Living with Primary Biliary Cholangitis (PBC)

It all started when my lab results showed elevated levels: AST at 42, ALT at 88 H, and GGT at 188 H. I decided to
pursue more testing. It was eventually determined that I have primary biliary cirrhosis. My AMA fluorescence came back positive at 1:1280, while the normal range is
1:80. I am waiting for a liver biopsy scheduled for September 20, 2007. My doctor explained that this is
a condition where the liver essentially attacks itself. There is no cure; the goal is simply to
slow the progression. I don't know anything else and I am feeling quite overwhelmed. I am 50 years old. Please
share any information if you know more about this. Thanks.

Austin Martinez10 said:It all started when my lab results showed elevated levels: AST at 42, ALT at 88 H, and GGT at 188 H. I decided to
pursue more testing. It was eventually determined that I have primary biliary cirrhosis. My AMA fluorescence came back positive at 1:1280, while the normal range is
1:80. I am waiting for a liver biopsy scheduled for September 20, 2007. My doctor explained that this is
a condition where the liver essentially attacks itself. There is no cure; the goal is simply to
slow the progression. I don't know anything else and I am feeling quite overwhelmed. I am 50 years old. Please
share any information if you know more about this. Thanks.

Aunt May... please keep your chin up! I can only imagine how difficult this feels, especially while you're stuck in that uncomfortable limbo waiting for biopsy results; a month can feel like an eternity when you're facing uncertainty. I truly believe things will improve and that you'll find your footing again. Since every medication eventually passes through the liver to be processed from a toxin into something harmless, I would suggest incorporating some Aloe vera juice into your routine to help support cell regeneration (you can find a liter at a local pharmacy for about $46, perhaps in a green bottle or a brand like ExxonMobil's version $40.). Just taking one capful a day helps. Additionally, artichoke effervescent tablets or Silymarin capsules—which are also plant-based—can assist with liver detoxification by helping the organ flush out toxins. For hydration, sticking to sugar-free lemonade and cutting out heavy fats from your diet might be beneficial. If you experience abdominal discomfort or bloating, a warm cup of chamomile tea sweetened with chestnut honey can be quite soothing. I hope this provides even a small amount of comfort and helps ease the fear that seems to linger beneath the sadness in your message. Sending you so much strength and wishing you a steady recovery!!!

I appreciate the support. I am genuinely quite anxious because no one has
reached out regarding this illness to let me know how it progresses or what the typical
course looks like. I will follow all instructions strictly to ensure my recovery. If there is any news,
please let me know.

If it turns out to be primary biliary cirrhosis, you’ll be put on corticosteroids—and honestly, you’re going to feel a lot better once they kick in. They really help calm down that inflammation (since, let's face it, inflammation is basically the root of every autoimmune issue). You will have to be pretty mindful about what you're eating, too. Your specialist will likely walk you through a specific diet to follow. Don't panic, though. Just hang in there and keep us posted on how things go. Good luck!🙂

My apologies for the delayed response. Thank you for replying. I intend to wait for the biopsy results before deciding on next steps. It is a stressful situation, but there is nothing more I can do right now.
I am currently looking into Megalomin, as my doctor suggested it would be beneficial. I will share my results once they arrive. Please update me if you learn anything new. Bye.

Hello
I am posting again because I am waiting to hear from anyone dealing with primary biliary cholangitis.
My liver has been diagnosed with primary biliary cholangitis.
Since this was my first time hearing about this condition, I have been terrified. I spent time on
various websites looking for information, but everything suggests this is a rare
and somewhat mysterious disease. I am scheduled for a liver biopsy at the hospital on September 20th. This will
determine the extent of the liver damage and how fast the disease is progressing. Therefore,
I am asking if anyone living with this condition can reach out to me.
I need to understand the prognosis regarding management, treatment, and all other details.
I am struggling deeply and my mental health has declined significantly. For context, I had
a hysterectomy and have been on hormone replacement therapy for five years, along with three years of
antidepressants. My doctor states the medication is not the cause. I have been off hormones for three months now, and I have also stopped taking antidepressants, which has made things even harder. Please contact me. It is hard to believe that I am the only one suffering from
primary biliary cholangitis. THANK YOU AND PLEASE HELP.

Austin Martinez10, if you're fluent in English here, you can find plenty of info and support boards for people dealing with PBC.

Please forgive my delayed thanks. I have been deeply focused on studying PBC, as my English isn't great, and quite a bit of time passed while we were all researching together. There is truly so much information, though it is unfortunate that
not everything is clear to us. After looking into it more deeply, I have a better understanding of the situation. Now, I am simply waiting for the biopsy results to determine the extent and stage of the liver damage. I am heading to the coast to get away from everything and attempt to relax, if possible. Thank you once again. I may make mistakes; I am quite new to all of this and still learning how to navigate everything. My son helps me, though you know how difficult it can be to catch him. I manage on my own, and if I get stuck, he steps in. After all, I am
51 years old. Anyway, we will speak again if there is any news.

