Right Upper Quadrant Pain in PBC

[Michiganpbc]

Anyone here have PBC and have right upper quadrant pain? I had this years before being diagnosed with PBC this year and was always sent to a gastroenterologist who diagnosed me with IBS which I don't have and referred my self to a liver doctor I am glad I did as she diagnosed me with the PBC. Always follow your gut no pun intended!

I have noticed upon complaining about this pain to my liver doctor and her team that it is not acknowledged meaning they told me to see the gastroenterologist again which I refuse because she then tells me to take medication for it but it never helps and it is dangerous to take unnecessary meds if you have liver diseases.

I called the American a Liver Foubdstion and asked their customer service rep about information on the liver area pain that I did not find it in their literature anywhere she said, you are right we don't have it documented/listed anywhere. I asked her to please talk to the manager there to have it listed as I have it and it sent me to the diagnosis I have and so many people have right upper quadrant pain are denied by many that they have it even by their own doctors, this makes a person feel very confused and wondering why this is not acknowledged by their own physicians.

I myself have been sent to many other doctors for this liver area pain and still end up back to the liver doctor, I am not drug seeking, just needing to have the pain acknowledged by the liver doctors . I would never take a pain med so this is not my motive at all....

I am asking the ALF to put right upper quadrant pain in the information packets they send patients and on their online site as people need to see it is common in liver disease, as it is other health conditions .

Thoughts everyone and please leave your diagnosis and do you have liver area pain ?

I am going to take my numbers from your answers and ask all the liver foundations to please list it so people have some comfort in knowing they aren't crazy as many have been made to feel by their care team.

[smc555]

I was diagnosed with AIH on June 16th of this year. I definitely had right upper quadrant pain and I have read posts in this forum and others in which people have discussed this. Supposedly, the liver itself can not register pain. My pain was not severe but it did keep me awake at night as I tried to find a comfortable position to sleep. I would use a pillow wrapped partially around that area. I am currently not experiencing any pain. I feel like there was a correlation between my high liver enzyme counts and the pain. I wish you success in getting this fairly common (from what I have read in different forums) complaint listed.

[Michiganpbc in reply to smc555]

Thank you your opinion counts, I have sent a letter to the ALF and I am asking my liver doctors clinic to list it, that pain literally saved my life, hope you are feeling well today.

[Bermuda1]

It is often the capsule around the liver which gives the pain. If the liver is inflamed at all this will get stretched. It has loads of nerves unlike the liver. It can also be an enlarged liver pressing on other bits . Dr. S are ethnically righ in tha the liver feels no pain , but that area can do.

[Michiganpbc]

Thanks for responding yes it's the area where the liver is The Right Upper Quadrant where I and others have pointed as where their pain is, doctors need to be trained to take notice of this , a simple blood test would save thousands of lives if they look and listen and order a AMA if liver panel blood tests are abnormal but in my case every Colon related disease was looked for first years passed by thousands of dollars waisted and the delay in treatment let my PBC progress to many years, hope this helps others if you have pain in The a Right Upper Quadrant area ask to have your AMA drawn simple blood test and liver panel of blood tests also simple blood tests most doctors will know I pray which ones to order, be proactive and insist....

[Bournemouth]

I have portal hypertension and I have permanent discomfort every day in the upper quadrant and have dreadful problems eating as it gets worse I have just had a ct scan to look at the biliary system to see if it's blocked in any way.

[Michiganpbc]

So sorry to hear this I feel your pain I don't have portal hypertension but have pain in The Right Upper Quadrant everyday, I hope you get some relief soon let us know how you are doing ....

[Nhaamor51]

I have had RUQ pain for many years. First it was determined to be my gallbladder. Along with the severe pIain my liver enzymes were above 800. Had the gallbladder removed. The pain wasn't as bad after for a few years and then it started again. Three years ago began with elevated enzymes that would elevate even further after a bad attack. Had all testing done and after a biopsy it was determined I had Sarcoid of the liver. Was treated by a rhuematologist with first Imuran then IV Remicade. Every visit they would ask about my pain. My answer was always the same. One day my rhuematologist said that I can't be having pain because the liver has no nerve endings. Well then it must be something else because I feel it all the time. It's not like I expected or ever asked this doctor for any pain medication so exactly what would be my payoff for lying about my pain. Just recently my Gastro doc has decided that he has no idea why my enzymes are elevated. Will be having a laporoscopy next week so the Gastro can do an ERCP. He thinks I may have a stone causing all the pain. I don't know how a stone that an ultrasound and MRI did not see could cause all this trouble.

[Michiganpbc in reply to Nhaamor51]

Thanks so much for sharing your story , I still have Right Upper Quadrant pain everyday and from what I read so many do, if the liver feels no pain I think the swelling increases the sac its in and that swelling cause the pain or and the surrounding areas are being pushed everyone has a story about their liver area pain I hope we can help others by getting it put in black and white then maybe people will go straight to asking to have their Livers checked first instead of other testing and running around seeing different doctors while getting progressively worse, if the liver area hurts ask your doctors to check it simple blood tests. I know stones can cause terrible pain and I do hope you follow up with a liver specialist for your abnormal liver blood testing my gastroenterologist diagnosed me with IBS which I never had, I had PBC only diagnosed after seeing the liver doctor. Let us know how you are doing.

[Nhaamor51]

I have been doing this for 4 years and have had every test including a PET scan twice. My first biopsy was interpreted as Sarcoid. Now after all this time the Gastro upon getting new scans and a second biopsy says my liver looks good. Well maybe because the treatment I received from the rhuematologist was working despite continuous elevated enzymes. I have compared all my blood work and scans and PBC or SOD are what comes closet. My problem is my PCP ordered the AMA and it came back negative but I was wondering if because of the immunosuppressant I was could cause a false negative. It is given to stop your body from attacking itself.

[Michiganpbc in reply to Nhaamor51]

I don't see my last post to you maybe I will wait and see if it pops up soon instead of rewriting it....

[Michiganpbc in reply to Nhaamor51]

I would get in to see a good liver doctor asap take all your tests with you.

[maddixcar]

Hey All, Can we spell out terms. What is PBC and AIH?

[Michiganpbc in reply to maddixcar]

Pbc is primary biliary cholangitis Aiih is autoimmune hepatitis