When u first took symtpms of pbc/ when you were diagnosesd with pbc did you have any viruses or infections/ been through any recent trauma?

[littlemo]

When I first suffered with symptoms that lead to my diagnosis of pbc I had two really bad doses of tonsillitis due I feel ,to fact I'd was going through a very stressful time in my life. I just wonder if anyone else feels this was the case with them too?

[Hidden]

As far as I was aware of when I started itching early 2010 I had nothing else wrong with me healthwise at the time nor had I been though and 'recent trauma'.

I think with regards to 'recent trauma' I don't think that may have any bearing on symptons of PBC due to the fact that apparently we are supposed to have PBC long before symptons can appear unless it is detected via a blood test for another reason. Over the years I had periods of where I felt tired but that was due to other reasons so I never thought anything of it, just got on from day-to-day without thinking about it and even now when I feel like flagging later in the day at times I don't actually think it is PBC-related simply because it's been there for some time. It's the itching when I get it at night that I do find the most irritating when it occurs.

[littlemo in reply to Hidden]

Thanks Peridot I like most would just love to know given the most recent research findings from the dna bank that if we are genetically predisposed to it then if there is a particular strain of virus that triggers off the otherwise dormat disease! The darn itch is my worst symptom had it continuously to greater and lesser degrees 24/7 worse at night since the year before was diagnosed in 2001 now facing possibly being put on transplant list because of it!

[Hidden in reply to littlemo]

I have periods of feeling fatigued but plod on there as that in my case currently (as you never know further down the line) it is of little importance to me with PBC. What is is the itch. The only thing I have at present. After nights where I have itch-free periods, back it then comes and then a case of thinking when it is going to let up again temporarily!

I was fine prior to going away recently and whilst away the wk but on the 2 nights prior to coming home, started up and have had since which is now a week.

I seem perfectly fine during the day, dread the evenings when it is a time just want to sit down and relax before bed but then I find I can't seem to do this these days.

[Mary48]

When symptoms first appeared, I was recovering from a variety of gut infections caught in India

[littlemo in reply to Mary48]

Thanks for reply Mary could have been that infection that triggered it in you be great if scientists could find out what exactly triggers it in order to find something to prevent or cure it!

[Junolee]

My first symptom was jaundice! The very first time anyone mentioned my colour to me was at the funeral of my younger brother who died suddenly late last year. Obviously we all put it down to shock etc. the yellowish colour came and went over the next while and eventually after going to the doctor and my blood count was through the floor I spent 3 weeks in hospital and was diagnosed. As Peridot said, Doc thinks I probably had it with no symptoms for years and the shock may have triggered the symptoms.

[littlemo in reply to Junolee]

Hi Junolee I agree with Peridot the shock prob did trigger your symptoms the traumatic time that I went through was a very shocking event followng which I feel I became very run down and tooktwo bouts if tonsillitis. Def think there is a specific strain of germ for want of a better word that triggers this be fab if scientists coud find out what to prevent the disease becoming active or even better still find out what can cur it. Take care of yourself specailly if you're still trekkng the globe!!

[Junolee]

I should mention as well that over the past 15 odd years I have travelled extensively all over Africa and South America and India too. I always had my vacinations, malaria tabs etc, had no illnesses other than the odd dodgy stomach but of course could have picked up any kind of virus and not even known about it at the time or so the tell me..

[Jtxx]

Symptoms I was having when I went to the doctor was flushed, restless legs, disturbed sleep, weight gain. My LFT's were up so they sent me for a liver scan (and eventually a biopsy), I think because of my family history (mum had PBC and aunt has it). Diagnosed with AIH/PBC overlap syndrome and also menopausal. I have often wondered if the hormone change had anything to do with triggering the AIH/PBC? No-one knows. x

[littlemo in reply to Jtxx]

Hi jtxx may I ask what age you are? I am 41 myself and def have felt over the last 11yrs since took my first symptoms that particular times of month namely time of ovulation and about a week before and about two days into period, symptoms are worse. however as you can calculate I was only 30 when i first had symptoms and my menstrual cycle was normal though I discovered in recent years I have some degree of polycycstic ovary disease so I may not have been as fertile as I thought. I only had one child at the time who was just 3 then and when diagnosed was advised not to have any more children so I did take precautions though not in form of contraceptive pill but slipped up 6yrs ago and had another child who is now 5. Lately I feel that maybe my hormone levels are changing and do wonder if maybe the pbc speeds up menopause?

