Pbc

[Anne-laure_]

Hi... I keep having very bad itchiness around my ankles and bottom of my feet. I could rip off my skin. My blood pressure is always on the high for last few weeks. 159/110... Moods are so low I keep having rows with everyone.. I just want to be me again,,, this autoimmune disease is so horrible... X

[Goldsworthyhelen]

I don't have high blood pressure but I do have horrible moods and I am bad tempered. I did have severe itchiness but it has settled a little with Urso . I do have tingling and pins and needles and aches in right hand and arm that drives me nuts. We all have different symptoms but lots of us have similar ones. My thyroid is under active and some people also have thus. We would all like to be clear of it so we know how you feel.

[mattiasw in reply to Goldsworthyhelen]

How to you take the URSO? Once a day? If so, my itching more or less starts about 6 hour after my last URSO pill, so I spread the tablets over the day, which helps a lot.

[Goldsworthyhelen in reply to mattiasw]

I was taking 4 tablets spread out at first then meant to take them altogether at night. In a conversation with another PBC sufferer,who is under professer Jones at freeman hospital, she told me I must take them altogether at night.( when I first started them I felt rotten) I am doing that and don't feel as rotten now but do still get itching again at present not horrendous. My tingling and pins and needles aggravating me at present and making me irritable.

[Tigger858 in reply to Goldsworthyhelen]

That's really interesting as I take 6 Urso a day. Used to be spread out

(2, 3x daily) but I would forget so decided to take them all at night and hope for the best. I used to have really bad itching in my ears at night, it would stop me sleeping, still get it but rarely at night. Thank you for the info.

[mattiasw in reply to Goldsworthyhelen]

Interesting, I asked my doctor, and he said it wasn't important at the same time. I got the impression that doctors say that because otherwise people forget taking their meds.

I take 2 URSO before going to bed to make sure itch-free-night.

However, after 18 month of medication with URSO, my ALP is still not "normal". That is why I just started treatment with Bezafibrate. I will ask him next time.

[Anne-laure_]

I have stiffness of the right arm on and off.. Tingly right side of the face.. I'm really fed up. I'm on no treatment yet and been like this for over 2 years! Still waiting on report from my capsule camera I had done in October... Hope you are OK x

[butterflyEi]

Hi Anne Laure

This disease is horrible and I empathize with you. Can you cool your feet in a bowl of cold water. I find central heating irritates my itch. It is not uncommon for me to use ice directly on my skin but under running water. You have to be careful not to give yourself freezer burn.

If you are stressed that could be pushing up your blood pressure and we all know how easy it is to become stressed at this time of year. Perhaps a visit to you doctor might prove helpful.

Are you on and medication for the itch?

best wishes to you, know that you have others who know what you are going through on here.

[Anne-laure_]

No medication or treatment yet... I get so low every time I think I'm getting normal then I hit rock bottom again. I get high blood pressure when I wake up.. Or when I'm resting.. Just takes forever to get it sorted. I have to hav skin biopsy on 15 Jan to c where my lupus is at... I have blister on my ankles which makes me itch x

[Rockie]

Hi Anne-Laure. Sorry to say, but yes this Auto Immune is horrible. I itch all over my body. When I am walking and working in the house, it seems to ease a bit, but the moment I go lie down, all hell breaks loose. Some days are better. My tummy and back are full of scars, they dont heal properly than it is bleeding again from scratching. Thinking or you

[GrittyReads]

Hi Anne-Laure,

What tests have you had done, so far? Do they think you have PBC, or not? I ask because 2 years seems a long time to wait, with no treatment. What have they said so far, and do you know what they are searching for?

In particular, do you test +ve for antimitochondrial antibodies (AMAs), and have your liver function (blood) tests been abnormal? These are the 2 most common diagnostic criteria for PBC, and have ou had a biopsy of your liver, or ultrasound/fibroscan, and other tests?

If you have lost track, all of this should be on test results and letters, that you are entitled to have copies of, from your GP. If you have PBC and yet they are searching to check for other things, I'm surprised you have not been given any treatment, so far.

I would contact the PBC Foundation (link to their site at the top of this page) and talk to their advisors. It would help if you can have your results to hand, and if have a diary of what you've been tested for so far - your consultants and GP should be keeping you in the picture.

I hope you get some answers, soon. Take care.

