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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!
248 Responses
Avatar universal
I had just written a 5 line comment and my registration did not allow me to post it. After I got a new password the comment had been errased. I am trying to see what happens this time. This forum web is pretty uncertain.
Avatar universal
Well, it seems to have worked. I have a comments earlier on under "thumb peeling". I don't know if you have seen it. My condition seems a lower intensity than yours but could have the same cause. I was following the reports from someone under the name bbally who was having his skin cultured to check for possible fungus or bacteria. The comment thread was unexpectedly closed and I have not seen any comment from him since. Myself I am trying an antibiotic cream and see if it works. I know that water makes it worse, but not so sure about sea water.
Avatar universal
I had a biopsy done years ago with no results.
I have used over the counter anti-biotic ointments but it hasn't helped other than to act as a lubricant, much like Vaseline. Everything seems to aggravate it including stress.
I was told that much like any other exczema or dermatitis, no known causes or cures.
Avatar universal
Thanks for the info, although sounds very hopeless. A biopsy is different from a culture in an apropriate media. For myself, It's hard to believe that after 50 yrs of having no skin problems something just shows up due to ? and because of being in a particular area and spreading down the thumb slowly I tend to think is some bug rather than stress. I am trying and learning whatever I can.
Avatar universal
As I mentioned before, steroids cleared it up but obviously that could never be a long term solution. I also had allergy patch testing done but no reactions to anything.
Every explanation I've read has been vague at best. But let me know how the culture thing goes. Even if I never get rid of it I'd find some consolation in knowing the cause!
Avatar universal
Also forgot to mention that I have read that a lot of these types of skin disorders can be a reaction to stress / nerves possibly from a critical life event. Don't know if there's any truth to that possibility but something to think about. I do know that my condition worsened recently after my best friend died suddenly in April. Within a week I noticed a marked increase in peeling and cracking and it hasn't gotten any better. My original outbreak with this came at the same time I was going through a divorce in 1982.
Connections?
Avatar universal
I had never thought about possible connections to stressful periods, but it may be. The first time it happened to me I was organizing an exhibit and having a lot of stress because of family matters. Later it has shown up at different times, and since I have been stressed or depresed often, it hard to say. This last time occurred after a very stressful period as well and it has not dissapeared yet but it's better now. I will pay more attention to it from now on.  
Avatar universal
i have had for 15 yrs  tried lots of therapy  have lived in tropics  and high desert...no stress  then high stress  doesnt seem to make a difference  it only gets worse month by month   waiting for someone to find a remedy  
Avatar universal
i have had for 15 yrs  tried lots of therapy  have lived in tropics  and high desert...no stress  then high stress  doesnt seem to make a difference  it only gets worse month by month   waiting for someone to find a remedy  
Avatar universal
dont waste your money on dermitologists they are no help  and yes the creams only act as a moistener to help with cracking   i actually find relief with gloves to keep the air off
has anyone noticed their fingernails grow really fast with an outbreak?

i have never had an outbreak on the outer side of hands..only where the sun doesnt fully reach..on the palms and inside of fingers   i was thinking light therapy may help  a uv light? anyone tried?

Avatar universal
I suffer from Exfoliative Keratolysis now about 10 years...
Tried everything...biopsie, test of allergies, bloodtest, etc...
Every doctor and dermatologist in Belgium I have visited.
No doc ever called it that whay.
Till one... he knew directly a cure: he prescribeded me Prednisolone, corticosteroids and I was treated by that doctor 3 times a week with UV-radiation. I had to put a verry fat layer of cream with lots of ureum (urea) I guess in it on my handpalms and foot soles and then take place in a UV cabine for a few minutes. This was the only method that had result. But I stopped with it because due of the cortico's my haire felt out...etc.
I lived with it for so many years now... I don't want to poison my body all the time taking cortico's etc... and now my hand are back peeling all the time...!!! frustrating!!! (sorry for the spelling mistakes) greeting to all
Avatar universal
Exfoliative Keratolysis


Please note that any medically related information provided in this report/advice is not intended as a substitute for advice from any registered physician or other healthcare professional.  Whilst I have endeavored to ensure that all information provided in this report/advice is accurate and up to date, I take no responsibility for any error or omission relating to this information, nor any responsibility for what any person may or may not do as a result of reading this report/advice.

I am a 50+ year old male and have had the condition Exfoliative Keratolysis (EK) for over 35 years, and have tried most if not all (cures) – Doctors, Dermatologists, Naturopaths, Herbalists and several ‘Theorists’.  Have been researching and experimenting with my EK for over 30 years. My parents were in medicine, and so I had some inside knowledge and access to research, although a lot of it (some unqualified) is now available on the net. I don't know everything, but I do know what works for my EK.  I believe that EK 'management' is really a matter of trial and error – unlike some medical conditions there is no ‘penicillin’ type cure (yet).

