signs and symptoms of Primary biliary cholangitis please

[Montague54]

Hi everyone, I have pernicious anemia and hashimotos, and I wondering anyone can give an idea of the typical symptoms of PBC.

[AyrshireK]

The British Liver Trust page on PBC has lists of typical symptoms so it might be a help to you. britishlivertrust.org.uk/in...

There are other auto immune related liver illnesses too which can go along with your other pre-existing ones plus it isn't unusually to have crossover where you can have PBC as well as autoimmune hepatitis.There are pages on the BLT site about AIH and PSC as well.

Katie

[Montague54 in reply to AyrshireK]

Thank you katie, I will have a look. I just wanted to hear what peoples experiences where before they got diagnosed. Symptoms and blood results that indicate the possibility of PBC.

[Wass71]

Hi Montague54,

I have PBC I was diagnosed in 2006/7 , aged 35. At that time it took ages to get a diagnosis, as they initially thought the pain, fatigue and hormonal related (pre menstrual) itchy, where related to a common bile duct problem as I'd had gallstones pancreatitis following my first pregnancy. I was also treated for helicobacteria pylori, which is a stomach infection, which can cause similar pains.

My bloods showed high Alkaline Phosphatase and Gamma gt, which my Dr assumed was from alcohol. I gave up all drinking, and my bloods continued to be worse. My GP didn't believe I'd stopped drinking (I don't think he'd heard of PBC, so didn't know to look for it). He organised an ultra sound, this being London, and not noted as urgent the appointment wasn't for 5 months, so my mum paid privately to have me scanned. The uss person said the liver looked OK, but for the symptoms I had it wasn't really the right test, and I should have an MRCP, which is an MRI scan of the Biliary tree. Finally I was referred to a gastro Dr, she tested my antibodies and found Highly positive AMA, this with the raised ALP is highly suggestive of PBC. An MRI showed changes in my liver, along with haemangioma (very common in women due to oestrogen, benign tumour of blood vessels). That was Nov 2006, in Feb 2007 I had a biopsy of the liver which showed bridging fibrosis and confirmed PBC.

Back then I was very lost and the Internet didn't paint a very positive picture. But I found the PBC foundation (which I highly recommend, look at their website). They gave a better outlook.

There was only one medication then, UDCA, which unfortunately I did not respond too. I was a participant in the trial for the newer medicine Oclavia, but unfortunately it was too late for my liver, and my condition deteriorated. I was very lucky to have had a transplant in February this year. Thanks to the wonderful NHS and my donor/family.

Nowdays, this condition when caught and treated rarely gets to the point of needing TP. It is generally a slow progressing illness, but tends to be more aggressive in younger people (35 was considered young to have it then, now I think more people are diagnosed early).

It is said, most people die with PBC than from it.

Sorry that was such a long reply, I hope it hasn't sent you to sleep!! If you're concerned, go to your gp ask for Liver function tests plua GammaGT, which isn't routine. Also ask for an antibody screen. If anything is flagged from that, ask to be referred to a Hepatologist. You are able to request referral out of area to hospitals that have specialist liver units (the excellent BLT site has a list) sorry, unlike clever Katie, I don't know how to include links on my phone, for the relevant pages, but it's easy to navigate.

I hope that helps. If you want to ask anything else please do.

Best wishes, and take care.

Wass x

[Montague54 in reply to Wass71]

Hi Wass71, and everyone else who responded to my question about PBC. I am so humbled and thank yous so much for caring. I've not been great and haven't been on my computer for a few days, so I apologize for not getting back to yous. Wass71, you have been through so much and I am glad things are going better for you now. Thankyou for all the wonderful information about tests and PBC foundation, I will look have a look. I am so grateful x

[Huggy7614]

Hi Montague,

An excellent post by Wass there, mine will be less helpful.

I was diagnosed as a result of a blood test for an insurance medical. Prior to that I had no indication I was unwell. Although I was feeling tired a lot, I put that down to just working hard at work and home.

I did have a patch on my leg that I had been itching for years. Not sure if it was related, but it did stop post transplant.

By the time I was diagnosed I already had full cirrhosis, and my liver was going no where other than the lab bin!!

I was on Urso, and am again now. When I was first on it I was classed as a non responder but then that changed.

Mine is a fairly extreme story, I know that, in general as wass said, most people die with pbc not of it!!

Good luck,

Andy.

[Wass71 in reply to Huggy7614]

Hi So being male you would be an even rarer example. As out of every 10 cases of PBC 9 are women. (for the benefit of Montague, I know you know this).

I'm so glad they did catch it, and you were able to get a TP. I see you are just over a year since TP. Are you keeping well?

Best wishes

XWassX

[Huggy7614 in reply to Wass71]

Hiya Wass,

Yes, I am the one in ten ...in the words of the song!! I keep getting reminded whenever I got a visit from a consultant with a junior in tow!!!

Yes, I’m pretty glad too - apparently I had about a year left in me! But, fighting fit now, and was back to work by Xmas......just in time for lockdown! How did you fair through lockdown, I remember your tp (at least the build up to it) well!

Andy.

[Wass71 in reply to Huggy7614]

Thanks Andy,

It must be odd being such a medical interest. Do you feel like a curio or medical exhibit when all those juniors are around. Do you have other auto immune illnesses? Or any family with PBC?

I have the images of my explanated liver, one of the consultants said to me, "my goodness, we got that just in time, I don't even know how you were walking around with that liver". So I can empathise with you on the just in time. But unlike you I had been unwell for ages before, the last 18-24 months were a struggle, but not as awful as some poor people.

I'm OK now. It's been pretty tough, I had quite a few problems early after TP, (pneumonia, pleurisy, pleural effusion, collapsed lung, wound infection required drains, 3 re admissions to hospital. I think that took its toll mentally. A lot of guilt around not honouring my donor by getting on with life. I suppose lock down didn't help with that. Then a few silly things like pulling a stomach muscle when stretching whilst doing some decorating (I was supposed to be doing the easy work - but the previous week I'd fallen and twisted my ankle, so rather than go on tiptoes I stretched!!). That put me back in bed, I've had UTI s twice, 3 lots of thrush (sorry tmi) due to antibiotics!!

All of that moaning aside, I'm so grateful to be alive and well, with my family. We are lucky, so I don't have any complaints.

Im glad you're doing well. Are you back at work since shielding stopped. My husband went back this week (his work were amazing, he was furloughed because of me??!), so what with the time off he had for my TP, saved holiday, compassionate leave, then lock down, he's had 6 months off. I've had him and my 2 boys (17 and so to be 20) at home, running around after me, tending my every need. I'm truly spoilt, and I'm so grateful!!

Take care. X

[Montague54 in reply to Wass71]

Also meant to say I am female and have had a surgical menopause 12 years ago, after which I became ill. x

[Ellewoods1 in reply to Wass71]

Missed you and glad to hear from you, Wass. Hope you are doing great!

[Wass71 in reply to Ellewoods1]

Thank you Ellewoods,

If you're interested I've put an update above to huggy. No need to repeat it.

Hope you are well.

Take care x x

[Ellewoods1 in reply to Wass71]

You have had a rough time. I’m glad things are going much better now and pray they continue to do so!