The Itch - PBC or nor PBC - Just because yo... - PBC Foundation

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The Itch - PBC or nor PBC - Just because you have PBC doesn't mean you can't itch for other reasons.

JohnMalaney profile image
7 Replies

We are just recovering from several months of itch hell, those of you who experience the full blown itch will know the experience, Sue has been scratching the worst parts till the skin breaks, getting up in the middle of the night because the itch wakes her up and collapsing in tears occasionally at the bloody awfulness of it all. We finally managed to get referred to a skin specialist and it turn out she has eczema over a large part of large body she's been prescribed two different strengths of steroid cream for more and less sensitive areas and been told to keep using it intensively until there is no sign of the eczema.

This contradicted the advice we were given by out GP who initially prescribed steroid cream for occasional use to control the itch. The itch has got so much better since using the cream and her back and legs are healing nicely. Unfortunately it did not seem to help the itch on her fingers.

Sue and I then started to wonder if this could actually be a 3rd itch. She has now changed the hand wash she uses to an all natural ingredients product from 'Faith in Nature' bought through amazon and this does seem to be a lot milder, she has also swapped to ecover washing up liquid. These products are a lot more expensive that the normal ones we use so they are purely for her use.

I'm not saying this has cured the itch, a bad PBC day/week is still intolerable but she definitely has a problem with chemical sensitivity to cleaning products now.

She has tried to improve this using rubber gloves but needless to say they make her hands itch too. We are looking at moving to using disposable latex gloves but that may just create a different issue for her.

Early in her diagnosis Sue did go through a full allergy skin test and was found to be allergic to many things but the sensitivity has increased over time to the point where she cannot wear ear rings (metal allergy, including surgical steel and 9ct gold), has to carefully choose make-up (allergy to the preservative propyl gallate in lipstick gives her 'fish lips' and she has had a problem with some eye liners).

I'm really trying to highlight the fact that just because you are experiencing a terrible itch with PBC don't restrict your investigations to the one area, we did and it delayed improvements by 6 months.

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JohnMalaney
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7 Replies
butterflyEi profile image
butterflyEi

Thank you for this post JohnMalaney It is most interesting and valuable as I am guilty of thinking everything that is wrong with me is either PBC or age related. I am an itcher but it seems that mine is because of PBC as I have now responded to the medication given to me. Can your wife wear cotton? A friend who suffers with many skin allergies wears cotton gloves before putting on her latex gloves for the work she does.

best wishes

JohnMalaney profile image
JohnMalaney in reply tobutterflyEi

Hi butterflyEi yes she can wear cotton, I'll pass on that idea and we will give it a try. do a lot of work on y own cars and use disposable surgical gloves for that so she'f going to try those for some jobs but they won't be any use for wet jobs so your advice is very helpful. We are realising that we have to just say she can' do some jobs any more and I take them on but she gets frustrated if it needs doing and i'm not available

teddybear7 profile image
teddybear7

Very interesting & too true, I have a form of dermatitis & very dry skin, ( I leave piles where I walk😀) I plaster e45 cream on daily. But I can still tell the difference in the itch feeling. I've learnt which one it is by how it feels. It all takes time & trial & error. I wish you well T x

GrittyReads profile image
GrittyReads

I have always had delicate skin. Eczema as a child, teenager, and odd bits now. And, I'm prone to react to creams, products, washing powders, soaps, tablets, antibiotics, etc, etc. My GP is similar, and 2 years ago she suggested Aveeno products - I was very doubtful (beautiful TV stars advertising 'stuff' always turns me off rather than seducing me!). However, she is definitely a 'head-screwed on woman' so I tried it, and it has been great for me.

I use body wash for bath and showering, 'bath and skin wash oil' for face and removing any make-up (that is gorgeous, smells lovely but hard to find), and cream for body. Sadly they don't seem to do a really heavyweight cream, so I still plaster on E45 if I've let things go a bit ... Also, it's a bit more expensive, so shop around and buy when you see special offers. Most of my local shops sell it, apart from the oil, which they dropped pretty quickly (obviously not selling too well as more pricey) so now I check everywhere I go, and bulk buy when I se it. But I find it all lovely.

JohnMalaney profile image
JohnMalaney

Hui GrittyReads

My wife has worked her way through most moisturising products over the past few years but the two most successful 'heavyweight creams' were both prescribed by our GP. Dermol 500 cream is an emollient and body wash which she used for the past 3-4 years but she has now been 'upgraded' to Doublebase gel as a moisturiser. One minor issue with both these products is that they are provided in 500ml pumps and decanting them to a smaller container for weekends away etc requires some ingenuity especially the doublebae gel which does not flow as a liquid at all.

Wocket profile image
Wocket

My daughter is allergic to most metals even gold but she can wear titanium as it is not an alloy ie, made up of several kinds of metal. There is a web site that sells a choice of titanium earrings. If you want to know more let me know

JohnMalaney profile image
JohnMalaney

HI Wocket, Yes please, knowing someone else with a severe allergy can tolerate them gives me some hope I know my wife would love to be able to wear ear rings again.

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