Possible PBC /itchy skin, aching muscl... - British Liver Trust

British Liver Trust
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Possible PBC /itchy skin, aching muscles plus hot and cold feelings

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Hi All

I'm a fairly new memeber to this forum and have made quite a few lovely lovely friends who have been very supportive. I've not yet come across anyone who's been diagnosed with non acholic PBC which is known as Primary Bilary Cirrohosis for which my GP and Special Nursing Specialist have indicated I may have !

Over the last few days my symptoms has increased, my itchy skin has returned, aching muscels in my arms and legs, more discomfort under my ribs plus feeling hot and cold again. i feel ok as such but would love to chat with someone who has this type of liver disease ! I'm booked for fibroscan on tge 23rd of this monty but wont get results until 19th of March.

Would love to hear from anyone with PBC

Regards Slaines

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in reply to Hidden

Hi again

Cheers for reply! I may have had these symptoms possibly for around 10 years as my blood GGT tests started to go up and down way back and I've always had the discomfort under my ribs for the similar amount of time! Various investigations CT Scans ultrasounds were carried out. Removal of my gall bladder in 2016 which should have removed the discomfort below my ribs and back too but this didn't happen. Its only now I'm being investigated further due to my GGT and AMA blood tests staying at around 150 and indicating possible non acholic PBC.

I am aware there's no cure which I read up on back in September of last year! I just wanted to speak with someone who has it and how you've had to change your life to relieve the symptoms.

Many thanks once again for sparing the time to write to me!

Kindest Regards Slaines

Hi. Just wanted to say that you should be told your fibroscan results immediately. She/he won’t be able to discuss them as that will be done at your follow up appointment but the nurse doing the scan will tell you the score. (And if not, then ask).

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in reply to LMor

Thank you so much LMor! I really do appreciate this information very much as I'm currently in the process of booking myself on numerous training courses which I was delaying! I know you mentioned that the full results would come from my consultant which I do understand, but knowing some kind of result before the 19th of March will help towards my future decisions.

Thank you so much.

Regards Slaines

Hi Slaines, I have PBC, which is now renamed as primary biliary cholangitis. I was diagnosed when I was 35, after 5 or 6 years of problems following a couple of hospital admissions with gall stone pancreatitis. It took ages for them to find the cause, it was pain which took me to the gp initially. Unfortunately I didn't respond to the medication ( udca/ urso). So 12 years on my Pbc has not been controlled and I have cirrhosis. Now this is the exception, most do not go on to develop cirrhosis or need a transplant. I think currently only 8% of all UK transplants are because of Pbc ( I think I've remembered that correctly, my foggy brain does play tricks on me,??).

In order to be diagnosed with Pbc you need to have more than just a positive ama. The European Association for the Study of the liver, has written Pbc diagnosis and treatment guidelines. I'm sorry I can't seem to copy the link, but if you google Easl Pbc guidelines it will come up.

There is a Pbc forum on health unlocked, which is hosted by the Pbc foundation, you should definitely join the Pbc foundation, its free and it gives you access to all their documents, info and studies. They only report evidence based up to date information. They have links with the most eminent Pbc specialists, and provide medical and psychological support. They can help you get the diagnosis in perspective. The majority of patients die with Pbc not from it. It has effective medications at slowing progress.

They also provide workshops and conferences, so you can meet others with the condition, and learn about living well with Pbc.

I hope this is helpful, feel free to pm me if you want to know anything else, if I know the answer I'll help, if not I might be able to point you in the right direction.

Best wishes

E x

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in reply to Wass71

Hello E

Tjankbyouso.much for your in-depth reply which I understood well!

Sorry to read you couldn't handle the medication and sad news you now have cirrohosis! If I'm diagnosed with PBC

and with out sounding negative I too may possibly have a reaction to the medication as for some apparent reason my system rejects more medication than I can take. Anyway listen to me, I should think more positively! Like you I too had on going issues prior and after gallbladder was removed in 2016!

I like the idea of joining the PBC forum and possibly meeting others if diagnosed with it!

Thank you for invite to PM you should I have further questions! I will keep your details just in case!

I have however noticed that quite a few with suspected PBC seem to undergo biopsy for final confirmation I think?

Once again thank you for sparing your time to write to me!

Please feel free to PM me even if only for a chat and to update me on how your feeling, Good or bad!

Take care E

Best wishes to you too !!!