[Jtxx in reply to littlemo]

I turned 47 in Feb this year but had a hysterectomy when I was 31 due to endometriosis but they left 1 overy which started to pack in same time as I was diagnosed with AIH/PBC. There is a question on here that I posted a wee while ago asking if anyone else had hormone probs. should have looked before I answered this to see how many answers. Have a wee look, might be useful. Take care. X

[Hidden]

I still think certain vaccinations have some bearing on PBC being 'set up'. Junolee states she had vaccinations for world travel. I had Hepatitis vaccinations when I started a new job 6yrs ago due to the environment and it was more than likely just after that PBC originally started from a rough calculation by the hospital consultant I saw 18mths ago.

Again it's that questionable area and also got to remember that what works for one or has a certain affect on another doesn't/does and vice-versa.

[littlemo in reply to Hidden]

Funny you should say that I had to have Hep B vaccine when I sterted working in the hospital and that was 3yrs before I took pbc symptoms and I recall it took my body quite a while to reach the proper levels to say I was covered against contracting hep b but I do now wonder if this was because the pbc was already in my body therfore took my body longer to absorb the vaccine? Yet another mystery!

[Hidden in reply to littlemo]

Yes the same with me littlemo.

I had the routine vaccinations over time, 3 courses and then when I had the blood test for checking I was informed the levels weren't right so would have to have another shot. Again the blood came back with an inadequacy so was given a combined Hep vaccine as was informed at the time that sometimes a different brand can make the difference. The blood for that came back very good as I was talked thru the readings at the time.

I have thought exactly the same as you, could the PBC have been there but I somehow would go the other way here.

Reason being and this would pose another question which I will post after, would that mean anyone travelling and needing the Hep vacs with PBC have to have a larger measure of it for it to be adequate? The mystery deepens......

[Alley27 in reply to Hidden]

Funny you should mention this..I had hep injections for hong kong visit and china... but that was 12 years ago...looking at the posts there are quite a few on here that I could relate to. Viruses...I had glandular fever in December of 2011....I also have had swine flue the two years before that.....and not forgetting a hysterectomy aged 30 for endometriosis......

I am 48 now and was diagnosed in April 2012 with AIH PBC overlap.

[AngelaGM]

I was going to my GP for years before they discovered I had PBC. They were putting my fatigue and itching down to depression, but I knew I wasn't depressed. I have tried to think of anything in the past that could have triggered this disease and the only thing I can think of is, the traumatic birth of my son or salmonella poisoning when I was in my 30's.

[littlemo in reply to AngelaGM]

Hi AngelaGM was the bout of salmonella or traumatic birth of your son close to wnen you first took the itch and fatigue i.e.weeks, months or years? which happened first the poisoinong or the birth of your son?

[AngelaGM in reply to littlemo]

Hi Littlemo, the birth of my son was first and the salmonella 3 years later. I started getting tired about eight years after that, then the itch started about three years later. I suffered for years before I was diagnosed with PBC. My GP's kept telling me my fatigue was down to depression, but I knew it wasn't depression.

[littlemo in reply to AngelaGM]

Hi again AngelaGM a friend, of mine who had pbc and has since been cured through transplant about 3yrs ago was in a similar situation to you though they were treating her for anaemia for years as the only symptom she presented with was the chronic fatigue. It was down to a locum dr that she ended up finding out she had pbc as he did further tests which showed very abnormal lft's ,following this subsequent tests then lead to her diagnosis. This is a big fault I find with gp's in general patients being left on meds for years and their bloods not monitored to see what effect these meds are having on their organs specially liver and kidneys. Feel this all boils down to( like most things in the nhs in UK) lack of funding to properly monitor patients.

