Diagnosed yesterday with PBC

I went for a health check at doctors as my blood pressure was a little high. Following blood tests which showed extremely high ALP and GGT I was referred to a gastroenterologist. At present I have no symtoms apart from sometimes a slight ache on RUQ. I had an ultrasound and MRCP which showed nothing abnormal however blood tests have showed I have the AMA antibody therefore PCB has been diagnosed. I will be prescribed urso and the doctor wants me to have a biopsy to check staging. Unfortunately I have always suffered from health anxiety and feel that by having the biopsy it will make my anxiety worse if for example I was diagnosed with stage 4. My regular blood tests will show any worsening of my liver condition. Do you think that my decision is reasonable? I also have private health insurance my job and wonder if there would be any benefit in being referred to a hepatologist? Can I just say this forum has been very valuable to me, I suspected that I may have pbc and have read all th posts which have been most helpful.

17 Replies

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  • Hi, Sammie6.

    Do get in touch with the Foundation and we can take you through your questions one by one.

    Robert.

  • Thanks Robert will do.

  • Hello Sammie6.

    I somehow seem to think that you might be in the US? I only say this because in the UK as I am, it isn't usually the norm for someone to be diagnosed with PBC via bloods and AMA check to then have a biopsy. I was diagnosed with PBC in late 2010 due to going to see my GP in early 2010 with itching that persisted. At the time I was fatigued but ignored that due to work commitments. My LFTs were found to be high (I never had the GGT until I went to see the hospital consultant as it wasn't present on my blood print outs prior to this) and when I had the AMA test at the hospital later that year it was found positive with what was described 'a high titre' for diagnosis and I started taking urso Dec 2010. I was 46 at the time and I am now 50. I did have a scan mid-2010 but that appeared to look perfectly normal as did surrounding organs.

    I personally am not interested in a stage of PBC. I say this because for me it won't change how I am being treated currently. I would more than likely have undertaken one had the AMAs shown to be negative for me in 2010. I know at the same time as the AMA I had the ANA one too which was negative. I have also had some others but I can't recall what they were for or what the initial are for them now but they all showed to be nothing untoward. Apparently any doubts a biopsy can definitely show PBC. Some patients with PBC do show a negative AMA test.

    I am one who reckons in the time we are in now that the LFTs can show a pretty good picture as can an ultrasound. I saw a programme on tv 2mths before I got my diagnosis of PBC in 2010 and on it featured 2 men, one very overweight and as I reclal late 20s, the other man was around my age or a bit older and both ultrasounds they had live on air showed liver damage. The younger man had fatty liver, the older man was showing cirrhosis due to being what was described, an alcoholic.

    I think the concern for one with PBC and the mention of staging would be something to think about as you have stated here, you might worry and get more anxious about it all following biopsy and also I know for myself I really do not want to know as I sometimes think not knowing (in my case) can be better. At the end of the day it is your decision. If you do see a hepatologist as they are apparently the best to see then it would be worth your while having a good chat about it all and how you feel about biopsy.

    I have changed some of my life since 2010 and I intend to live it to my best. I am fortunate that I have a good husband for a second time (I was a widow prior to the year before the itching started and hadn't been remarried long before I was informed I had PBC) and he too feels cheated but we now get on as best as we can. I am doing fine almost 4yrs taking urso, my LFTs have greatly improved in this time and I am certain that I am far better now than I was at the start.

  • Hi Peridot, I have just started taking Urso so really appreciated your positive report.

  • You're welcome as I see it that we are in the same boat having PBC.

    We are all in differing stages with how long we have been taking urso and I find myself that I get that shove when I read on here that someone has been taking urso for much much longer than my almost 4yrs and that they are still doing pretty good.

    I know myself I was expecting to feel a lot different much sooner than I have but hey it seems urso gives us all differing results and I started out good at the beginning of 2011 with my first LFTs following 2mths on urso and I'm still gettting on with life and adapting to the little irritants PBC can cause (the itch).

  • Thanks Peridot for your kind reply. I am in London and attended West Middlesex hospital. I am married but rather unhappily and have three children 21, 18 and 17. I am just getting my head round the diagnosis. I do not think I will have the biopsy. Thanks again your reply is comforting.

  • Hello Sammie, welcome!

    I AM in the US and they consider biopsy the way to go on staging. That being said, I am an HA sufferer as well (not nearly as bad now that I actually have something, go figure) but I know where you are coming from. I found power in knowing where I stand. With us HA folks, its the what if that kills us. Coming from a fellow person with this issue, I felt better knowing.

    Now, you aren't me, so its up to you. Honestly, my doctor is more interested (now) in my albumin and bilirubin than he is anything, which, so far, are good. I know my stage, and it helped me, but it doesn't everyone.

  • Thanks for your welcome NotorDJP. At present my albumin and bilirubin are good , long may that continue for us hopefully. This is a very helpful site.

