I think this is my first post. I visit this site a few times a week and appreciate all the information you wonderful people provide. I was diagnosed with PBC 2 1/2 years ago after a slightly elevated ALT 32.. the blood tests revealed AMA 1:641, I was referred to a gastroenterologist who prescribed 500mg Urso 2x/day. Up until then the only symptoms i had were itching and fatigue. After taking the Urso, I began to have upper right quadrant pain, my gastro said it was probably diet related. I stayed away from fats, etc... The pain subsided for a while, but now is back. I had labs done in July Alk phos 46, AST 19, ALT 17, Bilirubin .4... I had an ultrasound done last May which read: Liver: measures 14.8cm - echogenic liver suggesting steatosis, hetedrogeneous echotexture may reflect presence of multiple small cirrhotic nodules, no intrahepatic biliary ductal diliation, no demonstrated mass lesion. Gallbladder normal, common bile duct measures 5.5mm; Pancreas normal echogenicity; spleen normal size right and let kidney normal.. All good but my gastro has reordered the labs CBC, CMP and CRP. He is concerned about the pain.
I guess my question is - does anyone else have this discomfort/pain and still have normal labs??
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Lili1214
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This disease is so weird. I've talked with women who have near to normal liver enzymes and they are in stage 4 PBC with cirrhosis. There are others here in earlier stages of this disease and their liver enzymes (numbers) are far worse. I dont get it.
I was diagnosed 3 years ago. I've probably had it a lot longer. I'm in early stage 2 (I think). I had an MRE last year and that's what my hepatologist says.
Upper right quadrant pain can be from many things. I get it too every now and then when I eat too much protein. For others it may be from eating too much fat. It also can happen when our livers get inflamed for whatever reason. Mine usually lasts 2 to 3 days and goes away.
I have labs every 3 months....that's what my doctor wants. They are mainly watching my Albumin and my Bilirubin. I was told that those are the two to really watch. My doctor keeps track of my ALP, AST and ALT too, but he says those other two are more important to him. I keep track of them all. Albumin shouldn't go too low, and Bilirubin shouldn't go to high.
Warm towel across your liver may help. Can you associate the pain with anything you may have eaten? If it persists and you're worried, see your doctor.
Thank you Stella! I think it could be pizza.. I typically stay away from it, but my granddaughter was here last weekend and we ordered pizza. I only had one slice... I think I get to feeling well and normal then I stray with my diet. I'm seeing my Dr in a few weeks and will have new labs Monday. Thank you for your reply.
I think i deleted my response..let me try this again.
Hello Stella, let me get this straight in my brain... so if your liver enzymes are normal doesn't mean your liver isn't going to stop from advancing to the next stage right?
I really dont know. But I've been told that some PBCers liver enzymes can actually look good, yet they are in cirrhosis. Maybe they have stabilized because of medication. I really don't understand it myself yet I was told this by a PBCer in that exact situation. It's so confusing. You would think having cirrhosis would be evident by labs alone. Apparently that's not the case. The Liver is a strange and complex organ.❤
Yes. On and off for years. Not due to meds because even when not taking URSO it happens. So uncomfortable lasts for days. Cannot position myself in a comfortable position when this is happening. Keep us posted please
Hiya, I've just been diagnosed (Sep 2019) and waiting to see consultant Dec (a 3 month review).
i experience pain and consultant felt possible acid reflux. Since taking Omeprazole the centre chest bone pain has subsided but not the dull ache under my right rib cage.
I don't know much about test results but mine are positive ama's (I've also tested positive for ana's) my ALP on hospital discharge was 1222 but since gone down ALT 240 and Bilirubin 12.
I'm also on Urso 500mg x2 daily. No changes in pain or symptoms.
I'm under a Professor in Hepatology and what is weird is that he specifically informed me I did not cause this by any eating and drinking habits nor does it have any effects .
I've since read that avoiding fat is bad as we may not absorb what we need from fat due to the bile....
so I would take advice from your consultant before making any drastic changes to your diet or health care plan.
