Primary Biliary Cholangitis and Autoimmune Hepatitis

Posted by mahdi123 @mahdi123, Dec 16, 2018

Hi this is Mahdi

@cinnamon215

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.

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@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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I am looking for people who experience autoimmune hepatitis or stage 3 fatty liver disease

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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 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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@julie3258

I am looking for people who experience autoimmune hepatitis or stage 3 fatty liver disease

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@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?

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@julie3258

I am looking for people who experience autoimmune hepatitis or stage 3 fatty liver disease

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@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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@rosemarya

@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?

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Hi my sister has the same liver problem since 5 years but her doctor says till now she doesn’t need transplanting
Tell me please what was your liver status? when you did the transplanting
Thanks

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@mahdi123

Hi my sister has the same liver problem since 5 years but her doctor says till now she doesn’t need transplanting
Tell me please what was your liver status? when you did the transplanting
Thanks

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@mahdi123, I was diagnosed with liver disease nearly 8 years (2002?)before my gastroenterologist sent me to the transplant department for transplant evaluation. During those years, he monitored my condition thru routine (4 month) labs and office appointments.
My liver function numbers were stable for the most part, then a slow steady rise in liver function labs began at the same time as bothersome symptoms -itching, nausea, more fatigue.
In September 2008, I had my 1st appointment with transplant dept. They examined me and did some scans and labs. The transplant doctor said I would be eligible for a liver transplant because my MELD score of 15 was the minimum to be listed for a liver at that particular time. My evaluation tests were in November, and I was added to the transplant list. Then (in my case) I declined steadily. I transplanted in April 2009. Not everyone follows the same path. I think that my fast decline surprised my doctors.

What has your sister's doctor said about when/if she will need transplant? How is she feeling?

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@rosemarya

@mahdi123, I was diagnosed with liver disease nearly 8 years (2002?)before my gastroenterologist sent me to the transplant department for transplant evaluation. During those years, he monitored my condition thru routine (4 month) labs and office appointments.
My liver function numbers were stable for the most part, then a slow steady rise in liver function labs began at the same time as bothersome symptoms -itching, nausea, more fatigue.
In September 2008, I had my 1st appointment with transplant dept. They examined me and did some scans and labs. The transplant doctor said I would be eligible for a liver transplant because my MELD score of 15 was the minimum to be listed for a liver at that particular time. My evaluation tests were in November, and I was added to the transplant list. Then (in my case) I declined steadily. I transplanted in April 2009. Not everyone follows the same path. I think that my fast decline surprised my doctors.

What has your sister's doctor said about when/if she will need transplant? How is she feeling?

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The doctor of my sister says symbtoms should come up like stomach size and other cannot remember
Now she feels fattiuq and pain in west and legs started three days ago

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@mahdi123, I know that you must be frightened and confused. I am sorry that your sister has liver disease and the symptoms. Like her, I am a patient and I do not know the answer to when the doctor will determine when to send her for transplant testing. The symptoms that your doctor are all listed in this link that I want to share with you. I hope that you find it helpful as your sister wait for the next step. It can be a long slow process, so reading and learning will be to your advantage as you and the doctor take care of your sister.
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Is her doctor doing routine labs? That is how my doctor knew when to send me to the transplant center.
When is her next appointment? It is okay to call the doctor in between appointments when you have any concern.
Do you live near your sister?

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@rosemarya

@mahdi123, I know that you must be frightened and confused. I am sorry that your sister has liver disease and the symptoms. Like her, I am a patient and I do not know the answer to when the doctor will determine when to send her for transplant testing. The symptoms that your doctor are all listed in this link that I want to share with you. I hope that you find it helpful as your sister wait for the next step. It can be a long slow process, so reading and learning will be to your advantage as you and the doctor take care of your sister.
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
Is her doctor doing routine labs? That is how my doctor knew when to send me to the transplant center.
When is her next appointment? It is okay to call the doctor in between appointments when you have any concern.
Do you live near your sister?

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Yes her doctor does lab tests every 4 months

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@mahdi123

Yes her doctor does lab tests every 4 months

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@mahdi123, That is how often my labs were drawn.
In the US, MELD score is used as an indicator for when to evaluate a patient for posible liver transplantation. MELD is an acronym for model for end-stage liver disease, and MELD score is the score provided to patients based on how urgently they need a liver transplant in the next three months. It’s used by hospitals and the government to prioritize allocation of deceased donor livers for transplant. The MELD score can range from 6 (less ill) to 40 (gravely ill). The same MELD score definition and calculation are used by all transplant centers in the U.S. – https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

Here is a discussion where other members are talking about their 'wait' until they can be referred for a liver transplant. There are many different experiences and things being shared. I tthink that is you read thru the responses you will see that everyone is on a different timeline.
You and your sister are not alone.
@mahdi123, I invite you to read and to participate with questions to anyone:
It's not all about the MELD Score – https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/

Has your sister's doctor talked to you about whether there is a score to measure when your sister will be referred for transplant?

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@rosemarya

Hi, Mahdi. Welcome to Connect. Mayo Clinic Connect is an online community where you can share your experiences and find support from people like you. I would like to help you. Would you share what brought you to Connect? What question do you have about Primary Biliary Cholangitis or Autoimmune Hepatitis.

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Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.

Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.

Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.

I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.

I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.

My MELD score is only 9, or was 9 the last time I checked.

How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.

Any words of wisdom? What’s the next step for me.

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I have horrible itching in the evening and fatigue during the day. Labs all good, and Meld of 12.

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@jacinta

Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.

Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.

Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.

I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.

I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.

My MELD score is only 9, or was 9 the last time I checked.

How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.

Any words of wisdom? What’s the next step for me.

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@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.

"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.

Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/

Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?

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@johnshaw

I have horrible itching in the evening and fatigue during the day. Labs all good, and Meld of 12.

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@johnshaw, @jacinta,
You are not alone with itching. I want to invite you to the discussion, Liver disease itching, where you cwill meet other patients who also experience itching with liver disease.
https://connect.mayoclinic.org/discussion/liver-disease-itching/

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