Struggling to function

[Box11]

Hi Everyone

This is my first post even though I’ve been a member for more than 4 years since I’d been diagnosed with PBC. I’m now 46 years old, since the age of 37 with abnormalities in my liver from someone who barely ever would drink alcohol it took a number of years from a serious bout of pneumonia that they finally run further tests to confirm I had PBC. I think early on I tried to live in a bit of a bubble and try not to acknowledge I have it. I suppose you look ok on the outside with this illness but sadly you feel you are crumpling away on the inside. I’m a very private person so when friends or family ask me how I’m feeling I try to pretend I’m feeling good. But I’m not good I’m angry to why it’s me who’s got this. Obviously I’ve been on Urso but sadly I’m a non responder. When I do have bad days I like to read everyone else’s comments to know I’m not the only one struggling out there dealing with this awful illness. To be honest I’m struggling More than ever lately and can’t cope anymore with the dreaded itch. It’s starting to ruin my daily life. I’ve fallen off the list with my Hepatologist because I’m a non responder & my anxiety got worse to the point I found going out anywhere by myself hard. So I just stopped showing up for my appointments. I feel very depressed with it all and not responding to Urso I can’t see what else they can do for me. Nothing is giving me any rest bite from the itch. The lack of sleep is now impacting my daily life. I Struggle to function to the point I feel working is also something I really need to give up because I’m barely functioning from the lack of sleep. Luckily I work for myself at home but still have scheduled dates to complete the work by, after having a bad nights sleep these work dates just add more pressure and stress when I feel so poorly the next day. I’m just up all night and exhausted all day due to the 24/7 itching and by 10pm it’s even more intense through the night. I end up with red pin dots all over me and bruises. When I was firstly diagnosed I’d had been given the medication for the itch but this made it worse, But lately since December 2018 the itch has started to get worse and worse. My GP said there’s very little that can be done to help PBC itch. I just wish they’d give me sleeping tablets to knock me out so I don’t have to deal with the itch all night. I Just need to reach out for any advice on what can I do to control the itch any advice will be gratefully received. Hopefully I can go back to my GP and ask for something else. I wouldn’t allow my dog to suffer with this itching, it’s the worst thing ever I have to deal with. I feel my GP just doesn’t seem to get how I’m feeling. It’s driving me crazy to the point I feel like I’m going insane 😖😞😫

[Hidden]

Box11 - I am so very sorry to read how distressed you are, and how long you have struggled on your own. You have been reading the posts so you must have seen many times people reccommend a phone-call or message to PBC Foundation. You clearly need someone to speak for you on this, and no one is better do so than Robert or Collette. Please, phone them in the morning, and know that you are not alone. Don't put it off.

[Hidden]

Hi

I'm sorry you are not feeling well at the moment. My Dr gave me fexofenadine 180 mg and it does take the edge off the itching and I agree , make that phone call in the morning please. Please take care of yourself Lynne

[butterflyEi]

Hi, I agree with the others that a telephone call to the PBC Foundation may be a good idea and will certainly help set you on the right road, it is sometimes very difficult for us to help ourselves when we have reached a low point.

I was without specialist cover for about 5 years until the itch went mad and I had to go through the process of GP tinkering with anti histamines first before in desperation paying privately to see a specialist. Fortunately as I do not have medical insurance he prescribed colestyramine to start me off and then arranged to see me in his clinic. I disagree with your doctor that there is nothing much they can do for the itch as there is rifampicin, sertraline, naltrexone, colestyramine and medication in the fibrates group which can only be prescribed by a specialist for use in PBC. For myself I take, colestyramine, rifampicin and sertraline at various times of the day and can now live my life with just a little itch which I can cope with. When the sertraline was added (an anti depressant) I found my mood lifted and I have definitely found an improvement in my overall well being.

I see you are in the UK, there are now other treatments becoming available other than URSO, some specialists are using (I think this is right) bezafibrate with some success and obetacholic acid (Ocaliva) can be prescribed but only by a specialist.

Whilst you are waiting for GP or specialist appointments you could try an over the counter anti histamine called Cetirizine, I had this to start and took two tablets twice a day, sometimes Benadryl is also recommended but you might like to ask your pharmacy for a drowsy anti histamine which may help your sleep (a bit).

The itch disturbs our sleep and without sleep it is always so much more difficult to cope with daily life. Please do not be disheartened there is help out there it is just finding the doctors to help you. I believe The Freeman Hospital in Newcastle and Kings Hospital in London are two specialist centres, if you live near enough to either please ask your GP for a referral.

I am in the south and have a lovely young specialist at Portsmouth and I believe Southampton has a good liver unit. Perhaps the Foundation can advise you of specialists in your area.