Morning...about 13 years back, I would experience that right sided pain. I couldn't figure it out and was rapidly heading toward panic over it. My doctor had no clue, so I went to a Naturopathic who actually had me write a food and supplement log. I also had to make a chart of the times I ate what and how that correlated to the pain. I did that and he suggested an elimination diet because we really do not know what single/or combination of foods may be causing this. Also, with the supplements, a little holiday to see if that changed anything. I did the supplement holiday first. Nothing really changed. Then I began eliminating the usual suspects.., sugars, glutens, soy, peanuts, corn, dairy, eggs. These are all know inflammatory foods. Also stayed away from animal fats and animal protein. To this day, chicken, even organic air chilled, gives me problems. Well, on any given day, it's easy to eat them all. So I slowly began taking out the foods from my diet. At the end of a couple of months, I began one food at at time, to reintroduce them. I found that for me, animal fats, sugar, and eggs are real problems. I already had stopped the others, so it was a little easier for me. The pain mysteriously went away. Was it diet, was it just time for it to leave, I will never know. What I do know is that I feel better when not eating those foods, and it's easier on my body when I take my supplements every other day. Hope you can find what is your trigger...the pizza most likely contained many hidden inflammatory ingredients. It's a shame. I think pizza was sent down by the Gods...I can't eat it any more either. Be well
Thanks so much for the post and responses. I'm sharing my recent experience in solidarity and hoping to learn.
I'm in Texas, so vocab is a little different.
I received my PBC diagnosis via a series of tests ordered by my gastroenterologist in March 2017, and take 500mg of Ursodiol 2x/day. At some point since then, he diagnosed me with NAFLD. By BMI standards, I am obese.
Ten days ago, I saw a Physician's Assistant (PA) in my primary care physician's (PCP) office. I'd been experiencing upper right quadrant pain for almost a month, especially just under the ribcage (slight swelling, very tender) , clavicle, and at the spine. I have fibromyalgia, osteoarthritis, and CREST, so pains come and go with little way of knowing why. Also, my enzyme levels had raised no alarms during a hospital stay back in May. So I had waited to see whether the pain would resolve, but it did not.
In any case, the PA ordered blood work and sent me for an ultrasound to check my gallbladder, saying my symptoms presented as "classic" gallstones. Results were: Elevated WBC at 11,000, zero gallstones, and "fibrosing fat." In other words, the fatty liver disease diagnosis has worsened to NASH, with pain and elevated WBC attributed to inflammation and scarring.
I don't understand what, if any, bearing PBC has on these conditions, other than my commonsense perspective that a liver challenged by an autoimmune condition surely isn't functioning properly. Combine that with the dietary habits of someone born in the mid-20th century U.S., and liver problems ensue.
Significant dietary changes loom, and I am researching bariatric surgery as an option. Due to how my fat has accumulated, and the fact that it is painful, I suspect I have lipaedema (not the same as lymphedema), which for the most part is not a recognized medical condition, but has been seen to not effectively be resolved by bariatric surgery.
And I long to feel better, less exhausted. You know.
The big fear I have left for last: I am scared that my PBC, gauged at Stage One 2-1/2 years ago, is progressing unduly rapidly, increasing the risk for end-stage liver disease much sooner than the initial assessment forecast.
It would be so helpful to hear experiences of anyone who has undergone bariatric surgery and its impact on liver conditions, as well as anyone suffering from fatty liver disease.
Yes, my labs are very good, AST is 20 ALT is 22 and Alk Phos is 70. I’m on Urso for 2.5 years and yet, I wander around with upper right quadrant pain day and night. I’ve been to the hepatologist about it, the GI doc and now I’m headed to the pancreatic doc. It’s a mystery.
Yes,. I just haven't felt good . Went to my gp and he ordered lab work., although the ruq pain just resently started. I didn't tell him because it wasn't hurting at the time of the visit. It is awful not to know whats going on in side your body .
The liver itself can't hurt, because it doesn’t have any pain receptors. However, if the liver is enlarged due to cirrhosis, it can push on other organs and you'd feel pain. In addition to labs, you should do liver ultrasound once or twice a year, to monitor the liver condition through imaging.
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No diagnosis yet but AMA+. Any advice?
strange PBC , LFT back to normal before starting Urso- anyone with similar experience?
Finally, some good news!!
Pbc? Or not?
Could high AMA be something else? 
