The itch ?? or is it PBC : Dear Friends... - British Liver Trust

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The itch ?? or is it PBC

Dear Friends

Can someone help.

Some of you on here are aware I'm under investigation for PBC due to high blood readings picked up last year after routine check up ! The bloods have now improved and all scans have given negative results.

I'm now baffled more than ever as I'm itching in various places!

Two days ago I was very naughty and scratched my finger until it bled and my hubby said I have no will power and should have left it alone !

Has anyone else had negative scans and but still itches!

My bloods have improved which I'm putting down to healthly eating and exercise.

I don't see the consultant again until October and I only saw my GP 2 weeks ago followed by more blood tests which are fairly normal !,

It's not like me to be lost for words ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ but this itch is Errrrrr and I'm not sure what's causing it! Any advice welcome

Trish signing off

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Hi Trish. Have you read 2 recent posts re itching? There are lots of replies with lots of creams available over the counter. I also mentioned I get excema and am on a prescribed ointment called ELOCON. Good luck ๐Ÿ˜€

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Hi Laura

Yes, I did read upon the articles yesterday and will try some of the creams! I'm just trying to establish if anyone has got PBC but had negative results in the early stages !

Mine originally said weak but positive for possible PBC but now I'm confused !'

Oh well, I must plod on but thanks again for your concern and advice !

Love Trish x

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Hi Trish. My wife has very sensitive skin. If she uses anything like cleaning fluids or washing up liquids without wearing rubber gloves she gets small patches of intense itching on her hands. Like you she has scratched places raw. Through my liver problems and the itching involved, it was mainly on my legs arms and torso. I can't remember any itching on my fingers or thumbs. Not saying that it's impossible that it's caused by the liver but I would think it's more likely from another cause. Alf :-)

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Hi Alf

I'm itching alot on my arms, head , forehead and on my back! A year ago it was mainly my back and legs that itched but recently I'm itching in more places. My fingers healing ok and no longer itches ๐Ÿ˜๐Ÿ˜

Cheers for note! Hope your feeling more alive today if you know what I mean ?

Catch you laterz

Trish ๐Ÿ˜

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HiTrish, never had itchy hands, but loads nearly everywhere else. That was when my blood was going haywire, but it's settled down now. I used to have loads of good scratching posts around the cottage to get relief on by back. Annie used to say I looked like one of the horses at the stables๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ. I never found anything that worked, so I did scratch my chins raw.

David

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Did Annie ever video you scratching the posts! ๐Ÿ˜‚ I have such funny images jump into my mind right now ! Emmmm

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Blimey Trish, that's a bit personal ๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ, your images are probably correct ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐ŸŽ๐ŸŽ๐Ÿ‡๐Ÿ‡๐ŸŽ ๐ŸŽ 

David

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Thought my comment would make you smile ๐Ÿ˜

Wish it was me smiling as garage just called to say my car requires a new wheel bearing sensor costing ยฃ320 including today's inspection/labour ! Errrrr!

Derek's just told me off again for scratching my head ! ERRRRRRR! Its pick on Trish day ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ

PS

At least I'm in Derek's good books, I just found his missing car keys saving him ยฃ112 for replacement spare set๐Ÿ˜๐Ÿ˜๐Ÿ˜! I found them in a place he'd already checked tooโ˜บ๏ธโ˜บ๏ธโ˜บ๏ธ

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So you came out on top in the end Trish ๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ Car's are very expensive to maintain. Try buying a set of run-flat tyres....... you almost need a mortgage๐Ÿ˜ฅ๐Ÿ˜ฅDavid

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Dont laugh! I'm about to buy 2 new tyres when I return from my trip to France! I think I need to work to keep my car going just alone ....๐Ÿ˜ฃ

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MorningTrish, Iโ€™ve never had the mad itch on my hands, but my legs are clawed until they bleed most days.

Hope it begins to calm down soon for you.

Jane xx

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Hi Jane

It's my head, forehead and side today! Derek's already told me off at least 5 times in the car this morning alone!๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ! He seriously does'nt understand!

I've just collected hard copies of my blood test results and everything has returned to normal so I'm totally confused now!

Hope your day has started off as a good one?

Love Trish x

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Have you had blรฒods for your kidneys ? Sometimes they can cause itching i think . It could just be the weather or some sort of allergy .

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Very true CountryWalks. Diabetes is another. A very common cause is dyshidrotic eczema. It can be caused by alot of things like stress change in soaps or detergents like Laura mentioned. It usually comes up as little fluid filled blisters like the picture looks like. I can't say as I'm not a doctor of course but a friend of mine gets dyshidrotic eczema and it certainly looks similar.

