PBC newly diagnosed

[Jane2262]

Hi all

Just been diagnosed with PBC

Can’t sleep as normal

Anyone with sound advice on PBC

Welcome to chat

[JimmyJackson]

What is PBC

[Hidden in reply to JimmyJackson]

Primary Biliary Cholangitis

[GrittyReads]

Hi Jane, the first thing is 'don't worry'.

PBC is much more researched, understood and treated now, compared to in the past. Also there are dedicated PBC support groups in many parts of the world. You don't say where you are, but I'm in the UK, and we have a wonderful group here called 'The PBC Foundation' and they host a website here on 'Health Unlocked' so you can find them easily. The BLT is very good too, but if you also want to talk to others with PBC, you will meet lots of lovely people on the 'PBC Foundation' website. Also, the website is a mine of useful info, all completely up-to-date and wonderfully informed. Also if you join the 'PBC F' (it's free) you get access to even more info, as well as the tri-yearly magazine. The 'PBC F' staff write and produce all their info in consultation with the UK's leading Heptologists and PBC consultants, and several of the UK's leading PBC specialists regularly write for the site and/or magazine.

On the 'Health Unlocked' site of the 'PBC Foundation' you will also meet lots of people with PBC, from those like yourself who have just been diagnosed, as well as others who have had it for decades and are still strong and healthy with full, happy lives. Even though PBC is a very rare condition (only one of the 4 GPs, in my GP practice, has ever had PBC patients) it is not the dread condition that many imagine - although, sadly, a lot of GPs, many GIs and even some Liver specialists are not that up-to-date about it. So it will be good to talk it through both with experts and fellow sufferers.

I would find the 'PBC F' site, on here, and just read around a little. You can easily phone or email the site to talk to their lovely trained advisors, and also post your questions and worries on the general posting site, just like here on the 'BLT' site. It would be good to say a little more about yourself, your symptoms, the tests you have had and so on, as well as all questions and queries. You will be amazed how different we all are.

Above all, don't worry. Stress and worry are the worst things for any autoimmune condition, so one of the best things you can do is have fun, treat yourself, and do lots of things you love. A good healthy diet and some good exercise (that you enjoy!!) will also help, and the PBC F advisors, the site, and the folk on the question site can all help with ideas. So meanwhile, treat yourself, and don't worry.

Take care,

Gritty xx

[Jane2262 in reply to GrittyReads]

Hi gritty

Thanks for the reply

I live in the uk

I only found out Friday I had it

Was totally gobsmacked

I had put all my symptoms down to the menopause

How wrong I was

Still waiting for the medication to be sent to my GP

From my consultant

I have to have a bone density scan and scan of my liver to see what stage I am at

The worst part for me is the fatigue but was told the medication probably wouldn’t help with that😓

I did look at the internet but I totally scared the 💩 out of me so stopped

I have joined the PBC society

Just waiting for the acceptance I suppose it’s because it has been bank holiday

Thank you for your message it has helped me

Jane

X

[sunnysmile in reply to Jane2262]

Hi Jane, I am new to this forum and loving it already. Looks like you will get loads of support here. Know what you mean about the internet - very informative but yet scares the you know what out of you.

Bit of a shock for you especially when you thought the meno. I am passed that now but do put things down to it. But there comes a time when you think, hang on, maybe it is something else.

Think this will be the place for comfort and positivity.

Regards

G.

[GrittyReads in reply to Jane2262]

Hi Jane,

It sounds like all is proceeding well: assessment and diagnosis-wise. The bone scan is good as PBC can reduce the bile that gets into the gut, and this has a knock-on effect that stops Vitamin D from being absorbed, which also messes up calcium and thus bone formation. However, it's not likely to be an issue unless you've had the PBC for a while without it being noted. Once you are on the Urso, any bone issues should even out, although they may give you a vitamin and mineral assessment and some supplements to help things along.

What symptoms were you having, besides fatigue?

Diagnosis is usually based on the presence of:

1) AMA-M2 (= antimitochondrial antibodies [sub-type M2 = codes for PBC]).

2) Abnormal levels of liver functions tests (lfts), that are typical of PBC (usually ALP, GGT, and maybe ALT and/or AST).

If one of these are missing, but symptoms of PBC are present, then they may do a liver biopsy. If you have 1) and 2) then that is enough for a diagnosis, so then they may do a general ultrasound scan, to show the general health of the liver, and can pick out some scarring. But if they are checking the stage, then it is probably a fibroscan, which seems to be done more often these days. So it's all good, it sounds like everything is being covered.

