PBC or not PBC

[Roxanne9]

Hi I’m new here. I was recently told that I tested positive for autoimmune and a Fibro Scan was done on my liver received a score of F4- cirrhosis. Non alcoholic liver disease. I’m waiting for a biopsy to determine what type of autoimmune and I guess the extent of the liver damage. I’ve been researching it myself and ended up here because the only symptom other than the occasional pain on the right quadrant, and spleen or pancreas pain. Is the itch. I used to get itchy and I would scratch till raw. Now I get these things that look like bug bites. One nodule it turns red itchy and it will last two days then clears up like it never happened. I had them on my face. I originally thought it was a pimple but it disappeared in two days. I’ve been fortunate to have white clear skin hardly any pimples when I was young. I m now getting a little bit of a orangey tint but with a tan. Does this sound like it could be PBC? I probably shouldn’t be researching all this but my biopsy is not till the end of this month snd I’ve been waiting since May.

[ninjagirlwebb]

You can look at the lab work and there are certain indications for pbc.

What tests do doctors use to diagnose primary biliary cholangitis?

Blood tests

For a blood test, a health care professional will take a blood sample from you and send the sample to a lab. Your doctor may recommend the following blood tests.

Anti-mitochondrial antibodies (AMA). Anti-mitochondrial antibodies are found in the blood of about 95% of people with primary biliary cholangitis.4

Liver tests. Liver tests can show abnormal liver enzyme levels, which may be a sign of damage in your liver or biliary tract. Higher-than-normal levels of the liver enzyme alkaline phosphatase occur in people with diseases that destroy or block the bile ducts, such as primary biliary cholangitis.

Your doctor may diagnose primary biliary cholangitis if you have anti-mitochondrial antibodies and higher-than-normal levels of alkaline phosphatase in your blood, even if you have no other signs or symptoms of the disease.

Cholesterol. People with primary biliary cholangitis may have higher-than-normal cholesterol levels.

I was diagnosed with pbc via biopsy but the labs suggested autoimmune hepatitis. My biopsy was deemed inconclusive so my liver doctor sent the biopsy slides to a renown liver pathologist for a 2nd opinion and then was diagnosed with pbc.

My LFTs during routine bloodwork were elevated which prompted my primary care doctor to send me to the liver doctor. My pbc was in early stages. Upon diagnosis, liver doctor prescribed ursodiol for me. I see him every 3 months for monitoring. Did a fibroscan in March and it was fine.

Hope this helps. PBC is not curable but it can be managed and you will be fine with medication.

[Roxanne9 in reply to ninjagirlwebb]

Hi, thank you for the information. My blood work shows, high LFTs, high cholesterol, positive ANA but normal ALP. Pending biopsy. I haven’t been diagnosed I’m just thinking I might have it being that I have pain around the spleen and it also feels swollen.

[Roxanne9 in reply to Roxanne9]

I forgot to mention that my ferritin levels are also high. I don’t know what would be related to.

[ninjagirlwebb in reply to Roxanne9]

The in depth labs that my liver specialist ordered, ran down the entire list of possible clues to what it could be. My doctor drew me a diagram of what each test result may mean. When it was not clear from the labs, he said we need to do a biopsy. My ferritin was normal. I have very high ggt levels and a few other abnormal titers. This was like 9 years ago so my memory is fuzzy.

Don’t worry too much about it for now. There is nothing you can do until the biopsy and pathology report comes back.

Just make sure you have a good rapport with your liver specialist. He/she should explain the diagnosis, the treatment, order additional tests required, and answer any questions you may have.

After my diagnosis, I pulled medical journals about pbc and read through them. I took the best one I read and highlighted the key points. Then I booked an appointment with my doctor to explain what I highlighted. He was impressed that I actually read through medical journals & went through the research with me.

Hope this helps.

[Jlruggie]

do you have anti mitochondrial antibody??? Then yes PBC and liver biopsy will confirm tge stage of fibroses you are in. See my reply to Tan Gran above for homeopathic supplement to taking Ursodoil and getting in line for clinical trial drug to reduce fibroses

[Roxanne9 in reply to Jlruggie]

Thank you for your response. The answer is yes. But also leaning to AIH. I’m hoping biopsy helps to determine, so we can move forward with the proper treatment. For now just liver friendly diet and exercise.

[Jlruggie in reply to Roxanne9]

what is AIH?

What is the hope of biopsy determining beyond stage of fibroses?

Someone correct me if I’m wrong. So far only treatment for PBC I’ve learned of is Ursodoil, followed by Obetecholic acid, or Fenofibrate to further bring ALP/AST/ALS enzymes down and now a clinical trial with Setanix to bring ALP and fibroses down. I may have spelled acronym ALS and Setanix wrong.

All have side effects of itching, fatigue. You have to learn to tolerate.

Let’s us know if you learn of other treatments to bring fibroses down. Fibroses leads to stiffening and cirrhosis , and waiting in line for a liver transplant. That’s what we are trying to avoid.

what is your liver friendly diet?

When experts and specialists say there’s nothing more we can do for you, we get busy like this. Let’s.

I’m telling myself, if I refuse to get up, exercise, give up sugar, additives, pesticides, daily alcohol, white processed foods, cigarettes and eating processed scared and stressed cows and pigs, I am courting death anyway. It’s just faster with PBC. It’s simple. Why bother doing what PBC specialist doctors say?

Download Yuka app to check your foods and products for liver poisoning additives our country allows us to consume that keeps companies rich and us sick. 👍

[OdinsMom]

If you are actually in cirrhosis the skin color changes and the itch can come from that no matter what the disease process is. Wait for the biopsy