Has anyone been symptom free for a long time?

[cazz22]

I don't have many if any symptoms(not sure if the aches and pains are down to natural aging im55)but everyone in the 'profession'ive spoken to assure me they will come which is a hell of a fun thing to look forward to.just wondered if any of you long time diagnosed people out there are still symptom free?

[GrittyReads]

Have you been diagnosed, and if so what criteria did they use?

Officially, there should be at least 2 out of 3 criteria satisfied to give you a diagnosis of PBC, preferably all three.

That is:

1) abnormal liver function tests (lfts), and/or:

2) the presence of AMAs (antimitochondrial antibodies), and/or:

3) a biopsy that shows damage to the liver consistent with PBC.

They rarely do biopsies in the UK, so diagnosis is often on 1 and 2, but now ultrasounds, and/or fibroscans, and/or MRCP scan, and/or MRI scan can tell more, and are safer than biopsy, if the diagnosis is in doubt.

But there are folk on here who are adequately diagnosed who don't have symptoms, and others who have symptoms but still maybe only have AMAs, then ones like myself who have a diagnosis (in my case as 'pre-symptomatic for PBC' which doesn't actually exist on the books), yet are otherwise clear of symptoms and lfts are fine. It's a weird and multi-dimensional condition, with time scales that vary hugely.

Try to relax, take care, and nourish yourself: mentally, physically, an emotionally. Exercise, watch your diet, and have fun, reduce stress: boost the adrenals!! Try not to let the diagnosis drag you down, I think that's when the condition can flourish - just my opinion.

[cazz22 in reply to GrittyReads]

Cheers.yes have positive AMA at highest titre(whatever that means)had highish ggt for several years and nodules on liver(see question earlier).usually feel fine and was super fit before this

[Ballymahon2 in reply to GrittyReads]

I agree easier said than done i am so stressed since got diagnosis any advice would be appreciated

[GrittyReads in reply to Ballymahon2]

Hi Ballymahon2,

I am replying to you, as your comment has been posted as a reply to me, today (24/10/2017), and not to cazz22, who made the original post.

It's come to me because I was replying to the initial post from cazz22 (at top), and the way this weird reply chain works is that the one below gets sent to the one who last made a comment to the poster - unless you put your reply in the very top 'reply ' box ... just underneath the question by the main poster ... (I'm sure that doesn't make sense but it's the best I can do!!) .

However, cazz22's post and my reply was 3 years ago, so there is not much chance that any one else will look at your post and comment now - I happen to know you posted, as an email just came to me.

But, all is not lost, just post a new question, outlining you current diagnosis and state, and detailing some of your worries, and I'm sure you will get lots of help and good supportive advice. I'd say more - now - but it may not be relevant as since I posted 3 years ago, I saw a leading PBC specialist, and he reversed my PBC-ish diagnosis, so now I'm only classed as having AMAs. I'm not otherwise ill, and have no signs of PBC, I'm just one of the many people who has AMAs - some people just do have them. However, having the PBC-ish diagnosis reversed did make me feel much less anxious - as did finding this wonderful PBC expert - and it sure made a difference to insurance! Hope this helps,

take care, Gritty.

[Ballymahon2 in reply to GrittyReads]

Thanks gritty i have problem with bile ducts dont have symptoms having fibroscan on 7th nov and maybe liver biopsy soon after my doctor said he has another female patient with same complaint and she is responding well to treatment which involves an immune suppresent fingers crossed glad to hear you are doing well

[GrittyReads in reply to Ballymahon2]

While you are waiting for the biopsy - and then for results - try to spoil yourself and do things you love. In fact, do anything to de-stress, as it is the worst thing for almost everything, especially auto-immune issues.

Hope the biopsy goes well - they are amazing things and loads on here have had them and say they are okay to do - plus they do give so many answers.

Let us know how you get on. Even if it's not PBC, it is all info to add to the 'liver knowledge' store.

Take care xx

[Ballymahon2 in reply to GrittyReads]

Thanks grittty will do

[Ballymahon2 in reply to GrittyReads]

Hi gritty reads

Had appointment with hepatologist monday she is not sure if i have pbc and has done more blood tests fibroscan ultrasound and blood tests ok

Just waiting game should know this week

Have no symptoms

[Hidden in reply to Ballymahon2]

If you are in US, they might want a biopsy if blood work is inconclusive.

[Ballymahon2 in reply to Hidden]

Yes i think hepatologist mentioned that i live in ireland will know more this week as hepatologist is phoning me as she has carried out further blood tests thanks for reply

[Ballymahon2 in reply to GrittyReads]

Gritty going for fibroscan tuesday awful week so depressed my gp has two patients with pbc they are treated with immune suppressants rather than urso dont know why are there various treatments for pbc

[GrittyReads in reply to Ballymahon2]

Again try not to worry, as it's not awful, plus it is better to have some answers and finally know what is what - rather than being in limbo.