One thing worth mentioning - and you might want to ask others on the 'PBC F' site about this - is that some people find that some types of the Urso tablets don't always agree with them. I don't know a huge amount about this, but I know that some forms of Urso seem to work better for some people - and others for others! Often I think it's the 'fillers' that different pharmaceutical companies put in the tablets. Hopefully you will be fine, but you can change if a type doesn't suit you.

I think that's all for now, but let us know - on here, or over on the PBC F site - how things go. And above all, remember: don't worry, treat yourself, spoil yourself, and have fun.

Take care,

Gritty xx

[Jane2262 in reply to GrittyReads]

I have

1 +2

Got a bone scan 19th June

Started taking vitamin d +calcium

Fatigue

Itching

Aching joints

Xx

[sunnysmile in reply to GrittyReads]

Hi there, hope no one minds me chipping in. I don't have this but do have Liver disease hence me joining this forum today. I just wanted to say what a brilliant post you have written. That is what forums are about - giving hope and strength which is exactly what you have done.

All the very best to you.

G.

[GrittyReads in reply to sunnysmile]

Thanks G, it's lovely to get +ve feedback!

I was messed about when I was first tested for PBC, but I learned a huge amount during my journey, and I also had great help from the 'PBC F'. So, I like to post and help others who are worried. I also got to see one of the best PBC consultants, and learned a huge amount from him, so also like to share.

[NB … I was told I had PBC, when I didn't. I still don't have it, but I do have high AMA-M2, although - as yet - PBC has not developed. I have to have regular blood tests, and occasional scans, and it may still develop. This happens, some people just have AMAs, and nothing else. One of the scary things is that people are still being wrongly diagnosed as having PBC, when they don't, which means they can be given Urso when their liver doesn't need it. I was messed about a lot, for several years, and it was only when I was able to see one of the leading PBC specialists that my diagnosis was changed = stopped me worrying, plus insurance (eg travel) becomes easier.]

Do checkout the 'PBC foundation' site, just for general live stuff.

Take care and 'thanks' again,

Gritty xx

[Huggy7614]

Hi Jane,

I was diagnosed with pbc nearly 2 years ago now. Only symptom I had was fatigue, and just put that down to working hard!!!

Certainly in the former stages of it, I was symptom free, and struggled to realise I may have something wrong with me!! However, I have received amazing care and attention from my local hosp, especially as its developed!!

As stated before, enjoy life. I remember reading when I was first diagnosed that people tend to die WITH pbc not FROM it!! Always have that in your mind. Your diet is important, and what a weird ‘diet’ it is too!!

Do not bother with many sites on the internet, if you do, please have in the back of your mind that you need a balanced opinion. The English sites seem way better. I tend to put ‘nhs’ in the search field if I’m googling something.

Stay on here and ask questions. This is a great site, with so many people of various degrees of experience.

Most importantly, don’t fret it, learn about it and enjoy life.

Andy.

[Jane2262 in reply to Huggy7614]

Thanks again

It’s reassuring that someone else has it too that I can talk to

What’s the diet!!

As I hav

[Jane2262 in reply to Huggy7614]

I will keep in touch on here

Fatigue is awful

My joint ache all the time

Itching isn’t that bad yet

But my consultant says I am “lucky”

Does that mean it will get worse over time

!!!

But I have a fantastic husband who helps me a lot

Obviously it’s very new to me

And I am wanting answers that probably can’t be answered like

“why me”

I just hope the medication has some effect

I won’t let it control my life

But won’t be silly about it either

Looks like my partying days are coming to an end

May have to hang up my high heeled dancing 💃🏻 shoes 👠

Xx

[Huggy7614 in reply to Jane2262]

Now just you listen to me young lady, don’t you dare hang up your dancing shoes!! 😝😝

To combat fatigue eat biscuits, or cookies!! Not sure if they help but they taste great!!!

Sorry I haven’t replied yet, am busy at work at the mo. But promise to later. Xx

[Jane2262 in reply to Huggy7614]

Young at heart 💔

Thanks

You make me smile

X

[Jane2262]

Thanks again

It’s reassuring that someone else has it too that I can talk to

What’s the diet!!

