Atopic Dermatitis Cure?
I am not a doctor. There is no medical advice here, just what I have witnessed and read.
Here’s the story so far:
Happy New Year! It’s definitely a happy new year here. After the horrendous time my wife suffered with the withdrawal during November and December, the year has started brilliantly, with a body covered in beautiful soft skin, which is not very itchy. The itchiness during November and December was the worst that she had experienced, the eczema that appeared on her knees was very depressing for her, the rough, red, blotchy, itchy arms and stomach drove her nuts and the red face was embarrassing. Sometime in December, she said that she thought she was getting worse. She was very depressed.
The week leading up to Christmas was not very special. She had improved a lot by Christmas day but looked a bit unwell, but by the end of the year, the flares had stopped, her face wasn’t red, the rough skin on her stomach and arms was becoming smooth and soft and she was feeling quite well. The eczema on her knees had reduced a lot. On the 1st Jan (which marks one year since she started this nightmare) she was looking and feeling very good. For the last six days, we’ve had a swim at the beach every day. I’ve been trying to get her to do this for ages. After watching a youtube video of Japanese dermatologist Dr Fukaya taking a bunch of eczema sufferers to the beach for two weeks and seeing the massive improvement in their skin condition, she decided to do it herself. She currently has beautiful soft skin on most of her body. Her arms and stomach are just a bit dry. The eczema on her knees is more or less gone. For the first time in almost a year, she’s taken the cotton arm sleeves off that shes worn to reduce the irritation. She’s not very itchy and feels great. The beach water stings and she needs a bath asap after the beach, but each trip to the beach has seen a massive improvement.
Hopefully she will just improve a little every day now and not have any more flares. Six months ago Dr Rapaport predicted that she will be finished this withdrawal by the middle of this year. Hopefully he’s right. her back and legs 9apart from her knees seem to be fully cured. The rest of her is still a bit dry.
For those who are interested, her routine since the beginning has included long, hot baths everyday, followed by a cool shower and then a fan to help cool off/dry off. For moisturizing she’s mostly used sorbelene based moisturizers and more recently jojoba oil. She’s tried many anti-itch creams to try and give her some relief, but I don’t think she’s found any miracle creams. She’s worn cotton arm sleeves and a cotton cloth around her neck to keep the air off her skin, which irritates her. She occasionally used antihistamines and sleeping pills but very rarely. A doctor in Japan, who specializes in helping withdrawing patients, prescribed her two antihistamines, one for the day and one for the night, and never mentioned to her that they make you drowsy. The medicines basically kept her half asleep all the time. An induced coma would have been more useful with coping with the effects of the withdrawal, and equally as irresponsible. Apart from that, she has been virtually medicine and doctor free for the withdrawal.
Below I’ve included some photos of her taken today. I’ve also included a link to Dr Fukaya’s youtube visit to the beach and a link to Dr Fukaya’s blog. Dr Fukaya was been a champion of the steroid cream poisoning/withdrawal cause in Japan, but having become very frustrated with the dermatology industry, works as a cosmetic surgeon these days, but is obviously still very interested in the steroid cream debacle. Japan is way ahead of the rest of the world on this, thanks to Dr Fukaya. For some reason, Japan has a lot of people with eczema problems. I don’t know if it’s from bad medicine or nature. If you’re looking for Japanese withdrawal blogs or information, of which there is plenty on the net, you’ll need to work out how to search for “atopy” using the Japanese character set.
Our 12 month photos.
Dr Fukaya’s beach trip
motatnnh and motoclinic are both Dr Fukaya’s youtube channels. They are a mixture of his dermatology and cosmetic surgery work.
http://blog.m3.com/steroidwithdrawal google translate might be helpful!
