Pain-especially in hands/knees/feet due to Liver or Lupus???

Hi I am quite new to this site, but have been on the Lupus site for sometime. I have been diagnosed with Lupus since beginning of 2013-although have suffered for many years before that.....As part of the Lupus treatment I was given Methotrexate-which I was on for 8mths in 2013, then got an urgent message to STOP taking straight away in the Nov 2013,then went on to steroids-I have had liver problems ever since the Methotrexate (I will add that I am Tee total).....recently had to have large doses of antibiotics and although I have no pain in liver area-my bloods are now all over the place-and am now awaiting a biopsy (been told this morning that it should be within 2 weeks) I feel absolutely wretched-constipation-orange wee (has been checked and it is NOT my kidneys causing this) and terrible pains and weakness.....My question is do you get a lot of pain (all over body-but esp hands/feet/knees due to the Liver not working properly-or could it be my Lupus? (At the moment just having to put up with it,as am petrified to take any painkillers-sometimes all I can do is just lay still as it hurts to move!!!) Any answers/advice would be much appreciated. Thanks Julie

5 Replies

  • My husband has had similar issues to yourself. Although he was diagnosed with Liver Cirhossis due to Alpha 1 Antitrypsin deficiency and went on to have a transplant he has never been free from similar symptoms regarding pain every where including hands and feet. He was suspected of having Lupus at one point and we are still unsure, Even though he has had the transplant he suffers from lots of pain, bowel problems and other issues. We are currently waiting to see a rheumatologist as we have had differential diagnosese regarding his pains. Also waiting under 2 week rule to see a colorectal specialist regarding his bowels.

    Will post once we get a diagnosis and let you know whethr his pains are due to Lupus

  • I looked up the side effects of Methotrexate and it seems it does not have such effects on the liver.

    I have a friend with Lupus. They do have the same problem with joints and pains in the areas you described. Large doses of antibiotics especially over a period are well known for causation of Gastric problems .

    Can I suggest you try a regular pot of Probiotic Yogurt every day, but go carefull with it at first to make sure it does not upset your stomach, but a little Honey with it helps to take off that sourness I think.

    keep to a very low fat diet, but more carbohydrate/starchy foods, and nothing spicy, and see if it eases at all after a week. try to take some gentle exercise if you can .

    I wish you all the best.

  • "My question is do you get a lot of pain (all over body-but esp hands/feet/knees due to the Liver not working properly" - yes to the pain but just aches really, nothing like you describe. And no to it being just due to the liver not working properly, in my case its due to a mix of autoimmune AIH (Lupus is an autoimmune condition too?) and bone problems either caused by old age (lol!) or the after effects of high dose steroids. I'm more concerned about your dark urine for which as yet there has been no diagnosis. If the dark urine was a liver problem I would expect your liver function tests results to be all over the place and for you to be jaundiced, which is not the case. Obviously the top cause of dark urine and feeling weak and ill is dehydration but I feel stupid asking if this could be the case, dehydration would show up in your bloods too. Is there a possibility you have bladder stones even though you have been tested for a UTI?

  • Hi Bamm, I've had problems with my liver since being diagnosed and successfully treated for HCV in 1996 and, though I am now feeling increasingly tired and listless have had no pain like you've described. I know everyone is different but I would suspect the Lupus. I knew someone with Lupus and your symptoms tally quite well with how she described her condition.

  • Hi All....just to say a big Thank You for taking the time to reply........I am now thinking that it must be my Lupus giving me pain-I have had pain like this before from Lupus-but my meds were dealing with it-maybe my meds are not working properly due to the liver being damaged. Who knows? I am having regular bloods done and my liver readings are all over the place......and have been told my biopsy will be in a couple of weeks but in the meantime not to take any pain am just-living through it.....sounds worse than it is- had a pretty 'good day' yesterday and pain did not come on really bad until the evening-then I had trouble walking, esp upstairs-hands are just so weak that they could not even squeeze the toothpaste! And did have to go to bed with just a quick 'cats lick'-Have had a nice bath this morning-this always helps with stiffness anyway. Again pain is not to bad today-so will just have to wait for the biopsy to find out exactly what is going on. Am also taking a good quality milk thistle and a tablet form pro-biotic. I am not jaundiced so that is a plus!!! Thanks again :-)

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