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Hi Phoenix

Lucky me on the diabetes front, no sign of that either so I'm doing something right! However I used to have eczema in my teens but none since!

Again many thanks to you and everyone else for your concerning replies ! I've decided to just move on and talk no more about my medical ups and downs until I've seen the consultant on the 8th of October!

Well this morning should be interesting as I've been asked to wear my British Liver T Shirt and report to my sons company for photoshoot !!!! I'm not sure were this is leading but hopefully for somekind of corporate promotion re my Sky Dive! ๐Ÿ˜

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Hi Countrywalks

Cheers for your reply !

Todays the first morning I've woken up feeling fine so I'm going to put the itching on the back burner as the saying goes! With regards to my kidneys I do have 2 small kidneys cysts in both kidneys which was confirmed last year after a CT scan. As far as Im aware all cysts are fine and not causing any issues like a few growths I have on both lungs too! GP did a full blood test covering everything and alls fine on your kidney question !

Many thanks for your kind concerns but I've now decided to get on with life , no more mentioning itchy skn after today! Lol

Hope your getting on top of your medical problems too?

Take care

Love Trish xxx

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Thats good news if your feeling better .well if your blood tests are okay im sure youll be fine .and no im not on top of my medical problems not feeling good at all im itching badly and in pain in my back almost constantly i wish i had never drank if only i had known it could harm me like this looking back i was nieve my upbringing was rarther sheltered .the way im starting to suffer now i would not wish on my very worst enemy alcohol is not worth loosing your life over i wish i stayed well clear of it now and getting help for liver problems is no easy task.

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Hi Country Walks

Have you got date yet for private consultation ?

Oh well by to my packing !

Love Trish x

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No im still waiting i havnt felt good this morning had bowel problems i went to an after wedding on sat i didnt want to go but it was an old freind they did a hog roast i think thats upset my tummy plus i think its reacted with my lactulose . are you going away as in packing ?.by the way i was looking at your photo of you on the other post you put on you look fantastic for a lady in her 60s your very pretty xx

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Oh my! Calm down with the compliments! I do try my best to look ok as I'm scared of getting/looking old!

I avoid booze and cigs as both age your skin! Well I'm lying there, I do occasionally have one small fruity gin topped with lots of fruit, ice and ginger ale as a treat maybe once a month or a tiny German bottle of larger! Lucky for me I've only ever been drunk three times in and life and I hated the bad heads so I dont miss it at all!

I'm looking forward to hearing that you have a date to see the liver consultant. I do hope you feel much better soon.

Take care love Trish xxx

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Hi again

I forgot to mention, yes I'm driving down to Brittany tomorrow stopping off at Hon Fluer for the night for some mussels! Sunday going to a Glastonbury type festival to watch Christine and the Queens in concert then back home!' My cousins family are house sitting which is wonderful as they'll be watering my lovely flowers๐Ÿ˜

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Wow that sounds amazing im so jealous i used to like escaping but since i became unwell 16 months ago that does not happen now i get tiered and im in pain . I hope you have a loveley time you desreve it your a loveley person xx

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Thank you !"

๐Ÿ’•

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Have you changed your soap, shampoo, conditioner or shower gel or washing detergent recently? I only use cleansers and facial moisturisers from the ' simple' range.... no purfumes in them.

It may be some kind of allergy you have just acquired. Its possible to get allergies to almost anything at any time of life these days

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Hi Laura

Nope on all! As an ex nurse that was one of the things I did think about! I'm also not eating anything different either!

I'm putting myself in the weird category until I see my consultant! ๐Ÿ˜๐Ÿ˜!

Cheers for reply anyway!

I'm now off to meet a lovely lady who's writing an article on my sky dive! Hopefully photos will be taken of me wearing TShirts from the British Liver Trust and the QE Hospital which arrived 5 minutes ago! ..... Fate is helping me as they arrived in time ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Love Trish xxx

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It worries me a little when you say negative scans. Not sure what scans your referring to, but as I understand it scans are not a diagnostic tool for PBC. PBC can be diagnosed by blood tests and or a biopsy. Some scans can inform your doctor of what stage your at, by the stiffness of the liver, but if early stage before any damage has occurred it would read normal even with pbc.

I only itch minimally with pbc but itโ€™s only just started, so canโ€™t answer your question about itching and negative blood tests,. I was diagnosed nearly 10 years ago after going to GP about something else, I had the AMA M2 antibodies and a slightly raised ALP, at a high enough titre for a dx.