Update No9 – 22nd December 2011
I know there a a few people reading this blog and gauging there own progress (or lack there of) by the progress of my wife. In the last couple of days, there’s been a big improvement in the skin condition and I thought I’d should share it with you. Her current skin condition is actually improving very quickly at the moment. She’s had a couple of months where it was terrible, after looking really nice, spent last weekend on a farm scratching herself to pieces and this afternoon is looking as good as she’s looked for a long time. I noticed yesterday that her stomach is getting really soft, after being rough for a few months.Her arms, which have given her hell for the last few months, are looking great today. Her legs, bum ,back have beautiful skin again and the eczema on her knees is almost gone. Her face is very smooth, but still red from the scratching, and dark. Things change quickly with the withdrawal. Rough and itchy one day to smooth and nice the next. Today she noticed that her elbows (outside) are in really good condition. She hasn’t seen them like this for years.
Hopefully I don’t have any more bad news to report again. The last couple of months were hell but her condition has changed very quickly and she’s acting alive and well again.
Merry Christmas everyone.
Update No8 – 12th December 2011
The last month has certainly been a difficult month for her. At the end of the tenth month, her face, legs, back and sides were looking and feeling absolutely fantastic. They were completely eczema free, smooth, oily, not itchy and looked very healthy. Her arms were still very rough and itchy and giving her a hard time. Unfortunately a new ‘flare’ started a month ago and she spent a month with a red face, a dry scaley stomach, extremely itchy arms and a big dose of eczema appeared in her knees. One of her legs became swollen for a day and the lymph nodes in her groin became very enlarged. The eczema in her knees was very depressing for her as she had been eczema free for a long time and her legs had been ’cured’ for months. We have been told that it’s normal for eczema to appear during a flare.
After about a month of this new flare, her skin settled down again, the eczema in her knees started disappearing, and her arms and stomach improved a lot. It looked like the forward progress had started again.
So, almost two weeks in to the twelfth month, her back is still beautiful (soft, oily, eczema free) , her stomach is clearing up again, her legs are soft and oily, with just a small amount of eczema around the knees (95% cleared up), her face is smooth again and not red and her arms are clearing up but still dry. A couple of swims at the beach recently seemed to help a lot, although this might have been a coincidence. She’s back to normal sleeping hours again, rather than the reversed sleeping pattern that she had a while ago. Her skin is all normal thickness now. The thin that was incredibly thick from thirty of scratching is normal and the areas which were incredibly thin and frail looking are normal now. She’s starting to look quite healthy.
The whole withdrawal has been characterized by two steps forward and one step backwards. It’s very tough on her mentally. Fighting the depresion is just as hard as fighting the withdrawal symptons. The most irritating withdrawal sympton is the extreme itchiness in an area which is flaring. She will end up in trance like state with the scratching. These areas often get painful too.
Hopefully Santa brings an end to this nightmare.
To summarize where we’re up to, from an appearance point of view, there’s been a huge improvement in the last week. Most of the redness is gone, most of the red dots on her stomach are gone and her stomach is getting softer, the eczema in her knees is almost gone. Her skin all over looks like normal thickness skin. Some of it is dry and a bit rough. Her back still has soft, beautiful, eczema free, oily skin (looks perfect) and her legs are becoming very soft and oily again. Her face is smooth but still goes red often. Her arms have cleared up dramatically in the last week. I worked out a long time ago that how she looks and how she feels are quite different. She doesn’t feel great. She’s sore, still itchy and gets depressed easily.
For those of you who are doing or are thinking of doing this withdrawal, there is a fantastic google group of ‘withdrawers’ who will support you. The group is growing in size rapidly. Chances are you won’t get much support from your doctor but it is important to find a sympathetic doctor during the withdrawal. The chance of infection, other health problems and eye damage is all very real during the withdrawal. See the links page for the google group.
