Urq pain

[KevinHall10_]

The reason i asked about progression of stages is because my urq has started to acke. Its a dull pain. Anyone having this with results being not so elevated?

[donna01]

I have this at least 2 to 3 times a week. I was told it is the organs surrounding the liver that actually hurt due to inflammation. I don't know where my blood work is currently but am going in next week to find out.

[Hidden in reply to donna01]

The gallbladder is the organ closest to the liver. I don't have a gallbladder so that can't be causing my pain. The next organs are the stomach and pancreas. I was given a lengthy speech about how it is not my liver that hurts, but the sheath surrounding the liver that is inflamed and causes the pain. I wish all the specialists would get together and tell us all the same thing. I know when I eat the wrong things I have the whatever pain.

[donna01 in reply to Hidden]

I too do not have a gallbladder. Maybe it goes into our pancreas or spleen then. I'm not sure but just stating what I was told.

[Hidden]

I have a twitch of pain there every now & then...feels like a pulled muscle or something. My hepatologist said it could be the fat in liver causing it. I have a slightly fatty liver.

[gwillistexas]

My labs are good right now. I have little ache now & then. My dr says it’s not necessarily inflammation but to remember there are organs very close to the liver as well. So don’t worry too much. Good to ask though.

[Hidden]

I wonder if this inflammation of the bile ducts inside the liver, might possibly cause our URQ pain?

labtestsonline.org/tests/an...

This test detects and measures the amount of AMA in the blood. Primary biliary cholangitis is a chronic autoimmune disorder that causes inflammation and scarring of the bile ducts inside the liver. It is a slow-progressing disease that causes worsening liver destruction and blockage of the bile flow.

[claygi]

My liver hurts everyday, all day. My blood work is now excellent and has been so since being on Ursodiol. My numbers went down within three weeks of initiation of the med. My ALT and AST are both 27 and ALP is 77. The hepatologist says PBC causes no pain, the Internist says it does in a small percentage of sufferers, about 10%. I’m in that group. The pain in my liver was actually what prompted me to go back to the Internist repeatedly starting in 2016 and complain for several years straight. My Internist knew enough to test me for AMA and the first two times, came back negative. The third time, came back weak positive 1:40. He said, you have PBC.

He then sent me to the GI Doc, he wanted to do a biopsy and I refused . So, the Internist sent me to the hepatologist at UCLA. He tested the AMA again and bingo! It was 1:1,280. He definitively diagnosed me with PBC with that result plus the elevated ALT/AST/ALP/GGT/IgM/IgG. Been on ursodiol 600mg for one year, numbers great now (see above) but still feel like I have cement in my liver and it feels heavy and it aches. Bizarre sensation at all times, not good.

[Jeanb47 in reply to claygi]

I have right upper quadriient pain as well. I have good days and bad days. It has been proven by liver resection and multiple ERCPs that my liver makes small stones and my specialist tells me that it is the source of most of my pain. But I often have the pain even when no stones are visible by ultrasound or CT scan.

I believe it is generated in the liver. Having had two liver resection I can say without a doubt- liver hurts. Especially when it has been cut into! I’m not eligible for Ocaliva because of the possibility of stones causing blockage.

That being said. I’m turning 71 in March. The specialist feels that I have had active PBC for around 20 years. (Undiagnosed but pathology from surgery in 2000 was suggestive of PBC). And I’m still Only in stage 2-3. And on the whole doing well. I’m told I do not look my age and other than fatigue and pain I think I am okay. I’m managing my pain by taking small doses of Tylenol. I watch amount carefully as Tylenol in too much quantity is toxic to the liver. My doctor has given me a prescription for stronger pain killer if I need it and so far I have avoided using it. I use meditation, ( have iPad app to help) rest, and try to use distraction to control my pain. I’m successful some of the time but have had emergency trips to be assessed and pain control.

I too, think that what and how much I eat does have an effect on my pain. I’m trying to pay attention and see if that is a true statement and if I can identify a pattern.

Bloods. ALP - 289, AST-60. ALT. 55 GGT -205, bilirubin varies - 16- 22 , AMA M2 was 240, ANA positive 50.

I’m now having blood work every 3 months.

I’m a retired nurse practitioner so that really helps me understand this disease and treatment options. Not sure why some of us with PBC have no pain and others do. But as you’ll hear from many health professionals, we are all individuals and there is never in my experience a true “text book” course to any disease. there are always variations . People’s bodies react differently.

I hope this helps you in some way.

Jeanette

[Jeanb47 in reply to Jeanb47]

I forgot to add my last fibrascan was 9.5.

[Hidden]

I've had URQP on and off for four years, I was diagnosed with PBC eight years ago. LFTs still all normal except ALP at 180, this has come down again slowly in the last year. But I've lost some unwanted pounds so the URSO dosage is now at the upper level for my weight i wonder if that's the reason.

What is causing the pain, can't say for sure my consultant put mine down to my one single gall stone...... I know I had the pain before the gallstone was diagnosed ( the answer to that was the stone was probably hidden from view on the scanner) but what I do find is it's not what I eat , but the quantity that seems to set it off. If I keep to the little and often advice it seems a lot better.