Very newly diagnosed PBC still undergoing testing

Hello all! I'm a 59 year old female living in the Florida Panhandle

Haven't had any serious issues of note, arthritis and joint replacements aside.

I began with an overall itch in Sept of 2021 and didn't worry too much until about a week later, when I was sleep deprived and torn up from scratching, unable to wear proper daytime clothing and at my wits end. I went to the ER in tears, which amounted to a huge waste of time. My GI doc ordered MRCP and blood work (which showed elevated liver enzymes) and the consensus was gall stones were blocking my bile ducts. I was happy because I knew...just KNEW gallbladder removal was going to provide me relief! So I went through with it.

Except, about 3 weeks later it started again, this time with horribly itchy, watery eyes that I couldn't resist rubbing constantly. So, my NEW GP, the one who took my idea of PBC seriously, ordered a new round of blood tests, (elevated liver enzymes still) and we are waiting on a Sjogren's panel now along with AMA and GGT. Besides that, I have an appt with new GI doc.

I do have a question: does everyone here with a diagnosis have a positive ANA?

Below is what my arms and legs look like from my acrylic nails just digging in to try and scratch that itch

[periwinkle88]

When I was diagnosed my ANA was negative, AMA was positive. Now, 11-12 years later, my ANA is positive. (My AMA hasn't been rechecked lately since I've been diagnosed with PBC...no need to recheck I guess.)

[Lu11]

Hi Motrinmom1 I just read your post and am wondering if you found out whether you have PBC. One thing that came to mind is Lyme disease. Have you been tested? The joint replacement, arthritis, itching can also be Lyme. My daughter has Lyme and she has symptoms like yours. Lyme attacks the joints, causes itching and so many other things. Regular blood tests are not good diagnostic tools. You would need to get the one my daughter got which is expensive but finally provided a diagnosis. If you need more info let me know.

[OdinsMom]

I had a positive ANA and AMA at diagnosis.

[AnchorBar]

I was diagnosed too many years ago to remember ANA/AMA. BUT discuss bezafibrate with your doctor. It’s a cholesterol medication, taken in conjunction with URSO it has been successful in helping with PBC symptoms - most specifically itching. Fun note … itching can also come with menopause. Another consideration, with an apology for reacting to the Motrin in your name, Motrin and other NSAID pain relief can be very hard on your liver.

I know that’s three things not related to your question - I was diagnosed about 25 years ago, I wish someone had told me more at the beginning.

Good luck!

[beas27]

I had a positive AMA and my ANA remains negative. My dr continues to check my AMA every set of blood work. I asked why and she said a lower number indicates being healthier and getting physical exercise.

[Susilles]

Unless something has changed since I was diagnose 29 years ago, the only way to positively know if it’s PBC is through a liver biopsy. I am sorry for your itching. I remember that was the worst thing to deal with. I used to put ice packs all over to numb my skin. I am 67 and had a liver transplant 19 years ago. Good luck to you.

[Sneha_winner]

I have also diagonised ANA week positive and AMA M2 positive with value of 18

[Lorelle09]

ANA 640. AMA M2 110. Not diagnosed but lady liver enzymes raised so will rerun tests in couple weeks to see if they are trending up or down. Then re test again a month after that. Then if all is good back to testing every three months. If it is rising next steps probably ultrasound, mrcp, fibroscan and or biopsy.

[Frostingfun]

I'm in Lynn Haven. I'm about to seek a referral to UAB. We need to chat. Feel free to email me at [e-mail]. I would love to build a care team of patients here so we can support one another, discuss the doctors and how we, as PBC patients can advocate for better care.Wendy