just got email saying I have PBC, scared and confused

I just joined this group and i am so glad to find a forum where I can ask questions and share. But I am so sad, scared and confused. (first of all I think the doctor should tell me in person or on the phone, not the nurse in an email sent just as the office closes so now I get to spend the whole night worrying about this).

Let me explain. I was told I probably have autoimmune hepatitis due to lupus. Blood tests showed elevated liver enzymes, ANA and ASMA, all markers for AIH. (no sign of AMA). Had a liver biopsy and now I am told it's PBC which no one mentioned before. So of course I Google it and now I am really confused. AIH or PBC or both?

I have had SLE/lupus nephritis for 41 years, since the age of 13 (okay that means I am 54 for you math geniuses)! After an initial few years of seroius illness taking steroids and Imuran I was able to remain in remission for many years. I spent my whole life trying not to be defined by this illness. Studied Chinese, lived in China, traveled, got 2 MA degrees, etc. But 12 years ago I had to retire on disability (that is what we call medically retire here in the US) Since the initial lupus diagnosis, I have also been diagnosed with fibromyalgia, Reynauds, also misdiagnosed with Parkinson's, (lupus or a stroke caused some inflammation in brain, causing Parkinson like symptoms and other neurological problems, which are thankfully almost all gone. But that is why I had to stop working.) So many things to deal with. I have always hoped to keep one major organ free of lupus but now with liver disease I don't have any left unscathed :( . Thank you for letting me share.

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  • Sounds like you have always had a really tough time. PBC is manageable and the worse part I find is that it can get you down at times because you still want to do so much but the tiredness makes it difficult to succeed!! Also noone seems to know much about it and there are all these different problems associated with it so can be quite confusing. Get on the Urso - which definitely helps. At least its progress is quite slow so could have many many years left before getting to a stage where you might need transplant - and may never reach that stage anyway. Keep being positive and take care. This is a great site for sharing and also contact the PBC Foundation here in the UK - they are amazingly helpful. xx

  • Hello Maddieroo.

    Welcome to the forum even tho' in a perfect world it wouldn't exist......

    ......but I think you might find that Jtxx (apologies in advance if it isn't Jtxx) has AIH and PBC.

    I agree I don't deem it right you get a diagnose from a nurse via email. I didn't really fair overly-better myself with diagnose I thought (Dec 2010) but as far as I know in England where I am, we don't do this via our NHS (well yet anyway).

    I had the AMA (which I also at same time as only realised recently, the ANA too (that was normal)) done at the hospital Oct 2010 and before I left the doctor's office to have the nurse draw blood, he specifically told me HE would see me when the results came back. I now realise he must have meant had they come back negative.

    He wrote to the GP who got the letter a wk prior to someone calling me from the surgery to go in and see GP regards picking up medication. The receptionist who rang didn't see it as important to me and booked the appt for almost a wk later. Had I not have asked what meds I was being given (urso) I'd not have known I had PBC before seeing the GP. My husband stepped in and explained how we had waited 2mths for these results, results that we could probably have got a lot sooner. Taking urso when I started might not have made a whole lot of difference given it is PBC but it was to me at the time.

    I made a decision some time ago now (I started with the itch 2yrs ago now and at present feel a whole heap better than I did then), I'd just try get on with life. I just try not think about what could happen in the future and of the way of thinking, I'll get to whatever if it does happen, no use wasting time at present worrying about it despite it all.

    You sound like you've had a lot to deal with over the yrs but it seems that you have come this far if you have had SLE/lupus for 41yrs. I've still not really accepted I have PBC, don't think I ever shall somehow but I can still remember the initial shock of being verbally told even tho' I had done a bit of research myself prior to diagnose and somehow was expecting the PBC diagnose when it got to an AMA test.

    All the best.

  • I too have still not accepted that I have or could have this as the AMA results were so inconclusive in the fact that they amount they were out was so very little. When I asked to consultant how far out they were he said that if there was a red light and a green light mine was flickering. So I live in the hope that it flickers a little more into the red which would mean I don't have it. I feel fine in myself but still worry.