Slaines

Hi Slaines, those guidelines I mentioned, EASL, state that liver biopsy shouldn't automatically be used for diagnosis. If you have positive ama m2 antibodies and raised alkaline phosphatase then this may be enough to confirm diagnosis. The Pbc foundation have done a synopsis of the guidelines in layman's terms, so really worth looking at.

The first line treatment, urso, is well tolerated as it just helps to move the bile through the liver. Different brands may use different non medication ingredients, so people try different brands if they have any issues. Now for those that don't respond they have a new medication called oclavia, it was just too late for me. I was on one of the trials for this drug, but my liver was to broken by then, and currently there is not the evidence for use in advanced disease. The use of these meds has been a game changer, if the levels of all alkaline phosphatase are kept under 200, then this is a good indication the Pbc shouldn't progress.

I think getting the diagnosis confirmed is the priority, and then if you do have it getting urso prescribed. Try to stay positive, as this illness doesn't stop your life. Most people manage their symptoms and carry on as normal.

Good luck

X

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in reply to Wass71

Another well written note Wass71!,

My recent blood test we're not to bad compared to others.

Alkaline Phosphate down from 140 to 120.

ATL 46- from 58

GGT 134 from 150

Bilirubin 9 umol/L from 6

Albumin 46 from 44

I'm still waiting waiting to hear about all the blood tests taken by the hospital last December 17th which I won't know until March consultancy appointment !,

For the last 7 months my monthly GP blood tests have been similar to the above. I've noticed others peoples have been extreme higher readings compared to mine so it could mean I may have early stages of PBC or not! I'll just have to wait and see! However my September test did say Weak but Positive for PBC????

Please note this is all fairly new to me and I'm no doctor but do try my best to understand more by reading as much as possible without boring myself! However I would like to get to the bottom of it all! The 3 months waiting between each appointment is like pulling a tooth out to see your consultant, however, I know I shouldn't moan as other countries have no NHS so we're lucky plus the poor doctors are all rushed f there tootsies !,

Again cheers for your note .

Nighty nite

Slaines

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Hi,

I had my gall bladder removed back in 2014 when I had my pre-op I was told my liver reading was three times what it should have been and I remember the team of specialists discussing my scan results and one of them flagging up something about my bile duct which was dismissed by the lead specialist.

I have never felt really well after that operation and about 15 months ago a new doctor who I saw flagged up that my blood results indicated a liver or bone problem. I was sent down the liver route and had an ultrasound scan which came back with nothing untoward. I was then referred to a Gastrointestinal and liver specialist who ordered an mri scan which came back showing a fatty liver, I was then referred for a fibro scan ( which I did not get the results for instantly although I tried my best to get some information from the lady who took it )😉

I was told at my next appointment that I had a reading of 9.9 which indicated F3 stage fibrosis. By this time I was itching, headaches, pain in arms and legs, tired all the time and suffering from bloating, constipation/ diarrhoea and visual problems, high blood pressure but only on the bottom figure!!,

I told the specialist that I did not want to be reactive, I wanted to be proactive not waiting six months at a time for worse readings. I had lost a stone in weight by changing my lifestyle. I don’t drink but I did eat too much sweet stuff.

I was on anti depressants for a while before I was diagnosed because I was suffering from health anxiety because to be honest I thought everyone thought I was a hypochondriac 😬

The liver specialist wrote to my doctor suggesting that I should be referred to a haematologist because I had high haemoglobin 170, high red blood count, high Alkaline phosphatase 180, high Haematocrit 0.513 and he wanted me to be tested for polycythemia Vera.

I saw The haematologist on the 28 November who said looking at the readings it appears that I do have Polycythemia, but not to worry because I could take a tablet that would help. He then ordered a full abdomen ultrasound scan which I had on the 2 Jan this year. Obviously I tried for information then but non was forthcoming. I have an appointment to see the haematologist on the 11 Feb which I was advised by letter that I should allow 2 to 3 hours for possible other tests to take place and hopefully 🙏🏿 I will be told just what it is I have, I am wondering if it could be PCB all these blood diseases seem to have very similar symptoms.

I just want to be diagnosed then I can get on with my life. It’s so frustrating 😤

Sorry for long reply

Elaine 😉

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in reply to Hidden

Blummin heck Elaine, you really are going through it! If I'm perfectly honest some off your symptoms sound similar to mind which have been around for years but like you say liver problems of all sorts can give similar symptoms!

