I certainly hope you have not developed additional AI conditions. You have had enough trauma for a lifetime!
Thank you for sharing with us here.
-
Like -
Helpful -
Hug
1 ReactionI meant to ask you, Rosemary, perhaps you can point me in the right direction. I am hearing more and more about the use of CBD oil for the liver inflammation (etc.) and the good results it gives. I am aware of everything I put in my mouth and filter it through "is this going to hurt me or help me?" I would like to know what the truth is. What research, if any, has been done on the effects on the liver? Thank you.
-
Like -
Helpful -
Hug
1 Reaction@cinnamon215, Hi, it is good to hear from you. Thanks for checking on me. I am curious about your mention of 'new symptoms' equating with new diagnoisis. What do you mean? I realize that autoimmune diseases often share symptoms, and that is why they are so dicfficult to name.
Since your PBC diagnosis, have you been receiving any treatment or monitoring? If so, you should not feel you are placing them at your beck and call everytime you have a new symptom. Successful treatment requires open communication between you and your provider.
A lesson I learned early on with liver disease was that if a roomfull of people have the samy liver disease, that each one might exhibit different symptoms. Each symptom needs to be dealt with as it appears. Another thing is that all of the different liver diseases do share some common symptoms.
I have no information about research for the safety and use of CBD oil and liver. I urge you to go to only credible resources, and to avoid the 'dot coms' who are promoting a product for a profit.
I commend you for your good practice of being careful of what you put into your body.
What kind of new symptoms have you experienced?
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Like -
Helpful -
Hug
2 ReactionsI am looking for people who experience autoimmune hepatitis or stage 3 fatty liver disease
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Hug
2 ReactionsI @julie3258 you may have noticed I moved your post to this existing discussion on autoimmune hepatitis so that you can connect with others who have experience with this condition. Simply click VIEW & REPLY in your email notification to find your post.
I also wanted to share a link to this discussion on liver biopsy as you may be able to find others with similar experiences: https://connect.mayoclinic.org/discussion/liver-biopsy/?pg=1#chv4-comment-stream-header
I'd like to introduce you to fellow Connect members @charicen and @mahdi123 as they have mentioned autoimmune hepatitis in the past. I also wanted to introduce you to @rosemarya as she has experience with another liver disease and can offer you support.
Back to you @julie3258 how long have you had these illnesses? How are you currently being treated? How are you feeling?
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Like -
Helpful -
Hug
2 Reactions@julie3258, I have experience with liver disease and liver transplant. I am happy that I have been tagged to meet you, and I am available to share any information from my own experience. I successfully transplanted 10 years ago, and my doctors always told me that there are some commonalities with all liver diseases, so even though I didn't have either AIH or fatty liver disease, I am here.
How can I help you?
@julie3258 I did not have hepatitis, but I did have fatty liver, which caused cirrhosis. Once you have cirrhosis, from what I have seen, things are pretty much the same, but different, no matter the cause. I say the same but different because we all tend to have different symptoms. The first recognition that I had something wrong was when I had an HE episode. From that point until I was finally diagnosed with cirrhosis, was almost a year and a half. The hepatologist told me I probably had cirrhosis for about 10 years but it takes a long time before it makes itself known.
If you have any specific questions, please feel free to ask. We are here for you. I wish I was aware of this forum when I was going through so much prior to transplant.
JK
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Like -
Helpful -
Hug
1 Reaction