[AngelaGM in reply to littlemo]

I too was getting treated for anaemia for years, but they couldn't tell me why I was anaemic. One GP told me it was because I had some bleading in the bowel and to stop taking anything with asprin as it makes the bleeding worse.

Your liver has to deal with a lot and yet GP's/ liver Dr's, just keep pilling you with pills evrytime you have a pain or other condition. I always ask them if it's ok to take other pills and they say ''oh it should be ok'' LOL. Do any of them really know what damage/effect - if any - other medication has on the liver.

[Jackie07123]

Hi. I first went to my gp because I had had a sickness and diarrhoea bug caught from children I was teaching but sickness continued and I had pain under ribs on right side. He thought I had gall bladder prob so did a blood test which showed ama's. I have since been told it was the wrong test for gall bladder!

[littlemo in reply to Jackie07123]

Hi Jackie07123 ta for reply. On this occasssion I would say lucky for you the wrong blood test was done as it probl lead to a quicker diagnosis sometimes the hand of fate i(f you believe in that i)ntervenes! Keep well

[Pat_H]

Hi

I went to the GP because of my itching. I had no traumas, viruses or infections - just itching!

Pat_H

[littlemo in reply to Pat_H]

Hi Pat H I have a very active logial mind and since I took pbc 11yrs ago am always hopeful and curious (like most of us I imagine) as to why I took this disease as I always tried to keep myself very fit and healthy. However as I said when I first took the symptoms I had just gone through a major family trauma and would say not eating, drinking or sleeping properly lead to two consecutive bouts of tonsillitis which prob triggered the perphaps dormant in me pbc to become active and thus i suffered with the symptoms of it.

[JTay in reply to littlemo]

My PBC was diagnosed after several courses of anti biotics for a loss of voice and 'infection'. And the GP decided to do some blood tests... I had lost my father that year and was dealing with a very ill mother and life was tough but was soldiering on as we do... It has been mentioned the 'loss of voice' might have been ' stress related', my mother was coeliac so there is a link there. Had no other symptoms at the time that I was aware of, it's 10 years since I was diagnosed and not suffered too much apart from the itching which is definitely worse that it used to be...

[Hidden in reply to Pat_H]

Yes PatH that was my reason for going to the doctors in the first place, my ONLY sympton and likewise, I had suffered no traumas prior, viruses or infections either.

[Jeri]

In 1988 my son had a terrible case of chicken pox, 6 weeks later I developed an evening sore throat that I still have occasionally--diagnosed as connective tissue. About 4 years ago I started having pneumonia evertime I turned around. In looking for its source they found PBC. I have since also had an open lung biopsy. I have Interstilitial Lung Disease. Total of 7 autoimmune diseases. I believe that there is something that starts this process and it does not need to be big just big to our body.

[littlemo in reply to Jeri]

Hi Jeri thats awful what you are having to live with. I have hypothroidism, Raynauds disease and Synjorens syndrome (prob haven't spelt those right!) which have taken as result of the pbc but the uncontrollable itch , specially at night from the pbc is by far my most irritating and debilitating problem. I agree that given the recent research from the dna study that there is a genetic link to all those with pbc feel you're right in that it is something that triggers it to produce the symptoms, in my case feel it was the tonsillitis but also I was going through a very stressful time so I prob was not concentrating on eating a healthy balance diet that contained anti-oxidants to help me fight the viruses therfore my body just couldn't cope and therefore reacted probablly in an overactive manner! Bit like me in general that ,hyperactive, until recently when too fatigued to be active never mind hyperactive! The human body is an amazing thing! Hope you keep well Jeri you have a lot to deal with.