I've also had full abdomen CT and ultrasounds which didn't highlight liver issues only cysts on both kidneys and small growths on both lungs which are of no concern!

Back in 2000 I had a pilitation operation of my abdominal interior wall to stop again the on going discomfort in my back which did the trick for a few years then the gallbladder started...

Like you I'm no hypocondiraic🤣🤣🤣🤣

I class myself as fit as I do go to the gym as much as possible. However I'm slightly overweight by 2 stone which I'm trying to sort. My background is construction which I retired from last August! I'm now looking to set up a cooker class as I love cooking! I'm not sure if this is a good idea or not!!! Food tasting!!! Hehehe!,

Elaine, I'm hear for you anytime., Good or bad days!!!! Please keep me updated on how things are going! Good luck with call tests and results.

Hang on in there

Slaines

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in reply to Hidden

Food tasting sounds good to me 😉 thanks for your reply, I will follow your progress and let you know mine.

Elaine 😊

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in reply to Hidden

Cheers! Look forward to keeping in touch and will follow you too x

Hi I was diagnosed Nov. Last year with Autoimmune Cholangiopathy (formerly Pbc) I have found it difficult to come to terms with this condition as luckily I have no symptoms whatsoever. It is only scans and blood test - positive ama . That has led Drs. to this conclusion. I have begun taking Ursol and will see my consultant beginning of Feb. I was ill in 2000 for 14 months with no-one knowing what was wrong. I had every test going plus liver biopsy with no conclusion other than raised levels including lfts. As suddenly as I became ill so I became well. A routine blood test last year threw up raised levels and so it begun. So probably had this for 18yrs with no symtons or treatment. I also now have a fibrous score of 3.

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in reply to Fedupwith

Dear Febupwith!

You poor thing! Since my blood tests revealed possible PBC which I've read up on a little just in case I do have it. It does state you could have PBC for 10 years or longer before the final symptoms do raise there blummin heads! I was rushed into Hull Royal around 2002 with a temperature of 105 and raised LFT's plus UTI and was in hospital for a week whichbtgey put down to Gastric and UTI issues. I think that was the start of whatever is wrong with me!

If it's PBC I will except the outcome as life's to short to get stressed and hooked up on it all. As long as we're all there for each other we shall never be alone......

Most of my family died at an early age of cancer and each I nursed so I thank God for every additional day on this planet I have to spend with my family and friends! Life's for living as best as possible ! I'm hear for you too so please keep in touch! I will reply asap.

Slaines Female 66 known as Crazy Momma to my friends and family as I try to live life to its fullest and try to cope with whatever is thrown at me no matter whatever the diagnosis is!!!! Hang on in there! I'm here !

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in reply to Hidden

I love the fact you’re so positive, I lost my mum on Christmas Eve just gone 8 weeks after she was diagnosed with Liver, bone and adrenal cancer. She was 87 and had been relatively healthy all of her life.

Life really is for living and too short to worry about things we can’t control.🙂🙃🙂

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in reply to Hidden

Hi again

I'm really so sorry for your recent loss of your mum! I now understand your concerns about yourself and itxall happening when your at your lowest maybe!

It's years ago but I remember taking my dad to the hospital for a check up on an ulcer on his ankle. The same day he was admitted looking a picture of health. He never came out and died of multiple cancers 6 weeks later! I think about how kind he was and that I'll always have those wonderful memories which you maybe have of you mum ! Try to focus in on those times which I do when things are tough.

Nighty nite! I'm still here !

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in reply to Hidden

I’m okay honestly, I nursed her and her final days were in a hospice which was like heaven on earth, my sister and I were with her when she passed. I only got to know about my issues when she was ill so obviously I didn’t tell her! I’ve no doubt she is watching over me now 😇

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in reply to Hidden

Glad your ok! Keep in touch.

Nighty nite

Thanks and the same to you. Will keep you updated as and when. Its difficult to understand you have a condition when you don't feel unwell. I feel for all the people on this forum who seem to be suffering so much😢 Its also nice to find someone who is/may have the same condition as most on here seem to have AIH and have different treatments.

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in reply to Fedupwith

Hi Fedupwith

I do now have various symptoms but most of the time you wouldn't believe there was anything wrong with me until my symptoms all seem to hit me in one go, unfortunately antibiotics have to control some of these which I hate taking as I'm not one who likes tablets.

As I said before I'm here for you and will try to be the strong one!!! Lol! Again take care X

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