  • Hi honey I think I'm in your position too. I have ama with normal everything else. After big discussions I opted for no biopsy. They agreed in the end. I did have a few more symptoms but have controlled them with a couple of lifestyle changes. They're monitoring bloods 6 to 12 months and I take urso with no problems. I do have the itch and skin pigmentation in places but feeling a lot better with it all now. PBC foundation has been my lifeline & education & I'm in a far happier place now. I follow a low fat healthy diet & alcohol doesn't agree with me it causes the fatigue so I'm on the wagon by choice and feeling much better. My body will tell me if it's getting worse and when it does it should show in the bloods. So I've stopped worrying. Taking each day at a time. Hope you find a happy place soon. T.x

  • Run, don't walk to a Hepatologist. They are the only ones who cam properly diagnose you. I don't recommend urso before definite diagnosis. The only definite is biopsy which is not painful. I had it done by Hepatologist. Not Radiologist. I live in Miami and did at University of Miami which has a large liver department.

    You don't necessarily have to start urso right away. The biopsy will denote fibrosis, or duct issues. Don't worry. It's all ok. Just eat right and do what the Hepatologist says. Biopsy results are very important in staging you. I have early PBC. No hepatitis issues, clearly seen in biopsy.

    It's a wait and see. If you feel good and are not symtomatic, they will recommend yeaarly checkups and blood works. Hope this helps.

  • My doctor wanted a biopsy immediately so you know how to manage the syptoms. I had itching for a year and my hair was thinning, pain in my upper right side but none of the symptoms were constant. Finally I saw my GI and she insisted on a biopsy. I'm glad she did, I have stage 4. The good thing is I get ultrasounds 4 times a year and an MRI twice a year. This way if they see anything changing they can put you on a transplant list. If I never had the biopsy and it progressed to cancer it could be too late for the transplant. I also went to a very renowned hospital in the US called the University of PA. I saw a hepatologist that had more tests done and explained everything and what to expect. I don't want to think about where I'd be right now without knowing any of this.

    But I do understand your anxiety. The very thought of someone putting a needle into my liver almost stopped me but they give you some valium and and something to anesthesise(sp?) the area and it took about 10 minutes. A little discomfort for a day and that was it.

    My insurance also has a nurse call every month and let me know about good foods for the liver and natural remedies that help with the symptoms. It helps with the anxiety. Also tell your family and friends and give them the information out there so they can help you cope.

    It's a personal choice but sometimes with a diagnosis like this it pays to be proactive.

    I wish you all the luck !

    Calogia

  • Hi Sammie6

    I was diagnosed recently with pbc as well. It was from bloodwork abd showing elevated alt and ggt. I've had itching for over a year and my enzymes were elevated for over 5 years but my regular dr thought because I looked ok abd felt ok I was fine. I went to a hormonal dr and he ran bloodwork and told me I needed to c a liver specialist. After seeing the gastro he wanted me to have a special test which I did abd it showed I had AMA. So what he predicted before was I had pbc abd apparently the bloodwork confirmed it. I've had this going on for almost 6 years and have never had a biopsy I have no idea what stage I'm in abd the gastro doesn't seem concerned says my liver seems to be working fine. I'm currently on urso and have to have bloodwork done every 6 weeks. My next appt is October to c if the urso is working if my enzymes lower I will continue with it if not I will need a biopsy. Personally I'm curious where I stand but having a biopsy I'm told is not to be taken lightly. After the biopsy u need to stay at the hospital for several hours to be monitored. Anyways , good luck with your decision .

    This site was and is a very informative and I'm thankful I found it.

  • Thank you for replying it is very informative. I have to start taking the urso and go back in two months for appointment. The week before appointment I need to go and get bloods done. Meanwhile I will have to come to terms with diagnosis and make decision re biopsy.

  • I was diagnosed with Raynauds in 1985 and with fibromyalgia and scleroderma (on the same day in 2005). Diagnosed with PBC by my Rheumatologist in 2007. She was doing routine blood tests. She then referred me to a Gastroentrologist. In March of this year I was diagnosed with sjogren's syndrome. My Rheumatologist prescribed hydroxycholorquine. This seems to be helping with all five illnesses. I also have anaemia, asthma, arthritis, depression, hiatus hernia, insomnia, migraine, oesophagitis and sciatica. Takes a while to get used with it all for sure but you do. Somehow. All the best. :-)

  • Thanks maggs sorry to hear about your five illnesses. All the best to you too.

  • Hi Sammie6, It has been about a month since I have been diagnosed. I just started the Urso plus 10mg Prednisone....so far so good. I believe my problems started with Lyme disease which I contracted about 10 years ago and which immediately produced the tell tale red ring and arthritic symptoms that migrated from joint to joint but mainly settled in my knees which swelled and filled with fluids. The tick was tiny and was a deer tick... I live in the country. That has gone off now My blood tests showed elevate APH levels so I was first diagnosed with Autoimmune hepatitis. The arthritis was described as being Polymyalgia Rheumatica which of course tells you nothing ...it is merely descriptive. When I was diagnosed with the PCB by a Gastroenterologist it seemed to explain a lot but I am still in the dark about a lot. I wish people would occasionally spell out the initialized medical terms as I'm pretty sure I don't know what they are. I guess

    I'll find out! I've had ultrasounds of my liver and it is normal size but does show a fibrous condition. I have not had itching or other symptoms as yet and am hoping by taking the medication to avoid them. Since I am a novice I'd appreciate any info.

  • Thanks blah blah I am a novice too. I get my prescription for urso tomorrow so hopefully will have no bad side effects. It is all a bit confusing!!

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