Urso and pain: I have been taking urso now... - PBC Foundation

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Urso and pain

Meeru2007 profile image
13 Replies

I have been taking urso now for 6 months. I still get a pain almost daily in my liver area. Sometimes it's a sharp stab that makes jump and other times it's just a dull ache. I wonder to myself when it happens is my liver getting worse and its constantly on my mind.

Does this happen to anybody else?

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Meeru2007 profile image
Meeru2007
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13 Replies
Turquoise2075 profile image
Turquoise2075

Hi Meeru, please don’t worry about the pain in the liver area. Studies have shown that the pain, like fatigue, does not correlate with the level of disease. Some people with more advanced disease have no symptoms, and others at the milder end have pain and fatigue.

My pain is like yours, varying between a sharp pain and a dull ache. It briefly went away recently but is back. I think stress can make it worse. I had a 3 day holiday last November that I really enjoyed. At the beginning my liver pain was very noticeable. By the end I noticed by the time I was driving home it had gone. I’d spent a lot of time in nature doing photography which is something I love, so I think immersing yourself in something you love doing actually calms the whole nervous system and can ease the pain.

Your routine blood tests will indicate how things are going with the liver. If the Urso is stabilising those results then that is the main thing. I find even just breathing deeply and letting the area around the liver relax and let go can help. I was the same as you in the beginning, fearing that every time I felt the pain it meant something bad, but I’m learning to be kind to myself and send kind, calming energy to my liver, which might sound kooky but it helps 🙏💕

Meeru2007 profile image
Meeru2007 in reply to Turquoise2075

Thank you for taking the time to respond. The past 6 months have just been a constant worry, reassuring to know I'm not the only one thank you x

Buddy2017 profile image
Buddy2017

The sharp stabbing pain is the only symptom I have (touch wood ) . I was diagnosed in 2011 I went to my GP about the pain , he thought it might be gallstones but it turned out to be PBC . Mine only happens as I am eating , I still haven't worked out which foods " stab " me , it's mostly meat but it happens if I take liquid Night Nurse . The stab is so sharp it takes my breath away 😪

Meeru2007 profile image
Meeru2007 in reply to Buddy2017

Thank you for taking the time to respond. I also have that sharp stab and it shocks me when it happens!!!

iagra profile image
iagra

Liver itself can't hurt, because it has no nerves. Please, read this:

What does liver pain feel like?

Your liver is located near the bottom of your rib cage and is tilted slightly to take up more space on the right side of your abdomen than your left. Your live lies just above your stomach on the left side of your abdomen and the small intestine on the right side.

Liver pain can be difficult to diagnose because it can take many forms. Also, your liver doesn’t actually contain any nerves that sense pain, so discomfort is usually the result of inflammation or damage to surrounding tissues.

More than 80 percentTrusted Source of people with cirrhosis (a condition involving scarring of the liver) report pain, and it’s usually described as dull or throbbing. This pain is often reported generally in the abdomen, but people with cirrhosis may also complain of pain in the back, shoulders, and large joints.

Liver disease can be a source of referred pain, in which discomfort is noticed in an area other than where the actual problem is. The shoulders and neck are common sites of pain referred from the liver.

Liver disease can also cause inflammation throughout the body, leading to a general feeling of discomfort. Ascites, or a buildup of fluid in the abdomen caused by liver disease, can lead to sharp pain, or even pain when breathing

Meeru2007 profile image
Meeru2007 in reply to iagra

Thank you, yes my consultant told me this , but it certainly feels like its coming from the liver! X

iagra profile image
iagra in reply to Meeru2007

I know what you mean. I also have occasional pain in the liver area. But, my gastro keep reassuring me that it is not coming from the liver, and no other problems are found. I have all sort of pain in various places, and many can't be explained. These are not the worst. Worse, when they do find a bad problem. I wish you all the best. Keep posting about how your are.

Vic71 profile image
Vic71

Hi Merru, I experienced the exact same pain after 3 weeks of Ursofalk to the point I went to local hospital the stabbing pain was so bad. My liver specialist immediately took me off Ursofalk and advised some people can have severe reactions. The pain completely stopped within 3 days. . I have since started Ocaliva and have had no pain in my liver since. I am early stages of the disease. Just wanted to share my experience because my pain was all caused by Urso, which is not common apparently.

Meeru2007 profile image
Meeru2007 in reply to Vic71

Thank you. I have beennok for around 5 months, it's only just starting to happen. Maybe a should drink more water and stay hydrated to see if that makes a difference x

Pamela4475 profile image
Pamela4475

I had it for about 3 years…the pain on right side, I couldn’t even sleep on that side and pant waist bands really hurt and my liver enzyme were normal at that time. But they are right liver doesn’t feel pain but the surrounding areas do. I stayed on my low carb low fat diet lots of water and daily walks… I also prayed a lot as I was and am alone with no family in town or even close. Urso kind of mage me sick early on but I got over that. Hang in there bc it does work 🙏🏻🙏🏻😊

Meeru2007 profile image
Meeru2007 in reply to Pamela4475

Thank you it's taking a while to get My head around if all xx

Ash322 profile image
Ash322

I don't remember ever having sharp pain but must've had dull pain. It was annoying enough to get sent for a scan and they put me on Urso to help dissolve the stones that were present. I had been on Urso for 6 years and asked my Gastroenterologist if I could come off it. He felt around my liver and said that he could feel almost nothing there, so I came off it. I have had pain though under my sternum for 3 years combined with reflux and vomiting. Turns out I had stones in my gallbladder, so recently had that taken out. Maybe get your Bilirubin checked in a blood test, when you are in pain as it can be an indication of stones blocking the gallbladder or liver ducts.

Meeru2007 profile image
Meeru2007 in reply to Ash322

Thank you for your reply. I have had mri scan and no stones found x

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