Temporary relief can sometimes be found by icing certain areas, being careful of course not to give yourself a freezer burn, I stand outside with an ice block and let it melt in my hand whilst I rub up and down my arms which is my worst place. The face is not so easy to calm but I use a cold flannel on that.

I do most sincerely hope that you find some help, it is out there. Please come back and let us know how you get on.

best wishes

[PolAT123 in reply to butterflyEi]

Hi

I noticed you appear to live in the same area as me

I live in Portsmouth

I was diagnosed with PBC earlier this year

Haven’t met anyone who has the same diagnosis as me

Do you suffer from fatigue ?

That appears to be my problem .

Sometimes I think that I’m just becoming really lazy though when I haven’t got the energy to do things and am using the PBC as an excuse as I know it’s a symptom

[butterflyEi in reply to PolAT123]

Hi PolAT123

I was diagnosed in 2006 when the liver clinic was at St. Mary's. I now attend QA and consider myself fortunate to be under the care of Dr. Aspinall. The fatigue comes and goes with me nowadays, it has been replaced by the itch for which I am medicated but it still causes me trouble every now and then.

Please do not think you are lazy, fatigue is a real thing and we need to learn to pace ourselves. The PBC Foundation suggests a little exercise to generate more energy and apparently laughing is also an exercise which I try to partake in as often as possible, not always easy with all the news these days. If you look back at BLOGs by Collette on the PBC Foundation website you will find this has been a real problem for her. There are a couple of good articles about fatigue to be found in back copies of the Bear Facts magazine which you may find interesting. I am sorry I cannot remember which issues.

You may also find this leaflet interesting to have a look at, link follows:

livernorth.org.uk/pdfs/AR%2...

best wishes

[Purdy2017 in reply to PolAT123]

Hi it's nice to hear from someone local I live in chichester I was under dr aspin at qa then moved to chichester under st Richard's hospital due to see a doctor Moran after 2 years from diagnose only meet dr aspin once but seemed pleasant

[Hidden]

Hi box, I was diagnosed young 36...like you.. Its c... p isn't it...

Don't suffer on your own... Go back to your gp and get rereferred back to hepatologist... There are some new drugs out there...

You need help... Yes the itch is incurable but if it gets that bad they do take this into account whilst assessing for transplant...

I'm not saying that you need a transplant but you need to be seen to get help...

Please reach out to the medical professionals see if you can get some help.

I'm now 56 and had a transplant 2 years ago... Its not been completely plan sailing but I was exactly like you unable to sleep due to the itch, and insomnia, sleeping all day... And in a bad way...

My blood tests worsening and then developing encephalopathy... I was put on the list...

I wish you all the best .. Do go and get help.. There are new things out there.

Very best wishes cazer. X

[SandraS]

Hi, totally agree with everyone else, don't suffer on alone make that call. I am 47 an itcher and a non responder to urso, my consultant was reluctant to prescribe ocaliva due to my itching. I also have AIH which caused a set back as if took a year go get that under control. But i was finally started on bezafibrate in June and so far showing signs of improvement. I take colestyramine for the itch which does help.

Hope you get help soon

[positivethoughts03 in reply to SandraS]

Hi Sandra5

I too have PBC and AIH (overlap syndrome). Recently diagnosed at age 52 and responding "nicely" to URSO, Imuran and prednisone. So far so good...thank goodness!

I am located in the US - in Massachusetts and wondered if anyone knows how I could find local people to me for support. I'm feeling good and positive but it sure would be nice to find someone local who has the same overlap syndrome diagnosis as me. Walking around with this disease can make me feel bit lonely at times. I am 2 years divorced as well so I don't have a nice caring man in my life for support. Hopefully having this disease won't scare off any potential future men...lol.

Any advice is greatly appreciated xo

[Hidden]

P. S I am under consults at Queen Elizabeth hospital Birmingham... Excellent x

[GrittyReads]

Hi,

I don't have PBC (yet) just test +ve for AMAs.

However, I just wanted to post to you and say 'You are not alone.' and to second all the posts - above - about talking to the wonderful people at the 'PBC Foundation' !

See links, above right, alongside the notes from Robert of 'PBC F'.

Your GPs are being rather ignorant/ unhelpful, and there is far, far more that can be done. Also a lot of it has already been detailed here, above, by the wonderful 'PBC-ers' who have already replied.

NB It might be worth reposting, and saying roughly where you live, as then maybe more people on here may give advice on their nearest and best PBC specialist.

I was semi-misdiagnosed as having PBC by my local Specialist (who was really just a general liver person, and not that familiar with PBC) - just because of the +ve AMAs.

