Can anybody help me please?

I have pbc diagnosed nearly a year ago now. My doctor told me to try speaking to other people with this condition. The main problem i have is my sore dry skin. It is especially bad when the weather is warm and humid. I do not know what to wear. it limits me so i cannot wear what i used to wear without it stinging and itching, I was under a dermatologist who could not help me. I would like to know of anyone who has dry thickened skin and it they have a cure on how to get rid of it? If i didn't have this skin condition i think i could cope with the itching.

10 Replies

  • Hi Sophie....I fortunately have not experienced the dreaded itch as severely as some so I can't offer much advice but what I can recommend is if you are on facebook there are a few PBC support groups on there for you could join.......there are some wonderful people on there that are in the same boat and will welcome you with open arms and offer you support and advice. I know that i did not answer your question but I hope directing you to where you will find the answers helps. Take Care :)

  • Hi Sophie I use Aquious cream with menthol which you can get on prescription. I find that this not only helps my very dry skin but also the itch. In hot weather I find that wearing cotton clothing help also.

  • Hi Sophie have you been checked out for scleroderma there are a few people here with it as well as pbc just a thought because you mentioned thickening skin take care x

  • Hi Sophie,

    I would say check for Scleroderma too. Thickened skin is one of the main symptoms. It is not unusual to have both PBC and other Autoimmune conditions.

    Just recently my GP told me there is a warning out for Aqueous Cream. Somebody has decided it should NOT be used as a moisturiser due to the additives in it. Instead I have been given Fatty Cream.

  • Thank you both for your answers:) I will make an appointment with my doctor and suggest i be tested for this. If there is a test? i will Google it! I have tried Aqueous cream suggested by my doctor but cannot find any cream that works really. They all seem to aggravate it. I will let you know how i get on. Take care xx

  • Sorry, i meant to say thank you all for your answers and help. I didn't realise i had this many replies. I am so glad i asked the question. I was beginning to feel very alone:-) x

  • hi sophierose.dont know if youve tried this but everyone i know with a skin condition have tried and found some relief.wrights coal tar soap! not to everyones taste i know tho i quite like the smell.was recomended by a vet! but sometimes i have more faith in them.hope its of some good.take care.x

  • Hi Sophierose, l don't know if this will help you, but i also have very dry skin - for many years - & my Dr recommended a body wash called Aveeno for sensitive skin. I couldn't believe the difference it made. Still have the itch but my skin is nowhere near as dry skin& sensitive to touch. This won't help your mentioned thickened skin, & like others, i,d suggest having that investigated. Aveeno is an OTC product from supermarkets & chemists in Aust. & is manufactured in the USA.

    Hope this helps, cheers, Dorothy

  • Thank you both for your suggestions, i will definitely look them up especially the Aveeno especially if it hydrates my skin:) My nan used to swear by coal Tar especially for blackheads. I'm not sure if my skin condition is scleroderma after looking at the images. Mine is mainly on my front torso face and arms and looks more like i have a sun tan and its smooth and shiny. It doesn't look unpleasant but it is so sensitive that i am limited to what i wear as it irritates causing me to itch and possibly make it worse. The other problem i have and i would like some advise on how to ease this to is an itchy scalp which moves to my face and forehead, which looks permanently red. It so bad that i cannot have my hair touching my face or ears. As soon as it tickles me i itch like a mad person. It could be because my skin and possibly my scalp is dry and i am dehydrated. I feel like i need to be on a permanent drip! any suggestions would be very much appreciated as my doctor, Gastro and even the Dermatologist cant help. And you think, if they cant who can? It's pretty scary! I don't want this PBC anymore:(

  • Dear sophierose, I was diagnosed with PBC because of the itching!! The hair in the face thing you mentioned just gave me a shiver. I used to take forks, combs, brushes and literally scratch till it bled sometimes! This was 18 years ago, my doctor gave me a prescription strength benedryll it helped alot but made me very sleepy, you can also try otc benedryll There is also a lotion called Sarno that is mentholated that helps for awhile........the Aveeno baths are good too. It eventually started to diminish, and now I still itch here and there, but I don't really notice because it's been so long, I can't wear anything with a tag though, it will make me insane and some other clothing. I hope yours calms down soon, just keep bugging the doctors.

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