My mother has been diagnosed with PBC since 2013 she is 72 years old. She had recent bloodwork in January 2015 which showed all of her liver enzymes were in normal range. In the last 6 months test and scans have showed no cirrhosis developed and no varices. She seemed to be pretty good lately other than some slight itching and fatigue. However for the past 3 days she has been in severe pain with her mid to upper back. We have been to the hospital emergency room, urgent treatment center and her liver specialist all in 2 days. Her bloodwork from ER showed ( AST is 325 ,ALT 473 Alkaline Phosphatase 121). Her Alt and Ast have tripled in numbers since January. Tylenol does not help with pain at all. Emergency room gave her tramadol that did nothing. Morphine was then given. That helped with pain for about 10 hours until last night the back pain started again. The only relief she could get was to sit in the bathtub during the night with hot water. That seemed to ease the pain a little. She has not slept for 3days. This morning I knew we had to get something for the pain so I took her to the urgent treatment center and she was given Norco for the pain. She is presently asleep and in little pain. My mother hates taking anything for pain because of the PBC but we were desperate to get her out of discomfort.
I know everyone has there own experience with PBC but if anyone has experienced severe upper back with fluctuating numbers please share your thoughts. I dont know if this means her liver is inflammed or suffering any due to the back pain and elevated enzymes. All the liver specialist told us he wants to do a ultrasound of the liver which is scheduled for 2 weeks. He thinks more lower back pain is associated with the PBC than upper. My mother explains the pain as right in the middle of the shoulder blades.
This is so hard for me to see her suffer and be in so much discomfort lately. Best Wishes to everyone with PBC. This disease is so unpredictable and seems like an unsolved puzzle to me.
Thank you so much for taking the time to her my story. This site has the most caring people.
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andrea042473
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I am sorry that your mom is struggling with such back pain. Can the liver ultrasound be done sooner? When my liver ultrasound was done, it revealed a small gall stone I was unaware of. During the test, the back pain hit again and I recognized it as something I had experienced before but I did not know the source. When the doc told me about the gall stone, I connected it to the back pain. When it hits, the pain is very sharp and in the center of my back, level with or just below my shoulder blades. Since moist heat seems to help, you can briefly microwave a tube sock with rice or a small wet towel to create hot packs.
I have no experience of the pain but I am wondering if a hot bath helped to relieve the pain a bit would a hot water bottle directly over the sight bring similar relief. There is a heat pad sold in the UK called Cura-Heat which is placed on this skin - whether this would be of any help I suppose anything is worth a try.
I do hope your Mum is able to find an answer soon.
Hello andrea042473.
My initial thought regarding your mother and this upper quadrant pain as it tends to be known could be due to PBC. Liver pain can sometimes be felt apparently. At the moment I don't have any. But her bloods could have increased due to the fact she has been taking a medication as a pain reliever, the Tylenol. (I am in the UK and we have paracetamol but I'm not sure exactly what the med is your mother has. We have aspirin as well as paracetamol.)
You can also experience right shoulder pain with PBC. I did once read that when one has a liver biopsy (I never have, was diagnosed due to other factors and in the UK if you can, no biopsy is required), at the point of needle impact most patients can feel a sudden sharp pain in their right shoulder. This is due to a nerve that runs down the body near the liver and that is thought to be the cause of the sudden pain. I did have a bit of shoulder pain myself in the year prior to 2010 when I was diagnosed but I was in a manual job and ahve always done a lot of things like this in my adult-life so never thought anything of it. It can come and go so I don't really think about it. Whether it is or isn't I am not really bothered at the moment as it isn't any pain that is causing me concern or trouble (as yet). You can have bone problems in PBC thought to be due to malabsoprtion of certain vitamins, Vitmain D (the sunshine vitamin) being one of them that is required for bone health.
It's said that majority of medications can be more of a burden to the liver and it sounds like your mother's blood work is the reason for this. Sometimes these things cannot be helped and we have to give in and take certain medications.
The only way your mother will get a picture of her liver at present would be for a scan. I had ultrasound back in 2010 pre-PBC diagnosis after abnormal blood work. The liver can be shown to be in certain stages and even if it isn't 100% normal apparently. Mine back in 2010 was shown to look pretty much normal.
It could be your mother is experiencing the current problem due to PBC but it also could mean something unrelated. I hope at some point very soon your mother finds some way of trying to relieve it all.
Thank you so much for everyone that took the time to reply. My mother is still experiencing terrible back pain i just pray gets better soon. Tomorrow i am calling her liver specialist to try and move the ultasound to asap. We need answers and solutions to figure out how to get rid of this awlful back pain.
Worst pain I ever experienced was gallstones. I would lie in a hot bath to try and ease the pain. It went around my right side and into my upper back. I also went yellow in the eyes. So this could be a possibility. Hope your mum improves soon.
I hope your mums pain improves, I have recently experinced this pain and been in hospital, and it was pacreatitis, blood tests didnt show it up but my scan did. It also reminded me of when I had a gallstones, although I had this removed years ago, however apparently stones can still form without one. Keep going back to docs dont be fobbed off. Her pain is there for a reason. I wish u and your mum well, good luck
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AMA-M2 positive (68) and liver biopsy shows no damage and no inflammation but 30% fat in the liver! 
Need some guidance
Unsure if I have PBC, can you help me?
Biopsy results back... 
