PBC

Hi , I've just started ursodeoxycholic today . I am currently on 1x250mg a day for 4 weeks then it goes up to 2x 250mg etc etc . late October last year I went to gp with something that was not related to PBC , but found out through blood tests that something was wrong , I saw a consultant in the hepatology clinic where he summised that I had this condition , I had fibro scan and various other organs scanned where this was then diagnosed . At the moment I have no pain , all I have is intense itching on my neck (throat) and my midriff. I am devastated at having this as I always assumed that any problems like cirrhosis of the liver / and calcification was due to excess alcohol consumption . I don't drink at all !!! Can anyone tell me please is the outlook bleak ? Am I being over sensitive ? I'm just so confused . Thanks in advance

29 Replies

oldest β€’ newest
  • Hi, I was diagnosed last week and don't know much but this site is fabulous! Read all you can on here and ask questions!

    I look at the diagnoses this way....I'm going to die at some time, maybe earlier than I thought with this disease...but I can also be killed in any number of ways that I dont expect as well...so, I'm going to live my life without fear of this disease...I'm trying to get myself informed and want to keep up on the latest treatments and trials! I trust my doctors and am hopeful of new treatments!

  • Hi Tonia , what a positive outlook you have and good on you ! Just come as a shock and I'm just worried that I won't be able to tolerate the medicine and what would happen ? I'm sure there are alternatives . I agree it's very reassuring to have this site . I wish you all the best πŸ‘πŸ˜€

  • Becky, stay positive! One thing I learned when my husband was diagnosed with cancer in 1999.... don't worry till you have or they give you something to worry with....life is too short and you have. Million other things (and people)!whomneed younto stay focused!

    Something else I learned was that you just HAVE TO TRUST YOUR DOCTOR! If you don't then you need to find one that you do.

    One last thing is YOU ARE YOUR OWN HEALTH ADVOCATE,.. Don't wait for the next doctors appointment, pick up the phone and call if something is not right, ask questions when your at the doctor (keep a small notebook to jot down questions), research and keep yourself informed! I already have a published study to share with my doctor when I see her in a few weeks...with questions...lol

    I'm on URSO and have had a few problems but insignificant to the improvement in my pain level! I work as a pharmacy technician....I know many people who take meds for the side effects of meds they are on....it's just how things go...I'm just wanting to get this under control and take the stress OFF my liver and biliary tree...our bodies heal remarkedly and I'm slowing down & eating better also....

    πŸ˜€

  • Your quite an inspiration πŸ˜€thank you πŸ˜€

  • Your attitude is like mine. There are many things worse that I live with than PBC (Losing my 23 year old son) so things can definitely be worse. We don't get to pick and choose our trials in life but if we look to the Lord He will get us through.

    Sad part about the autoimmune disease PBC is that there is NOT a cure. It WILL progress, unfortunately, but the meds help slow that progression. As for me, I'm gonna deal with this as it comes at me and take it a symptom at a time and do the best I can with what I've been dealt.

    Best of luck to all!!!

  • Becky, it's OK to feel confused and overwhelmed....were in this together!

  • Yes we are .. your quite right , feel better now I know there is someone else going through it πŸ˜€πŸ‘

  • When you get it under control you will more than likely, like my doctor said, live a fairly "normal" life. Yes, it makes you mad that your body is betraying you, or that you have to make some changes now to possibly prepare for later, but like I've said, it's not the worst thing I am living with.... I'm gonna give that award, not to my disease, but to me losing my 23 year old son six years ago coming up on April 29th. THAT can be debilitating to live each day with so I treat PBC as a walk in the park. Talk about stress... but I go on about my business and work around the tiredness and do just fine. The grandkids wear me out but it's a labor of love. But that's MY story. I'm not gonna let it get the best of me till IT decides to turn on me!! Until then, I deal with what I consider minor things and take it day by day. Funny part of MY story... my sister 'was' an alcoholic and I don't drink and got the liver disease… Go figure

  • Cry it out if you have to. I'm still crying. Something so awful happened to me when I got my liver biopsy last week I will never forget. But you can have a good life. Women are having babies and families with this disease. They are planning with their doctor their treatments and they are safely getting pregnant and giving birth with the aproval of their doctor.

  • Hi Jennyhadenough

    I'm so sorry to hear you are having problems , thank you for your response , you too seem positive , I really wish you all the best πŸ˜€

  • hi beckyjane

    Welcome to this merry band. As I am sure you are already aware your dose of URSO will be increased until you arrive at the correct dose for your weight. A chart describes the correct dosage on the patient information leaflet. There are many who have had this disease for a long time, for myself I was diagnosed in 2006 but pretty sure I had symptoms which were misdiagnosed at least 10 years prior. The best piece of information I read at the beginning was that you are more likely to die with PBC than because of it. PBC is an oddity, for some us we remain symptom free and for others PBC can progress but fortunately there are medications to slow it down. Ursodeoxycholic Acid is the first line of defence but recently Intracept Pharmaceuticals had approval in quite a few countries for the new drug Ocaliva which is great for those who do not respond to the URSO.