[Lockness]

I was diagnosed 14 months having flu in December 2010. I never really picked up from this, never feeling quite right. GP put it down to being post viral, then in August 2011 I got mastitis (never had this before) although the infection cleared I still had a lot of discomfort. Blood tests were ordered, as well as a trip to the breast clinic. Discharged from the clinic but more blood tests requested as my LFT's were raised. In February 2012, following yet another blood test, I saw a specialist who diagnosed PBC as blood tests showed AMA's. Since been on Urso and I have generally felt much better, and my LFT's are nearly back to normal. However as I am a lady of a certain age, it's difficult to know what symptoms are due to PBC and which are due to getting older. I have tiredness to varying degrees and itching, but this is not too troublesome. Sometimes I have aches and pains, which my GP is putting down to the PBC.

[littlemo in reply to Lockness]

Hi Lockness bit confused do u mean you were diagnosed 14months after having a flu virus? I am 41 myself and do often wonder specially lately if my extreme fatigue is down to just getting older or due to the pbc. A lot of my friends who are healthy and well and are all women say they too find that they now have to have a lie down most evenigns after work! My itch has always and remains my most troublesome symptom and if I could just get rid of it or at least get it reduce to more bearable specially at night feel I could live ok with be pbc for as long as I live or at least until my liver goes into faiure and I need a transplant for that reason. Presently am looking at possibly going on the transplant list because of the uncontrollable itch which to be honest am not too happy about.

[mumofthree]

I had a hysterectomy 8 weeks before I started experiencing excrutiating joint and muscle pain. Following a referral by my GP to a rheumatologist and then to a gastroenterologist numerous scans and tests, 18 months later I had my PBC diagnosis.

I honestly believe I could have had PBC for about 10 years before that though. I had never experienced joint pains before I had my last son (now 13) I have 3 altogether. He was born 6 weeks premature and spent the first 11 days in SCBU with very high haemoglobin count - he was like a lobster and jaundiced. They told me he may have arrived early because I was found to be positive for toxoplasmosis, how I do not know!! I thought you could only catch that from being in contact with cats etc. which I do not have. Anyway, 10 weeks after he was born I started having problems with my hands and feet. I couldn't pick him up I had to just scoop him up into my arms. I was dropping things, my fingers were painful and numb at the same time. My feet were so bad I felt I was walking on pebbles, had great difficulty walking down stairs and had to go down on my bottom. When I spoke to my GP he thought I could have been suffering from viral arthritus and referred me to a rheumatologist. The referral took 3 years being fobbed off all the time for not being as they claimed, an urgent case. When I finally got to see the rheumatologist my 15 minute consultation was a complete waste of time. He told me I was not showing any signs of arthritus and sent me on my way. When I asked him what was causing me the pain he said he did not know and suggested I should take paracetamol and try and loose some weight - I was 5ft 6in and 11 stone at the time so hardly obese. If he had seen me 3 years before when I was referred I was only 9 1/2 stone. I lost complete faith in the medical profession after that. From then on I self medicated pain relief until August 2009 when the joint and muscle pain I was experiencing became unbearable following the hysterectomy.

[littlemo in reply to mumofthree]

Hi momofthree, my goodness I thought I had it bad initially having suffered a full year with unbearable itch 24/7, really bad wrist and elbow pain and chronic fatigue before being diagnosedwith pbc but you had it much worse having to wiait 3yrs just to see a consultant its really unbelievable and in this day and age totally unacceptable. On that note I would advise anyone who is waiting to see a consultant specially if in lot of pain or discomfprt to ring the hospital where the consultant is basedask to speak to the consultants secretary and check with him/her firstly that the referral has been received from your gp and secondly ask how long the waiting list is to be seen by this consultant. Nowadays patients should not have to wait I would imagie andy longer than about 6months to see a consultant but this prob varies for different specialities and dependent on the population geographically. In the end up I went privately as I could bear the symptoms and the not knowing what was wrong with me was really dragging me down physically and mentally. Once I got started on the urso and questran and my body adjusted to all the meds I started to feel much better. That and taking time out of work I suppose as I was working in care of the elderly at the time doing long shifts, heavy and sometimes quite stressful work. We all have rights as patients and if you are not happy at any time with the care you are receiving you do have a right to complain I thind this is a major problem in this country i.e. uk people are afraid to complain but take it from me another lesson I have learnt both in my professional life and in my time as a patient if you dont complain then things do not change and standards of care do not improve and that is not good for anyone. Keep well momofthree

[AngelaGM in reply to mumofthree]

Hi mumofthree, I have the same problem with foot pain - well all over really - how do you cope, because i'm like you, no one seems to know anything.

