Pbc: I am waiting for a biopsy for suspected... - PBC Foundation

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Pbc

Bellalou10 profile image
Bellalou10
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I am waiting for a biopsy for suspected Pbc, I am very scared about my future as I am 42 with a husband and two children. My liver results came back yesterday and my alt was 421😳 I have no symptoms yet and feel perfectly well apart from the stress and anxiety. If anyone can give me any advice I'd be grateful. Thankyou

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Bellalou10
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Hello Bellalou10.

I was 45 back in early 2010 when I started itching. I took myself off to the GP 2 weeks later as the itching was 24/7. I was working long hours and didn't think anything of fatigue I had at the time. I was found to have abnormal or elevated LFTs (liver function test). I had other blood checks to rule out other things and it was then deduced that I had a liver problem as opposed to a bone problem that you can have abnormal LFTs with.

Tests kept showing up negative for various problems but the LFTs were slowly rising each check. Later 2010 when I was 46 by that time I saw a hospital consultant who took a blood test that day for antibodies, one was for ANAs (anti-nuclear antibodies) and the other AMAs (anti-mitochondria antibodies). Before the end of 2010 I was found to have a high positive for AMAs and along with the symptons at the time and LFTs plus another blood check the GGT that is connected to the liver which was also elevated, I was diagnosed with PBC.

I started taking the one medication (I call it a supplement as it is a component of bile) for PBC, ursodeoxycholic acid and then had blood checks at intervals. It is almost 5yrs now since I was diagnosed with PBC and I think fair to say that although I still itch it is mainly just in the night these days and though causes broken sleep, fatigue vanished at some point even though I still have abnormal LFTs they are said to be OK for one with PBC.

Being informed you have PBC if it is the case for you it can be daunting in the early days. I had an idea I was going to be told I had PBC back in 2010. I had stumbled across the condition from library books and then online as test after test kept coming back negative. (I never had a biopsy, I am in UK and seems to be quite the norm for one with symptons of PBC and abnormalities in bloodwork plus the AMAs to be diagnosed from these as I was.) Yes it came as a shock to me when I was informed as it is something you always have until one day some cure might be found and for a lot of us on here it seems we wonder how we came by it as like myself a lot state they rarely prior to either starting to have symptons. Some are found to have PBC by routine blood work.

I was under the illusion regarding myself that at some point this PBC would go away and I'd be normal again. If I didn't itch I'd not think I had PBC as I look perfectly normal. It is at night I sort of morph when the itch comes my way once again.

I have found it to be a strange thing to have at the best of times but at the same time I have found myself that each year marks another hurdle. I wasn't sure I'd be here 5yrs down the line but it is said to be something that is slow progressive and for me I decided to get on with life, enjoy it and make good memories. I refuse to think about what PBC might become as it might never get like that so to me a waste of thinking and worrying time now.

With not having any symptons if you are said to have PBC then it is a time you can create certain changes and also look after yourself even m ore than you thought you were. Some with PBC never progress beyond the fact they have it and are said to be asymptomatic (without symptons) and some of us who do get symptons it can be possible to not even progress much further.

Bellalou10 profile image
Bellalou10 in reply to

Thanks for your story peridot, it is reassuring to hear some positivity from it all. Back in August my alt was not worryingly high it's only having them repeated yesterday that they are 6 times higher so my consultant wants the biopsy done sooner rather than later so I'm worried the disease has progressed since June. I was told I might need steroids too as well as the other medication to slow it down.

in reply to Bellalou10

Hello Bellalou10.

I too can't understand your mention of perhaps having to have steroids. I think I am right in stating that patients with a condition known as AIH can be given steroids from time to time.

In PBC we just tend to have the urso and given you are currently asymptomatic then I really doubt that you'd be prescribed steroids.

I know steroids are known as an anti-inflammatory and in the earlier days they were normally given to asthmatics when they were bad or arthritics. Medicine certainly moves on and I seem to be informed from other individuals from time to time that they have been given steroids for other health issues.

