So I don't know if it matters, but I noticed through my reading that most of the posters are in the UK. I am in the US and have been reading the boards for a bit while I waited for the rest of my results to come in and for the final confirmation. I was informed on January 8th by my gastroenterologist that they have confirmed PBC. There may be other factors at play in my case, but that remains to be seen. As a quick breakdown my labs are
Alk Phos: 151 (High was 248, low was 95)
ANA: Centromere pattern 1:320 titer
AMA: 87.3 U
5'Nucleotidase: 11U/L
GGTP: 76 IU/L
Liver biopsy report also states that it supports PBC. I have been referred to a hepatologist at another major hospital (Johns Hopkins) about an hour and a half away from where I live for further consultation.
Does anyone currently posting deal with gallbladder issues on top of the liver issues? I had a HIDA scan last week and found out that my gallbladder is also basically nonfunctioning. Ironically the reason that the PBC was discovered is the pain that I have when I am eating which seems to be the chronic cholecystititis and biliary dyskenisia I am dealing with.
So my GI doc says my liver isn't behaving and starts the Urso with the consult to the hepatologist, my PCP says my gallbladder isn't playing nice and has to be removed so gives me the surgical referral, and on top of that I have to see a rheumatologist to rule out any other autoimmune conditions. They seem especially fascinated by a red rash that showed up on the back of my one hand around the time I started getting so sick. It feels like my whole body has just decided to give up at once.
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jmanderson1984
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It doesn't matter where you live: The PBC Foundation supports members in at least 66 countries around the world.
There are people using this particular service from all over the world, too. That means that some information will be different, medical protocols, etc.
To address your post:
Having PBC does not preclude or exclude you from having gall bladder issues. Many people diagnosed with PBC have had their gallbladder removed.
Diagnosis by biopsy is pretty much 100% (except, obviously human error) accurate.
Again, with PBC being thought to be within the autoimmune family of conditions, it is very commonplace for someone with PBC to have other autoimmune conditions: Sjogren's syndrome being one of the most common.
Thank you for posting. I hope you enjoy this community. I would strongly recommend you do join the Foundation (and it is free) so as to learn as much as possible about the condition, its management and what you can do to help yourself in an informed way.
Thank you for the welcome and for responding. I've been feeling very alone since starting on this journey. When I first told my family my brother's response was, "Why do you always have to be diagnosed with strange things I've never heard of?" Truth be told I had never heard of it either until I started researching my lab results online. I was pretty sure before the doctors ever said the words what it was.
As it stands now, I am on 900 mg Urso daily and have a standing order for LFTs every 3 months. The GI plans to monitor that. However I do not yet know what stage my PBC is in. All I have is what the liver biopsy report says which has not given me a definitive answer through my research. It seems I have literally one hepatology center in my state/coverage area through my insurance. I must wait to get in there to get further information.
Meanwhile I will look into the foundation you mentioned. My journey into PBC is in its infancy, but I am trying to educate myself in order to be my own advocate. In my experience doctors have many patients to worry about while I only have me.
Hi...I just read your post..I having issues as well..they say I may have PBC or may not..I'm currently living in Atlanta Ga and I am finding it very hard to find a doctor here... I am from NYC and I'm thinking about going to see a Dr there...have you gone to the John Hopkins ? Have the been helpful? I'm also new to this site and trying to figure out what is going on with my health as well.
I have an excellent gastroenterologist here in the Athens area that is guiding my PBC journey since diagnosis in June 2014. If you don't mind the drive, I am happy to recommend him.
I also live in ga. About 45 min north of atlanta. I see Dr. Joel Wedd at Emory and he seems to be very informed about pbc. Found out my gastro from Rome GA had me on a dangerously high dose of urso. He is currently redoing all of my test biopsy included. I have been very impressed with everyone at Emory so far. So you might want to check him out.
Hi Thanks so much for responding,,, I'm actually on the South Side of Atlanta...Newnan GA..i was just referred to Piedmont Liver Specialiat in Mason Liver Tranplant Clinic..to went to see her once and still has not confirmed PBC ..it is a struggle to speak with this Dr..and I'm very disappointed...I am drowning in medical bills for the tests they order....I thought about Emory ...thanks for the recommendation.