Update No7 – 6th Nov 2011
We’ve just had a few weeks of sleepless nights, sore arms and the never ending itchiness, mainly on her arms, but sometimes everywhere. Lately, her skins been blotchy somedays and smooth on other days. Her stomach and shoulders are clearing up very nicely and her arms are looking more healthy every day. Her face is still doing small cycles where it goes a little red but no peeling anymore. With the lack of sleep, the sore arms and sometimes rough skin on her arms and shouders, she gets quite depressed, but the reality is that the appearance of her skin all over is now almost normal on most days, just a little dry. She is definately closer to the finish of this nightmare than the beginnning. I couldn’t guess though when the finish will be. It’s very obvious that in a years time, she will have beautiful (eczema free) skin all over. I wouldn’t be surprised if she ends up with nicer skin that most 40 year olds. Her legs and back which have been cured for ages are actually continuing to get softer and nicer. What’s she’s been through (still going through) is like the most dramatic chemical peel you could ever pay for. No thanks to the medical community for this by the way. It’s been a complety terrible year for her so far undoing the damage that the doctors have inflicted on her.
Update No 6 – 23 Oct 2011
The last flare has now finished. I’m now looking at very healthy skin on her face, which is not red or swollen.
The itchiness during the last flare was intense, especially on her arms. She’s found she can’t sleep much at night anymore and gets most of her sleep between about 5am and 11am.
There is no eczema anywhere.
Her legs, back and sides (of the torso) have beautiful soft healthy skin. Her front is almost as good. The other day she got some large pimples on her front. In a Japanese book on steroid cream withdrawal, it says that big pimples are a sign that an area is completely cured. She had these on her legs a long time ago. I haven’t heard of anyone else experiencing this though.
Her arms, hands and shoulders have given her a very hard time lately. They went through a cycle where the skin was very rough and they were very itchy. The itchiness is now tolerable and the skin on her arms and hands is now normal colour, normal thickness and looks quite healthy, just very dry.
Her neck, which has suffered thirty years of scratching and had very thick skin, looks very good now. Not quite cured though.
From an itchiness point of view, the last month has been torture. It’s a relief that the flare has finished.
Her face still goes red when she gets out of the bath. This had stopped or a while a few months ago but has returned unfortunately.
She’s looking quite healthy now. Her wrists have been hurting a lot lately, probably due to too much scratching. She’s quite miserable too. I think she finds it hard to see the improvements sometimes when she is tired and sore. You wouldn’t wish the withdrawal on anyone.
(I’ve just read what I’ve written and realized that everything is comparative. When I say that the itchiness is now tolerable, it’s actually still really annoying, just not enough to drive her insane anymore. As areas heal, they become very itchy and there’s not much relief available. The skin on her face and arms, which was in poor condition and is now looking quite healthy, is still lacking the colour and the sheen of healthy skin. We’re far from finished this frustrating journey, but the huge improvement so far is beyond dispute.)
Update No 5 – 6th Oct 2011
Back to the red face, which is sometimes peeling a little, as well as itchy, sore arms, sore body, depression and sleepless nights. This really is a tough gig.
Here’s some thing I wrote on the google group (topical steroid cream withdrawal support group). There’s a lot of adults and kids doing it really hard there.
For us, after nine months, her legs and torso are completely cured. The skin is beautiful.
Her face has started going through the cycles again after a few months break. Basically red one day, smooth the next, but often colourless.
Her arms and wrists are still giving her a very hard time, but the skin on her wrists which was incredibly thin at the beginning of the year, is now normal, just dry and itchy.
Her eyes aren’t itchy anymore. Before the withdrawal, they were always itchy.
Although not completely cured yet, the improvement has been dramatic. She has no regrets about having gone on this trip to hell even though it’s the toughest thing she’s ever done, and it’s not over The withdrawal has certainly strained our marriage, had an adverse affect on our family business and made her very miserable, but still no regrets. In June, Dr Rap said that she still had a year to go. She gets depressed and demoralized, but still no regrets. 18 months of her life to regain the quality of life that she should expect to have is worth the pain.
Update No 4 – end of ninth month of topical steroid cream withdrawal (25th September 2011)
Two weeks ago, the long period of no flares and continual improvement came to an end when I woke up to see a face covered in peeling skin. This was followed by two weeks of a red , sometimes swollen face, and two weeks of the itchiest arms she’s ever had. It drove her nuts. The flare has now ended and we’re back to a very healthy looking face with smooth skin. The rest of her body just continues to improve every day. The itchiness has eased back to how it was before this flare, which is generally tolerable and sometimes out of control. The arms which have been incredibly itchy usually look very healthy, just a bit dry, and not very itchy, but are dry and scaley on other days. Prior to the withdrawal, the skin on her arms and wrists were so thin, they looked like the skin of a 90 year old.
