Pain

[tntarheel]

Does anyone experience liver pain? If so, where? I'm having some mid-back pain pain on the right side and I'm trying to determine whether or not it's PBC related or maybe just muscle strain or a spine issue. I was diagnosed with liver bx in 2008, Stage 2... after elevated LFTs, +AMA, etc. I have taken Urso off and on since then. I had lap-band surgery in 2010 and following that, I've been inconsistent in taking the meds. Thinking I really need to get back on them.... I'm just a bad patient. This pain is a little scary. Thanks in advance for your input!

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Hello tntarheel.

Though I've not experienced what you state is liver pain and hope not to, apparently the pain is real though it is said the liver has no nerves. There is a nerve running down the right side of the body and it is this that can be felt in some patients (said to be a sudden sharp pain that hits the right shoulder) at the point of needle entry when they have a liver biopsy. Due to liver inflammation I expect this is why some experience shoulder ache with PBC and also maybe when the liver is at time when it is pretty inflammed the pain can be felt then. Some say on this site - they will more than likely follow on? - that they feel the pain at the base of the ribs which does correlate with the liver.

Now I was diagnosed in Dec 2010 after starting to itch in March that year. I wasn't diagnosed by biopsy, never had one, I had a high titre of the AMAs (antibodies) and also with abnormal LFTs and itching and at the time fatigue, this is how the consultant diagnosed mine.

I started on the urso Dec 2010 at diagnosis and though I have an odd day or so up to the last 18mths not taken urso for a period of 24hrs when I was feeling sorry for myself in the early days and also didn't eat that day I couldnt' see point in taking urso. Not really missed it for more than around 4 days though over the last 4+yrs now.

My LFTs started to slowly come down and the side-effects I got when I was first diagnosed from the urso were not pleasant to me - bloated tummy, heartburn and I started having periods of constipation I never had pre-urso. Took a few months in the early days to vanish and had no problems since except for heartburn when I had a change of urso manufacturer 18mths ago but again temporary.

I'm not interested in the slightest to know what stage I am apaprently at with PBC. I'm confident it can be known via bloods and also scans these days.

I think if you haven't been taking the urso then you've not actually got a decent picture of how you are going to fair with it. Given urso is supposed to add more bile acid to our system to aid better digestion and improve the flow of bile then in turn it should help the liver more and unless at a dire stage with PBC there is the chance that the liver can start to slowly rejuvenate itself.

I never wanted to take a tablet for life but I had to accept it. I was never one for seeing a GP prior to itching in 2010. I see urso as not a medication but more a supplement as after all urso is a component of bile and by adding more to the system in turn it can help greatly.

Are you still having your LFTs done? I have mine at 6 monthly intervals now.

I know there is no cure for PBC and a patient doesn't necessarily have to take urso given this current fact but I see it that if one is experiencing any of the symptons associated with known PBC and the urso appears to be helping and you have no problems taking then surely it is a better thing regardless.

[CathieG]

I have pain right side just behind my ribs which I know is liver pain and have had this on and off for four years. The consultant said this is not a symptom! When I had my biopsy the needle was targeted right where I feel the pain is so I know I'm not dreaming up a pain which is not there. Take your Urso as it will slow the process but it's your choice, we all have a choice and mine is to do whatever I can to be healthy.......apart from the odd glass of beer!! My choice .

[cazer]

What is lap band surgery. ..is that stomach?yes I myself and lots of others get pain around liver area.mine is spot just under ribs at front with correlating place at back as if someone's stuck something straight through. This said if you have another problem that could be causing the pain it is important to get that checked out.i blamed upper tummy pain on swollen liver^spleen and then discovered while in for endo to look for varices that I had lots stomach ulcers..So do get checked.x

[Jojowen]

Hi, yes I think I have liver pain. My consultant says that it is not possible but I still feel occasional stabs and sometimes a dull ache. Before I started urso I could swear I experienced something that felt like my liver twitched. But I also feel pain on the other side of the ribcage, just below my heart. Not sure what is what really. Sometimes I get swollen and feel bloated, sometimes it is ok. Also my periods are more painful and since my joints ache I almost never feel that movement on my part is easy. But the pain I have is not that bad and my consultant explained that there is like a cloud of gall sorrunding (I guess) my gall bladder. I think I might be his only PBC patient and when I try to tell him about pains and aches he says: " Hmm, well, you have a very mild variant.." That's good, of course, but it makes me feel as he's got more important things to deal with than my pain - that shouldn't exist. Well, pain is in no way severe, just odd because iy shouldn't be there. I have had a biopsy and experienced that sharp shoulder pain I have read about. It really hurt! But passed quickly. So, when pain gets severe we should nag someone about it, mine is too intermittent and not bad enough for me to spend too much time on it. If your pain is persistent I would keep Going on and on about it...

Best wishes,

j

[Chrislg in reply to Jojowen]

Hi all,

I'm a 43 year old male who was diagnosed about 8 months ago after a random blood test. Since then I have had a biopsy, 2 ultrasounds, full body bone scan, fibro scan and an Mrcp. Whew!

I too have the liver pain and the occasional pain below heart on left side. I was told also that the liver has no nerves so therefore you could not feel pain, however the specialist did say that the liver has a skin that does have nerves and when the liver is swollen it could cause pain and discomfort. As far as the left side, that is the area of the spleen, I was just diagnosed with an enlarged liver and spleen and believe that is what is causing the pain and discomfort. Hope this helps!