  • Thank you all for your comments. It really helps to feel like I belong to a community. HAving had a serious chronic illness for 40 plus years I know that a positive attitude, knowledge about the condition, a good support system, (I have amazing parents, siblings and friends) and a sense of humor are very important. I am having a temporary meltdown. I was just starting to accept that I might have AIH (in addition to the multitude of other htings) when all of a sudden I get an email saying I have PBC, which I have never heard of nor did the doctor ever mention. It is unusual for a nurse or doc for that matter here as well to give a diagnosis via email. (Actually this nurse seems to a bit of a space cadet). I think I am still in shock, but of course I will recover. One good thing about having a chronic illness for so long is that I appreciate so much in my life and I try not to dwell on negative things, only dwell on the positive.

    Ruth

  • Hi Ruth

    Where in the US are you? I am in Baltimore, MD. I understand your feelings about the email. I received a letter telling me I had PBC and to come back in 4 months for more test. I did same as you - Googled it. That was Jan. 19, 2011 and I still have not gotten over the dr sending a letter to tell me. Needless to say I have switched doctors. New one not much better. What I have found is that doctors don't know much if anything at all. The only good thing about knowing I have PBC is that symptoms I have had for 20 years are now explained. I have spent the last 15 months searching the internet for answers.

    I found this site about a month ago and it has been so comforting and informative. As this is a rare disease I think the people with it are more knowledgeable and defintely more supportive.

    Did dr tell you what stage liver biopsy showed?

  • Hi, I live in Northern Virginia near DC, and I used to live in Baltimore, Charles Village. I am still shocked that I learned this via email. I really like this doctor and he explains things well (of course I actually have to talk to him in person.) Since I already have lupus and other stuff for my whole life I can tell you from experience that being able to talk to your doctor is very important. Not just that he or she tells you what you need to know but that they listen and really hear you. I also know it is tiring and frustrating to switch doctors. So maybe you can find someone who knows a liver specialist in the area who is good. I used to work for Hopkins and they have great clinicians but they tend to be test happy and pushy about joining clinical trials (I once gave 14 tubes of blood at once because my lupus specialist at the time was too eager in the testing department.) If you don;t mind driving an hour I can recommend my doc but I am sure there is one closer to you, between Hopkins and UM. Good luck, Ruth

  • The problem I am having with the doctors is their bedside manner. As you said the most important thing is that they really hear you. I have a wonderful primary care doc but he doesn't know much about PBC. I was seeing the medical director for The Institute for Digestive Health & Liver Diseases at Mercy Hospital. He was at Hopkings before. He is knowledgeable but does not hear what you are saying.

    So for now I have ditched the specialist. Dec. 2011 had liver biopsy that showed stage 2-3. All they can do is treat complictions and my pcp can do that for now.

  • Peridot is right is saying my niece JTxx has both..She will be more than happy to discuss with you...I have PBC and Lichen Planus...but what a way to find out...so insensitive.....You will most probably have to take URSO.....Keep your chin up and just look forward to every day as it comesx

  • Thanks annscott, I will contact JTxx when I get a final diagnosis, but I did get another email which had test results (the actual report from the hospital on the biopsy) and I definitely have PBC and they mentioned hepatitis (which must be autoimmune because hepatitis A, B and C were negative). In the report (which i don't think this space cadet nurse was supposed to send me) it says diagnosis of PBC even though there was no AMA in test results. So, I have many questions for the doctor.

  • I know what you mean about most specialists. I think as long as you are monitored and the specialist is up to date on what ishappening a pcp is better for coordinating your care. Actually my problem (well one of them) is that since everyone is on a different system they don't seem to communicate with each other at all, even when i beg them to! And my pcp is, as an individual, a great doctor but she doesn't get any information from the other doctors unless I make sure. So basically Ihave a part-time job coordinating my medical care. and sometimes I take a break because it is just too much. I mean how many ologists does one need? Ruth

  • Lack of coordinating care is a huge problem for me as well. I keep a medical binder with every test result and hospital notes. I think this is what the problem with the liver specialists was. I would sent him the results from other specialist and he would not review them. He would then suggest treatment or additional test and when I pointed out that they had been done already and I sent him copies of the results, which made him look like a jerk, he would have an attude with me.