[Anne-laure_ in reply to GrittyReads]

Hello. Thank you for your reply. Yes I have pbc. But also other underlying causes which I'm waiting for results within next few weeks. Then will start treatment... X

[Anne-laure_ in reply to GrittyReads]

Hi thank you so much for your reply... I have positive Ama antimicondrial.. And other inflammatory markings. I had ultra sound scan who was told my liver didn't show any scars or legion..told to have another scan in 6 months?! I saw dermatologist 2 weeks ago who read my bloods results and said I was positive but when I saw my normal doctor tonight app I don't have pbc but other inflammatory markings have come up.. Lupus! Which lupus can mimic other illnesses?? So to ignore the positive blood tests?? Am I missing the point here?? Confused to the max. I'm ill as a dog! Got yellow off eye colour. Permanent sun tan... Can someone explain please xx

[GrittyReads in reply to Anne-laure_]

Hi Anne-Laure,

I think you need to go back to the GP and insist on some action, as yellow eyes and 'tanned' skin can indicate liver conditions. These symptoms should not be ignored.

As I don't think you mentioned them before, are they new?

I also suggest you contact the advisors at the PBC Foundation (link to their site at the top of this page), and talk to them. It would also help you if you have a read of their information pages, as much of the stuff on the internet on PBC is horribly out-of-date.

You might also want to look at what the 'British Liver Trust' say.

On here, we can only give our opinions, plus whatever information we have learned as a result of our own experiences of PBC and the various tests for it. As this is often so different for all of us, what we say is very personal to us - very specific - and may not fit with your tests, results and symptoms.

We can only give advice and info based on our experience, and one of the problems with PBC - and other liver, and autoimmune conditions - is that they can be very variable.

With regard to the other points you raise:

It might depend what exactly the medics mean by 'positive'.

Do they mean that you are positive for PBC, or just that you test positive for AMAs - anitmitochondril antitbodies?

You need to try and find out exactly what they mean.

AMAs are one of the main diagnostic criteria for indicating that someone has PBC, but strictly - 'formally' - according to UK/US/Eu health diagnostic regulations, AMAs ... on their own ... are not enough for a diagnosis of PBC. It is most usual for PBC to be diagnosed with both AMAs and abnormal liver functions tests (blood tests) which show that some specific liver enzymes are outside their normal range. This is why you need to find out exactly what tests the GPs/ Consultants etc have done, and have not done, and what the results are. Your GP should have all copies of these, and it is your 'right' to have a printout of all results. If you have not got copies, ask at your GP's reception - there may be a small charge, for searching/copying, but mine don't charge if the tests are recent.

If there is any doubt about your results with regard to having PBC, or not , then a biopsy of the liver could be done.

Some people can have PBC and not have AMAs, so if their liver functions tests (lfts) are abnormal, they would probably have a biopsy. However, some people can have AMAs, and not necessarily have PBC. Some people just are 'positive' for the AMAs, however, they would still have regular lft checks - for the rest of their life - in case PBC should develop

[I fit into this category, as I've known I have AMAs for over 23 years, but all my lfts are clear, I don't have any symptoms of PBC or other liver problems, and all other checks are fine, and my health is good. However, my lfts are tested every year, or if I have an odd illness].

Even if your lfts are a little abnormal, they may wait and monitor, as other conditions / liver complaints can affect your lfts. For a diagnosis of PBC, the specific liver enzymes need to be high for over 6 months, but if symptoms - eg itching, fatigue - are strong they might start people on PBC medication straight away.

Although a fibroscan can detect a fatty liver and rule out some problems, and an ultrasound of the liver can detect the overall health of the liver and check for cysts, gallstones etc. I don't think that either are enough to confirm, or rule out PBC completely.

There are also lots of different antibodies, and specific ones indicate certain different conditions. It is quite common for people with PBC to have, or develop, other autoimmune conditions. There are even different 'subtypes' of AMAs which are responsible for other autoimmune conditions.

It may be that the medics are just checking you for all other autoimmunes - my GP tested me for everything: thyroid, lupus, etc. They may be just ruling things out, so try not to worry - it's the worst things for our minds and bodies,.

However, I would have the 'yellowing' checked straight away, and it really would help if you talk to the PBC Foundation people. They are very comforting and knowledgeable - but having your exact results would help then understand where you are right now.

Sorry it's so long, hope this helps.

[Mary48]

In a selfish way I am so glad there is someone else out there with mood problems. Just known now as being difficult to get on with on some days, other times I am "normal". Cannot get counselling in my area as I don't have a "recognised" illness.

So glad this isn't a common ailment or life wouldn't be so interesting.

[dollydaydreams]

I got bad itching as soon as i used to lie down and am now taking cholestyramine, it has calmed the itch down a lot but now i am never off the toilet. I also get bad mood swings and can turn and be downright nasty to those nearest to me at times. all this ontop of pain in joints wears me out.

[Dese]

I'm here laughing to myself I have PBC I read the comments and think I'm not going mad I have all them simptoms too. I love this site it has helped me a lot I only found out about 3 months ago still getting my head round it onwards and upwards for us all. Happy New Year to all of my PBC friends xx