I've been diagnosed with pbc for 10 years and have never had any symptoms relating to this. I have other auto immune problems such as Raynauds, Sjogrens plus continual diarrhea for 5 years. Has anyone else been diagnosed without the itch or fatigue for such a long time? I am wondering if they've got it wrong?
I know I should be grateful!!
Rosie
I was diagnosed 7 years ago by routine Health check. I didn't really have symptoms apart from a little nausea from time to time. I haven't heard anyone say about continuous diarrhea though, have you had this checked out for anything else? Also do you have regular blood tests and ultrasound, if not you should ask why not. Best wishes, hope some of the other PBCers can help more.
I was diagnosed 8 years ago but no symptoms. Slightly itchy before URSO but fine since. PBC found by accident through routine blood tests.
Hi are you on medication I to was diagnosed a few years ago when I went to the doctors about vitiligo under my arm pits no symptoms and blood tests come back normal or within range never taken medication for pbc
I was diagnosed two years ago no symptoms my lfts were high positive ama i attend a hep once a year for a check up
May I ask - have you been on Urso - or just been watched?
I was diagnosed in 2003. Never had a symptom to this day.
Hi Roseter,
If you were absolutely diagnosed with PBC (however long ago) then 2 out of 3 'diagnostic' features should/must have been found. For a 'formal/official' diagnosis of PBC, there always have to be 2 out of 3 diagnostic criteria, present.
These are, usually:
1) the presence of AMA - M2 = antimitochondrial antibodies … and/or:
2) abnormal liver function tests (= blood tests, usually referred to as 'lft's)
[NB These 2 tests are the most common results that lead to diagnosis.
- AMAs on their own are not enough to diagnose PBC, as some people (like me) 'just have' AMAs, and most of us never go on to get PBC. However, if AMAs - on their own - are present, then you have to have liver function tests (lfts) every single year - for the rest of your life (this is what I have to do, even though I will probably never get PBC), just in case you are one of the small percentage that goes on to develop PBC.]
NB: - Abnormal lfts on their own are not enough, as these could be the indicators of other liver conditions, and if your lfts stay abnormal, then you would have to be tested for all other sorts of liver (and other) conditions, until they find an explanation for the abnormal lfts results.
If there are any concerns and doubts about the results of these 2 tests - for example if you have strong symptoms of PBC: serious joint pain, itching, tiredness, pale stools, dark urine, etc. then the 3rd and most conclusive test for PBC should be done:
3) a biopsy of the liver tissue.
Presumably, if you have been diagnosed with PBC, then you have been taking medication (urso) for the last 10 years, and they would be doing routine blood tests every year, just to keep an eye on things. However, if you definitely have PBC, and the Medics/GPs have all always followed the correct procedure, yet you still have no symptoms, then that is wonderful!! You are one of the very lucky ones to have stable and well-controlled PBC. As you probably know from reading the messages on this site, lots of people with PBC have a continual juggling act to control the condition and their symptoms: eg: changing the type and amounts of urso etc that they take, in order to control the varying symptoms and conditions that result.
I hope you are one of the lucky ones to have a PBC that is stable and well-controlled, and I hope it stays like that. However, if you have any more concerns, then do talk to the advisors at the 'PBC Foundation' (they run this PBC site on 'Health Unlocked').
The link to their website is above, on the right, where it says 'Pinned Posts'.
I hope this helps, and that all is well and stays that way,
Best wishes,
Gritty.
Hi Gritty, thanks so much for your reply. I guess I'm one of the lucky ones. I have been on urso for 10 years to keep the liver function lower. I have had a biopsy and regular fibroscans which have shown the liver is damaged and getting worse but I still don't have any symptoms.
Hi Roster. I was diagnosed 2010 due to severe continuous itch and awful fatigue. This is only the 2nd time in all those years that I'm practically itch free for a few short weeks. Keeping my fingers crossed that I'll stay this way for a while. I learnt to pace myself and two hours seems to be the maximum time for me to do anything strenuous, although at the moment, I can't do muchst all, but I'm fairly certain that it's due to a virus not my PBC.
Sorry Roseter. Auto-correct changed your name, and I didn't notice until after I had sent the reply.
Sorry to hear you have it so badly, I feel like a fraud! Xx
Please don't feel a fraud Roseter. I feel I'm lucky that I don't have all the other problems that many PBCers have.
I'm a bit concerned that my pharmacist is now having difficulty getting my Urso. He have me 120 yesterday but owes me another 104 tablets to make up my two month prescription. It's the one medication that helps keep our PBC from progressing, so fingers crossed he can get them from a different supplier.
Stay well xx
I was diagnosed about 9 years ago.. I have no symptoms at all - no itch, no fagitue, no digestive issues- nah da.... however I have regular check ups and my liver is damaged - not sure how much but have an appointment soon so will ask.
I take urso and propranolol although currently I do not have any oesophageal varices but there is something in my stomach.
My bloods are just above normal and stable so I don’t know if I should worry or not....
I just get on living life now just in case.
Good luck to everyone
My blood work is mostly normal and when I see a Dr other than my PCP, GI and hep they look at me in disbelief. I had a liver biopsy in 2013 confirming NASH and PBC... GI Dr never said much other than take URSO the rest of my life, it was at the early stages 0-1 and every 6 months I'll need to get blood work done and either ultrasound or MRI.... I'm pretty sure time between checking anything was more than 6 months but when I got sick 2 years ago, I decided I'd seek a 2nd opinion with a hepatologists at the liver institute. GI Dr said Not to bother the Hep cuz I'm not that bad off. When I told the Hep that he was shocked. Said I have more than one liver issue going on and wanted me to have a elastology and it came back at stage 3 fibrosis. In May he said he believes because of fatty liver disease and Nash, i have advanced to stage 4 cirrhosis and wants another biopsy to get a better idea
Sorry to hear that things are not so good for you now. Hope all goes well x
Thanks
Thank you for all your replies. I think that it seems we are all different and gave different symptoms and levels of Pbc. I think I should be very grateful that I'm ok at the moment.
Hope everyone is ok and good luck and health and happiness xx
I had a lot of diarrhoea after PBC diagnosis and it turned out to be coeliac disease which is another autoimmune condition. Try cutting gluten and see if diarrhoea stops. Best wishes
Thank you for your reply. I have been tested for celiac but nothing found, although I know I'm better without bread for sure!
I was diagnosed 17 years ago. I have no symptoms, take my urso (but not religiously until 2 years ago). I have hypothyroidism and Hashimotos. I was never aware that urso could stop working. I don’t have the itch and i don’t have diarrhea.
Sounds wonderful news!
My consultant thinks i will start symptoms now and need a transplant in less than 10 years!
So I hope I'm as good as you.
Thanks
I also have been diagnosed about ten years ago and have Raynauds, Sjogrens and scleroderma . I have blood test and they say i have scleroderma . I have blood test and a biopsy of liver and that says i have PBC other than that I am rarely bothered by any of it .
Thank you. I am so pleased to hear that although diagnosed we don't have to have bad symptoms. Long may it continue x
I was diagnosed 10 years ago as well. I also have Sjorgen and thankfully I’m also symptom free. My consultant said some people can get to final stages and still be asymptotic. Diane
Take care to not be blind to other symptoms.
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