Log in
PBC Foundation
7,499 members6,352 posts

Newly diagnosed

I just got my biopsy results back. Positive for PBC with and overlay of AIH. I am at stage 1 but have had symptoms for years without a diagnoses. I am 49 and dealing with exhaustion , joint pain and horrible itching. Started all the medications on Monday. My stomach isn’t feeling so great. Hopefully it will all settle down.

31 Replies
oldestnewest

Hi,

Welcome to our "club" This is great place for reliable info and peer support.

At least now that you have diagnosis your symptoms "make sense". And good that you are early -stage1. Let the medication do its work and give it some time. Most of us have been through the unsettled stomach thing. Hopefully your body will adjust with the meds.

Great picture by the way!

5 likes
Reply

Thanks for the reply. I am sure taking so many pills can cause upset stomachs.

Reply

Make sure you take urso after a meal.

Take it one day at a time. This is really nerve wrecking when you are newly diagnosed.

Once you digest all the shock & info, you will manage to advocate for yourself. Then it becomes better emotionally.

Anyway, the group here understands what you are going through. Feel free to post & ask questions.

Take Care,

Haley

3 likes
Reply

Thanks for the advice

1 like
Reply

Hello,

I'm so sorry to hear of the diagnosis. We've all been there. It can be so stressful. Just know you've come to the right place. Lots of wonderful advice, support and experience here.

Give yourself time to absorb everything. Educate yourself about the diseases too. Knowledge is power. If you've started URSO, make sure you take it with meals. That can be why the tummy issues. Or it can also be stress as well. Take a deep breath.... we're all here for eachother. It's nice to meet you. "Hugs"

Stella❤

DX 2016 PBC

DX 2017 RA (in remission after 1 yr while on Sulfasalizine)

Non-responder to URSO and recently stopped Ocaliva after 2 months as my Alk-phos was climbing. Still on URSO with labs taken every 3 months. Symptoms are slight fatigue and dry eyes. Mild fibrosis as per MRE last year.

5 likes
Reply

Thanks for the encouragement.

Reply

Welcome.

Hopefully you will have read the stickies here and also joined the PBc Foundation.

We have so much information and support we can provide.

Where in the world are you?

Yours,

Robert.

1 like
Reply

What are the stickies? I am in Denver. You?

2 likes
Reply

Welcome here Sleopold! I don't know what stickies are either, but I do know what the PBC Foundation is. We really need it. It works well for us. It is free to join. Maybe you joined already? Best wishes and please share with us how you get on.

2 likes
Reply

The stickies: good question!!!!

They are articles that are always at the top of the home page, I think. Can someone else help here?

I am based in Edinburgh, Scotland.

The Foundation is Edinburgh based but helps patients in over 75 countries around the world.

7 likes
Reply

Pinned posts

Reply

pbcfoundation.org.uk/upload...

Hi- here's a great document from the Foundation that is a good primer on PBC management etc..

The PBC Foundation sponsors this forum. But they also have a website and you can join the Foundation (it's free) at pbcfoundation.org.uk

I am in the USA but find the Foundation and this site to be great resources. So glad I found it 3 yrs ago when dx'd.

2 likes
Reply

Hi! I think you are pretty lucky to have found it early. I wasn't diagnosed until stage 3. I bet you will get used to your new normal and be just fine. My hepatolagist said I was lucky. Many people have it for decades, don't know they have it, and walk into his office nearly dead! To be honest, I wasn't one to go to the doctor very often. So,I didn't go in for yearly check ups. Who could even guess how long I was sick and had no idea! I am 64 so a lot of the issues I had I thought was age related.

Any way, I am not too far from you. I live in Kiowa. It 's about 50 miles south of Denver. This is the best support group I have found. Everyone here is so helpful.

Pam

3 likes
Reply

Thanks for reaching out. We are pretty close I live in Castle Pines and work in Littleton. When did you get your diagnoses? What are they saying it your treatment? I have been having symptoms for years 8-10 years but no one did any testing.

1 like
Reply

The hepatolagist told me that they are hoping the Urso will stop or slow down the disease. I was diagnosed 2 years ago. Some of my lft's were going off the charts. I had a biopsy. It came back at stage3 and it said I have elements of AIH along with it. I have never been treated dor the AIH. I suspect it is becuaee I seem to be getting better without it. My lft's have have been coming down pretty well. I was really worried about my billirubin because it has always been high but 3 weeks ago it came in at the normal range..... The high end of normal but still normal! My ALP is about 10 points over the norma l. I have to have scans every 6 months or so but they say I am stable. Somedays I feel great and that will go on for a stretch, weeks usually, and then I can have a day or even a couple of weeks of being very tired. Most days are good though. I was very tired at my last labs and it did not really show in my numbers. I bet there are not even 2 of us alike with this illness. As far as prognosis for the future they can't really say. Maybe 10 years from now I will need a transplant but I will be too old. So, I am hoping I can just go along with not too many issues until my 80's 😉..a lot of people get pretty ricketty after 85 or so anyway so, maybe that would be a good time to check out. But gee you are going to get better a lot earlier than me. You can live a mostly normal life. I have seen people dianosed at stage 1 more than 20 years ago and they have not progressed. I think a lot depends on your response to the medication and there are some really encouraging results with studies on new medications if Urso is not working for you. IMO if you usually respond well to medication there is no reason to worry that the conventional treatment will not work for you. Anyway, that's what I was worried about when I was diagnosed.

