Liver Pain - Due to medications or is condition worsening?

I was diagnosed with AIH-PBC Overlap Syndrome, Stage 3, a couple of months ago. Prior to my diagnosis, I had symptoms, but I never experienced liver pain. Now, suddenly, I'm experiencing liver pain. I'm wondering if anyone can tell me if this is likely a sign that my condition is worsening or could it be due to the medications I am now taking (prednisone, cellcept and urso). Has anyone else experienced this?

12 Replies

  • Hi KarenRL my friend who also had pbc was diagnosed with it due to a lot of pain in her liver region but this pain came and went over the years ,she had a transplant 15yrs after first being diagnosed but I'm told constantly its the minority of pbc pateints that need transplant as opposed to the majority so fear not may just be that your liver is a little inflammed at min or could be something else causing the pain such as gall stones, if its persistant see your dr again and he or she can invesigate it further. Hope it settles soon might just be that the meds haven't kicked in as opposed to them causing the pain.

  • Thanks for the response. I don't have a gallbladder, so that rules out gallstones :) I just thought it was odd that I didn't experience this pain before diagnosis and meds, but now have it. Although, I guess maybe it could also be due to the biopsy I had about 10 weeks ago....maybe it's still healing? Actually, your post brought up my other question though....I wonder how long it takes the meds. to kick in and reduce the inflammation? I went back after 4 weeks of being on medication and my ALT had not gone done - I think it was about the same. I had kind of hoped it would show improvement, but maybe that's not realistic?

  • I have PBC AIH and find I get liver pain when I eat fatty foods like deep fried chips n stuff like that. I am about to start on steroids for AIH and take urso for PBC. I am only very newly dx but that is my experience do far! :)

  • Welcome to the AIH/PBC overlap bunch -:) Our little group is expanding. -:) Though most of us here are "just PBC" lol, there are several of us (me included) who have the overlap. Further down this line, KarenRL has commented about her diet and what she is saying about fruits and veggies is right on. Now that you will be starting on steroids (which one?) I hate to be the bearer of bad news but you will probably put on some weight and what they call "moon face", so you will want to watch your diet pretty close.

    Good luck and "welcome". -:)

  • i have pbc and the only time i get liver pain is if i eat fatty foods.. have a look at you diet , maybe thats the problem :)) x

  • Thanks for the replies. When I was diagnosed, I decided to try to focus on overall health and began eating lots of fruits, veggies and lean meats. I do eat carbs, like those Snackwells, nilla wafers (reduced fat), etc. and I'm probably eating more of that kind of thing than I should right now....these steroids are making me so hungry. I try to reach for the veggies and fruits instead, but sometimes the carb/sweets cravings get the better of me. I've never really eaten fried foods, so I know it isn't that. But, from what you guys are saying, it sounds like it could be food-related. So, I'm going to be more mindful and try to remember what I ate the next time it happens. Unfortunately, my condition has caused brain fog and memory issues, so that may be easier said than done ;) Thanks again - I would welcome any other responses to help me isolate the cause of this!

  • Con you explain in more detail about your liver pain. How long does it last, right side, left side, before or after eating, sharp or dull? What relieves the pain?

  • Hi - It's on the right side, just below my breast. Some times it's in the front and some times in the back (kind of under my shoulder blade). It's usually not more than 1/2 hour or so and some where in between dull and sharp. Not too intense....just enough to let me know it's there and to worry me ;) I haven't paid enough attention to whether or not it's happening directly after eating.....I don't think so, but I'll try to be more observant the next time it happens.

  • I would try to keep a record of the pain for a few weeks to see if there is any patterns.

    Also, the liver its' self does not cause pain. There is a sack around the liver that will cause pain when the liver swells and pushes on the sack.

  • Can't always say it's liver pain, however whenever I eat fatty foods or something that's it too healthy, I get pain, and I have no gallbladder. Unfortunately this discomfort happens when I go to bed and it hurts, so I feel for you

  • Since I have been on Slimming World and eating more healthily I have found that the right pain has been less, so maybe it is linked to food as well as inflammation. Hard to tell. I stopped my steroids a week ago but started my diet 10 weeks ago and have lost 15lbs and feel great. Need to lose another half a stone and that will be me. Definately feel that I feel less sluggish, concentration is better and generally feel like I have more energy, although I do still get my "tired days". Eating well helps all people feel better/improve energy levels, not just those with medical conditions. Take care. x

  • I have not had liver pain and hope not to do so but you never know what may be ahead.

    By any chance did you find out the results of a scan at all if you had one? I had a scan a few mths prior to the AMA test and apparently my liver was just 'a bit inflamed' but of no concern.

    I have always tried to eat little fat and still keep to this. As Jtxx has said in her last sentence tho' eating well is certainly something to keep everyone going and I myself find the best time to actually eat little and often is middle of the day. I find it disagreeable on myself - I find I'm more restless - when I eat after a certain time in the evening after already eaten at around teatime.

    Maybe another theory is that perhaps overtaxing the liver by an intake of food on certain days can cause it. I know the gallbladder (if you have one) empties each time we eat something fatty.

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