However itโ€™s one of the most common symptoms that take people to the doctors. Theres no relief from scratching and it can be any where on the body, including the hands and feet. Mine feels like insects under the skin. I use a 2% menthol cream from the chemist, because I only itch when Iโ€™am hot and this cools the skin.

Trish, I would advise you to call the PBC foundation with your blood results ( not sure what you mean by fairly normal) and whatโ€™s been tested and how long youโ€™ve been seeking answers, itโ€™s not nice being left in limbo. They will help you through this minefield and help you compose relevant questions for your consultant and to ensure every avenue has been looked at. Please please call them your such a support to others, you deserve this support for yourself. Take care, have a good day.

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Hi Candy

Thank you for your in depth reply!

In May of 2018 my GGT was 150 which I know is not extremely high but was of concern to my GP ! Over the following months until February of this year they stayed at around 145 to 148 ish! My ALT were also raised to 58 which again is not that high. I do however have a medical history of my LFT's shooting up and have been asked numerous times by various GP's if I have a drink problem!!! Errrr!

Today my GGT is 42 which has not been that low for 15 years plus.

Your correct about the PBC only being confirmed via bloods or by a biopsy! The MRI CT fibroscan and Ultrasounds highlighted no problems which was excellent news! Just for the record I never requested any of this as I thought I was fairly healthly but slightly over weight which has now been sorted by healthy eating!

I'm not sure whether being over weight could have caused the raised autoimmune bloods to raise for almost 12 months!

With regards to the itchy skin, this I cannot comment on any further as I have no idea what's causing it or the muscle cramps in my legs and arms!

All of the pains around my Liver region have now gone since eating healthy too! However I still get a swollen bloated upper gut for no apparent reason which I'm living with.

It might be worth calling the PBC Association but I feel like I could be wasting there time now that my bloods are almost normal. My haemoglobin is the only one slightly raised now along with my cholesterol which has always been raised. My GP not concerned about either as I'm not diabetic and my blood pressure is normally around 62 over 112 ! This was a joke to see who's awake 112/62 well spotted WASS 71๐Ÿ˜‰

Maybe in October I'll be discharged by my consultant and will then be leaving this forum after my sky dive as I will no longer be a liver patient under investigation ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ!

I must say I'll miss you all !

Trishi /Rock Chick

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Aw Trishi - maybe we will meet n heaven soon if youโ€™re 62/112. โ˜น๏ธ.

Ah Wass saw it too. She made a funny comment about it- good one wass. Iโ€™m afraid I took you at face value โ˜น๏ธ

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Oh poo my reply just disappeared into cyberspace! Errr!

I wrote! ....

I'm so pleased Wass picked up on my deliberate error as it was a test to see who's fully awake and reading my notes, plus I was running out of ideas to get you all chatting with each other ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚sick I know!

We shall meet in heaven as our endings are inevitable! It all depends on how long you want to hang around as some move on quickly ๐Ÿ˜‰๐Ÿ˜‰๐Ÿ˜‰lol

I'm now at the gym trying to get over another garage bill of ยฃ335errrr

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Oh dear me โ˜น๏ธ. Hate to admit but weโ€™ve just paid ยฃ1500 for travel insurance. All my fault too. Conditions declared Miles 13 Wife 0.

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Blummin heck Miles! Bloody insurance companies ! Greedy ba.....๐Ÿคฌ๐Ÿคฌ

Try not to let it spoil your hols as you both need this!

I could always branch out in your area and you could manage it ! It's not bad money either! You'd make it up in a month ! ๐Ÿ˜‰

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ยฃ1500 a month Trish. Sure? ๐Ÿ˜

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Miles,

๐Ÿ˜‚

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Oh god donโ€™t tell my missus that!! She is so looking forward to going away once Iโ€™m 6 months post tp!! She wonโ€™t be impressed if insurance is that much!!๐Ÿ˜ฉ๐Ÿ˜ฉ

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Hi Huggy

I wonโ€™t tell her - promise! Plus it doesnโ€™t cover USA, Canada, Mexico or the Caribbean . It was ยฃ900 more to cove those areas โ˜น๏ธ. On the plus side - is there a plus side? - it is for a year lol.

Miles

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Like the year bit! Another holiday to book ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Go for it!!!!

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Oh bloody hell!!! I was wondering how much a years ins was.....now I wish I hadnโ€™t wondered!!! ๐Ÿ˜‚๐Ÿ˜‚

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Sorry huggy!! But depends enormously how many conditions you have - or are willing to declare or risk not declaring. I am very risk averse.