    If you have not yet joined the PBC Foundation (free to subscribe) you can find the link through their logo above. In the members section there is a wealth of information and if you hit a brick wall then the Foundation is there for us - either by email or phone - and they have access to information from some of the top men/women in their field.

    If you are in America there is the PBCers.Org and in Canada there is the Canadian Society pbc-society.ca/

    try to steer clear of websites that may have old information which can be scary

    I am an itcher and at the moment I am trying to find a concoction to suit me, the first line here is colestyramine (Questran or Questran Light) but this can take about 8 weeks plus to get into the system. I use ice blocks for temporary relief and recently I was recommended a 2% menthol cream which seems to confuse the skin - again this is only temporary relief.

    As you will already have found this is a great place with super people who can share their personal experiences with PBC. The outlook for most of us is not bleak and new research is beginning to gather information to help us although this is a long process.

    try to relax, do nice things for yourself, a good walk for me clears the cobwebs and I have found that avoiding fatty foods has helped me although there is no real recommended diet for PBC sufferers the usual advice of a good varied healthy diet applies.

    best wishes

  • Thank you very much indeed for this info . This is a lovely and informative site , I do feel rest assured a bit more now ,

    I was totally unaware that I had this , as I said to another lady on here I was feeling a bit uncomfortable roundabout last sept / oct time but I put this down too a change of HRT , I have been on that for a while when they decided to discontinue it , so I was given a like for like in July last year . I was feeling pain in my lower abdomen and back and thought this is so strange as I thought it was reminiscent of menstrual pain etc , my mood would change etc , this I thought can't be right as I don't menstruate as I had a hysterectomy a long long time ago , so had an examination by gp who suggested I had a prolapse of the bladder , but in the meantime I was to have blood tests , the next day I had a call to say that bloods needed to be repeated as my results were abnormal and rather high . This was in the Nov of last year , so momentum began to pick up just after Christmas and finally had a "concrete" diagnoses yesterday and started the meds , yes your right I have to increase the dose every four weeks . The consultant says I have had this condition for a long time , if I have I have never known it ,thank you so much for your time to write and respond to my last post it's very much appreciated πŸ˜€ wishing you all the best 😊

  • Just want to say my specialist said these days we live with the condition and not die of it. Apparently the oldest woman that died with PBC was 103 and it wasn't the PBC that got her. At 54 I'm only half the way though my life yippee πŸŽ‰

  • πŸ˜€πŸ‘ I'm 50 !!! All the very best πŸ˜€

  • I have been diagnosed two weeks ago, I started my journey in September with an abnormal result for my liver. I saw a Dr at the hospital who had to be pushed too tell me what it was, told me the Urso would stop the itch and I feel that never helped. I am on Urso and mine is being upped today, also on Questran since last Sunday and that has been tricky, but I am getting used to it.

    I went from no tablets unless I felt I was really ill, to 9 prescribed at first, huge conflict for me as I like to find causes not treat symptoms. Being honest I felt I had lost control of my body and health, that takes some adjustment in my thoughts.

    I am not taking all of them as one set of 4 tabs may not be right. I wanted to get the Urso and calcium into my system. The Urso has been good with no side effects if its any help.

    It sounds as if you saw somebody thorough as I have not had all the correct tests, but my GP has been amazing and referred me, the jury is out on my having a secondary or indeed another condition similar to this. Just had news that I am seeing a good liver specialist so feeling happier with that.

    I felt positive and upbeat after reading here and then which is perfectly normal too, the bottom fell out of my world for a few days, I am still feeling weepy as the itching and fatigue have been high. My husband, children are worrying and friends too, it's hard seeing that, trying to explain a condition I knew little about makes it confusing.

    I trained as a counsellor and am also trained in bereavement counselling. So I recognise the stages of any loss in our lives, not just a loved one. I will allow myself to go through the feelings of loss, shock, anger, etc and come to resolution and peace I am certain.

    I was tested for cirrhosis in the beginning of my journey and it's daft but that was the one thing I prayed it would not be because of the stigma attached, although totally unfair for those suffering.

    Huge hugs BeckyJane, the people on here have been fab. So many people have comforted me and have empathy as they are going through it too.

    Also I rang the PBC foundation, they are great, lots of help, I felt more empowered after talking to Robert and able to talk to my GP, the leaflets to give out to any health professionals are handy and a full explanation of the condition on a leaflet for me and family. Just seeing all the magazine articles on there have made me feel not alone, that others are living life and smiling.