[catherine69]

Hi there

I first went to my doctor with really bad muscle pain in arms and legs (2008) took loads of blood and discovered pbc, the doctor I got the results from told my to go home and forget all about it as it would not effect me untill 15-20 years time, due to the pain in my legs and arms and by this time I also had muscles jerks and tremors in my upper body I went back to the doctor,however I went to another doctor, she sent me to hospital were I got various tests for my muscles as well as a MRI scan which revealed the discs in my neck were bulging, this was so bad the fluid in my spinal colum had waves where the discs were bulging into them, had emergency Op to stop me being paralised, anyway all my energies were put into getting better from this and pbc was put to the back of my mind, I went back to my work and everything was ok until I experienced sexual harrassment from another member of staff. After enduring the stress of this for several months I ended up on the sick with stress, I believe this stress triggered off pbc symptoms, dont get me wrong Ive always had the tanned look but yes I do think the stress I endured while at work triggered my pbc symptoms.

[littlemo in reply to catherine69]

Hi catherine 69 thanks for reply. I definately do feel stress makes all conditions worse and for myself I try to keep my life as stress free as possible no easy task. I used to be the kind of person always first to jump in and help and care for people during hard times in their lives but often (specially if it was a close family member) ended up stressing myself out running around doing stuff for people and worrying about the and making myself ill. So I have learnt the hard way to start putting myself my needs and my own families needs first that way keep myself healthy and happy. Don't get me wrong I will still help people who need my help but ave learnt to delegate to other healthy family members and do things only if I am well enough and have the time and energy to. This little bit of advice I pass on to all people with any health prolems be they physical or mental. Keep well and stress free.

[Mythreesons]

My discovery of PBC was accidental. I went for routine blood work and a CA125 test to see if I inherited the gene for ovarian cancer, which my mom died from. The blood tests showed extremely elevated liver enzymes and from there on numerous tests including biopsy. When I look back I realize how fatigued I was becoming, restless legs and lots of bruising. I did not have any infections at the time of my diagnosis. I currently see my GP every 3months and get my blood drawn prior to each visit. Sometimes enzymes go up or alkaline phosphates go up and then 3 months later they go down. I take 1200mg daily of Ursodiol. I stress often with work but I make sure I always find time just for me. Rest is essential. I also walk, sometimes I ache, but I will walk. Exercise class is painful, so through experience and research walking is so good for you when you have PBC. I hope this helps even just a little.

[littlemo in reply to Mythreesons]

Hi Mythreesons thanks for reply. I had started going out for walks recently and have to say yes it did make me feel better and improved my mood and on one night noticed had less itch but think maybe this was a one off sadly. Then I took very sore legs on think was 4th day of walking and haven't done any since. I will get back to it though think just need to build up my muscles and stamina. The problem with this condition is that it is sometimes hard to motivate yourself when you have the chronic fatigue but I have read and have learnt that you can work through the fatigue which ironically helps but also you do need to listen to your body and pace yourself and do what you are able to. On a daily basis I am quite active anyway keeping up with my 5yr old son no easy task and on days when don't feel great specially after horrendous itchy nights( sadly most nights) feel so bad and guilty that I can't always be as active as he wants me to be. Fortunately on days when I can't get rest I delegate people to take him out for a few hours to park , out on his bike or to fun activity dens so that he doesn't miss out on fun and exercise. Once I have had a rest I then can take him out in the eening for we walk or for run around the park and this makes me so happy

[Lockness]

Hi littlemo, yes I did mean 14 months after after having flu virus. Everyones different, I'm 51 but have only really had problems with tiredness since having the flu.

