Atopic Dermatitis Cure? Atopic Eczema 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:
Our Blog Update No 18-10th January 2014 -Withdrawal month No 37 (Beginning of year 4)
I’m sorry to the people who were following this blog and then found it wasn’t being updated anymore.
Last year, the year of no new posts, was a particularly difficult year for my wife with the withdrawal. For most of the year, the progress appeared to have stopped, she couldn’t sleep for much of the year, she looked terrible and was suicidal more than once. I decided to give the blog a rest until I could see what was happening. Late last year I was encouraging her to give up on the withdrawal and use the topical steroid cream again. I was hoping this might let her regain her life. To be honest, I wasn’t sure if using the cream again would actually improve the situation. The only eczema she has is a moderate dose behind her knees. Her face, arms and neck, which looked shocking for most of the year, don’t have eczema, but side effects of the withdrawal. It looks like the withdrawal might be a one way road. She didn’t give in to the cream so I have no idea what the result would have been.
When she started the withdrawal, she had “severe eczema of the midface and periorbital regions with severe findings also at the neck and limb flexures. Additionally there was widespread moderately severe eczema to the back, chest arms, wrists and thighs. The lichenification was consistent with the longstanding nature.” , according to Perth dermatologist, Dr Stephanie Weston, who examined her.
The doctor didn’t mention the extremely thin skin at her wrists, the spiderweb appearance of the very dry skin on her legs or the very dark colour of her skin all over her body.
After three years of total cessation of topical steroid cream, she now has beautiful skin from her toes up to her shoulders, with a small amount of eczema behind her knees. The skin is soft, natural looking and appears very healthy. Over the last six weeks or so, the skin on her arms has finally started to look like the cured areas of her body, but it’s still dry. Her hands, which have looked like the wrinkly hands of a 100 year person for the last few years, are finally starting to look like they’re improving, but they’ve got a long way to go. Her face, obviously the most important region for her, hasn’t let up since she started the withdrawal. Currently it’s normally dry when she wakes up in the morning, but has got to a stage where most people won’t notice that something’s not right during the day. It still gets red after a bath or a swim at the beach. The skin on her face seems to have regained a normal texture.
Last year, my sister informed me of two toddlers she knows, whose parents opted for the withdrawal option. They were both being treated by dermatologists in Perth, Australia for severe eczema with the use of steroid cream and wet wraps.
One of the parents realized that the treatment had no logic to it and stopped it. The child’s eczema disappeared and there were no withdrawal symptoms. I’ve never heard of this before but they were obviously very lucky. The other child went through 6 months of withdrawal hell and is now cured.
Just recently, I was told about a baby being treated for eczema at Princess Margaret Hospital in Perth (PMH). The parents had already tried topical steroid cream and noticed that it wasn’t working but making th eczema worse. A doctor they had seen in Japan had advised them to stop using the cream. The dermatologist at PMH gave them an ultimatum to use the cream or be reported to the Child Protection Unit, which can take legal custody of the child.
For my wife, the turning point in her improvement started late last year when she visited Toyotomi Onsen in Japan. (hot spring) This hot spring is famous in Japan for helping with skin problem. I believe that the water comes from a well originally drilled in the search for gas. She has visited this hot spring a few times before, during the withdrawal, and always got a lot of relief from it. I’m not sure if it helps with the healing, but it gives her a month or so of beautiful skin, normal sleep and sanity. The Japanese doctor mentioned there is another hot spring like this one in Uzbekistan and from reading this article, I think France might have one too.
By luck, her last visit to Toyotomi Onsen coincided with a meeting of a couple of “no steroid” dermatologists and about 30 patients/patients families to provide help and support for people going through the withdrawal. Apart from the advice from people who actually know what they’re talking about, the psychological help with brilliant. She will got there again a in few months. It’s the only way to make her look and feel great, even if it’s shortlived.
When she started this journey, there was only one website in English regarding the topic of steroid cream overuse and the withdrawal. There were many websites and blogs already in Japanese, but not easily accessible to no Japanese.
There are now around 50 blogs in English and a great website at www.itsan.org if you want to learn more.