Miles pilo

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I hope your BP isn't 62/112 as this would be a very high diastolic blood pressure?? Maybe you mean 112/62, did you do nursing in Australia they are upside down too. Ha ha.

Regarding PBC with negative results (and I may have mentioned this in a post when you first joined, so forgive me if I'm repeating myself), the EASL guidelines have a criteria for diagnosis. This is copied from those guidelines :-

EASL recommends that in adult patients with cholestasis and no likelihood of systemic disease, a diagnosis

of PBC can be made based on elevated ALP and the presence of AMA at a titre [1:40 (III, 1).

8. EASL recommends that in the correct context, a diagnosis of AMA negative PBC can be made in patients with

cholestasis and specific ANA immunofluorescence

(nuclear dots or perinuclear rims) or ELISA results

(sp100, gp210) (III, 1).

9. EASL recommends against liver biopsy for the diagnosis

of PBC, unless PBC-specific antibodies are absent, co-

existent AIH or NASH is suspected, or other (usually systemic) co-morbidities are present (III, 1).

10. AMA reactivity alone is not sufficient to diagnose PBC.

EASL recommends following-up patients with normal

serum liver tests who are AMA positive with annual biochemical reassessment for the presence of liver disease.

I think number 10 answers your question - they should recheck your AMA and LFT in 12 months. Regarding uss, they are recommended to rule out other causes of raised LFT, like gallstones etc. Or more advanced liver disease. As they are not looking at the cells, they would not be able to diagnose or rule out very early stage PBC.

I hope your itching improves, I know how horrid it is. I'm currently battling all over itching, in fact I don't know where to itch first!!! I agree menthal cream does give momentary relief, and is worth a go, (not on open skin though, I think that would smart a bit). Gp can prescribe as a tiny tube is about ยฃ6, and won't last long if you have all over itching. I got a big 500ml bottle with pump dispenser from Gp, which is much better. I also have a sedating anti histidine to take at night, which helped for a short time, but doesn't do a lot now.

Take care Trish,

Best wishes

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Hi Wass

Was that in English - I was going to say Finnish but some sensitive souls might take offence <joke btw> Could you please translate?

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Yes, I deliberately write in code specifically to bamboozle you Milli. Which bit would you like me to translate into PiloMilo friendly language? Hee Hee!! ๐Ÿค”๐Ÿ˜œ

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Wass!

Just so you aware I only did 2 years of nursing before my life changed and never completed the full training! Sadly I regret every moment !

I'm going to digest your message in detail when I get home but did understand most, not like Milliplop! Sorry Miles as I just love winding you up until October ! ๐Ÿ˜ฃ

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Oh shame, I'm sorry to hear that about the nursing. I was just being cheeky because I assumed you'd had a 'brain fart' I think they call it, rather than saying a senior moment?? ๐Ÿค” I often type crazy stuff without realising, especially when I message late at night. Also my brother in law lives in Australia and we often joke about things being upside down!!

If you don't fully understand those EASL guidelines, the PBC foundation have produced a service user version to make them more accessible. Just search their website. Sorry I can't send you the link, but not sure how to on my phone. And I'm a technophobe!!

Basically, I think your Dr seems to be approaching your situation in a sensible, pragmatic way. Keep an eye on test results, and recheck them 6 - 12 months time.

Best wishes

XWassX

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Oh - Do I get a reprieve in October then ๐Ÿ˜๐Ÿ‘

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Ok smarty๐Ÿ˜ I know you like to follow things through๐Ÿ˜Š I'm letting you off ! However you knew ! ๐Ÿ˜lol

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Hang on a minute ! October! Are you ?

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I havenโ€™t got a clue what youโ€™re talking about! October is a marker for what? Come on Trish ๐Ÿ˜

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You referred to October !

I thought youd picked up on an earlier comment that I made relating to my possible discharged in October after seeing my consultant due to normal bloods again! I shall then be leaving the forum after sky dive as I'm no longer a patient with an illness or recovering from one that I can give advice on!

Now less of being bossy ! I'm not....

๐Ÿ˜๐Ÿ˜๐Ÿ˜

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Umm You referred to October 21 hours ago:-

โ€œI'm going to digest your message in detail when I get home but did understand most, not like Milliplop! Sorry Miles as I just love winding you up until October!โ€

I replied to that 1 hour ago.....

Tarot cards playing up? ๐Ÿ˜

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I have PBC and I itch but my itch is everywhere not just one place, my first ultrasound was clear but I had a very high AMA and later given a MRE which at that time I was diagnosed. I also have mild night sweats, bloated tummy at the top but it does go down during the day, I am on diuertics. I hope this helped.