    I agree it can be too much at times. However it has saved me from unnecessary test.

  • Welcome Maddieroo,

    Firstly that is absolutely shocking that you received an email with this diagnosis with no-one to turn to. So glad you found our wee community.

    Peridot and my aunt are completely correct on both counts. I was diagnosed with AIH/PBC overlap syndrome in 2011. Your initial diagnosis sounds very much like mine. As I am AMA negative and SMA positive, and my bloods were indicitive of AIH, the consultant put me on steroids the day before I had my liver biospy. Surprise, surprise when I got the results of the biopsy the following week it was positive for PBC and no mention of AIH. I was a bit gobsmacked, and to be honest so was the consultant. I had kind of expected PBC, especially as my mum had PBC and her sister (annscot) also has PBC.

    The steroids did bring my LFT's down though. I finished these and within another 8 weeks my LFT's had shot through the roof (4x the original high count) so I was then told that it was AIH/PBC overlap syndrome. Another gut punching moment!!!

    I am now on Budenofalk (steroids) and Azathioprine (auto immune suppressant) as well as the Urso. I have 2 other auto immune conditions (Underactive Thyroid (on thyroxine) and Vitiligo (no medication) = 4 in total.

    Once you have an auto immune disease you are more likely to get other ones. I blame my mum and her sister's family for the faulty genes!!!!! Lol!!!!

    We do have a lot of different auto immune diseases on my mums side.....

    I am currently being weaned off the steroids for a second time in the hope that the Azathioprine will maintain my LFT's without my white blood count being too suppressed, It's all a balancing act.

    My understanding of the difference between them is that:-

    AIH = white blood cells (your immume system) attack & destroy the liver cells

    PBC = white blood cells (your immune system) attack & destroy the bile ducts

    My consultant told me not to worry too much about the PBC as there is nothing they can do except give you Urso to slow down the progression of the condition. This is done by the Urso helping to keep the flow of the bile through the bile ducts so therefore trying to prevent any blockage. He said that I should concentrate on the AIH as this, potentially, could lead to more serious problems faster.

    I hope this helps you and please contact the PBC Foundation in Edinburgh. They are a great support to people all round the world.

    Even with all your other ailments, you certainly have the right attitude. Stay positive and live life to the fullest.

    It's just another wee bump in the road. Mind you I think I probably speak for everyone when I say that I wish they could fix all the pot holes. Lol!!!

    Take care. x

  • Also meant to say that there is only about 5% of patients with PBC who are AMA negative! x

  • Another point. Write all your questions down when you think of them then you don't forget to ask them when you see the consultant.

    I think my consultant just rolls his eyes when he sees me producing my questions. Unfortunately there are no black and white answers with this condition which, in itself, is infuriating.

  • Jtxx, thank you so much for your response. I will not be able to speak with the doc until tomorrow at the earliest, but he had mentioned the prednisone and Imuran before when we were just talking about AIH (he NEVER mentioned PBC) It is very unusual for patients to get this info from any other source than the doc and I am pretty sure i wasn't supposed to get the actual biopsy results. Anyway, as you say this is another bump in the road of life with autoimmune diseases. 40 years ago when I was first diagnosed with lupus I had a kidney biopsy (definitely don't recommend it, had to stay in hospital for a day flat on back. Still the same 40 years later but better drugs) ;) After the biopsy they put me on Imuran I was already on prednisone. So I have taken this before and it did help, after a few years I went in to remission. Hopefully we both will get better. In terms of PBC does the URSO cause problems? Are you on a special diet? Ruth

  • Urso not caused me any problems that I can think of. Possibly the weight thing but again as I am on steroids, autoimmune supressants, officially in the menopause and getting older it is difficult to tell what is causing which symptoms or side effect! My original steroid was prednisolone but I did not want to go on that again as it made me feel anxious, emotional and I had a couple of panic attacks (not something I normally suffer from). The one I am on just now is Budenofalk but you can only go on that if you do not have cirrhosis. I certainly have less side effects than before with this one. I just cannot wait to come off the steroids and see how things settle down with the Azathioprine.

