Newly diagnosed PBC-

I was having some stomach issues, itching (which I didn’t know was a liver thing), on and off high alt, ast and ggt, fatigue, hypokalemia and my cholesterol spiked up high after always having low.
The AMA antibodies are specific for PBC but CAN be indicative of other things. The liver biopsy confirms. This is what my dr told me.
Have you seen a gastroenterologist? They may recommend liver biopsy.

I responded to your reply and question but I must have put it in my post under PBC. Now it won’t let me copy it here.

I’m having a biopsy of the skin where the Livedo reticularis is. That can be a symptom of many autoimmune and vascular diseases and even cancers.

Hello,

I did not have symptoms . 30+ years ago I visited my doctor for a general checkup. I had some lab work done and he noted that the tests showed elevated areas that called for further testing LIKE a biopsy. So the biopsy was done with the result of PBC. I’m fortunate that most of my life PBC was pretty mute. However it’s not so mute today but still tolerable.
Karen

Hi Lady,

The sooner you are prescribed urso and other meds to help with the itching and cholesterol the better for you. I would get a second opinion on the biopsy.

Karen

how are you doing after a year on Ursodiol?
It's been a year for me but recently had the liver enzymes a little bit elevated.. It was normal for about nine months.
Thank you!

I have not officially been dx yet and have appt with Mayo coming up. I am 2 years post hospitalization for loss of use of my legs, have peripheral neuropathy and myopathy, all caused by autoimmune condition. My Rheumatologist sat for 2 years on it and only ordered basic bloodwork. She just ordered liver tests a few months ago and I have PBC (by the numbers anyway) and a very high GGT. The fatigue is killing me but the ascites is worse. I have been complaining about stomach bloating and weight gain for over 6 months. I'm now up about 50 lbs quickly, with a large and hard abdomen. I know what the dx is, but with this much ascites, I am very scared about how far this has gone and what I should expect to hear. I have read ascites does not usually show until later in the disease. Any ideas or thoughts? What you went through at dx?

@sdib Welcome to Mayo Clinic Connect. I’m so glad you found this site. Ans, please, don’t apologize for anything! We all make mistakes on MCC because of all the new words and terms and the alphabet soup we try to learn. Here is a link to another PBC discussion site:
https://connect.mayoclinic.org/discussion/newly-diagnosed-pbc/
There’s a lot to learn, but there are people to help!

Hello @sdib. I'd like to add my welcome to @becsbuddy. You mentioned you meant to post in the PBC discussion, so I moved your comment to the discussion "Newly diagnosed PBC" - https://connect.mayoclinic.org/discussion/newly-diagnosed-pbc/.

Here you will meet @nonak, @irisjolie, @kaydee01 and @lbo615 who have all discussed their journey with SBC, diagnosis and treatment.

Hi! I got my PBC diagnosis in 2008. I’ve been on Urso for years and didn’t have any side effects for years. I have always had occasional itching - usually the backs of my hands and stomach - but that’s the PBC. I’ve found that (for me, I know might not work for everyone) using the Cortizone-10 roll-on calms it down and if it continues I just add more.
Over the past 3-4 years I’ve had gastrointestinal issues, so much so that my Gastroenterologist added Imodium to my official list of prescription meds with all of my docs (gastro, PCP, rheumatologist, hand drs/surgeons, dentist, etc.)
My alkaline phosphatase is in the high 100s and my doc has tried to add other meds but insurance has not approved them.
In 2021 I was also diagnosed with hypermobile type Ehlers Danlos Syndrome(hEDS). This can cause many of the same issues as PBC, so many things are 2x as persistent, including my gastro issues. I’ve had 6 surgeries on my right forearm/wrist (which is fused) and 2 on my left forearm/wrist/thumb, each with multiple procedures (my thumb is fused). Every joint moves a little bit (I like to say I have my own hip-pop), except my feet and ankles which lock up at random times when I’m walking. This + arthritis + PBC + hEDS = I feel all of the side effects (probably) more than most on my body.
My Gastroenterologist said I’m his only patient with PBC and EDS (any variants), so I’m hoping my comment helps though I’m a bit of a mystery overall. I’m sorry for being so long-winded!!