I have not been to Johns Hopkins. I actually found out late Friday that my insurance (Medicare and Medicaid) will not cover visits there because I am technically out of state since I am just north of the Maryland line. So I will be going to Hershey Medical. I do not yet have a date to see a hepatologist though. I hope you can find a doctor that is willing to help.
Yea. My GI doc said that there's literally no other hospital with a hepatologist in my state. It's okay. I have been to Hershey before; I just preferred Hopkins.
Hi and welcome. I too am in the U.S and was diagnosed in October 2014. Like your story, I too knew what I had before the doc told me because I was able to see my bloodwork online and did a lot of googling. I had my gallbladder out in 2010 and was recently told they believe that was the start of this disease. Strange thing is, before I had my gallbladder out, I had done alot of reading on gallbladder issues and read how many people that have their gallbladders removed, have liver problems. My dr told me this wasnt true. Coincidence? I dont know. But here I am 4 years later with PBC. I am on the same dose of urso as you are. I luckily have no symptoms other than the high enzymes, elevated Alk phos, and the AMA and GGT. I opted out of the biopsy, as I felt my liver is already aggravated enough, why aggravate it further. I am praying I am like many on here that I can just "function" normally and hopefully will die of old age instead of Pbc. I did have a very long ultrasound as well as ct scan with dye and they say all looks normal so far. Oh and that rash you have, I have it on and off on my pointer finger! Odd, isnt it? Strange thing with me is I dont have any other autoimmunes, which believe me, I am grateful, but just odd that I only have one. Anyways, this group has helped me a lot and I pray for all of us that they find a cure rather sooner than later. Best of luck to you.
It's interesting that you have been tossing around the idea of the gallbladder being the start of it all. My mother actually asked me about that last night. As best I can figure out I had my first attack in 2004/2005. I was away at college, and it was just this searing pain in my abdomen. However it didn't fit with the symptoms of a gallbladder attack as the pain was too diffuse, and it went away after I had finally gone to the bathroom a few hours later. I really thought I was going to die that day.
I didn't have a choice as far as the liver biopsy went. They didn't diagnose PBC until it was done. I have had a CT scan, CT enterography, EGD/colonoscopy, and now the HIDA scan. Never had any ultrasounds done. Curious about your rash now. Mine seems to be going away with the Urso. I was hopeful it would disappear for good. I guess I will find out soon enough about the other AI when I see the rheumatologist. I've heard the AI conditions like to travel in packs.
Yes. I was so worried about having the gallbladder surgery (even though it was relatively easy), that I was doing a lot of reading on it. I suffered for over 2 years with the attacks and the doctor told me each would get worse. I tried a holistic approach, drinking apple cider vinegar and Epsom salt with water, which by the way, was horrible. Anyways, a lot of info I was coming across was stating that gallbladder removal can cause liver issues so of course, it scared the heck out of me. Well the attacks were now daily, 4 to 5 times a day. I had no choice but to get it out as the pain was debilitating . My mom had hers out the old fashioned way back in the 80's (not laparoscopic) and her liver is fine. As far as the rash on my finger, no, the urso has not stopped it. It comes and goes and mine does not itch either. It just turns bright red. On another note, I have a friend who I grew up with that has Crohns and PBC. What are the odds that two childhood friends both having PBC if this disease is supposed to be so rare? As I mentioned, I do not have any other autoimmunes (knock on wood!) unless this rash is one that I'm not aware of.
Just curious, have you had any more gallbladder attacks since your issues in 2005?
Indeed the attacks have continued. I was just unaware that they were gallbladder attacks when they happened. The frequency increased over the years, and I thought that it was some sort of food sensitivity I could not nail down. Within the past couple of years I had told my parents that sometimes when I ate it was like I "broke my belly". The pain would get so intense, sometimes culminating in a brutal visit to the bathroom (though never vomiting); while other times simply going away slowly on its own. It wasn't until September when I had lost somewhere around 20 lbs in 3 months that my PCP was not happy and questioned me. I had planned to ask her about the pain anyway as it was now coming after every meal regardless of what i ate...and at that point I was literally down to eating apples and broccoli trying to appease the monster living in my gut to no avail.