As to immune suppressants rather than Urso: they won't give Urso until they are sure it is PBC, and it may be that the immune suppressants are the best treatment to cover a range of things, while they are still finding out exactly what is going on.

Take care, try to avoid stress, and treat yourself and do things to take your mind off the biopsy, before Tuesday.

Gritty. xx

[Ballymahon2 in reply to GrittyReads]

Thanks for all your help will do

[Hidden in reply to Ballymahon2]

Some people are more complicated to treat. They can have pbc/AIH overlap so they need the immune suppressants. Also those that don't respond to urso might have to try other combos to see what might work for them. Because this condition is rare, it is less obvious how to treat & every patient is treated on a case by case basis. The Hepatologist will assess & provide the best treatment he/she deems fit.

[Ballymahon2 in reply to GrittyReads]

Had fibroscan score 7.5 nurse said it was good result meet consultant on 20th nov feel scared

[Ballymahon2 in reply to GrittyReads]

Gritty had fibroscan score 7.5 nurse said it was a low score she said scan seems ok have appointment with consultant on 20th nov so anxious

[GrittyReads in reply to Ballymahon2]

Hi, the fibroscan score is good.

Also, I understand you are nervous, but it is so good that they are checking and following up all areas. I understand you are stressed, but seeing the consultant is good, and answers will be better than being unsure and in limbo: they will get to the bottom of this.

Take care, keep treating yourself and having fun and doing all you can to de-stress, yet while eating well (no alcohol) and exercising etc.

Why not start a post of your own, to tell us what has happened, what happens next, and to let us all know how you are? Most people on the site won't be seeing your questions, as you are hidden away inside Cazz 22's 'post' , form over 4 years ago.

Also, you will reach the full audience on the 'PBC Foundation' website and may get more info and insights.

Take care, spoil yourself, and all good wishes.

Gritty

[Ballymahon2 in reply to GrittyReads]

Thanks gritty will keep you informed

[Ballymahon2 in reply to GrittyReads]

Gritty can you write down questions for me to ask hepatologist next week i want to get as much info as possible about my condition from her

Many thanks

Aine

[GrittyReads in reply to Ballymahon2]

I think it would be better if you contact the 'PBC Foundation' and get a copy of their document about the diagnosis of PBC. TAlso, talk to them about what questions to ask. Plus, read around on their site and learn as much as you can.

Then, come back onto this 'PBC Foundation' site and make your own post, to everyone. State your symptoms, say what you have had done so far, and what the Medics have said so far, and write a brief list of your question ideas, so far. then ask others to contribute.

I only have a particular narrow perspective on PBC, and it would help if we get a lot of the other folk on this 'PBC Foundation' site to help out, as many of them would have different and wider experiences than I have.

Hope this helps.

[Ballymahon2 in reply to GrittyReads]

Met the hepatologist last monday she couldnt confirm pbc based an my blood tests fibroscan and ultrasound the scans look good and i think most of the bloods were ok still awaiting a diagnosis she did more blood tests in the hospital and said she will phone me this week

[2006]

I was told I had PBC by my blood work but I don't have any symptoms yet! I am not looking forward to that day either.

[LindaSusan]

I was diagnosed about 11 years ago and apart from red blotchy palms and a raised liver profile I have no other symptoms.

I am 66 this year and retired but very active. Any aches and pains I put down to cold damp weather or I relate them to my age.

Diagnosis is dreadfully frightening and because GP's rarely know enough about the condition they fail to be reassuring. We feel we are living on a knife edge waiting for something dire to happen. However one GP told me I was more likely to get run over by a bus than to have this condition kill me.

[cazz22 in reply to LindaSusan]

Thanks for that Lindasusan.do you take urso?

[LindaSusan in reply to cazz22]

No I am not taking any medication at all. In fact I've never even been offered medication. And I see a gastroenterologist every four years for endoscopy and ultra sound. I have blood tests every year at my GP and if liver function tests are raised I am referred to Gastro man earlier.

[PatinJersey in reply to LindaSusan]

Thanks Lindasusan! Love the outlook your doctor gave you. Makes me feel a lot better. I treat mine like my blood pressure. Just take the meds and try to forget about it and not eat too many sweets like I LOVE.

My doc is the same way. Very encouraging.

I think I'm a trooper as I was driving home from work, got the call on my cell, and heard the news. I had to pull over, because I was afraid I would crash. But, somehow, I handled it, and even gave him my correct weight for Urso dosing! HA HAA.. Oh well.. the shoe has dropped, and I don't fret as much anymore. "Funny thing happened on the Way to the PBC Diagnoses!!"

[Hidden]

I was diagnosed about 3 years ago, maybe more now..... I am completely symptom free. I am hoping it will continue as Urso seems to do its job and keep my liver working more 'normally'.

I never see my gp re my condition, I see a consultant at Bart's and the London, who is very matter of fact and knowledgable.

Take care

Lou

[Hidden in reply to Hidden]

Hello louf.

I am so pleased to read that you are sympton free with PBC currently and hope it keeps ongoing.

