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Exfoliative Keratolysis
I have suffered with Exfoliative Keratolysis on my hands and feet for 27 years now.
In fact it was only by going online recently that I finally learned the exact name of this condition. No doctor I saw ever put a name to it other than "It's some type of dematitis or exzema." As like many others, I went through all the standard treatments including topical steroids. The ONLY times it has completely cleared was when I would get a cortizone injection in my bad shoulder as well as the one time I was put on a Prednisone treatment for an eye infection. That's it. I live with it. But I would like to know if anyone has an idea as to what brings it on in the first place. Why, out of the blue, does it appear? I have no allergies nor exposures past or present to chemicals or the like. Any ideas? Any treatments that work?
Thanks!
In fact it was only by going online recently that I finally learned the exact name of this condition. No doctor I saw ever put a name to it other than "It's some type of dematitis or exzema." As like many others, I went through all the standard treatments including topical steroids. The ONLY times it has completely cleared was when I would get a cortizone injection in my bad shoulder as well as the one time I was put on a Prednisone treatment for an eye infection. That's it. I live with it. But I would like to know if anyone has an idea as to what brings it on in the first place. Why, out of the blue, does it appear? I have no allergies nor exposures past or present to chemicals or the like. Any ideas? Any treatments that work?
Thanks!
I'm sorry.
It didn't work. The blisters came back with a vengeance and this time they look 'infected' and for the first time they are painful. I think using the pumice stone irritated my skin.
I'm still applying papaw and coconut oil. It does work on reducing the peeling.
Some days I feel like giving up but then I remember I did try to ignore the EK once and it got worse.
It didn't work. The blisters came back with a vengeance and this time they look 'infected' and for the first time they are painful. I think using the pumice stone irritated my skin.
I'm still applying papaw and coconut oil. It does work on reducing the peeling.
Some days I feel like giving up but then I remember I did try to ignore the EK once and it got worse.
Like the majority of people here I finally diagnosed myself: exfoliative keratolysis thanks to Dr Google. I did see a doctor months ago but all she said was 'it's eczema, wear rubber gloves when washing up'. Umm I do. That was as far as we got.
I tried Urea cream but all that did was make the peeling less obvious. Mine doesn't get better or worse seasonally. It's a continuous cycle of little red dots that turn into little white blisters that then 'burst' into little circles of peeling that spread out then before the peeling heals I get little red dots then little white blisters then peeling .... and on it goes. It's not itchy or painful but I do seem to have a kind of numbness in the area.
I've tried aloe vera, over the counter Urea cream, lavender oil and papaw ointment. I haven't avoided water, my will for cleanliness is too strong! Then I read Joe's treatment of exfoliating. It's worked better than anything else I've tried in conjunction with using papaw ointment and pure coconut oil with white cotton gloves. It hasn't 'cured' the EK but has made it so much better.
Every day I use a pumice stone and rub the red dots/blisters off. Then I mix Lucas's Papaw (available in Australia) and Pure Coconut Oil on the area then wear a cotton glove 24/7 at home. I re-apply the papaw and oil every few hours. When I first started this treatment, 3 weeks ago, I wore the glove at work too. I don't wear the glove at work now but I still need to slather on the papaw ointment every couple of hours or it starts looking poxy again.
It's reached the stage now that I can go out in public and not scare people. You'd have to look closely to see the slight peeling I have now.
I believe it's an auto-immune disease. They say if you have one auto-immune disease others will follow. I've had about 5 of them i.e fibromyalgia, polymyalgia, controlled Type 2 Diabetes, Rheumatoid Arthritis, chronic urticaria and angioedema. Funnily when the EK appeared my chronic urticaria and angioedema went into remission. I'm happy about that! I'd rather deal with EK than throat and tongue swelling and landing in ER. (4 times in 4 years). Yay!
I tried Urea cream but all that did was make the peeling less obvious. Mine doesn't get better or worse seasonally. It's a continuous cycle of little red dots that turn into little white blisters that then 'burst' into little circles of peeling that spread out then before the peeling heals I get little red dots then little white blisters then peeling .... and on it goes. It's not itchy or painful but I do seem to have a kind of numbness in the area.
I've tried aloe vera, over the counter Urea cream, lavender oil and papaw ointment. I haven't avoided water, my will for cleanliness is too strong! Then I read Joe's treatment of exfoliating. It's worked better than anything else I've tried in conjunction with using papaw ointment and pure coconut oil with white cotton gloves. It hasn't 'cured' the EK but has made it so much better.
Every day I use a pumice stone and rub the red dots/blisters off. Then I mix Lucas's Papaw (available in Australia) and Pure Coconut Oil on the area then wear a cotton glove 24/7 at home. I re-apply the papaw and oil every few hours. When I first started this treatment, 3 weeks ago, I wore the glove at work too. I don't wear the glove at work now but I still need to slather on the papaw ointment every couple of hours or it starts looking poxy again.
