Pbc diagnosis

I am a 73 yr old female just diagnosed with pbc. Would like to meet other with this.

I am a 72 year old female and after 10 years, don’t know if I have PBC or PSC–long story. I am seen by hepatology at Mayo Clinic Jacksonville, FL. PBC has a daily digest by email where patients share. PBCers.org provides good information and you can sign up there for daily emails. They had a recent conference in Las Vegas in which top specialists discussed various aspects of living with PBC and I believe they have a link to the recorded talks. Also there are smaller groups that meet in certain areas. Hope this helps.

Thankyou Carla, this is all confusing as I was told it was psc first. Are you taking ursa?

Carla said:

I am a 72 year old female and after 10 years, don't k now if I have PBC or PSC--long story. I am seen by hepatology at Mayo Clinic Jacksonville, FL. PBC has a daily digest by email where patients share. PBCers.org provides good information and you can sign up there for daily emails. They had a recent conference in Las Vegas in which top specialists discussed various aspects of living with PBC and I believe they have a link to the recorded talks. Also there are smaller groups that meet in certain areas. Hope this helps.

Hi Petunia,

My real name is Carole. I have been taking Urso for 9 years. I had abnormal LFTs specifically alkaline phosphatase but was AMA negative. My liver biopsy was inconclusive for a specific diagnosis other than being called stage 2-3 fibrosis with bridging. Had an immediate and complete response to Urso so my GI gave me the AMA negative PBC diagnosis. Since then the liver slides have been read at 3 major centers with no conclusion. I went to Florida Hospital transplant center and based on a CT scan said it was PBC and I had cirrhosis. For an entirely different medical problem I went to Mayo two years ago and decided to see hepatology there. Had an MRI and MRE (Elastography which measures liver stiffness) MRE said 0 fibrosis, MRI saw changes in bile ducts consistent with PSC. Last MRCP same verdict. So I went from stage 4 PBC to early PSC. Go figure! My GI thinks they are bonkers at Mayo and still insists I have PBC. I am fairly well so rather than go crazy worrying I decided to go about my life until some nasty symptoms arise. I am originally from the Boston area but all this came about after I moved to FL. Glad to share anything that would be helpful. I was an RN but I was not familiar with either disease until…told you it was a long story. Feel free to keep in touch.

Thankyou so much for your reply. I feel the same as you do about the whole thing regarding the medical mish mash and just getting on with your life. I started the Ursa today, so will see how that goes. Suppose I have been fortunate up to now regarding health issues, so this is a huge surprise. All these tests and meds are quite a shocker. Strange that yours started after you moved states! Mine was discovered from having a bleeding ulcer. Will look into your abbreviations as not familiar with them. Pleased that you have kept fairly well since the diagnosis. Did you lose weight? Anyway, so nice to have you to "chat" to. The weather has been quite nice up here in Vt. for mid Oct. so enjoying that while it lasts. Do you visit Boston often? Take care, and hope to hear from you again.

Good morning,

Sorry for abbreviations and medicalese. I’ve had almost 10 years with this and I still don’t know what is going on. But Just ask me if you don’t get my lingo.

I would love to correspond with you directly by email. My name is Carole, email:■■■■■■■■■■■■■■. Makes it easier to hyperlink helpful information.

I come to Boston about every 2 years in the summer for several weeks. Our siblings still live in the area. Kids and grandkids are in the Midwest so we travel there too.

About weight loss. Weight is fairly stable. I am small just under 5 feet and shrinking and over the past 5 years vary about 5 to 8 lbs. Weigh about 113.

Are you AMA positive (anti mitochondrial antibodies)? That suggests strongly the PBC diagnosis. A biopsy may or may not confirm the diagnosis. A biopsy can determine to some extent how much scarring/damage/fibrosis the liver has sustained and give a stage. Other scans may be done if late stage is suspected such as MRI, CAt scan or ultrasound.

I have had Barrets Esophagus (abnormal cells due to severe GERD so I have yearly upper GI surveillance. A few years ago my gastroenterologist saw early varices (enlarged blood vessels in my esophagus and sent me to the FL hospital Transplant Center in Orlando where the hepatologists said based on Ct scan etc. I had Stage 4 PBC.

Mayo sees things differently but I am not going to spend time trying to get another opinion with all that entails. My hepatolgist there puts it this way…a not clearly defined disorder of the bile ducts more consistent with PSC than PBC. I am going there the first of Nov for my 6 month follow. Scheduled for an ultrasound and blood work with possibly a Fibroscan if they have it available.

I am happy to help in any way possible. It’s tough to feel alone with diseases no one has heard of but there is good reliable info out there if you know where to look. The Mayo clinic web site is very good too. Mayoclinic.org. Please feel free to continue to keep in touch.

I have been going thriugh the same things. My biospy is showing psc and i have scarring etc. Not too much symptions but alot of ulcerpain and UC pain. They want to do a ercp but I don't want any more probing and I am scared too. I am alos 71My name is Diane