Hi Iv just been diagnosed but not 100% clear how serious this illness is.

[Universal44]

[Magnolia]

I've had this disease 20 or more yrs. The only symptom I had off and on through those yrs, was fatigue. About 2 yrs ago I began itching, but now it's quit for the time being. My dr does an ultrasound or MRI each year, and my liver is not enlarged or scared as of yet. I can't eat red meat, but can poultry and fish. I believe the ursodiol slows down the progression of the disease.

Magnolia

[Boysanboys59]

Hi,sad for you,the shock takes a while to set in an believe.i was diagnosed 3months ago ,I'm 54an feel life's a mess,i also suffer from raynards deasese an intestinal problem and chronic ostio,now pbc on top so i wasn't to chuffed.i had high antimichcondrial antibody as well.took them 3years to find the problem.finely after a liver biopsy...no like..I'm itchy an have spells when I'm so tired i cant stay awake and stomach pain most of the time.i forget things and i find i cant see as good now.my bones and mussels ache continuously,does this happen to you,and do you also feel nobody quite understands ,I've been given urso 150 but have reactions to most meds so Havant started them yet.has anybody had bad reactions to them,good to find a website ,with people same as you.maybe sharing the experience will help.

[Universal44 in reply to Boysanboys59]

Hi,I can relate to everything you are saying.Not slept all night for the itching,it's driving me mad,even after taking the medication.I feel like a dark cloud has descended over me between the aching muscles,itching,fatigue and tummy pains & Iv to to get up and go to work now,all pretty hard to handle.Feel pretty low lately finding this all pretty scary and yes Iv tried the positive mental attitude thing :((

[Jaycee in reply to Boysanboys59]

Hi, Yes, I have had a really bad reaction to the urso, my consultant dosn't believe me, but I don't take them as they make me so ill, my LFT's for the last year have been fine, I asked him to explain that but he couldn't, so, I'm not going to be taking them, as you havn't tried them yet, all you can do is see how you get on, good luck and stay well.

[Universal44 in reply to Jaycee]

Yip I'm on them 250mg twice a day,I feel as I explained weird,forgetful,low,dragging my heels and tummy upset all the time,not sure If its illness or meds.Doctor wants to see me Thurs as they sent me for bone scan and results are in so will ask hundreds more questions...good luck to you to & thanks it's good tobchatbto other sufferers

[Boysanboys59 in reply to Universal44]

Hi again thanks for answering ,u sound just like me.and i haven't started the urso yet,phew.I've had the bone scan don't get results till my next consult.,good luck for thursday,ill pick a day and start the meds , yeah yeah ,just hope i don't feel worse.b4i scratch myself to bits.write your questions down like i do as i always forget to ask some,

[Hidden in reply to Universal44]

Don't know what area you are in Universal44 but here in Lancashire, they seem to stick to the norm from what I have found out regards bone scans. I've not been asked to have one (yet). I expect varies from region to region but also it also might be due to certain other things and also the blood readings. I know I have one abnormal on the bone bloods but it's of no concern.

I had Vit D test during 2010 and that came back on the line between normal and not. It was mentioned but the consultant never suggested any supplements, etc. He just said 'to utilise the sun' when he asked if I sunbathed or spent time abroad for hols., etc. (No to either.)

I did utilise the sun and have done ever since as even in winter you can absorb the rays and manufacture your own Vit D, the best way to have the vitamin. I have tested normal since so perhaps Vit D has some bearing on bone scans or maybe it is because you are as you state 50 now and I'm not quite there yet.

A tip as you can forget, jot down short questions that you can think of prior to seeing a doctor as it will help you ask what you consider important. I know I did and do, I actually think I do the doctor's head in at times to be honest! Not that it seems to get me very far mind. Sometimes think that I might be better not going in all pleasant and polite as I am altho' deep down I know that almost all the doctors I have seen since 2010 just do not seem to like someone taking an interest in their own health and the doctor thinks he/she knows best. From past experience I know they do not.

[Jaycee in reply to Universal44]

Yep, that's exactly how I felt on them, horrendous diarohea,stomach cramps, fuzzy brain,actually, I felt brain dead, I had to do something, so I stopped them, Doc agreed with me, consultant a different matter, but I couldn't go on like that, but glad to say all tests are still fine, if they change I may think again but untill then I'm staying off them, but that's a personal decision and not for everyone, I also have osteo and underactive thyroid, if you have one autoimmune you usually have three, LOL ,

[Hidden]

Hello. I was diagnosed with PBC back in 2010 when I was 46. Started on urso Dec 2010.