The CT of my abdomen showed enlarged gastrohepatic lymph nodes, and my labs came back with the elevated alk phos, hence the GI visit. Many, many tests later we have arrived at today with me waiting for an EUS procedure tomorrow to biopsy the gastrohepatic nodes (finally!) as they are still problematic on the most recent CT and are now "matted" so not easily measured. Next week is the consult with the gallbladder surgeon, and on 9 February is the Rheum. Also waiting to hear from Hershey still about the consult with the hepatologist. I need a calendar just for my appointments these days it seems.
You have received some good answers already so can I point you in another direction.
PBCers Organization which is situated in Texas can be found on Facebook. As Robert from the PBC Foundation has contributed you now know about the PBC Foundation in Scotland which has been an invaluable aid to me.
There is also livernorth.org.uk/ which is again a UK based source of information but you will find lots of people from around the world use this site to gain information.
I am a 63 year old Brit diagnosed with PBC some 8 years ago. I believe that I am one of the lucky ones that only suffers with the manic itching and occasional extreme tiredness. I use lubricating eye drops for the dry eye but apart from that I don't seem to have any other issues. I was told by the specialist that using antihistamines helps reduce the itching and in addition of course I take Ursofalk which seems to be the standard treatment.
I hope you will soon have everything sorted out so that you can put PBC on the back burner and enjoy living your life.
Thank you. I will look into those places I remain hopeful that the PBC is only an incidental finding because of the gallbladder issues. I guess I will know once that comes out what actually is coming from the liver.
Hi I'm intrigued re the rash on the back of your hand. Your the only other person to have mentioned this. I also have this and it's painful. I am being referred to a dermatologist but would be interested to hear what your doctor makes of it. So far no-one here has associated this with my PBC.
My rash is not painful. It is more itchy like an eczema. Nonetheless it's nice to know I'm not alone. As soon as I mentioned it (in reference to thinking the Urso might be helping a bit) to my PCP she responded by telling me I definitely need to follow through with the rheumatologist. None of my physicians has made any mentions of a dermatologist, so that's intriguing. Seems my docs are looking at it as being linked to something AI rather than dermatological.
I am a member in Texas. My diagnosis was reversed in that I had symptoms of gallbladder acting up prior to 2005 but ignored it once sick episodes were over. All my autoimmune diseases were diagnosed within a short time in 2005. First I had a rheumatologist tell me that I had Sjogren's Syndrome. Within months after that, I learned I had Primary Biliary Cirrhosis based upon labs and a liver biopsy and was put on Urso diol at 1000 mg per day. My gallbladder had given me gallbladder attacks for years. Finally, in 2014, I got up the courage to get my gallbladder out and the surgeon was able to get another liver biopsy at the same time as gallbladder removal. All my doctors were stressing that I had to get that gallbladder removed. I had laproscopic gallbladder removal. Good thing I finally had it out. I feel so much better. My liver labs are better. My Sjogren's Syndrome had earlier gone into remission in 2012. I feel so much better now. The gallbladder had a big gallstone with lots of evidence of past scarring and was making me feel bad with acute episodes and diarrhea bouts. I just did not realize the gallbladder was really important to get out. I wish I had not waited and ignored the gallbladder problem. I feel like a well person now but I still take my liver medicine daily. I plan to revisit my doctor soon to be sure my Sjogren's is still in remission.
I feel the concern in that folks and family can be so surprised that one person can have so many diseases but that is what happens when one has an auto immune disorder. In our family we happen to have several in various stages of auto immune disorders. Sure makes us wonder about our genetics.
Please consider and do not wait on getting that gallbladder out when your doctors say it is time for it to be out.
