Probably a silly question !!!

I have been diagnosed 4 weeks now with pbc and still worried with the not knowing and waiting for a fibroscan but thank you for all the replies to other questions I've had 😁they have put my mind at ease on a lot of things not seeing consultant again until July .But I've heard a lot of people talking about the itch 🤤 silly question but where ?? Meaning ARMS LEGS WHERE ?? When consultant asked if I had itch I said no but inside my ears so mad itchy and drive me mad and have been like that for so long now strange I know but now I'm wondering if this is part of pbc ?? As I said might be silly question 😂

7 Replies

  • Hello my itch started before diagnosis on the soles of my feet near the heel and on my hands it was much worse at night rather than in the day and I had occasional days of itching all over.Over time it's changed somewhat more generalized but still has periods when it's worse and better.I hope this is useful, always worse at night and keeps me awake making my fatigue symptoms worse, I don't know why.I suggest you check with your doctor.Jane

  • Hi jane thanks so much for your reply !!! Yeah the inside of my ears have been like that over a year now as well and only diagnosed 4 weeks ago . Yes my ears get worse during the night and sometimes wakes me thete so bad but never knew what it was so when consultant asked if I had itch I said no as didn't connect it as I never heard of pbc either 🤤 I have still so much to learn but thank you as now I know x

  • I had itchy ears and a rash in my scalp and ears. I went to my dermatologist and she prescribed a cream that took care of my ears and a shampoo that didn't work. It was after I got the elevated enzymes and steroids the scalp rash went away.

  • Hi Lmur

    I've read about someone who has the itch inside the ear, so could well be. My specialist said it would probably start on soles of feet or palms, but could be anywhere.

  • Hello, my itch is between my knees & ankles. Mostly down my shins. I feel that for most of us it's in the early stages & gets worse in the evenings. I have seen a few posts on this site that revert to itchy ears. The fatigue is pretty brutal at times. It depends on my activities the day before. Plus, I don't feel that there are any silly questions here. We are all learning together with this disease. Im 43 years old, was diagnosed in 2012 at stage 2/3. Was just diagnosed at stage 4 a little over a year ago. So, PBC is a bit different in progression for me. Stay strong & take care.

  • Yes have seen a few on itchy ears alright but until 4 weeks ago never heard of pbc so had no idea !! I don't know what stage I am yet as I'm still waiting for the fibroscan and have to see consultant again in July so hopefully get all my answer then. I have had pain under my right ribcage lately very uncomfortable. But thank you for the replies x

  • Hi Lmur, there are no silly questions! I think PBC being a condition where there's a lot of variation, many of us have been in the position of wondering if a symptom we have is down to that.

    I think, exclude other dermatological causes by asking your GP to examine you. It doesn't seem to be a very common place for PBC itch, although characteristically that is worse at night, as others have said. Keep some cotton wool pads soaked in cold water by the bed and use them to soothe the skin when it's driving you crazy. Try an anti-histamine tablet, and/or maybe a mild, OC hydrocortisone cream (although not IN your ears of course). If it improves with any of those, may not be PBC related. Good luck!

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