Liver Flare

I was diagnosed with PBC in 2014, about this time of year.  After going on URSO, as long as I watch what I eat for the most part, my liver has stopped hurting.  But a week or so ago, I started having liver pain again.  I will have some pain before my period, but it stops after I am over it.  But this time it has really been bothering me.  I admit my eating hasn't been what it should be.  I have been having too much sugar, etc, but now I am really kind of concerned.  I'm not due to go to my gastro for several months.  My ALP has been stable, etc.  I have had "flares" in the past, but this one is starting to bug me.  I was stage 2 on diagnosis in 2014 via biopsy.  Anyone have an suggestions?  I went on a liquid diet for a few days and it helped, almost to calm things down, but when I went back on solid food, I had problems again.  I almost feel like my liver is too big for my body.  If I stretch my arms up it relieves the pain, giving it more room. 

10 Replies

  • Hi!  After my liver biopsy I had a fair amount of residual pain, but it's not from the liver.  The liver has no nerves.  In my case it was from the doctor hitting a nerve outside the liver.  A lot of us say we have some sort of liver discomfort with pbc, but it's not truly explained.  My pain is now gone, but it took time.  If your pain is related to when you eat, you might go back to your doctor and discuss it with him.  Could be gut, gall bladder, etc.  Maybe ask for an ultrasound just to check everything out.  One more thing that might help you.  I went gluten free and that has really helped me feel better.  Unprocessed gluten gets broken down in the liver and it can cause inflammation not only there, but in your GI tract.  Try gluten free for a couple weeks and see if that helps!  Take care, Shellie. Ps, I'm stage 2 as well with AIH overlap.

  • Hi Facegirl17

    You are correct liver has no nerves, but if you develop nodules on the liver this can cause pain, last year I had my gallbladder  out then had complications my liver was bleeding so I ended up having a further two operations, and six months later my liver was so painful on having a detailed scan I had these nodules and one very large one near where the gallbladder had been. 

    notorDjp I hope you are able to get to the bottom of your liver pain, ask your gp( doctor) to refere you to your gastric consultant, 

    Keep well everybody x

  • Thanks my Liver Dr. said there is no way you have pain in Liver and I said Oh yes I do sometimes!!!!

  • Hello Facegirl7.

    Apparently what causes pain following a biopsy is due to a nerve that runs down the right shoulder, the hepatic nerve.   It is said that most patients feel a sharpened pain in their shoulder at the point of needle impact in a liver biopsy.  I've not had a biopsy as I had criteria that diagnosed me without in Dec 2010.  I'd not take up a biopsy now if requested as it wouldn't alter treatment of PBC now am I interested in any stages of it.

    I watched a programme on British tv (I posted the link on here as you can watch the programme online) notso long ago and it featured a specialist in the UK and he gave his explanation of gluten in our diet.  He said that unless a patient is diagnosed with coeliac there is no need for anyone to take up a gluten-free diet.  He stated that only if there was a known allergy to gluten would advise a patient to avoid.  The programme went into the facts about gluten and what it is, where it comes from and basically it is a form of protein.  Obviously I am not a doctor so I cannot give anyone an opinion as to if they should or shouldn't include gluten in their diet as some things we find can help, we are all different.  I know I've tried a bit of gluten-free myself (my son had a bowel problem, doctor thought reaction to overuse of antibiotics.  He was advised to lay of wheat gluten in particular awhile and then re-introduce.  My son's symptons vanished over time and he is fine now, doesn't avoid gluten in his diet now).  I know for myself I can't say it made much difference at all and as this programme stated, buying specific gluten-free products there tends to more fat and also sugar in them than products that are the same with gluten.

  • Hi, I am new to this site and have been reading postings for about an hour. After MUCH discussion, I am being treated for PBC with a large dose of ursodiol (my insurance will only pay for the generic form, not the brand name. ) I noticed as you signed off that you said you also had autoimmune hepatitis as an overlap. I think my gastro doctor believes that this is what I have also but for now we are following the instructions of a liver specialist who decided I should be treated for PBC. Do you take any other medicine for the AIH? 

  • My biopsy was two years ago, so my pain isn't from that.  I have thought about going gluten free, but the thought just exhausted me.  I have tried to reduce the amount of carbs, IE bread, etc.  I know its better when I don't eat as much sugar, but its mainly fat and carbs that gets me.  I also think that I just plain run out of room in my body when I gain too much weight.  I put on approximately 10 lbs in the last three or four years due to my thyroid.  I am slowing losing some of it too.  I think if I can reduce some of my stuff and lose some weight it will help.  I've actually been taking some tylenol a bit too for the pain.  Today was bad with easter food, but hopefully I will deal with it ok.  I am not sure about the nodules though.  I haven't had a test on my liver now since 2014, save blood work.  I was better today.  I think I just need to remember that I can't eat like everyone else.  Once in a while is ok, but moderation.  

  • I have been gluten free for a few years now and it has made a HUGE difference. When I first did it I gave myself a strict one week trial then if there was no change at least I know I tried it. After that week I felt amazing and never went back.  You can do one week and see if it makes a difference?

  • Yes I agree about going gluten free.  Ive bought two two immune system books by doctors who specialise in the liver and its problems (Dr. Sandra Cabot, known as the Australian Liver doctor  ) for instance.  People with autoimmune diseases are 'on their way to being Gluten Intolerant or words to that effect- they are gluten sensitive . So go ahead and try it, you can only benefit yourself.    Also, Doctors cant possibly know everything and thats why this community  is fantastic, we have a pool of experience.

  • I went gluten free a year and a half ago. (Pre PBC diagnosis). I read an article on the Gluten/hypothyroidism connection. I wasn't prepared to go through coeliac tests. And i could not wait I was so uncomfortable. I just did it. No big deal. I was just cutting out a protein. There are plenty more out there. We all have to do what is right for us as individuals.

    It made a big difference to my digestion.

    This is not a recommendation just my experience.

    I don't buy expensive gluten free products. I make my own. It's as easy to make a gluten free cake as it is to make an ordinary one.

    Live well

  • Just an update.  This is another proof not to assume that everything is your liver.  On Wednesday night I went to the ER with lower right abdominal pain that was so bad I thought it was my appendix was going to burst.  Turned out that my remaining ovary had developed a hemorraghic cyst of 10 CM and it had twisted and ruptured.  I had been leaking blood into my abdomen and had about two pints worth in there by the time they took me in for surgery.    Actually of the sucker had not twisted I would have bled out.  My poor liver was affected as it was trying to keep up with the blood loss, but the overall aching was not from the liver.  Now I was pumped with enough pain killers to drop a raging rhino, so my liver is going to have some issues for a while until I heal, but my "flare" wasn't really my liver per se, though it was warning me something was going on.  now I still plan to go with the gluten reduced diet to help my liver get through this bump in the road.  Thanks for the suggestions.  I had to take some ibuprofen, which I know I shouldn't, just to get through the headaches following the detox from the massive amounts of pain meds I was on.  Now to face medically induced menopause.   

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