    Massive hugs.

    Jo

    xx

  • Hi jo,

    Thank you for sharing your experience , we all have our own experiences which are very similar to each other , it seems you were going through it at the same time as me , I felt the waiting in between appointments to yesterday's confirmation was a real waiting game , I and my family had such a miserable Christmas as I didn't feel like celebrating it , but I did I just went through the motions , I have a loving positive family who I think are dealing with the situation to an extent where things have no need to change , but to carry on as normal , where as me I'm very factual , and I deal with the facts .

    I know u have to learn to live with the disease , and there are far more worse situations with other people out there dealing with life etc but as an individual I will just adapt and follow consultants advice . I was lucky in one respect as my gp was really on the ball from the onset , in February this consultant who saw me was only going by blood test results and warned me he thought it was PBC but a fibro scan and a scan of the liver , pancreas , gall bladder and upper abdomen would confirm this , well I had the fibro scan early March , and the other scans yesterday followed by seeing him an hour later where he confirmed PBC and prescribed me urso and that he will see me in 6 months . I also have calcification on the right side of my liver , I would just like to know when this all began as probably you do to . I am suffering terribly with heart burn which I thought was due to stress I guess it could go hand in hand with this condition .

    I truly hope you get relief very soon and are able to lead a happy fulfilled life with your family , it's so lovely speaking to someone else who knows how we are feeling .

    Sending my best to you jo and thank you xx

  • Sounds similar to me Becky, over Christmas exactly the same, it's such a slow process, meanwhile in January my BP was discovered to be critically high, I always suffered from low before. I thought that was stress, certainly not diet. Not sure why that appeared, it seemed so big at the time and now I hardly think about it as it seems miniscule in comparison.

    I too have to know facts and it drives everybody mad, but if I had not questioned the meds I could be having some rotten side effects.

    My GP is amazing and referred me after he exhausted most tests, hospital appt was with a liver guy, but he had left and I got a locum gastro guy. Lovely but not clued up on PBC, still called it by the old name, guaranteed I would be itch free the next morning.

    He did not arrange a fibroscan, my lovely GP did it yesterday and a Dexascan to see how my bones are.

    I thought most of my symptoms were due to stress of waiting, not knowing. The fatigue I put down to full time caring, now in some way, I feel happier as there is something wrong, I am not just a bit lazy hehe!!

    Do you know what the calcification means, I really hope it's can be slowed or fixed?

    I think the first few weeks/months are hard maybe as we are trying to learn about a condition and learning new terms.

    Took me a week to say PBC and not PCB haha!

  • Yes it does sound similar jo . It is a slow process and you are lucky that you have a good gp , as I said I thought I had a gynae problem as I do have bad history where that's concerned, hence why I am on HRT , so that's what I questioned firstly was this a product of medications? As I am also on cocodamol and that has a history of not good on the liver but I was assured no it isn't . I'm not a drinker either so I'm kind of scratching my head (and every where else!!) come to think of it as to why I have it . I am a bit of a impatient person when it comes to issues where health is concerned as to why and when and what's the outlook which I don't think really helps as you go drive yourself crackers over it , I'm just trying to work out when it's best to take meds in between my other meds . At the moment I'm taking 1x 250 mg of urso which is to increase in 4 weeks to 2 x 250 mg and increase again 4 weeks later until I am taking it 4 x a day , but my morning regime of meds is 2x cocodamol and 1x 2mg progynova (hrt) so I had left the urso till about 10 am this morning as that's when I had something to eat , I'm just cautious of leaving enough time and spaces between doses .

    I too put the tiredness down to caring for my mum whose 83 and is in remission from head and neck cancer , I think calcification means hardened .. the consultant showed me on screen my results and there was 4 bars that had colour segments in it I suppose a bit like a traffic light system but with more colours and the first section was a blue which was normal the second section was yellow the third section was orange and the fourth was red . I fell into half way through the yellow section under chronic .. but he assured me that the urso should slow the process down , so I have to put my faith in him and myself to get things under control .

    As for you getting used to PBC and not PCB lol I know exactly what you mean .. I mean my mum kept telling other family members I have PCP lol which I think is a abbreviated name for some addictive drug lol .. bless you I really hope you get sorted , it's a good job we can laugh xxx

  • Mine was Gynae too, I was losing so much blood the blood tests were to check anaemia and the full blood count. I was just considering HRT. I had a coild fitted to stop the bleed and that helps while I get to grips with this, do not want it full term as the high Progesterone while stopping the bleeding, will up the menopause symptoms.

    How is HRT, I may need a gynae consult as with this it needs to be a specialist I presume.