Hugs,

Pam

5 likes
Reply

Pam what a lovely encouraging story for us all, thank you! Well done to you, and stay well x

3 likes
Reply

Hi and welcome. I was diagnosed 2 months ago. No biopsy . I had high alp/ast/alt, high ama2, high ggt, and high smooth muscle antibodies. Had mri with contrast thankful it showed no disease of liver or bile at this time. No stage given a my doc does not believe in staging. He say maybe have the AIH overlap but not sure. I have been on urso for 3.5 weeks had labs done n thankfully the urso is working already . Ast/alt normal / my alp was 328 now 157. Doc is very pleased with my immediate response and is hopeful next blood draw in 2.5 mths my alp will reach normal limits and ggt will be normal. Take your urso. It did cause n still does cause some constipation n stomach upset but don’t miss a dose. Good luck

3 likes
Reply

Thanks. It is hard to know what is disease related and maybe what is stress. It is good to know that many of us have stomach issues with Urso so hopefully over time my body will adjust

1 like
Reply

Hi there. Just wondering what AIH is. I have elevated AMA’s and consultant doesn’t want to see me until my LFT’s go off! They are ok at moment so not been diagnosed properly. But my GP has said it is most probably PBC.! I get terrible joint pains and tiredness. Always put it down to other things but reading here sounds like PBC alright. Thanks in advance.

Reply

AIH is autoimmune hepatitis.

Reply

Hi Sleopold, welcome! So sorry you’ve been having a difficult time, but as others have said, hopefully you’ll respond to Urso and anti-itch meds and things will improve. Some of us found that starting Urso slowly and building up to full dose over a few weeks is easier on the stomach, so that’s worth a try. Best of luck and all good wishes.

2 likes
Reply

Exhaustion or fatigue is the symptom I had first and affects me the most. Since diagnosis 8 years ago, through direct experience, PBC Foundation website, and friends on this site I have come to understand the fatigue better. My fatigue isn't less, it may be more, but I'm learning to manage it better. Just yesterday I saw the unloaded dishwasher, the pile of dirty dishes, the unmade bed, a pile of laundry and plodded slowly through fixing these things. As I worked, I wondered why I hadn't done it the day before, and the day before that too, to be truthful! Then a bit of new understanding came: it wasn't physical weakness stopped me before, it was cognitive, I didn't know where to start. So I plan to be more methodical. That way it will be easier to know where to begin and what to do next. Living alone lets me be disorganised, but PBC asks me to have a few basic standards and schedules! :-) I had breakfast sitting on a chair at the table today... :-)

I don't know your situation. It must be very tiring to have work away from home, and family responsibilities at home. There is more to organise. But whatever your situation is, I hope there'll be time for you to enjoy some of the problems that PBC throws at us to solve. It does make us stronger. Best wishes!

3 likes
Reply

I am currently not working much in our business. I am blessed to have some flexibility. I make myself take care of the house and cooking laundry because my husband and daughter are covering me at work while I figure it all out.

1 like
Reply

Thanks for your reply - it sounds like you are part of a lovely family that helps each other to get on with life. You've sorted a lot in a short time! I like how you say "while I figure it all out" - that seems to be the ongoing heart of the matter for us all. Please keep us updated with your progress.

1 like
Reply

The insights that you share with us are so thought-provoking, thank you. The cognitive aspect of dealing with physical challenges is key - couldn’t agree more. I struggle with keeping my environment clear because I keep too much stuff (drives my other half crazy!) but I’m trying to get more streamlined, physically and psychologically. The less effort involved in managing daily life the better, so there’s time and energy left for more rewarding things.

2 likes
Reply

You are generous with praise and so kind. Thank you! And "stuff"! Would you, please make a post about this - (so we can all pile on it :-) ?

1 like
Reply

Yeah, you think others get cluttered too, due to fatigue etc? We’ll have to think how to post this and stay on topic, but please have a go yourself! x

Reply

This is a great site. I'm 53 was diagnosed August 2018 and been on Ursodoil 1200mg daily. My worst symptom is the itching with no relief yet tried about everything. My hematologist through University of Michigan is trying to see if I can get a procedure called plasmapheresis that some liver patients try and get about a month of relief from itching 🥴

2 likes
Reply

I have just recently gotten the itching under control with cholestyramine. It has worked great for me I feel human again

2 likes
Reply

I tried cholestyramineI stopped it after a couple of months it didn't give me any relief. II'm glad it's worked for you what a relief you must have this itching is no fun. Thx

Reply

It was one of my worst side effects. No sleep struggling at work or in public. I am truly thankful for some relief. I hope you can find something that works for you.

1 like
Reply

You may also like...