Pbc and complications

[Ellean]

Has anyone had Cholangitis (or similar) with from pbc?

[Hidden]

Hi. It is much more common with psc. My brother has both. Are you seeing a specialist to discuss. Hope you keep well.

[Ellean]

Hi. The doctors have only just started to ... diagnose my condition ...

My chest and stomach appears to very much suggest gall stone problems ... but my pains are constant whereas with gall stones it goes off. Which I wish was the case for me.

I've got a new doctor and consultant now. (the last declared me " perfectly health"). On moving GP dragged me in because last put me on Tramidol and then announced "I think you've got PBC" (Having got Mottled palms.. I tend to agree). Anyway still don't know why I've got all this pain, purely will power getting me from day to day.

You will have to excuse me I'm not used to communicating on these types of forms ... texting must easier .. Thank you for replying .. everyone ..

[marrion]

I'd just like to add I had gallstones and the pain was constant day to day pain with a "gall stone attack" becoming so bad that it floors you and all you can do is roll around the floor with a stomach like a sumo wrestler wishing you could be knocked out to release you from the immense pain. I had to have weeks absent from work because of the constant bad pain and on the days i managed to return to work I was still experiencing daily pain which was managed with pain relief medication..

I did have a real bad case of gallstones which is why i was in pain everyday as my gallbladder was stuck to my bowel and i had gallstones stuck in the bile duct which occurred twice.

[GrittyReads]

Sorry, can't offer much help about the cholangitis. However, I just wanted to check ... I assume your diagnosis of PBC is based on more than just mottled palms?? Presumably, the GP has tested you for AMAs, and has done your liver function tests, and that you've seen by an appropriate consultant?

Hope you get it all sorted.

[Julez1961]

Hi Ellean,

I have to agree with GrittyReads that a diagnosis of PBC must be based on more than motley palms otherwise I would not be diagnosed as I've never had that. And I am on the list for a liver transplant. They should do a biopsy to verify and tell you what stage you are.

As marrion said gall stones are very painful and had me writhing around on the floor in agony. An ultrasound of your gall bladder should confirm if it's gall stones or not. Ask lots of questions and make sure they are proactively trying to get this sorted. Good luck

[Ellean]

Hi all. Yes they have done blood test and the finding suggested pbc Consultant put me on urso before verifying as "it was better to start right away" in prevention to pbc .. and a month or so on if it wasn't wouldn't probably do major harm. I agreed as I had motley palms ... could not see my palms relating to anything else.

Have had ultra sound having gastroscopy 3rd then back to consultant 25th.

I have got gall stones but the previous consultant said its not gall stone problem. I do question this but hey just see what new consultant comes up with. I think the "Good Luck" seems to fit judging from my last 2 years.

[GrittyReads]

I think it's important for you to know exactly what blood tests they did, and what the results were. Start asking for printouts of your blood test results, and keep a check yourself on how they change. To be officially diagnosed with PBC you need to have two out of the three criteria. That is: you need to test +ve for AMAs, and/or; your liver functions tests are abnormal; and/or, you have a biopsy that shows the damage to the bile ducts in the liver. If you are in the UK I suggest you join the PBC Foundation, and read their file, especially on the blood tests and what is considered abnormal.

Sorry to be picky, but it's a condition that often is not well understood by some GPs (and even, on occasion, consultants). So, although you will get help and support on here, it's good to know the ins and outs of the condition, and exactly where you are with it - especially as it affects us all so differently.

Strictly, I don't have PBC, as I just test +ve for AMAs, but I have had no symptoms and perfect liver functions tests for over 22 years. However, 6 years a go a consultant labelled me as 'Pre-symptomatic for PBC' and that diagnosis has really messed up my life since then (mainly travelling, as insurance can be difficult), so I tend to be wary of consultants with snappy diagnoses.