As I haven’t been for my medication yet it hasn’t been mentioned

Any advice is greatly appreciated

I intend to keep enjoying my life as much as I can

Maybe a little slower

🙃

Xx

Jane

[Huggy7614]

Hi Jane,

Right, as promised, a little info from my perspective. I must emphasise that the following is only what I've been told to do for my circumstances - so when your consultant (when you get one!!) says 'What complete moron told you to do that' then remember, my name is Dave, not Andy!! I do not profess to know lots of science behind PBC but I do get the gist of it!!

Little and often.....I went to see a dietician recently, who re-iterated what my consultant said, eat little, and often. Have a snack as close to bed time as you can, because you will wake up hungry.

Carbohydrates are good things. Obviously balance them with other stuff. First thing I was told when I was diagnosed was to eat biscuits if I felt tired. Yoghurts etc are good to eat, as well as heap big quantities of cereal. 3-4 slices of toast of an evening, or a handful of digestive biscuits. Basically, all that really nice stuff we have been told to eat in moderation all our lives, well, just eat it, and once you've finished, eat some more!!

The tiredness is a killer.....don't fight it, just slow down for an hour or so and get your second wind. Like you, I don't really have the itching, and never have - other than one patch on my leg!

Its a funny old disease - 95% of the time I feel totally fine, and then every now and then I have a really crap day where I just feel bleugh!! I just take myself off to bed and hide there away from everyone. Once it passes I can come back down and join the human race.

I am on Urso, with no apparent side effects - although I am also not fully responsive to it - in other words it don't work on me!! There is a new drug out which is mega expensive, and my consultant was trying to get me that - but there were all sorts of issues regarding who has authority to prescribe it. Just when that got sorted, I developed ascites and oedema. It also caused fluid to go up to the lungs, which is a real pain in the butt!! Fear not, you're way off that stage yet!! Hopefully you never will be.

I know how scary it all is at the beginning. I remember standing in the shower one time, thinking of my kids, and would I be around to see them get married and the like, and even had a cry to myself, but that was a good long time ago now, and as I said before, people often die with PBC not because of it!

Do not let it rule your life. There are times when it will seem to take over, and sometimes that just has to be, but there are many times when you can almost forget you have it. You will and MUST live a normal life. Go on, go get those dancing shoes and give them a good clean!!

Do feel free to message me if you'd like to know more - again, from my perspective.

You are still young (Says he who is one year younger!!), so go do all you want to. Hey, I'm knocking on the door of needing a referral to Birmingham for transplant soon - and I still feel totally fine, and do all my normal things!!

Andy

[Hidden in reply to Huggy7614]

Hy!may i ask for how many years do you hace the disease?

[Huggy7614 in reply to Hidden]

Hi, at the time of writing that, I had it for about 2 years. Since then I have had a transplant, just over a year ago and all is good.

My whole journey with pbc did develop very quickly. I was diagnosed in sept 2016 and now 4 years later I’m 1 yr post tp!!

Andy.

[Hayls48]

I had pbc diagnosed in my early 40’s. I’d lived with it for some time unbeknown to me. The tiredness was awful but like others put it down to doing to much and a hectic work/life. The itching however was driving me frantic and following a referral to a dermatologist and a simple blood test revealed my very elevated lft results. More detailed blood tests followed which didn’t categorically determine pbc, neither did an ultrasound scan. So liver biopsy was the next step which did show pbc.

I had several moments of why me and what if/next. Which is perfectly normal, I then resolved to get on with life take the urso and hope to god things would settle. As said above people rarely die of pbc, but the symptoms aren’t pleasant at all, however take the nap, itch like you have fleas (I did lol) and embrace everyday there’s always someone worse off than you was my motto.

I was referred to QE Birmingham for treatment from the heptology team there 6 months following diagnosis. They were/are amazing. In my case my disease did not respond to urso and was quite aggressive and progressed faster than i’d ever imagined it would.

That said 3 years after diagnosis I was listed for transplant. My transplant was a success and I’m now 3 years post transplant for pbc, and living a full and normal life. No sign of pbc and long may it continue, although I’m not naive and have been informed it might come back. Everything crossed that it doesn’t but I’ll have to cross that bridge if it does.

If you have any questions regarding pbc the pbc foundation are amazing and this group are also.

All the very best to you, hope you get answers to your questions and the treatment plan works.

Kind regards

H x

[Dibby1971]

Hello Jane. It seems I’m the same as you.Iv just been told I have PBC and soo many questions. Had scan today so will see what results are.How are you doing? Fatigue aching joints which Iv had months. I had a 5 week ear infection and loads of different anti biotics just didn’t clear up this is why bloods were done. How are you doing? X