Rockie profile image
Rockie in reply to

I like the way you deal with PBC. Lovely to have contact with people in the same situation, because it is such a rare condition. People give all sorts of solutions, like use this and that cream for the itch. They do not understand that the itch is from inside, because of the inflammed bile ducts. Do you people also from time to time get pain in your right sides, and after few days it goes away. Have had it for years. I do not go to specialists if it is not really necessary, because I know there is no cure except liver transplant and for me it would not be possible, because of the auto immune and my age.

in reply to Rockie

Hello Rockie.

Yes you are quite right there, others who have never encountered itching such a lot day-in and day-out don't understand that the itch comes from inside.

I have tried various creams often recommended on here but have to say so far nothing really works as we know it's not on the surface.

I get temporary relief following having a bath if I use certain things in it like Epsom Salts or Dead Sea Salts but I think it is more than likely the warm water and a good soak (that's where I can do most of my reading!) open our pores and then release the substance that is all due to the itch.

So far I've not actually had any aches in my side (the right) which could be due to PBC but I think about 6yrs ago now I did a bit of shoulder damage in a manual job. I only tend to feel a bit of an ache that lasts for about a day when I have been lifting anything I have noticed. I did think at diagnosis it was part of PBC but I know it definitely isn't.

Rockie profile image
Rockie in reply to

Thanks for the quick response. Yes Epson Salts or Bicarb of Soda give some relief and to stay busy, like walking. I figured it out for myself that it will help then the blood circulates better. Funny how quicklyI can start itch when I ate something that is forbidden for my body. I get better days and some very bad days, but there are people worse of than me and I am not that young anymore, nearly 75. You must have a good week

cazer profile image
cazer in reply to Rockie

Yes i have side ache which has gradually got worse more frequent over 16 since first very poorly and diagnosis.you say you dont see consults much but does that mean you miss out on possible new meds? Best wishes cazer.

DonnaBoll profile image
DonnaBollAdministrator in reply to Rockie

There is a very real thing - liver pain. Although the liver itself has no nerve endings, the capsule around the liver does. When that gets inflamed, it causes real pain. Often heat can help. It can certainly come and go as you described.

DonnaBoll profile image
DonnaBollAdministrator in reply to

thanks for such a reassuring post to her

butterflyEi profile image
butterflyEi

Hello Bellalou10

I was diagnosed 10 years ago, but believe with hindsight I had this disease longer, I am now 64 and with treatment I seem to be stable.It seems the earlier PBC is caught the better the outcome for most. You say in your reply to Peridot that you may also have steroids. Personally I have not heard of this however medicine is moving on daily. The PBC Foundation is excellent at helping with medical questions and it may help you to contact them directly with anything you are concerned about. Otherwise this is a great forum with knowledgeable contributors. Best wishes and although not easy try not to worry.

teddybear7 profile image
teddybear7

Join the PBC foundation they are great and have lots of answers to your questions. They really helped me put it all in to perspective. X

Vixta75 profile image
Vixta75

Hi

First of all don't panic - I was 39 and I'd just had my second child when I was diagnosed. I have 2 children under 5 and at first I thought I was going to die and everything seemed very doom and gloom. I started urso and my levels returned, I had regular blood tests and I started to feel okay again. I now just take each day as it comes and don't dwell on what has been dealt. Yes there are days I worry about it - but whilst I don't have too many symptoms I want to carry on as normal. I try and think about all the people in the world who are are in a worse place and it makes me grateful for my family.

Live for today not tomorrow.

I wish you all the best of luck and I'm sure you're family will be a huge support.

Bellalou10 profile image
Bellalou10

Thankyou i am trying not to worry I think it's the shock and the Unknown. That's good u r doing ok and getting on with life. Do u have any symptoms?

Vixta75 profile image
Vixta75 in reply to Bellalou10

I'm lucky as everything settled down, I am insanely tired all the time but I like to think that's more from having 2 boys under the age of 5 to cope with rather than PBC....!

