side effects of having PBC

Hi, I have only had PBC for about 6 months and have done a lot of reading up on this but i would like see if anyone can help with symptoms that i seem to be having not sure if it all to do with having PBC or something else,

inside my ears itch really bad, my skin does too but not too much, really dry mouth and no matter how much i drink it doesn't help also a dry cough and my voice goes hoarse sometimes, i also have pains in the joints of my fingers.

thank you

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10 Replies

  • Hello tinajohnston.

    I think fair to say that although when we are diagnosed that seems to be when we say we have PBC from (I was diagnosed December 2010) but in fact we have probably had it a bit before. My consultant said when he diagnosed me that I probably started with PBC 'a few years' prior.

    I've had itchy ears with a bit of dry skin for quite some years. I originally thought when I was younger (early 30s) that it was due to perhaps having pierced ears so left any out for a couple years. Made no difference and the holes never actually closed up when I decided one day to put some in when I was out on a special occasion. I did have eczema as a baby and from time to time I have encountered odd patches. Earlier this year I developed a small patch on one eyelid but now we are almost through summer in the UK and the temperatures and what sun we have had I've been outdoors, it has almost vanished. It might be several years again before I become plagued once more.

    Dry mouth and/or eyes can be a sympton in PBC and it is I believe known as Sjorgen's Syndrome which is another auto-immune condition. I don't have any of this so cannot help you there.

    Painful joints can also be a sympton as in PBC we can lack good Vitamin D absorption for one which is needed for good bone health. Might be worth you while speaking to a doctor about these symptons. I know some with PBC have bone scans at intervals. I've not had one as yet.

  • I had pic for many years I also get a dry mouth I chew gum when it comes on I don't get it all the time. My ears Ich but I use a cream from the Dr need to put it on every day hope this helps you

  • Yes can identify with all of these. I also suffer from my scalp itching. Sure some people must think I have nits! Lol

  • Oh my goodness sounds like me. I have itchy ears not dry mouth. But really struggling with dry eyes. Splits up my nose that won't heal. If my hands get cold my fingers go white and I can't feel them. They also at times ache little fingers feel like they're going to dislocate. I get achy ankles. But........ I won't go to the doctors. Sooner not know what else I have wrong lol

  • Have you been diagnosed with Raynauds? The fingers turning white and the numbness sounds like the symptoms for that. It's another autoimmune disease.

  • Yes I have all those x

  • I have all this as well at the moment i am in pain from head to toe and i have my fingers inside my ears that much you would think they were attached, I swish my mouth out with coconut oil for a few minutes each night and it helps with teeth and gums.

  • Yes sore joints dry mouth forgetfulness and thinking issues are all side effects of PBC there are mouthwashes at Wal-Mart for dry mouth thedexlubricate the mouth and help the itchy eat may just be wax build up

  • Hi tinajohnston.

    I had a diagnosis of PBC 20+ years ago and recognise some of the symptoms you describe. Dry mouth can be helped by Salivix which stimulates the production of saliva. Can be bought over the counter. I use it. Itchy palms for me, get really sore at times. Some itching elsewhere. When really bad dermovate cream from Gp helps. Sore joints? My wrists were very painful for about 2 years. This disappeared quite suddenly. Now get painful kee joints which is sporadic . I would say they are all symptoms of PBC! Good luck on your journey. Try and live your life without worrying too much about it. You can't change it so forget about it (PBC) as far as you can!

  • Yes, just put up with it! I would rather do that than go to the doctor and get medication - more trouble. I have Sjogrens too and all the symptoms are mixed up so that you don't know what causes what. I do think that the Sjogrens caused pbc as I have probably had Sjogrens for about 20 years but only diagnosed two years ago with both when my liver enzymes were raised.

    Ive just decided to forget about it as Crundalite suggested, Ive wasted 2 years feeling sorry for myself and trawling the internet.

    I can live with what I have and I hope I dont get any worse. Kandiepat

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