Contrary to what we’ve always been told by dermatologists, there is still no sign of any eczema. So much for it being incurable. All I’ve seen is skin going from being in poor condition to skin that is starting to look very normal. Most of her skin is oily, soft and eczema free. A couple of months ago, she commented on how soft and nice the skin on her legs and torso is and that she doesn’t remember ever having such nice skin. The quality, appearance, softness and oiliness of this skin has continued to improve. She doesn’t need to use any moisturizing cream on her legs or torso. They are cured. It’s amazing that the dermatologists diagnosis of her described her condition as ‘undertreated’. The reality couldn’t have been more opposite. ‘Poisoned’ would have been more accurate. After all those years of medical school, a dermatologist can’t recognize the difference between poisoning and a genuine condition on one of the most common skin complaints. It seems a bit hard to believe!
In June, we were advised that she had about one year to go with the withdrawal. It’s quite obvious that by then, the skin all over will be lovely. It’s just a shame that the path there is such a journey. It’s been a painful and very demoralizing journey for her so far. It’s certainly had an adverse affect on our family too, but the alternative to going through this drug withdrawal, was to keep using the cream and watching the quality of her life get worse and worse. The psychological effect of having bad, itchy skin and constantly having sleepless nights is far from helpful. She’s spent the last 30 of her 40 years gradually withdrawing from society because of this. Apart from all of the obvious side effects, there’s other side effects which you won’t read about on the product information but are very real. Before she stopped using the creams, if I cuddled up to her in the morning and put a cold hand on her stomach, she had to rush to the toilet with diarrhea. (maybe it was just me!) She always had an irritable bowel. The moment she stopped using the cream, this was not a problem any more. She always had itchy eyes. She’s tried many different eye drops to cure this but nothing ever worked. As soon as she stopped using the cream, her eyes weren’t itchy any more.
It’s such a ridiculous situation that even when proper research has proved that the current treatment of a small eczema problem can make the eczema far worse, there are countless cured people in Japan and around the world, that doctors can’t see or recognize the symptoms of overuse of the cream, and continue to ruin people’s lives. My only personal experience with dermatitis and dermatologists was for a foot eczema which became quite large. I was prescribed steroid cream, which didn’t help, and told that it was incurable. I noticed that it became worse in winter and not so bad in summer. I worked out that all it needed was sunlight. It has now been cured for a few years. I’ve since had a similar eczema on my other foot, and it has reacted the same way to sunlight. My dermatologist told me it was incurable. Something tells me that this profession is the laughing stock of legitimate doctors. Ten years ago when my wife was pregnant, her obstetrician asked her what she was doing about her eczema. She told him that she was seeing a dermatologist. He laughed, said to her “that’s not a profession”, and asked what she was really doing about her eczema.
Through this website and through the google group (find the link on the links page), there has been a constant stream of people contacting me about their own steroid cream overuse. Their stories are all the same. A small eczema problem becomes a nightmare once they start treating it with the ‘help’ of a dermatologist. I am only aware of one person where their doctor advised them about steroid cream overuse and the withdrawal of it. For those that have chosen to ‘withdraw’ from this poison, the withdrawal process and side effects such as unbelievable itchiness , has been much the same for everyone. For some people, they have been using the strongest creams and immunosuppressants, and for others, they’ve got addicted on the 1% hydrocortisone available without a doctors prescription. The withdrawal process has been hell on earth for everyone that has tried it. I’m sure that for some people the cream is useful but why is it that doctors don’t know how to prescribe the cream in a responsible way. If a patient sees them and they have a body covered in symptoms of steroid cream overuse, why would they prescribe much stronger steroid creams.