I'm sure you'll be okay. x

cazer profile image
cazer

Please dont worry

I was diagnosed with pbc at 36 whilst pregnant with my 4th child.i had terrible fatigue but this was mainly down to the fact the pbc had been knocked on by glandular fever whilst pregnant.my youngest is 16.if you are well.now and they get you on urso which is thoight to slow progression of the disease you could be a very old lady before it gives you any symptoms.my alt was 850 ishback 16 years ago it is down to 320 so dont be too worried.look after yourself enjoy your children and try as best you can to ignore the pbc.its scary i kmow but ive done better than they expected and i already had quite bad symptoms.the only thing i would say is that my 4th pregnancy was just too much for my system although most people dont have 4 children!!but obviously thats a choice you might want to think carefully about.sorry to rabbit on there is no need to be too frightened of a pbc diagnosis.

Bellalou10 profile image
Bellalou10 in reply to cazer

Thankyou so much cazar that is very comforting, it's good to hear other stories x

SimbaTutor profile image
SimbaTutor

Hi, Bellalou10. I was diagnosed a year and a half ago after a biopsy confirmed the PBC following blood work 6 months earlier that identified the anti-mitochondrial antibodies were present. Apparently, the symptoms of PBC and AIH are similar...the AIH responds to steroids according to my doc, so is sometimes prescribed, but the PBC is not helped by the steroids. The urso slows down the progression of the disease. My ALT hit normal range in September along with the alkaline phosphatase level. The diagnosis can be shocking and scary and everyone here felt the same as you when first told of the disease. Hang in there and try to find what works for you. I was helped by a combination of urso, choosing a better diet, and going to natural products so as to reduce the load on the liver for processing all the chemicals. Another major key for me was scheduling regular rest periods during the day. With them, I have been able to keep on working full-time.

Bellalou10 profile image
Bellalou10 in reply to SimbaTutor

Hi I am glad things are working out for you, that is encouraging. Do you have side effects from the urso like hair loss?

SimbaTutor profile image
SimbaTutor in reply to Bellalou10

I am not struggling with hair loss, but I am losing the natural curl in my hair. There is still a little wave (duck flip!) in the back, but the rest of my hair is straight now on the top and sides. My hairdresser told me that the hair that was already grown out was not affected, but that which has been growing since I started the medication is showing the effects. After years of thick, curly hair that was sometimes hard to tame, it seems strange to have it be straight. But the urso to tame the PBC is more important than curly hair!

cazer profile image
cazer in reply to SimbaTutor

Hi my hair has gone the other way ..

From straight to wavy i also loose 50p size patches which then grow back wavy.the loss of hair is allopecia i think but the change in type of hair down to autoimmune conditon of pbc rather than urso.i was already getting change in hair before going on urso so perhaps timing was coincidence.the patches have slowed up only get one occassionally now which is better.also had mine cut a bit shorter so it takes less time for new hair to get to same length as rest.best wishes.ccazer.

susanburgess profile image
susanburgess

Dont worry i have had this for 18 years you are not on your own not every one has the same symptoms.

Rockie profile image
Rockie in reply to susanburgess

I think I have had this PBC for many years, it was only after 2009 when the itch and diarrhoea became to much that I was diagnosed with it and the surgeon who did the liver biopsy said I need to see Super Specialist, and he does'nt know such a person. So one learns to make the best of it

cazer profile image
cazer in reply to Rockie

Think your gp should be able to refer yoi to liver clinic e.g. queen elizabeths in birmingham.i live in somerset and go there for yearly check ups.are you on urso ....if not ask for referal as csn slow progression if disease.

Rockie profile image
Rockie in reply to cazer

I was diagnosed by specialists and am on Ursotan. Lives in Alberton, close to Johannesburg South Africa. Here they are not making a huge thing about PBC. I keep on taking Ursotan and see my Homeopath, she has been very good and does her own research. So I use natural medicine together with Ursotan

DonnaBoll profile image
DonnaBollAdministrator in reply to cazer

thanks for the advice you gave... it can frustrating not to have someone who can care for PBC as it should be.

cazer profile image
cazer

Oh thats good....thought perhaps you were missimg out on important meds.depends here on how far it has progressed as to how much notice they take also how bad symptoms...infortunately ive had pretty severe symp for 16 years ...now end stage with varices.best wishes cazer

DonnaBoll profile image
DonnaBollAdministrator in reply to cazer

I too, reached end stage. It happens slowly for many of us. If I can be of any help please reach out to me.

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