My mother died within 5 weeks of being diagnosed with PBC. I was tested at that time which was clear (1994). Should I get tested again?

I have itching and blotches on my hands and arms but I also suffer from psoriasis

[Axl888]

I am sorry to hear about your mother. Did she die from PBC or something else? Itching is definitely a sign of something amiss with the liver. I have red blothes on my palms which is also a sign of liver disease. If you have PBC you will be offered urso which can help to slow down the progression of the condition. Its probably a personal decision to make ... up to you. Knowing, means it is then on your medical records and can be detrimental to getting a mortgage, life insurance, travel insurance etc. This could be a problem if you are younger and need to think about such issues. If you are older and don't need to worry about mortgages etc, having the information on your record isn't going to affect your lifestyle decisions too much.

[JennerLayne in reply to Axl888]

Axl - I have a question about the redness on the palms. Are your palms also dry and tight, or are they just red? My hands started changing last summer and became bright red, yet the skin tightened especially in the thumb area, and is quite dry, no matter how much lotion I apply. (It almost feels like a dry canvas cloth has been inserted into the tissues of my hand.) My dermatologist said it is hand dermatitis and gave me a steroid cream, yet it doesn't seem to work. My gastroenterologist believes the redness is relative to my liver.

[Axl888 in reply to JennerLayne]

I have dry skin all over - not sure if it is related or not. I have it more in winter than summer though.

[Wendom]

Hi I would ask for the test if its positive i would start the treatment straight away to try to slow it down especially as there's a family history my sister has psoriasis and its very itchy with that so maybe it's that that's causing it I have pbc but my mum and sister don't so maybe you'll be lucky but I wouldn't wait or worry about insurance I didn't my health is way more important than any off that stuff take care x

[nannan]

Psoriasis is of course another auto immune disease I have it along side Type 1 Diabetes and PBC.

[zipitydoo]

I think I would if I was you.

Not sure if a positive AMA is something you are born with or something that can be triggered off by something. When I was found to be positive I had all my 3 teenage children tested and thankfully they were all negative, but if they showed any symptoms I would have them retested.

[Hidden]

Wouldn't it be more sensible to ask your GP about having your bloods (LFTs) done at intervals? That way anything untoward that shows up can be dealt with at the time.

If you were to have the AMA blood test there is no guarantee apparently and you may have a negative result. Some patients with PBC can test negative for AMAs and that is why the liver biopsy is normally suggested if there is doubt to confirm PBC. I tested with a positive 'titre of AMAs' to diagnose PBC but back in 2010 I had visited the GP with itching and at the time had no prior knowledge or even knew anything about PBC.

I know I have a grown-up daughter but I'd not go as far as even suggested so go to a doctor to ask if she can undertake the AMA test. I say this because some things never happen and in this case why instill something within one?

[littlemo]

If the treatment you normally use for your psoriasis is not working If I were you would go to GP and maybe have some routine bloods done which usually include LFT (liver function test) and if this is abnormal then your Gp will keep you right on what to do next. You do not automaticlly get PBC if a parent had it.

[skippydownunder]

My mum died within 5 weeks of being diagnosed with what was diagnosed as secondary liver cancer (no primary found) in 1999. I have recently been diagnosed with PBC late stage 2 early stage 3 (29/4/13) and am on Ursofalk. Even though the gastro I am now seeing (he treated my mum for the cancer 14 years ago) says there is no link as she was not diagnosed with PBC I can't stop thinking that she had it because she was not checked for AMA. She always had indigestion problems and pain in the right hand side. My mum was the worst person on the planet for seeing the doctor though and she paid for it in the end.

What I am trying to say is just get checked again. It won't hurt and it is better to know so you can get on top of this ASAP. My first sign was itching, especially the soles of my feet at night, and my eyes indicated jaundice. There was a slight elevation in ALP liver test in 2007 (153) and GGT (142) which I should have followed up because by the time I finally did anotherrblood test (2013)my billirubin was 45 and ALP (948) GGT (804) AST (337) and ALT (654).

I believe their is a genetic link and I am going to test my son - he is12 - and tell my sister so she can test herself and daughter, as well as be alert to any symptoms.