The following is a brief summary of what works and doesn't work for me, and my thoughts on EK.  I am providing this in the hope it may help some others.  

The first step I had to make was to accept that my EK condition will not kill me, but it is something I have to live with and have to manage myself.  In my experience there is no miracle pill/lotion/cream I can get that will cure it, and there is no plant growing on Mount Himalaya or in the Amazon Jungle that will either.  Some things make it better for a while, but there is no permanent cure - although it does run its course and 'go away' in some people. My advice to others is to accept this, then you can find out what works for you and then implement a management regime (and change if needed, and try new things sometimes).  Maybe this will result in a cure, and maybe it may last a lifetime.

My hands do not blister - they used to, but they have not done so since the condition started many many years ago.  I believe that this lack of blistering and some associated problem with the natural healing processes in the particular skin type that EK affects, is the core of the issue.

At its worst my hands would be completely 'stripped' of 'good' skin - the fact that I used to play so many bat and ball sports did not help (life is too short).  I wish I had learned my management regime a lot earlier - but that's how it goes.

My EK gets worse when the weather is hot or after periods of excessive hand contact activity (eg hammering nails, fixing cars).  In winter where I live now, it gets down to -10C (15F) and my EK all but disappears.  If someone was to go somewhere really cold for 2-3 days and expose their hands to the cold, and if they get better and the EK dissipates, then they on the same page as myself. I believe the cold helping is due to the healing process working better when the skin temperature is lower and less moisture is lost than when the skin temperature is high.

EK is not due to stress - but stress can initially bring it on (it would come sooner or later anyway) and stress can make it worse.

Topical steroids/cortisone and injections are not the answer for me - they 'repair' the damage, but EK always comes back (sometimes worse).  There are many other prescription drugs and natural options/cure available, and for me they all do the same.  Going down this path lead to a cycle of repair and damage, but no cure.  However, I have learned that EK may 'burn out' for some people who take this  course of action.

The EK condition is somehow related to moisture loss in the specific epidermis layer of skin that is only on two parts of the body and the natural healing mechanism of the skin.  I believe that this is why EK is only on the hands and sometimes on the feet.  The skin on the hands and feet is unique and is designed to be damaged and to heal quickly.  To counter the problem, I keep my hands moisturised, avoid damaging my hands (eg do not hammer nails), and keep those things away from my hands that make EK worse.  These are some of the things I do and that work for me, and maybe for others.

Wear light cotton gloves when doing light work with hands at home/work (am doing so now as typing can affect the finger ends), and wear heavy gloves over them when needing to do hard work (gardening, lifting furniture, etc).  Do not wear the cotton gloves for too long as they will after 20-30 mins start to dry out the skin.  Use a Urea based ‘repair’ cream 4-6 times daily when the condition flares, and 2 times a day when it has abated (after a shower/bath is best absorption time).  

Get a non-greasy quick absorbing hand moisturiser (for when greasy hands are a problem eg meeting people) - make sure it has no added chemicals or perfumes. Keep a clean dry cloth in car/desk (you never know when you need to quickly dry the greasy hands).  Sometimes I wear the cotton gloves when driving long distances – cream underneath and re-apply at least every hour.

Never let any ‘normal’ soaps, chemicals or solvents touch the hands - wear elastic/rubber gloves when in shower/bath (seal with tape around wrists), when applying things like hair products or after shave, and when doing the washing/cleaning.  Wash hands in a dermatological chemical free handwash, and/or use special non-soap soaps.

When seriously bad (usually due to being slack with my management regime) I smother  the hands thickly with the Urea based cream before going to bed and cover hands with a new unwashed pair of cotton socks (gives a quick repair) – this aids the healing processes and makes it better.  If desperate for a serious ‘makeover’ (job interview, wedding, etc), I use a steroid/cortisone ointment (not cream) and apply (not thickly) to hands at night and cover with non-allergenic medical gloves (very thin plastic type material specifically for the application of creams/ointments to the hands – not the rubber gloves).  This usually ‘fixes up‘ the hands for a day or two, but I know the condition will flare again later (has to be worth it to do it).

Basically, the key for me is to manage the condition by avoiding as much as possible anything that makes it worse, and to provide the skin with the right assistance to help it heal. Hopefully, like for some others, the condition will run its course and go away.  Until then I use my management regime to minimise the negative affects EK can have (has had in the past) on my day to day life.

PS - Photochemotherapy is an option I have not tried (yet).  It is a new treatment and new treatments always have their bugs - the technicians and doctors need experience to work out what works best (and more importantly what doesn't).  I have decided to wait a few years for the technique to become more 'mainstream' and will be keeping my eye on it.






1 Comments
Hi, I am 30 years old and am so happy to have found this post. Your post makes so much sense. A question though? Do your fingers ever swell? I find mine are tight and inflamed (and I have always felt that there is an inability for them to heal themselves) right before they really start a bad peel cycle. Thoughts?

Thanks!
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