Living with Primary Biliary Cholangitis (PBC)

Back again, I guess. I see there are a few questions popping up about PBC. My situation is pretty much holding steady. I’m constantly running in and out of doctor appointments—labs are a bit better one week, a bit worse the next. Basically, I’m still taking all my meds, though I won't lie, I don't stick to the diet strictly enough to win any awards. I've just kind of figured out how to live with this thing. If anyone wants to chat, feel free to give me a shout—I feel like I've already done enough promoting for PBC anyway. PA-PA

Michael Walker8 said:Back again, I guess. I see there are a few questions popping up about PBC. My situation is pretty much holding steady. I’m constantly running in and out of doctor appointments—labs are a bit better one week, a bit worse the next. Basically, I’m still taking all my meds, though I won't lie, I don't stick to the diet strictly enough to win any awards. I've just kind of figured out how to live with this thing. If anyone wants to chat, feel free to give me a shout—I feel like I've already done enough promoting for PBC anyway. PA-PA

Hello everyone. It’s been about a month since my diagnosis of PNC was officially confirmed. I've gone through the whole gauntlet—all the medical procedures, the deep dives into internet research, and those inevitable emotional lows that come with news like this. I'm feeling much more stable now, though, and I'm really trying to focus on just living my life alongside this...
My doctors are still fine-tuning my treatment plan at the moment, but right now I'm taking Ursodiol 3 x3 as they try to manage some pretty intense inflammation, and I'm also looking into specific foods and supplements that might help...

I was wondering about a couple of things

1. Since Ursodiol helps slow down the progression, are there any specific supplements or preparations that actually work toward regenerating liver tissue? Based on my biopsy results, my liver shows moderate scarring. This process has been going on for a few years now, and having a compromised liver led to all those classic symptoms—that crushing fatigue, low energy, bloating, gas, and even swelling in my legs... Thankfully, those aren't nearly as bad as they used to be, largely thanks to the medication and sticking to a diet low in fats and avoiding irritants like heavy meats or certain types of vegetables. I could go on about that for ages if anyone is interested...

2. Also, has anyone had their doctor mention stem cell therapy? Is there actually any real discussion or movement regarding that as a treatment option for this disease...?

Well, I thought I might share this, just in case it helps someone else out there... After three months on the therapy, all my liver markers have finally returned to normal levels. Even my sedimentation rate, which was sitting around 40, has dropped down to 70—it’s definitely moving in the right direction! Honestly, I’ve been feeling so much better lately, like I actually have some real energy back in my system. Of course, there are those days where I overdo it just a bit too much, and then I find myself needing at least a full day just to reset... I've realized that stress and constant worrying are probably what do me the most harm...
Best,

I finally tracked down a thread that actually hits home for me. It’s not perfectly aligned with everything I need, but I’ll take what I can get... My husband started bleeding from esophageal varices back on February 4th, 2009. That was the moment we truly realized he was dealing with advanced cirrhosis. We had honestly brushed off the earlier warning signs because his liver enzyme tests were hovering just about at the normal range. But looking back, there was yellowing of the skin, swelling in the legs, ascites, hair loss, and even breast tissue development... Anyway, I won't ramble too much, but my husband underwent a transplant this past February. He’s doing wonderfully now, though obviously, he's staying strictly on his medication regimen. I was wondering if anyone could tell me if there is a specific sub-forum dedicated solely to transplant recipients? And please, if anyone has questions about anything I've mentioned here, feel free to ask.

So, I’ve got a question floating around in my head... honestly, I wasn't even sure where to drop this or if anyone would actually have an answer, but hey—might as well give it a shot, right?
Basically, I'm trying to track down some stats regarding how many people in the US are living with or dying from liver cirrhosis.
I've been digging through everything online, but for some reason, I just can't seem to pin down the specific numbers I'm looking for... it's driving me a little crazy. If anyone happens to have any info or knows where I can find a reliable source, I’d really appreciate the help.
Thanks a bunch!

Hi there,
I've just been diagnosed with PNC.

I'm 32 with a 10-month-old baby. I also have RA. It’s quite overwhelming right now.

Could someone please share their experience? I'm feeling pretty anxious. How long have you all been managing this, and have any women here successfully navigated pregnancy after their diagnosis?

thanks

Hey everyone, so I’ve been diagnosed with PBC, and looking back, it all kicked off around July 2011 when my appetite just vanished—and then the weight started dropping like crazy. I ended up losing 20 kg total. It got to the point where I was so weak I had to be hospitalized, and that’s when they finally gave me the PBC diagnosis. Pretty soon after, other stuff started happening too—like this mucus buildup in my lungs, some shortness of breath every now and then, and lately, these white patches on my skin that seem to be spreading. I’ve laid out all these symptoms to my doctors, but they’re dead set on insisting it’s got nothing to do with the PBC... they keep suggesting maybe some other autoimmune issues are cropping up. And honestly? That’s where it ends. Even though I’ve begged them to look into it, they won't even refer me to an immunologist. I haven't had much luck with the medical side of things, really. I used to be under the care of Dr. Hrstić over at Mayo Clinic, but she left, and now I'm stuck with these younger doctors who—if you ask me—don't seem to know much about this disease at all. To top it all off, they actually referred me to a psychiatrist because of the weight loss—which I went along with just so I could keep getting treatment, even though I know I don't have typical anorexia. I've always been a huge foodie, never been on a diet in my life, and before all this, I was a solid 136 lbs at 5'3". My takeaway from all this mess is that, unfortunately, you really have to be your own doctor. If anyone here has dealt with similar issues, please reach out—I'd love to chat and figure out how to manage these symptoms and speed up my recovery. Hang in there, everyone!

Hey everyone.
I'm a 33-year-old guy, and I was diagnosed with PNC
about two months ago. My AMA antibodies and everything else came back negative, though my enzyme levels were pretty high—especially GGT (though they've settled back into the normal range now). The doctors just told me based on my liver biopsy that it fits the profile for PNC. Honestly, I'm feeling pretty lost. Is it possible the biopsy is wrong? I mean, most people I hear about with this condition are women over 50. I’ve already had an MRI, X-rays, and a CT scan, and all those results looked fine. What should my next move be? Could they have possibly made a mistake here?

I’m 43 years old, and it took nearly two years of endless doctor visits and exhaustive testing before I finally received a diagnosis of PNC 😢.
It all started with this relentless itching on my legs—an irritation so intense at times it felt truly unbearable.
Interestingly, it seems to subside during the summer months, almost vanishing entirely, only to resurface with renewed vigor once autumn rolls around.
As for treatment, I am currently taking Ursodiol, two capsules twice a day.
To stay healthy, I hit the gym three times a week, which has certainly helped me drop some weight and improve my overall fitness, yet that underlying sense of anxiety remains ever-present in the back of my mind. 😢

If anyone here has navigated similar waters, would you be so kind as to send me a private message?

Hey everyone, someone close to me was just diagnosed with primary sclerosing cholangitis. We’re looking to connect with anyone else out there dealing with the same thing so we can swap stories and advice. Hit me up in my DMs—we gotta stick together on this one. 💪