    I am 51

    The Urso and Questran is tricky as Qustran would leech/destroy any medication effect.

    I am going all out and taking full Urso for my weight from tomorrow. So double the dose and I am taking it twice a day as meals were getting later as I tried to get them all in line.

    Both caring too. My Granny is 97, has dementia and I swear she is going to outlive us all. My Mum died and was the epitome of health and good diet and then got cancer and was gone quite quickly.

    I like the PCP one. Is that the one where people go rampaging and cannot be destroyed.

    haha.

  • Amazing how we seem to have similar problems . I had hysterectomy a few years ago now due to heavy bleeding and polycystic ovaries , they left one ovary so that I had hormones still but eventually I had trouble with it and I was diagnosed with ovarian cancer 😐 and was down for surgery . When they operated on me what I was told to only take 45 mins but instead it took 5 hours and complications to boot . I was not cancer they found it was a Sudo tumour where when they removed it , it kept on filling up and they found several other tumours as well , but ,,,,, whilst they were removing it they severed my bladder and I had to have a stent in place for three weeks . So after all that palarva and a few months passed I was put on hrt which was fine , although I was still having hot flushes I was coping . After a check up at the gynae clinic the advice I had was to stop the hrt as I was fine I had my weight at a good stage things were ok ... until three months later and I became so depressed and withdrawn my marriage was suffering I was just a wreck . My gp said I needed the estrogen as I had none and it was a chemical brain embalance so I was put back on it . Jumping a few years to the present late last year my normal hrt had been discontinued but was given another type which was like for like ,, it was a couple of months after that , that I began to feel unwell .

    I would say if you need hrt then in all honesty I would use it . We all react differently to drugs and it did improve me . I hope your dosage with urso is going to be ok for you I know it's trial and error getting the right balance can be daunting .

    I feel for you with your granny as caring is challenging for the healthiest of people but the dementia doesn't help it just magnifies the situation .

    Hahahah I believe pcp is known as angel dust but that's only what I have heard .. bless em !!! Xxx

  • Gosh you have been through the mill and back again.

    I turned down a hysterectomy, as I have had two ectopic pregnancies and a salpingostomy and could not take another big abdo op. I am aware it can be done vaginally but I also have no real respite for Granny, hubby already takes most days off for her to help.

    So the coil has stopped the bleed.

    My hot flushes have settled to a couple a day rather than several an hour and with all this liver bother, I want to concentrate on one body part at a time!!

    Thanks for the HRT info, when I get this all sorted I may do that as it will help with the bones as well.

  • We all are in the same boat here. I see it like any other chronic diseases like Asthma and diabetes.

  • Hi beckyjane, and others,

    I was diagnosed with PBC 28 years ago, so there is life after diagnosis ;-). We pretty much all join the 'roller coaster' of emotions when first diagnosed but it will eventually stop (or at least slow down somewhat).

    For those of you who have just begun your PBC journey I would advise you to always get copies of your pathology reports, and learn to understand what they mean - doctors can sometimes miss things:

    mayoclinic.org/tests-proced...

    I am also posting a link to the 'pbcers.org's stages of PBC' page:

    pbcers.org/about-pbc/stages/

  • Thank you dianne πŸ˜€ 28 years is a long time . Glad to hear your still positive xx

  • Thanks Dianne for chiming in! It's folks like you that give me the most hope...πŸ˜€

  • Lots of positive comments

    I just wanted to add, I was diagnosed a year ago in May. I felt about as low as I could imagine when I found out and felt like I had been handed a death sentence. My son was just 1 and thought I would miss so many things. A year on I don't feel like that anymore.

    I'm on Urso, responding well and my bloods are back in normal range.

    It's also made me value life a lot more and make each day count.

    You never know what life may bring, for us is brought this bizarre disease but that doesn't mean it's the end. Lots of research going on, and launch of this new drug is really hopeful too.

    Good luck to you if you ever need a catch I'm here!

  • Hi chazzy

    Think I'm feeling the same in the beginning of your post , suddenly pounced on me late yesterday afternoon ,

    Compared with most people on this site I consider myself to be on quite a low dose of urso , this is my fourth day on it and it will increase in a months time and then again and again until I'm on 1000mg . Your right in feeling like you was given a death sentence , I hope this feeling soon goes away . Because this disease has no visible signs it's hard for people to understand what and why you feel like this . I find your experience very encouraging and I hope it continues to be .. all the best xx

  • I honestly couldn't hold it together at all for first few weeks everything made me cry but time really does help. I think urso is a wonder drug or has been for me. For every time I hate swollowing them I think about the little miracles they are working in my liver. Hang in there xx

  • You too xx and thank you 😊

You may also like...