I started to itch 9 months previously and had blood test after blood test over the months, an ultrasound scan and then I went to the hospital and saw a consultant who did the AMA/ANA blood test. The AMA was postiive, ANA negative. With fatigue at the time (I no longer seem to suffer) and itching (still have at night) and the abnormal LFTs I was diagnosed.

Now I have found it can be a bit of grey area here with PBC. At present like majority of PBC sufferers with just a few symptons plus aches and pains as a lot say they also have (that can be down to the fact certain vitamins and mineral can be less efficiently absorbed in PBC so thus in turn it can have a knock-on effect with the bones) on the whole myself as a lot of others will tell you, we look normal and pretty much healthy BUT PBC can become a serious condition over time but apparently a lot of people with PBC actually die with something else other than PBC eventually.

Myself if I had never developed the itch I'd have just continued to plod on despite feeling tired at times and when working full-time at average of 9hr work days with no lunch break as such (food on the go) back in 2010 felt so fatigued evening meal went out the window as I couldn't remain awake when I got home, I'd not have actually visited the doctor so I might never have known.

There's just no way really at a certain point how PBC will develop. With urso my LFTs have started to decrease over time and I do feel pretty much more like I did several yrs ago, get up and go kicked back in (with some lifestyle changes must admit, the full-time job got knocked on the head though it wasn't my idea it was my husband's that I should quit as it was doing no good and I didn't need full-time work - that way we can spend more free time together). I still itch but I don't think I can do much about that tho' it's not for lack of trying to figure that one out.

I have found that it is the medical profession who has aggrieved me more over the last few years as opposed to the PBC itself. I ended up switching GP practices earlier this year as I was getting absolutely nowhere with the previous surgery. The GP I was unfortunate to be placed under just after diagnose he seemed happy during last year to just write a script out for me when I did an online request and when I went in for the bloods he didn't seem to bother to follow up, left a message or someone at the surgery would make a telephone appt for me as he wanted to speak to me.

I think it does pay once you know you have PBC to try to look after yourself much much better tho' you might htink you did previously as I did. I don't eat much in the way of red meat at all, have preferred not to eat it for a long time if possible (I loathe handling it raw) but the GPs droned on and on about iron and I did and still do have a one number below the normal range (but it was considered perfectly ok by this new GP earlier this yr., she went thru the bloods). (My way round the iron is that I bought a small cast iron frypan last yr., very cheap it was and I rub round the base with a very tiny amount of butter and then usually cook tomatoes until they start to mush to have with certain meals. I have read acid content in tomatoes will absorb iron from the pan.)

I try to make a glass of fresh fruit/veg juice daily with my lunch as think that helps boost energy levels midday. Basically I just try to cut out all food additives if possible. Not all are bad but I strictly avoid the MSG for one and I do not drink the fizzy 'pop' or 'soda' as it is referred to in the States. I also cut even further down the amount of fat I have as cholesterol can apparently become a problem and moreso as we age if we haven't PBC.

Hope some of this helps. You didn't state how old you were but take it from me and probably plenty of others, it takes a bit of sinking in at the start, you do get annoyed at times "Why me?" and also if you have a family who do not really understand like most of my family members don't, can be a bit difficult. I am only reminded now I have PBC when I start to itch at night and grab a pill but never being much of a pill-taker prior to diagnose I do find over time I've swallowed it with breakfast or evening meal and then often wonder if I took it!

[Universal44 in reply to Hidden]

Hi Peridot

Thanks for your response :)..I am 50 years old and have been in and out of hospital over the last 4 years,one time I was in ITC they just didnt have an explanation as to why the liver count was so bad.I just got up and on with it suffering periodically when thing s got bad,I suffered in silence until one day my brother in law put his foot down and demanded I get back to docs and they find out what the hell was going on as I felt so ill and so low as I couldn't seem to fight things anymore.Anyway was diagnosed with PBC and the menopause so double whammy,explaining the fatigue and horrendous itching to the point I would bleed :(((..When I was told at hospital I had this I asked simply question "is this serious" but was told to just o and arm myself with as much information on the Internet as possible but I find it very daunting....some folk seem fine,others don't so I'm very confused...At the moment I feel like a 80 yr old in a 50 yr old body,I come in from work at 6,feed kids and head to bed my body aches,my job is very physical.My kids are pretty frustrated asking why I'm always sleeping and I'm not sure wether I should be involving them or just dealing with it myself.My social life has went to pot,I can't muster up energy for a shower some days never mind go out and have fun...Im trying to stay positive and focused as that's in my nature but to be honest I'm pretty scared this is how I'm going to feel for the next however long years....

sorry for the rant and thanks if you have managed to read this far without thinking I'm feeling sorry for myself.