Did you have any ill effects from the gallbladder removal? I've done a little reading about Sjogren's, but I don't want to get too far into reading about all of the AI conditions until I have some lab results to compare. I am going for my surgical consult about the gallbladder on the 27th, so no worries about me waiting. I have no choice as now I feel the pain even when I don't eat. It's just worse when I do. I guess I did my waiting before ever bringing it up to the doctor that I was having this pain when I ate. I hear what you're saying too about your family members. I feel sometimes that all I am to them is a walking sicko. I've made the decision to not have children based in large part on my genetics and not knowing what I could be passing down. It wouldn't be fair to them. Besides I have enough trying to manage taking care of myself at this point.
I had no real lasting ill effects from the gallbladder removal. I had no real pain after the laproscopic surgery and no long stay in the hospital. The only problem or concern I had was starting to eat solid foods again after I was home from the hospital. I had been on a liquid diet immediately after the gallbladder removal during week one. It was a bit scary for me to eat solids since I had limited instructions on what foods to begin eating and when to eat a real meal. (Fear of the unknown since I had read that high fat foods would increase transit time in the gut.) I was nervous about eating especially after diarrhea started after too many days on liquids after my gallbladder was out. I ended up having to call the doctor after being home for a week. It was my fault. I had no idea that staying on liquids and not starting to eat normally like I was instructed to do would cause problems. He had told be to eat normally. He said the diarrhea that I was having was due to my not wanting to really eat solid meals that were a fat source. I was told to take an imodium to stop the diarrhea and start eating solids rather than just liquids. My problem immediately stopped. I find I can eat anything now. I began to introduce more and more types of foods. If I had diarrhea after a new food item, I just waited awhile and tried eating it a few days or weeks later and maybe ate less of it the second time. My gastrointestinal system can now handle the high fat foods okay even without a gall bladder. Now, I even can eat spicy foods and a number of high fat foods that are my favorite foods. I really do not have to think about what I can eat anymore. I have not found any food that I can not eat. It has been about 9 months since my gallbladder was removed. Since getting the gallbladder out, I find it is wonderful to just be able to eat anything now and have no aches and pains from a bad gallbladder. By the end of week 2, I was really getting back to normal eating. I do find that transit time is a bit faster since the gallbladder is out after I eaten high fat meals but that is not a problem. I eat normally and do not even think about what to eat or not eat.
Thank you so much! Especially since based on my reading I was planning to do much the same as you had with continuing to restrict and take it easy on the digestive tract. It seems that may backfire rather than helping which is interesting. I have, for quite some time now, been on a very limited diet consisting of only eating every couple of days to try to get some type of nutrition into my system. Even taking my daily medications hurts at this point, so I have been putting the bare minimum in sort of to try to minimize the discomfort. As offputting as this might sound I actually relish the thought of potential diarrhea for a bit as I have been battling constipation for the past several months as well. I honestly have no idea what a "normal" transit time would even be anymore as I have found that I have to take something in order to move things along no matter how long I wait. I once went a week before deciding that it had been long enough, and I had been eating 3 times a day in and effort to see if I could keep things moving. No dice.
I tell you what...if I had the energy to jump up and down at the moment I would be. I'm excited now to have this alien removed from my stomach!!!!
Hello jmanderson1984.
I think you can have a problem with your gallbladder even if you have PBC. You will find that quite a few on this site have had their gallbladders removed (I haven't as has had no problem and my PBC was diagnosed due to itching and fatigue, abnormal LFTs (liver function tests) and GGT plus I had a positive high reading for AMAs (but negative on the ANAs). Apparently you don't tend to have a problem with no gallbladder, basically it is a store for the bile of which is released when we eat. Urso being a type of bile component does aid the breaking up of fats in particular.
I have no idea of your red rash. With the itch you can get with PBC you don't see anything, you feel it sort of just below the skin.
There is an American organisation for PBC if you are interested (I have in the past checked out their site myself), I'll post the link here.
There is also the PBC Foundation as Robert has mentioned as there is also Liver North of which I noticed butterflyEi posted. You can acquire a free dvd all about PBC from LIver North if you fill out details online. They do apparently ship to other countries.