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Hi Sophiab

Thank you for your note , I'm sorry your suffering with this horrid diseases! Your symptoms sound similar but for now I'm giving up trying to guess what's going on! I'm just getting on with my life and logging on my computer the days I'm not 100 per cent! Maybe it's my age ๐Ÿ˜๐Ÿ˜๐Ÿ˜ it's definitely not the change that's for sure as that happened in my 30's! Lucky me๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜

Bye for now x

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Hey Trish,

Well, I had pbc, and generally most of my numbers were ok. My bilirubin went through the roof during some of my โ€˜doolallyโ€™ moments, but generally not too bad. But all the time Iโ€™d scratch my lower legs. Used to drive samantha mad!!

But, since tp, not a single urge to scratch!!!

Not really sure that helps too much!!

Andy.

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Cheers Andy for your note! ! Based on my bloods todate I personally cannot see me ever going down the TP route! However Derek's just told me off again !Errr for scratching my arms and hands! He's now on his ipad lookng up other itchy causes which I find hilarious !!!! ๐Ÿ˜…๐Ÿ˜…

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Fingers crossed you donโ€™t go down the tp route....itโ€™s a nightmare!! The food at qehb is beyond disgusting!! Care, amazing, food, horrendous!!! ๐Ÿ˜„๐Ÿ˜„

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The foods that bad! My amazing ex brother in law was the Executive Chef over the QE Food for above 40 years ! He retired some time back! When did you have your TP done???

Lol โ˜บ๏ธโ˜บ๏ธโ˜บ๏ธ

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Ah not on his watch!! It was 8 weeks ago!! I lost nearly 2 stone in 9 days!! Canโ€™t have been down to the op....must have been the food!! ๐Ÿ˜†๐Ÿ˜†๐Ÿ˜†

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Wow Huggy

Only 8 weeks ago since your TP Congratulations my friend! How are you really feeling after losing that large amount of weight in such a small amount of time!

I must say your amazing answering my queries with all youve recently been through ! Thank you .

Do you live close to the QE area ?

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I must say, since being released....sorry, discharged, I have felt absolutely fantastic, just like normal!! (Whatever that is!!) my wound keeps reminding me Iโ€™ve just had surgery but thatโ€™s all!! Itโ€™s very boring not working!!

No, sadly not close enough to QE!! About 2 hours away, just outside bath!! Back there again on Thursday for clinic!!

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There's no need to apologies about release/discharged as I understood!

Just behave and no heavy lifting at all! Pilomilo will tell you about his incident if he hasn't already ! I know he's still in pain which is such a shame!

So you live close to Bath which is such a pretty area, shame its a bit of a trek to the QE, hope your journey up is a comfortable one on Thursday!

Take care and nighty nite

Love Trish

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It was the breakfasts that got me Andy. By the time they got to us they had almost always run out of yoghurts and the toast well umm it was seriously like cardboard - stone cold cardboard as well! The food at Royal Derby is much better - only my opinion though!

Miles

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Oh you just gave me a severe case of the shakes Miles, as I remembered the toast!! Nothing you put on it made it edible!!!

The ice cream can never be described as ice cream!! Ugh!!

A.

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I'm guessing it's fatless ice cream ! No taste! ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ

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To be perfectly honest guys, toast always tastes like cardboard if not munched up from within a certain amount of minutes from the toaster! You cannot blame that on the chef on this one! I'd fight his corner!๐Ÿคผโ€โ™‚๏ธ

Come back to me with something more tangible than toast๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

I love winding you guys up .....hehe

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Didnโ€™t blame the chef. It is the System thatโ€™s at fault. They shouldnโ€™t start delivering food at one end of the building with the toast already loaded so that by the time it gets to the last ward itโ€™s a disaster!

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You are so correct in your comment! ๐Ÿ˜ its the system!

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Here's another thought!

I bet your an expert buggy driver now around your hospital! Just think how happy the patients would be if you delivered hotish toast with your smile ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š

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I hava all negative results, but still have pbc.

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Really !

How was your PBC detected ? I'm presuming by a biopsy if your bloods were negative ?

Trish

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Yes, by a biopsy. I didn t have any sympthoms, just sky high blood work.

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Ah! You did have high bloods ! Mine are totally normal again, hence my earlier comment that I may be discharged in October after seeing my consultant ! Then its bye! bye to you all I guess ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ๐Ÿ˜ฃ

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