[littlemo in reply to Lockness]

Thanks for clarifying that Lochness the fatigue can be hard to deal with too I find lying down for about an hour or so during day when you can helps as does a bit of exercise.

[wongie]

Hi, I had problems with my liver blood tests for years. Even before I had my gallbladder removed the gastro doc said my enzyme levels were extremely high and he was confirmed. I had my gall bladder removed, but then was reffered to a dermatologist because i was losing my hair and had marks on my neck and face. She said the reason for the hair loss was that something was going wrong internally and referred me to a gastro doc. It took 2 years for him to come up with a diagnosis of PBC/AIH. Just thought on the diseases or infections, after one of my blood tests done by my gp, she said that it showed that at sometime in my life I have had Glandular Fever. This may have been a trigger for me?

[Maggs3petts]

Jtxx, I had endometreosis too. From 15 until about 50 pain was dreadful every time. Then it eased and didn't have any pain whatsoever. From 50 to 54 it was easy peasy. I was being treated for Fibroymalgia, Raynauds, Scleroderma, Depression, Migraine, Insomnia, Sciatica, Sjogren's, Asthma, Arthritis, etc, when they discovered PBC also. My GP called me this morn to say that the blood tests they did on Monday are all very high except blood count which is 10.2 at the min - I take them with me to my Consultant on Monday afternoon. He was the one who found discovered one of my bile ducts was blocked. He initially thought it was a stone but now they think it could be a growth. If its a stone they can laser it but a growth they have to remove it and place stents in help drain the bile. I'm hoping for some answers on Monday. I don't care what they do as long as they sort it out. I have to sleep propped up in order to stop the bile coming back up. I have so many illnesses that I know its extremely hard for them to pinpoint exactly what causes what. The pain in muscles and all joints is severe too and now coupled with the pain and discomfort in stomach or 'upper abdomen' as they refer to it. I've been really ill for the past 8 yrs and I hate it - I'd give anything to fit and well again. As someone else mentioned though I believe that stress brought much of these illnesses on. In 18 months, my dad died, I was attacked, I left my job and my boyfriend dumped me. I'm convinced all that stress brought on all the illnesses which were lying dormant. Not sure how helpful this is to anyone but I do want to stress that I have the best GPs, Nurses, Scleroderma Nurse, CPNs, Social Workers, OTs, Consultants I could wish for me and they all look after me. Even the Medical Secretaries are marvelous - I really can't complain because I know they are all doing their best.

[horticouture]

Hi ladies, i am 36 years old and was diagnosed with PBC last year. I went to the doctors 3 years ago asking for help as i was constantly tired but not being able to sleep. I put this down to the stress of a divorce, maintaining a business and caring for my 2 sons. At first i was given anti depressents and sleeping tablets, whilst tests were being carried out on my liver, as i highlighted to my doctor that i was drinking a bottle of wine a night to help me relax and sleep. Therfore they wanted to see if i had caused any damage through drinking. I was monitored for the best part of 2 years due to my high blood pressure and fatigue and now have a consultant who monitors me every 6 months.

i now still suffer from tiredness, but work through it, i don't drink at all (have to say i don't feel any better for not drinking!!!) and still miss the social side of having a drink.

The medication i have been given often makes me feel bloated and often makes me feel worse, therefor have stopped taking it....of which i'm sure i will get a severe telling off from my consultant and you guys on here.

I have an itch occasionally and achey limbs now and then, but i live my life to the full and always keep a positive mindset and very rarely think about being a sufferer of PBC, hence i don't know what to expect in the next 2, 5, 10 years.

The worst thing i did when i was diagnosed was go on the internet and google symptoms such as spiders, mottled palms, fatigue etc all of which my consultant said i had and scared myself to death.

You may wonder why i am on here if i'm trying not to think about my illness? Answer because its National PBC day on the 9th September and felt like i needed to highlight it to non sufferers through the use of social media, and for me to best do that is to see what actual sufferers of this illness have to say for themselves.

The reason i've shared my story with you....Why not???!!!