Please reach out if anyone here has been diagnosed with primary biliary cholangitis.

Listen, I find myself lurking in this thread quite often because my mom was diagnosed with primary biliary cirrhosis about a year and a half ago after having a biopsy done here in Washington, D.C. If any of you are looking for specifics or just need someone to bounce questions off of, I’m more than happy to share what we know.

A close friend’s mom was recently diagnosed with primary biliary cirrhosis, and honestly—all I can say is that the medical team over at Mercury is absolutely top-tier. I have to give a huge shout-out to Dr. Tatiana Filipec—she is just incredible. Seriously, she’s so selfless, incredibly sharp, and actually easy to talk to, which is a rarity these days. From what I’ve gathered through my own digging, she acts as the main coordinator for their partnership with UNOS.

My mom is currently receiving treatment at Mayo Clinic under Dr. Bosnic. Even though the wait times to see her are pretty brutal, she’s actually quite good—it's no surprise there's a massive crowd of people lining up just to get one of her diagnoses.

ruggedhawk88 said:Listen, I find myself lurking in this thread quite often because my mom was diagnosed with primary biliary cirrhosis about a year and a half ago after having a biopsy done here in Washington, D.C. If any of you are looking for specifics or just need someone to bounce questions off of, I’m more than happy to share what we know.

Sorry, I haven't been online much. I am very interested in learning more because I was just diagnosed. They attempted a biopsy, but it wasn't successful due to fatty liver issues, so I am uncertain about the next steps. My doctor advised three months of rest while we wait on the results from my Ursofalka medication. Please
contact me at 202-555-0149 or 555-012-8894 so we can discuss this. Thank you.

Hey everyone! It’s such a relief to know this illness is staying under control. It isn't just slowing down; it's literally stopped progressing, all thanks to those Ursofalka capsules. They're a supplement, but they really help balance out my liver function. It would be a total nightmare if Ursofalka ever became unavailable. I've been managing this for four years now, and I head to Washington, D.C. twice a year for checkups with Professor Vucelić. Please let me know how long you've all been dealing with your diagnosis.
Austin Martinez10, I'll give you a call since I dealt with some biopsy issues myself.

Bokić
I was diagnosed with primary biliary cirrhosis back in July, and I have been a nervous wreck ever since. I would really appreciate it if you could call me, as I am not online very often and frequently miss messages. Please reach out if you have a moment
so you can explain everything to me in more detail. Just send me your number via message and I will call your landline. Best regards, and please get in touch as soon as possible.

About ten years ago, I got diagnosed with liver disease—primary sclerosing cholangitis—which eventually progressed into biliary cirrhosis. I used to be on corticosteroids, but honestly... for the last five years, I haven't touched any liver meds. I haven't even been sticking to a strict diet. So, is it really possible my lab results are the same as they were a decade ago?

Well, I’m back after a long hiatus. I was posting last year under the handle
Austin Martinez10. I’ve got primary biliary cirrhosis. It’s been quite the ride, and my latest lab results from November 21st were
AST at 21, ALT 38, GGT 66, and ALP 118—which, honestly, I would have killed to have stay right there.
But nope, my AMA came back positive again, sitting at 1:1280 when "normal" is supposed to be 1:100. My doctor just shrugged and said it’s just more proof of the PBC. Since then, I managed to drop a few pounds, but man, it is a struggle to keep it off because I basically live to eat. I’m still on the Ursofalka 4x and Silymarin Forte. If anyone has any actual, useful advice, please hit me up. It feels like hardly anyone else deals with this specific mess. I’d love to hear from someone else out there. I’ll be checking the Forum a bit more often now. Bokić

Hey everyone, wishing you all health in this New Year. First time posting here, and honestly, I’m only here because my dad passed away from liver cancer on January 2nd.
By the time we found out about the cancer, it was already advanced, and he was in really bad shape—on top of everything, his blood vessels were trashed from years of heavy drinking. 😢Besides the cancer, he was also diagnosed with cirrhosis, so I went down a rabbit hole reading every medical resource I could find, with help from a great friend of mine who works in healthcare. What I can say for sure is that for cirrhosis (alongside medical treatment, obviously), this stuff works wonders: dandelion tea mixed with Idjirot root. Also, for liver regeneration, drinking buttermilk several times a day is huge—you know, that liquid left over from making cheese? Every grandma in the Midwest probably has some in her fridge. This stuff is definitely worth using alongside doctor-prescribed treatments for cirrhosis, but as for the cancer... unfortunately, we couldn't make a difference there, at least not in time.

Hang in there, everyone. 👍

Alright, my dear friends, maybe this might actually be helpful for you all... he’s turned out to be quite decent, honestly... just go ahead and read through it yourselves.. http://www.slobodankolic.com/
GOOD LUCK!!

Alright, I need some help here. Does anyone actually have first-hand experience dealing with PBC? If you've been through the ringer with primary biliary cirrhosis, please, give me some advice or just tell me what to expect.
Thanks a million.