I went to see my GP due to itching back in 2010. At the time I did have fatigue but I never thought anything of that.

Fatigue left me quite some time ago now but I put that down to changing certian things in my life jsut before and after diagnosis (Dec 2010). The itching is still with me but it altered and though it can be irritating at night it is by far better than it originally started out. Not sure if the itch will disperse but regardless as long as that is all I am having to put up with PBC then that will have to do for me as I know it could be far worse.

[Hidden in reply to Hidden]

Hi

I only found out after having some blood tests to check my cholesterol, unbeknown to me they checked loads of things - one being liver function.... It was a shock, but my brother had a transplant 5 years ago, so I know what can happen..... And I don't take life for granted.

I know you have had ups and downs in your life, which can cause your body to react. Let's hope the itch doesn't get any worse for you and we are both still on here in 15/20 years advising others that life still goes on

L x

[jrobertson1]

I was diagnosed in 2011 and am largely symptom free. As you say, I do have aches and pains but so do many of my friends and colleagues who are around my age. I am 54 and think myself lucky to have been diagnosed early as Urso seems to be working for me. I have regular check ups and blood tests and have had 2 fibroscans which have replaced biopses according to my consultant. My liver shows no cirrhosis as yet and may never do, I am told. Good luck for the future. Long may we stay symptom free.

[Oidra]

I am 73, have PBC and enjoy life. I have never had a biopsy, take 3 x 250gm Urso

after breakfast, have LFT and scans and see my specialist every 6 months. I have all the usual stuff that everyone seems to have ( but thankfully not the the dreaded itch) but it comes and goes. PBC has never stopped me from doing anything I want to do.

[Hidden in reply to Oidra]

Hello Oidra. I am with you there so far, PBC has so far not stopped me doing anything that I want to do. Glad you do not experience the itch as I do at night and it is irritating causing me some night to have very little sleep but I pick up and get on with the day and hope to gain some sleep on the subsequent evening as does happen.

[PCBnPBC]

I am Male, 60, felt like I was loosing stamina, some itching, almost never seen the doctor in 15 years - went to Doctor believing being 60 years young would account for only feeling 99% ---18 months later I am with all the symptoms Hepatic Encephalopathy, gross fatigue, itching, turning night in to day, on 24 tablets a day and half way up the liver transplant list....... I have experienced a Gastric Bleed, (Varicees) and am not a well bear at all! All my trust and faith in the Newcastle transplant team (who are a great team) and making the most out of life. Perhaps I should also give my darling wife a mention here too! Transplant team we hope may "fix" the problem, Wife lives my problems with me, supports me, takes flack from me, loves me, and I love her sooo much we face this as we face everything together, as she shares my suffering and pain I manage to smile every day - if I feel down I remind myself most of the people on planet Earth would swap places with me in an instant, so not too bad a place to be!!

[Flymccoll]

I am not symptom free but I know a lady in her 70's who is so hopefully you will be one of the lucky ones

[hotdog]

I did not have any symptoms from my PBC other than red palms for a year after diagnosis but since then I have the intense itching (pruritus) in various areas of my body although mainly on my back, shoulders and neckline. I am now on a trial of Rifampicin as the first treatment of Cholestyramine gave poor results. I have been on this for two months now and as yet no improvement but my consultant said there are other things that can be given. So I live in hope that something in the end will help as the itching is so distressing particularly at night. You will note that many people with PBC do not get this at all so I hope you will be one of those that does not. Other than that I feel quite well in myself. Aches and pains due to age I think as I am 66 yrs old. Try not to dwell on it if you can and enjoy your life to the full. As someone said you are more likely to die with it than from it.

[losmos190]

I'm male (65) and was diagnosed nearly two years ago. I don't have any of the usual symptoms and feel fine.I take 3 Urso tablets at night and my GP says my lft readings are "getting back to normal". I'm due a further fasting blood test next week so will be interested to see the results. I don't have any hospital consultations. The gastro specialist said he didn't see the need to see me further as long as my condition is monitored by my GP. Just keep trying to live life to the full as I'm trying to do and try not to let life get you down!

[Hidden]

Hello cazz22.

I only have the sympton that I do know about - itching at night. I was diagnosed with PBC Dec 2010.

I have abnormal but not overly-high LFTs and I did a high titre of AMAs back in later 2010 (didn't get any number for the AMAs, just the word 'high').

I started on urso Dec 2010.

So far, so good. My LFTs are not as high as they were back in 2010.

Now I believe that with PBC it can stop and start with time.

I also think that for some PBC patients who are asymptomatic, that is with no symptons if you have normal LFTs as some can have and also some PBC patients find the LFTs return to normal whilst taking urso, then there's no reason why one should develop any symptons in the future.

Itching for instance is of no marker to how one actually is with PBC as some itch, some don't. Some start to itch over time, others never do.

[Hidden]

i am been 2 yrs since diagnosed with pbc that god i have no symptoms