[NB: PBC is - despite all of us, on here - relatively rare. As a result, many GPs have never come across it … at all! There are 4 resident GPs at my local practice, plus 2 or more regular-ish (very good and lovely) cover GPs, yet only one of them has ever become familiar with PBC. ]

I was very lucky, as this website had introduced me to others with 'only AMAs' and emailing them, offline, led to me finding out about the specialist I eventually saw, so as to have my diagnosis changed from PBC to AMAs, only. Even though he was miles from where I live in Devon, my GP was happy to refer me to him - even thought it's a long drive from here to Brum. He was wonderful and my life, my medical Records - and my Travel Insurance - are now all so much happier.

I know my situation is very different from yours, but for a while, I was up against GP (and specialist) innocence and ignorance, so please do contact the PBC Foundation, talk to their experts, and find out about the best specialists nearest to you - or even further afield for the best possible ones - and then go back to your GP and ask for (demand!) a (NHS) referral to the one who seems the best, for you. This is you right. I did it, and so do lots of others who have particularly troublesome aspects to their PBC.

Take care, and do come on here with any further worries or questions, and meanwhile - daft as it may sound - try to relax and have some fun. Stress is the worst thing for all autoimmune conditions, so even though things are so hard at the moment, you are - now - on the right track, so try to spoil yourself. Treat yourself, do things you love, with people you love. Even just dance around the house, or wear you best frock, or binge-watch your favourite TV. Anything! Just try to treat, spoil, care for, and love yourself: you're worth it!!

Gritty xx

[Quirky1 in reply to GrittyReads]

Hi GrittyReads,

Just read your lovely, encouraging post to Box11 and I'm wondering what you mean by AMA's only diagnosis? I was diagnosed with PBC about 9 years ago but have never really understood what in my blood tests made them come to that particular diagnosis? I don't have any symptoms and it was a coincidental finding whilst they were checking my blood for other things. Thanks x

[GrittyReads in reply to Quirky1]

Hi Quirky1,

It's a long story! Back in 1994 (I think?) routine blood tests at my GP led to AMAs being noted. I had more tests and saw a specialist Hepatolagist, who said I didn't have anything to worry about, and my GP explained that AMAs (back then, I didn't have a name for them) could indicate a liver problem, but that all my tests were clear. He added that I would need blood tests every year - for the rest of my life - just to check nothing developed. I had tests for about 10 years, then told to stop, as I'd never get anything.

This coincided with moving to Devon, I didn't think anything more, until after a few years I mentioned AMAs to my GP. She didn't know much about PBC (which had never been mentioned to me) but sent me to a liver specialist. After tests, he said I didn't have anything, but explained PBC, and said I had to go back to blood tests every year. At this, I began looking things up PBC on the internet, and got panicky; then as the specialist had mentioned PBC in my diagnosis, I had to declare it to Travel Insurance, and at that time (12+ years ago) they didn't know much about PBC, and they wouldn't cover me! Then I started a personal campaign to find out more, managed to see the GP in my practice who knew about PBC, was reassured … & found the 'PBC Foundation'. Collette, who started the PBC F - because there was no support when she was diagnosed with PBC, put my mind at rest, and the PBC F were a huge support. Finally I saw a senior PBC specialist who changed my diagnosis to just 'AMAs' - and he thinks I'll never get PBC.

I still have annual blood tests, but I still only test +ve AMAs, and am otherwise perfectly healthy. I eventually learned that although AMAs are a strong indicator for PBC, having AMAs is not a good enough diagnostic feature on its own, to say that someone has PBC. Some people just have AMAs - full stop - and may never get PBC. Blood donor statistics show that 8% of the UK population have AMAs, but nearly all never go on to get PBC.

For a diagnosis of PBC, a person needs to have 2 out of 3, of these diagnostic features:

1 - presence of AMAs ... and/or :

2 - abnormal levels of 'liver function tests' (lfts) when blood is tested … and/or :

3 - damage to the microscopic biliary tubules of the liver, which can only be seen via liver biopsy, which is then examined under an electron microscope.

Most people are diagnosed as having PBC by both Tests 1 and 2 indicating PBC.

If there is any doubt, then a liver biopsy might be done.

However, if you only have AMAs, that alone is not enough to be diagnosed with PBC.

If you have PBC, Quirky!, then it's most likely that you have AMAs, and abnormal 'lfts' which indicate PBC. Also, you would be on the drug urso, and have annual - or more regular - checks. Some people, like you, never have symptoms, although that is rare. But if you have definitely been diagnosed with PBC, then you should have at least 2 of the above 3 tests, that indicate that you have PBC.

Hope this helps. It's not an easy condition to talk about, plus most of the knowledge about it - which keeps expanding - has only been discovered in the last 10 -15 years.

Take care: if you want to check out more you can email me off/list, via this site. Or, do talk to the people at the 'PBC Foundation' who host this site on 'Health Unlocked' - they are wonderful.

Cheers, Gritty

[Quirky1 in reply to GrittyReads]

Thanks so much for this! I’ve just messaged you x