X

[Hidden in reply to Universal44]

Hello, please check your messages, sent you one.

[Disy in reply to Universal44]

Hi Universal 44

I think we are all a bit daunted by it all and it is frightening. I had never heard of this before. I have only just been diagnosed and trying to take in as much info as possible and thank god for this site. I read other people's stories and think wow I have that and that.. and had it for years. No wonder I wasn't feeling the best. I have read lots of vitamins and fruit and veg because with this condition our body doesn't absorb much of the goodness we need especially vitamin D. I feel with me that I have had a bit of depression but that could be the lack of vitamin D too .Try to Stay as positive as you can. We are all here to help each other.

keep smiling. :).

[Val02]

Hi - the seriousness of PBC varies quite a lot. Some people have few symptoms and some gather many. I unfortunately am a "collector". How much it impacts on you will depend on a few factors: how well you respond to URSO, your age, at what stage you are diagnosed, and how many other autoimmune conditions you get.

Some people go on to need liver transplant but most don't.... so I guess it depends on the individual.

Take care

[enalynot]

I'm 64 and diagnosed last January I very rarely have any symptoms the odd itch bit of fatigue. Mostly my get up and go has gone and takes a while to get to sleep or I wake around 4am and can't get back to sleep. At first it was frightening reading things on-line and it appears only me notices family think I'm fine.

[GrittyReads]

Hi Universal 44,

So sorry to hear of your diagnosis. Sadly it does still seem that many Medics don't know enough about PBC, or are not up to date on new thinking, or the precise tests and criteria for diagnosis. I would read as much as you can on the internet - serious articles. Also: get in touch with the 'PBC Foundation' as they can talk to you, give advice, and provide you with sources of info that will help you to ask the necessary questions and even enable you to educate those medics who are behind the times.

[Universal44 in reply to GrittyReads]

Thanks Gritty

I'm reading to much into it Iv been told,apparently I'm getting myself more anxious.I ordered a book today,only one I could find so hopefully I will educate myself more....Have to say that Iv felt more positive since joining this forum,it's fab to hear other folks responses and I appreciate you all taking the time.Im definitely more positive :))

[mumofthree in reply to Universal44]

Hi Universall44, I was diagnosed with PBC Feb2011. The diagnosis came out of the blue and was as a big shock.

I was referred to a gastro consultant via rheumatology as a result of blood tests rheumo had requested querying rheumatoid arthritis.

The gastro consultant had been sent the blood results and I was referred on to them without my knowledge until I received an appointment for the gastro clinic. I went along to the appointment believing there had been some big mistake..... I had joint, bone and muscle pains, I did not have problems with my stomach!!!!

The gastro registrar told me the blood results suggested I had PBC. When I asked what it was. he told me I had Primary Biliary Cirrhosis which was an incurable autoimmune condition of the liver, he told me I needed a liver biopsy to confirm PBC and extent of damage, a CT scan, MRI scan and some further blood tests. I asked what did it mean for me and he said I could have 3 years to live........!!!! He gave me a GP's PBC information leaflet as he did not have a Patients leaflet, and told me to check it upon the internet. I was absolutely devastated....all I could think of was that I would not see my children grow up.

The next 6 weeks went by in a blur until I returned to see the gastro consultant for the results of all the tests. This time I took my sister with me for moral support as I was in such a state, I was petrified, I could not think straight let alone speak.

What a difference......... My sister explained to the consultant what I had been told by the registrar. The consultant was absolutely wonderful and took his time explaining everything to me and put my mind at ease.....He said the biopsy confirmed I had PBC, and some signs of a fatty liver but that I did not have cirrhosis. He explained that PBC is an autoimmune condition affecting the bile ducts of the liver to which at the moment there was no known cause or cure for, but he would give me medication (URSO) which would help slow down the progression of the disease. He stated that the disease may never develop into cirrhosis but if it did there was always the possibility of a transplant. He also said that with just a few little life style changes there was no reason why I should not go on to lead as long and normal a life as anyone else.

I looked PBC up on the WEB as suggested by the gastro registrar, that was the worst thing I did because what I found frightened me to death. The WEB is a wonderful thing but can also be quite dangerous because a lot of the information out there is out of date. So one thing I will say is stick to the more reputable sites like the PBC Foundation where the information is kept up to date. You can contact the PBC Foundation by email or by phone and they will send you a really useful folder of information for free.

This forum is also wonderful because you don't feel that you are alone coping with this disease.