All Information and suggestions welcome

[PBCNewbie32]

Hello guys, I am new to this all and I am trying not to get discouraged to say the least. I am a married mother of six, and I am only 35 years old. I just recently got this diagnosis after seeing my GP about many bouts of fatigue and joint pain. We were looking to rule out Lupus, and confirm a diagnosis of RA before she could treat since RA was the diagnosis I had gotten from the VA many years ago back in 2011 or 2012. I wonder if I have had PBC all of this time and it was just misdiagnosed since my rheumatoid factor was negative with this round of testing. I was told that I needed to have a liver biopsy to confirm although all of the serological evidence is there and I am symptomatic, but I have read that I can get what is called a fibroscan. I am confused, frustrated, tired, and drained. My body hurts, and I have been told that I can take nothing. This is all leaving me emotionally inept at this point, as this will probably be my last week of work because I can't continue to call out the way I have been. Any and all information and suggestions that you have are welcome, as I could really use all of the info that I can get at this point. Thanks in advance!

One worn out woman😪😪

[iagra]

Hello, dear Newbie! I'm sorry you have to deal with the symptoms of fatigue and pain. It's hard for anyone, especially, when you have small kids at home. But, don't get discouraged. On this forum, you'll find women who have been diagnosed with PBC 20-25 years ago and still going strong. It's a very slowing progressing disease, and there are meds that slow it down further. You'll soon learn the expression that "you are much more likely to die with PBC than from PBC". Liver biopsy is something that is recommended to establish the baseline for liver fibrosis, to determine the stage. I had it done. No big deal for me. Right after the biopsy, my husband and I, went directly to the car dealer to look at the new car (we were shopping for a new car). There was no pain during the procedure and I don't remember pain after. Maybe some small discomfort for a day or so. Fibroscan or Wave ultrasound (NOT the same thing. In the US, the Wave ultrasound is considered more accurate and used more often) are done once or twice a year, after you had the liver biopsy. Liver biopsy is done only once, the first time. URSO is the most frequently used medication for PBC (there are others as well). I've been on URSO for almost 3 years. So far, no side effects. It's very important to stay positive and be active. Talk to your doctors. There is a lot of information about PBC. It helps to be properly informed to fight the fears.

Best of luck to you!

[PBCNewbie32 in reply to iagra]

Thank you so much for all of the information! I am glad to know that there is not much pain associated with a liver biopsy, and that it's only a one time thing. I was worried big time. 🤗🤗

[Bama_girl in reply to iagra]

Great response! 🤗

[OdinsMom]

Welcome. I would recommend the biopsy as well to confirm PBC (I've had 5 at this point)-no problems for me. Fibroscan can only tell you how scarred your liver is not the cause of it. First though, find yourself a good hepatologist. Most other drs have never heard of PBC and even some heps haven't treated it. I gather when you say you have all the markers you mean high AMA M2, elevated ALT, AST and Alk Phos (very high)? I was diagnosed in my 40s and even that is tough but with the medication to help slow the progress many are going strong 25 years after and longer without ever needing a transplant. I had severe joint pain as well and stopped working 2 years after diagnosis. There are drugs you can get for the pain. Suggest you see a pain management dr. We're all here for you so ask questions and vent when you need to.

[PBCNewbie32 in reply to OdinsMom]

Thank you so much! I will definitely look into finding a Dr. or trained specialist for this horrible pain and fatigue.

[CathyPBC Administrator]

A Fibroscan measures the stiffness of your liver and can not be used for diagnosis of PBC according to the AASLD Practice Guidelines for PBC. A positive AMA2 blood test along with elevated liver enzymes over time are considered diagnostic for PBC. Biopsies are now done only if there is a question of the correct diagnosis or if there is a concern of Autoimmune Hepatitis (AIH) overlap with PBC. Biopsies are also required to diagnose NAFLD/NASH ("fatty liver disease").

I suggest that you seek a consult with a skilled gastroenterologist who has treated many PBC patients or a hepatologist who has PBC patient experience. Anytime there's a question about correct diagnosis, its important to seek an expert's opinion.

[OdinsMom in reply to CathyPBC]

Biopsies are done on a regular basis by all my heps and they use them routinely to diagnose in addition to AMA M2, LFTs. They use them so routinely that they were considering doing one on my son, who was to be my live donor. It still is the only way to "see" PBC

[CathyPBC Administrator]

Biopsies are no longer considered the standard of care in PBC. However some doctors prefer to see the liver at the microscopic level. Tge only problem with this is that a biopsy is a tiny sampling of the tissue whereas a MR Elastography test looks at liver stiffness throughout the entire liver.

If course if there are any comorbidities such as Autoimmune Hepatitis (AIH) or NAFLD/NASH], a biopsy is required for monitoring.

You mentioned that your son was going to be a living donor but since it was past tense, I assume that didn't happen. Are you still awaiting transplant or have you received the gift of a new liver?