It’s interesting how persistent the ‘atopic industry’ can be. In Japan, the tide has already turned about topical steroid cream overuse, but even so, the industry won’t give up. Recently in Japan there was a story on TV about a ‘new treatment for atopic dermatitis” . The ‘new’ treatment involved treating the patient with topical steroid cream and then reducing its’ use. Wow!, now there’s some breaking news. It sounds more like the news of 1972.
Update No 3 (26th August 2011) End of eighth month of the withdrawal
In a nutshell, the gradual improvement of the skin condition has continued with no flares other than a few days with a slightly red face.
The cured area worked its way up the torso and her legs and torso now have beautiful, soft, healthy skin. Her face must be 99% cured. It looks great but still gets red occasionally. We went to the park one day and her face reacted with something (grass or maybe a dog she patted) and became extremely itchy. Her face was bright red that night from all of the scratching. It was ok again the next day. Her arms still have rough, dry skin. Before the withdrawal, they hardly had any skin left on them. The skin was very thin. Now it’s quite normal, just dry. The itchiness on the arms has continued and drives her crazy. The rest of her body is either cured or very close to it and there’s not much itchiness there. Other than the sometimes incessant itching, the withdrawal seems to sap the energy from her. I believe that this is quite normal. Distraction still seems to be the best cure for the itching.
I am still fascinated watching the process of the skin healing itself. Once all of the major changes have occured and the skin is looking normal, just dry and spotty, the cure seems to start from the extremities and work it’s way up. We saw this with the legs being cured from the ankes up, and continuing up the torso. Her fingers are now becoming quite smooth and soft again so I’m hoping that this will continue up her arms.
There is no eczema anywhere.
If you haven’t found it yet, there is a very active google group of people all doing the topical steroid cream withdrawal. You can find the link on my links page.
Update No 2 (28th July 2011) End of seventh month.
What an amazing month. Apart from one very mild flare on her face at the beginning of the month, there haven’t been any flares or other dramatic events. What has happened though is that her skin all over has continued getting smoother and healthier looking. The thickness and colour of the skin is starting to look very good. There’s almost no eczema anywhere. Even her arms and wrists which where giving her a really hard time are looking much better. The itchiness is mainly at night when she goes to bed, on her wrists and neck. It’s not as bad as it used to be. Sometimes her body is a bit sore. Her legs are definitely cured, her torso is almost as good, her arms are a bit dry, and her face is getting better and better every day and looks very nice. Her face must be extremely close to being cured. Her legs are always oily and beautiful. It looks like she’s over all the bad withdrawal effects and hopefully will just keep on getting better without even noticing. A month or so ago, Dr Rapaport said she probably still has a year to go. I think she will be cured much sooner than that. It’s looking harder and harder for a dermatologist to be able to look me in the eye and tell me that they know what they’re doing. I really wonder if they’re just evil!
Update No 1 (16th July 2011)
(Hopefully) we’ve reached the point were life gets much easier. Following the massive eruption of red spots on her face a few weeks ago, her face has been through one very mild cycle and has had beautiful skin on it for the last week or so which is not itchy. We know her face is not cured yet, but each cycle is followed by a huge improvement. Her face is still a bit dry but she’s looking very normal. The legs are still beautiful, although there is a very small amount of eczema behind her knees. Her torso is still covered in spots but the skin quality is getting nicer and nicer. It’s obvious that her torso will match her legs soon. The arms/wrists have settled down and although they have long way to go, the skin is looking much healthier. She’s full of energy now, which I haven’t seen for many years, and is getting a good nights sleep, also something which is new. The amount of sweat has been unbelievable. The temperature has been extremely hot and humid and the quantity of sweat has been mind boggling. She wasn’t much of a sweater before this. Hopefully it’s part of her body detoxing.
Basically a very happy, energetic girl who is starting to look very healthy. Hopefully her face is fully cured soon so that she can not worry about going out in public, and the rest of her body can take as long as it takes. After every cycle, the skin quality improves dramatically and the itchiness is greatly reduced.