Pbc lupus

Hello you guys,, how are you all doing? Well nothing changed here.. I'm still ill and my hip has got worse, even though I had steroids in it,, I also got my blood screen from lupus, normal range is 0/12 and I scored 12! A year ago it was 2! Technically I'm in normal range limit! So no treatment. Even though it is borderline,, I'm furious, they kept telling me pbc is a autoimmune disease! But I'm on no treatment for that either 😔 still get tremors from time to time, I look so ill, I have a raw red rash around my mouth??

Its v sore, the hospital have not giving me a single leaflet about pbc or advice on what it is I have or what will be my future,

Have a nice day xxx

8 Replies

  • Can you try some vaseline on the sore patch. It may help to soften the skin a bit and make it less sore.

    Hope it may help let us know how you get on.

  • I to have bad hip pains, so I sympathise. Pbc is autoimmune and there is no cure for it just urso which is a bile acid to help keep things flowing in the liver. Are you on urso? As regards to lupus, you can be seronegative for Ana test and still have lupus. What are your symyoms regarding lupus? Have you contacted the pbc foundation? They have loads of information. I feel for you ! I to feel like this with my symptoms and specialist. I also never get to see the same doctor either. You should ask for a cream from the doctor for face. Good luck.

  • Hello 👋, I have positive Ana test and positive for other antibodies. They trying to c what autoimmune disease is destroying my liver, I have skin issues if goes in sun, coldsore. Sore inside my mouth and nose, skin rash, tremors, hair loss, pin needle in my face, hands, legs, my right side of body can go numb, speech problem at times and memory loss. Failed 2 memory test at hospital. Had mri scan which show significant abnormalities, I'm fed up to the max, unable to work since August, fatigue is or fine or extreme

  • I am on no treatment!! Even though I have pbc x

  • If you test positive for AMAs and you have specific liver enzymes that are out of the normal range (you need to check with the PBC foundation - link to their site at the tope of this page - about which ones, and get their guide), then these are the text book diagnostic criteria for a diagnosis of PBC. A biopsy could confirm it.

    So, it depends if you have AMAs and abnormal liver function tests which are typical of PBC. If you have these two diagnostic criteria, then I would think you should be on Urso. Talk to the PBC F people, but have all your test results to hand - get copies from your GPs reception: it's your right to have copies, but they may make a charge for copying, more to search back for older ones.

    Hope you get sorted.


  • I have pbc.. Diagnosed on bloods.. That's why I can't understand why I'm on no treatment, I'm c in again gastro in Jan will request it, it's my body and I don't think they should decide on this one, thank you for your help x

  • Maybe you could ask to see a liver specialist - a hepatologist - and preferably one who specialises in PBC. Maybe if you put a new post on here, saying roughly where you live, then PBC people can send you a private message with details of good PBC / liver specialists near you.

    Again, I would talk to the PBC foundation people, as their advisors are so good. I have no idea why you would not be on Urso if you have at least 2 of the diagnostic criteria for PBC (one is not enough). Maybe it is something to do with the other conditions, but I'm only guessing at that. Talk to the PBC F people, they are the experts. Take care.

  • Thank you,, I'm from Basingstoke in Hampshire ;)

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