    I am hopefull that all going well I will come off the Azathioprine in a couple of years and stay in remission. Time will tell. Around 30% of patients who have AIH can stay in remission without the drugs so for once in my life it would be nice to be in the minority for a Positive thing! x

  • Jtxx, Thanks for the info about the Urso. I say when in doubt always blame weight gain on medication and other things, it surely could not be related to my eating habits and lack of exercise ;).

    I have never heard of Budenofalk, but will look it up. Also, I read (maybe it was on this site) that a diet of several small meals a day is the way to go with PBC, including some fat, which surprised me. Are there things other than the obvious (alcohol, white sugar) to avoid?

    Ruth

  • Hello again Maddieroo.

    I am only on urso as I have probably said before for PBC. At present I have no other problems healthwise that I know of of any significance.

    When I orginally started on urso Dec 2010 I got a bit of heartburn for a few mths and a bit of bloating but persevered as after the first blood test (lft's) 2mths later and a descend in the results being a great sign it was that push to continue.

    From then on I had no problems, heartburn non-existent as prior to starting urso and also the bloating also.

    Only being on urso I can't say regards taking other tablets with it but as far as I've read there aren't supposed to be that many that do have inter-action or can have. Questran is one that you would take at a different time to urso apparently and also any indigestion remedies.

    Maybe you should post the question on here now regards urso and other medcations others are taking at the same time?

    Regards.

  • Thanks Peridot. I just got an email from the lupus specialist and he said we will have to be very careful about what meds I take with PBC. Don't know what that means. I will see liver specialist on Monday, but i think I will switch to one at the hospital my lupus specialist is with. Here in the US (in case you weren't aware) every hospital or doctors group has their own computer , system for patient information. So if I want my lupus doc to know about anything my liver doc says I have to get them to contact each other. Good luck. I love my lupus doctor but he is at a DC (as in Washington DC) hospital and the parking is outrageous, as in expensive. I can take the metro (subway) but if I am tired that can be difficult for me. SOmetimes I can get a friend or family member to take me, or take a cab which costs more than the parking. Anyway, there a some details to work out but I will just have to switch specialists because even though the gastroenterologist/liver specialist is a great guy and easy to talk to, communicating with him outside of a visit is nigh on impossible. You would think with email and computers he could just email me like the lupus doc does. (Sigh)

  • It would be a good idea if they could work together. Pain meds are something that can affect the liver. My rheumy and liver specialist are at the same hospital but sadly I am only allowed paracetamol (only 4 a day) for the fibromyalgia pain.

    By the way so sorry to hear about you being told by email, I think thats awful but sadly the way things are going. We will probably find out by getting a text one day.

  • I can just see it now, lvbr=PBC :( SFU

    [translation, Your liver biopsy results show primary biliary cirrhosis, sorry, sucks for you.]

  • Tks, yr comment about the text made me smile . Shocking isnt it :(

  • Yep thats what it will probably be like in a few years time. :-(

  • Saw the doctor today and the good news is that the PBC is at a very early stage and doc says it will take decades to cause any real serious liver damage.. I will start Actigall right away. The sort of bad news is that my blood tests show one thing and the biopsy shows something else entirely so they are going to get a second opinion on the biopsy. I will also be going to a different liver specialist. Thanks to all of you for your support. The doctor said there is no need to worry about diet or any meds I am taking for the lupus but my lupus doctor seems to disagree on the meds issue. Well the saga continues but I am so glad I found this forum. I have gotten more support and information from you than the medical establishment.

  • Your prognosis sounds like mine. My biopsy showed up only PBC but my bloods showed up AIH. I was therefore diagnosed with AIH/PBC overlap syndrome.

    To explain a wee bit about about my prognosis:-

    * My liver biopsy showed up PBC although I don't have the AMA antiobody which 95% of people have with PBC have.

    * My bloods showed up AIH and I do have the SMA antibody which is indicitive of AIH.

    It will be interesting to find out what they say about your prognosis. Keep me informed. Take care. x

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