i was in hospital recently to have my 6 monthly checkup. The registrar I saw tells me that it is very unusual to suffer from body pains with pbc. I thought these pains were part of pbc and she has now totally confused me. She also said my blood results are the worst they have been and wants me to have blood tests on a monthly basis until my next visit in October. I think she is wrong and am sure she is because I have read on this site that others suffer from the same pains. Confused or what! :-(

12 Replies

  • Typical what we need is a top hepatologists to get pbc although I wouldn't wish it on anyone and then let them tell us we don't get pain I know I got a lot I had one registrar in Ent department keep asking me how much alchol I drank when I told him I was to sick to even consider alchol and that Pbc wasn't caused by alchol he and the young nurse in the room insisted it was couldn't believe my ears so I said I want to see consultant so he brought in the consultant who on the previous visit had diagnosed me with sjogrens and I told him right in front of them what the registrar had said to which he said that Pbc was definetly not caused by alchol so you see unfortunately some doctors generally don't have a clue take care x

  • Just after I had been diagnosed with PBC, I got an appointment to see a Rheumatologist as my joints are so bad especially my elbows, lower back, hips and knees. My GP told me to tell the Rheumatologist that I had just been diagnosed with PBC which I did. He examined me and looked at my bloods (which say I have it) and he said I don't have it, that I have Fibromyalgia, which has almost identical symptoms except for the itch, which I have had for 25 years.

    I was very confused and went straight back to my GP and asked what was going on as I had just had the most awful 2 weeks since being diagnosed, to now being told I didn't have it at all. She said that from my symptoms and blood results she thinks I do have PBC and autoimmune disease and has referred me to a gastroenterologist - appt through for June. My GP has recently put me on Amitriptyline for the pain and depression, we are still in the process of trying to get the dosage right for the depression but I must say that the joint pain has started to ease off.

    So just hang on in there and get a second opinion if you need to, or go to your GP if you have a good one. Mine is very thorough and I trust her completely.

    Good luck :)

  • I get pain in my feet, my consultant said aches and pains are part of PBC.

  • In a way it figures why one can have aches and pains in the joints. Given that in PBC certain vitamins essential for the bones can be more difficult for them to be metabolised in the system (Vits A, K and D for eg) then I suppose it can become a bit of a chain reaction.

    I personally don't think PBC causes things like this, it is the problem with a bit of a breakdown with the system which in turn then has that knock on effect resulting in an additional bodily gripe/problem.

    I myself have cracking joints, have had for several years, even before I started to itch in 2010 and was then diagnosed with PBC end of that year. Given I have spent mainly all my adult life in work that has been lifting, carrying, etc and also fetching and carrying for the family, I just put mine down to that as to be truthful I don't want to think that it's due to PBC and also whilst I don't have much of a problem at all (yet, if ever) then I don't tend to bother.

  • PS I finally changed GP surgeries recently and next month I will have to go in for the urso on repeat script. Hopefully this goes better than the old surgery but you never know.....I might just not get insulted as I also have suffered since 2010. Mine has mainly been the alcohol so yes I think it's possible that most of us can get this from medics who in my opinion these days are just ignorant.

    I am tempted to just answer to a doctor that yes I used to drink to my heart's content and see what reaction I get but I think I'd be wasting my time really. I know myself I've not been much of more than the odd social drinker in adulthood and I've never been a home drinker so at the end of the day it's up to them what they think of it all.

    After all, it is a sad fact that if you smoke cigarettes the medics are queueing up to offer advice to quit and if you are an alcoholic then you can go to a drying out clinic for help. Us with PBC just get the verbal insults!

  • i have pain. dont know if its down to the PBC or the Fibromyalgia.

  • I have pain in many joints - told by a rheumatologist & a hepatologist that it is due to PBC. I think it's the 'autoimmune' bit of the lovely PBC that causes this Polyarthralgia.

  • I suffer from joint, muscle pain more so in last few months. I also suffer extreme pain in my jaw. I find it painful when I have been sitting for a while and I try to get up. I find doctors extremely unhelpful, and was told by consultant other day, I will never be pain free,!!!! really fed up as only 42!!!

  • I suffer from bad joint pains, in almost all my joints and I would like some of these idiots to come and waych me trying to get up and down stair's, lift things, get stuff out of cupboard bed, have a shower and cook. I have even had to stop coming down stairs half way down as i could not cary on down without a rest. I have now been to the pain clinic and they said they haven't anything they can give me because of the PBC except they could try opiates, but as yet no one has said directly why i am in so much pain. one walk round asda ( well half way round) and I am in bed for the rest of the day in pain. Sorry for the moan but I am fed up of these know alls who know nothing, I don't wish this on anyone but...................they should have it for a week.

  • Joint pains can be related to PBC . This would be logical as PBC is an autoimmune disease. I got a rheumatologist to put me on immunosuppressive therapy and I feel so much better ,joints fantastic and tiredness gone . Not much evidence on this in medical literature as not many studies done . More research needs to be done .

  • Joint pains are related to PBC that's what my GP + two Consultant Rheumatologists. I've also got scleeroderma, FM + arhtitis. So I'm in a lot of pain. Being tested for Celiac disease @ the min. Keep well. :-) ,

  • milo2002-

    Just curious as to what immunosuppressive you are taking?? What dosage? I have reduced my Azathioprine (Imuran) and am completely off the Ursodial. Not doing that well however, and will be having labs done next week.


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