It's reached the stage now that I can go out in public and not scare people. You'd have to look closely to see the slight peeling I have now.
I believe it's an auto-immune disease. They say if you have one auto-immune disease others will follow. I've had about 5 of them i.e fibromyalgia, polymyalgia, controlled Type 2 Diabetes, Rheumatoid Arthritis, chronic urticaria and angioedema. Funnily when the EK appeared my chronic urticaria and angioedema went into remission. I'm happy about that! I'd rather deal with EK than throat and tongue swelling and landing in ER. (4 times in 4 years). Yay!
My 11 year old son has E K and had allergy tests done. He's allergic to Mercaptobenzothiazole, bronopol (preservative), mercapto mix and balsam of peru. His dermatologist told him to avoid these things (which is nion impossible) but they are the cause of his E K.
His hospital also make him a special cream which really does help.
So for everyone who suffers demand Allergy tests and ask your dermatologist to contact Gloucester Royal Hospital UK for the ingredients of Chelsea Night Mix.
His hospital also make him a special cream which really does help.
So for everyone who suffers demand Allergy tests and ask your dermatologist to contact Gloucester Royal Hospital UK for the ingredients of Chelsea Night Mix.
I Suffer from EK for 10 years.
Does anyone tried magnesium intake?
Some nails and the skin under it is also abnormal.
Does anyone tried magnesium intake?
Some nails and the skin under it is also abnormal.
Two days ago, it was an important day in my life. For the first time in about 25 years, and thanks to this forum, I found out the name of the problem that is affecting my hands and feet for this long: exfoliative keratolysis. None of the 4 or 5 dermatologists I'd seen could even name it.
It's been a long reading, but I've read through all your comments. Many of them, very interesting.
I'll probably post many things, but there is a first question that hits my curiosity. I'm not sure, but this may be one of the most active forums about EK in the world. If you do a web search, you find it. Whoever wants to find it, will find it. So, if there was someone in the world doing serious research on this specific topic (EK), I mean in a good lab, being paid with public or private money, trying to go to the ROOT of this problem, along a biochemical/genetic line of study, don't you guys think that he/she would have already searched for that topic, and would have found this forum? If so, why hasn't he/she said anything? Something like "I work in a team that is assessing possible genetic correlation between individuals who suffer this condition", or "we are studying lack of enzyme XXXX, which might be responsible for the dehydration". Anything that could give us some hope, or at least that could make us think that someone in this planet, with the appropriate background and material resources, is devoting time to our specific problem, is trying to find its root cause, and has an enthusiasm to find a cure. Because it is good that we don't give up, and try things by ourselves, like the ceramides creams, the gloves, or the sandpaper, but this is sad. I can't believe that there are zero resources in the world being (seriously) devoted to this, but I don't see any comment on that line in this forum. Is it confidentiality? They don't have to reveal any detail. A few words could mean a lot, to us. And I don't know about the dermatologists you've met, but the ones I've met will never find a cure. You can't finish a journey for which you don't make the first step.
So, if there is a person doing serious lab research about exfoliative keratolysis who is reading this forum, please give us a sign. We don't need much details. Just a sign, up to where you are allowed to. Thank you.
César
It's been a long reading, but I've read through all your comments. Many of them, very interesting.
I'll probably post many things, but there is a first question that hits my curiosity. I'm not sure, but this may be one of the most active forums about EK in the world. If you do a web search, you find it. Whoever wants to find it, will find it. So, if there was someone in the world doing serious research on this specific topic (EK), I mean in a good lab, being paid with public or private money, trying to go to the ROOT of this problem, along a biochemical/genetic line of study, don't you guys think that he/she would have already searched for that topic, and would have found this forum? If so, why hasn't he/she said anything? Something like "I work in a team that is assessing possible genetic correlation between individuals who suffer this condition", or "we are studying lack of enzyme XXXX, which might be responsible for the dehydration". Anything that could give us some hope, or at least that could make us think that someone in this planet, with the appropriate background and material resources, is devoting time to our specific problem, is trying to find its root cause, and has an enthusiasm to find a cure. Because it is good that we don't give up, and try things by ourselves, like the ceramides creams, the gloves, or the sandpaper, but this is sad. I can't believe that there are zero resources in the world being (seriously) devoted to this, but I don't see any comment on that line in this forum. Is it confidentiality? They don't have to reveal any detail. A few words could mean a lot, to us. And I don't know about the dermatologists you've met, but the ones I've met will never find a cure. You can't finish a journey for which you don't make the first step.
So, if there is a person doing serious lab research about exfoliative keratolysis who is reading this forum, please give us a sign. We don't need much details. Just a sign, up to where you are allowed to. Thank you.
César
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