I was forewarned not to get too excited if the scan came out positive as removal of the GB wouldn't solve the liver problem. As I understand it I may have to adjust my diet and slowly reintroduce fats after the procedure. With no place to store bile the body is not capable at first of digesting fats from foods very well. Hey if I can eat then I will be happy. Thank you for the link to the USA PBC foundation and the info about the DVD from Liver North. I will definitely check into both of those.
Hope you get through your forthcoming procedure. Apparently majority of jpatients who have gallbladder removal now have keyhole surgery so it is a pretty quick op and recovery.
I think in PBC it can make sense to cut down a bit on fats but not cut them out completely as we need fat for the fat soluble vitamins like Vit A and D that we are said we can actually lack with this condition which then in turn can cause our bones to be problematic.
I was never one for fast foods like pizzas, chips (or fries) pre-PBC diagnosis anyway so I've no problem with a fat intake. I tend to eat as my daily output requires. (Today I've been on a long 2hr walk and with most of England being either with snow or some form of hard ice underfoot (we have the latter) at the moment I have found my legs doing that bit more work on even flatter ground. So a bit of chocolate and a banana didn't go amiss.)
I just have a food cut-off for myself when I have finished my evening meal. I do find that I taper off as the day wears on and I don't think due to PBC but due to the slowing down and being active morning and afternoon and also my age now.
If you haven't already, on the PBC Foundation website, if you make yourself a member, you can access another area on it and there is the Compendium that is the same file I originally got sent from them several years ago now and it details more about PBC, lifestyle, diet, etc. It is pretty informative. I find myself occasionally having another look at something.
I am sure once you get back to a bit of normality following surgery and then taking urso for PBC you can start to accept you have PBC and then start to see a life to enjoy ahead and grab it as I have done the last few years.
Hello! I'm in the US too. My Gall bladder was removed about 10 year ago for the same reason, it had stopped functioning. I suspect that I had PBC then, but was Stage 0 or 1. I felt much better after I had it removed until about 3 years ago and I started feeling worse again. I also had to see a Rheumy to get tested for other autoimmune. It sounds like they are going down the right path and you are getting the once over that you need at this point. It will calm down later, though. The rash could be from another autoimmune condition too, so that's why they are probably worried about that. It sounds like your ALP is not that elevated. Mine got to 500 at one point and I've heard others with far higher. I hear lots of people on here that have to have their Gall Bladder removed when they find that have PBC. I don't know if the disease just makes it bad or that it makes it harder for the gall bladder to work or something. I just know that mine never had stones, it was more like it just didn't work. My HIDA scan showed 9% ejection fraction. Mine had same as stopped working. Let me know if you have any other questions or you can PM me. I also belong to the PBC group in the US on yahoo groups, but this group seems to post its questions quicker, if you can wait for the time difference between here and UK and the continent.
Thank you Yes, I can't help but wonder as well. With liver functions outside of the norm then that would put some stress on the GB, no? Since the output from the liver goes there it makes sense at least to me. But there's also an argument of correlation vs causation, and that would require studies to be done.
Right now I am overwhelmed with appointments and tests. I still have to go and have a biopsy done of some lymph nodes (gastrohepatic/ periportal lymph nodes) that started this whole journey for me. Funny that they were the first sign something was wrong back in September yet they still haven't been tested because the liver stuff took over. Then comes the surgery, then the rheum. I told my psych that some people have a social calendar, and I have a doc appt calendar.
Did you see a hepatologist at hershey? i have been trying to get appt w univ of md doctors. Who was recommended at hopkins? there is a very good hepatologist in phila. i live near balt md...newly diagnosed and just trying to get more answers. hope u r well.
I am scheduled to see the hepatologist at Hershey on April 9th. That's the soonest I could get in. I never got a name at Hopkins as I was only told my insurance wouldn't cover me going there since it's out of state. Medicare/Medicaid would only pay if I went to Hershey. For now I am playing the waiting game. I go for my first 3 month follow up labs in the morning to check liver functions since starting the Urso.
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New here and feeling uninformed by my GP 
New Diagnosis of PBC and Prescribed URSO
New to PBC and terrified