That’s about it for today but I’ll update this blog more regularly now.
Our Blog Update No 17-6th December 2012 -Withdrawal month No 24
Over the last couple of weeks, the redness in her face has improved a lot so that it’s almost not noticeable. The itchiness, especially at night time has been intense and often stops her getting more than a couple of hours of sleep. The whole process hasn’t got any easier unfortunately. We had hoped that she would have reached full cure after two years but it’s still a long way off. The skin on her arms is still improving, but very slowly. Her legs, groin and back are still 100% cured. The hives on her stomach haven’t gone away and get very itchy. They started out as small pimples a couple of months ago and turned into hives. Her stomach is covered in them. She made a rare trip to the family doctor the other day to get a blood test and find out if there’s anything she can do about the hives. I ‘ve always wondered what her doctor really thinks about what she’s been doing for the last two years. The doctor has read Dr Rapaport’s study and is supportive, but never the less, her solution to the hives was to suggest a mild steroid cream. After two years of hell trying to rid her body of the stuff, I think it showed that the doctor isn’t completely convinced about the withdrawal. As far as I know, hives are a reaction either from the outside of the body from something touching the skin or a reaction from inside the body of the body trying to release a toxin that’s in the blood. It seems like a logical reaction to me from a drug withdrawal. Anyway, hopefully one day, she’ll be cured and the doctor will have something interesting to talk to her colleagues about. Here’s hoping that there is a cure because the withdrawal so far has been nothing but hell.
Our Blog Update No 16-22nd November 2012 -Withdrawal month No 23
Over the last month, there’s been a bit of withdrawal activity so I thought it might be a good idea to update the blog again. I can’t tell if the activity is helpful, but it’s worth documenting.
The major flare she’s gone through for the last few months came to an end but her face stayed red and rough. She was only getting a couple of hours sleep each night and was extremely itchy. A couple of weeks ago she started her daily trip to the beach again for a quick swim. She’d stay in the water for about ten minutes and then come home for a long bath. The sea water stings and the trip home from the beach is an itchy and painful one, but there’s an immediate benefit where the redness in her face settles down and her skin gets much smoother. She did this for a week but then she became extremely itchy all over her body again, not just her face and hands, and the sleeplessness started again. The pimple like spots that have persisted on her stomach have changed to large red spots. Some large pimples have also appeared in different place around her body.
Currently her legs still look and feel nice to me but she says that they seem rough now. She’s been a bit itchy behind her knees but there’s no eczema. I believe that they’re 100% cured. Her back is still perfect. Her stomach has nice soft skin but has many large, unusual red spots (about 10mm diameter, not protruding) .
Her neck is still not cured and her face seems to change everyday. It’s often red, sometimes a bit swollen, and usually itchy. Some days it’s quite smooth and other days it’s rough. The skin on her face seems like nice healthy skin now. The cured skin is still working its way down her arms, but very slowly. Her wrists and and hands still have a long time to go. The are usually quite wrinkly. I’m not sure that her wrists and hands will be the last area to cure.
She started this withdrawal at the beginning of January last year, so its been almost two years now. The end still seems far away. Currently she’s depressed, itchy, often in pain and desperately looking for an end to this nightmare. Everyday her life, and the life of our family, is greatly affected by the side effects of the withdrawal.
Our Blog Update No 15 -23rd October 2012 -Withdrawal month No 22
For the last three or four months, her face has been going through a really nasty flare, as bad as at the beginning of the withdrawal. It’s looked terrible and caused her a lot of pain and loss of sleep. She had reverted to a red face with very rough skin and swollen eyes. The itchiness had been intense too. Often she has only managed one or two hours sleep during the night and has tried to catch up during the day. It’s been a very difficult time.
Her hands and neck looked terrible too. About a week ago, the smooth skin started to reappear on her face. When I came home from work yesterday, her face was smooth again and looked as good as it has for a long time. It’s amazing how the flares can end so quickly after being so severe. Two weeks ago I was looking at her and thinking that she had a couple more years to go. Last night I wondered if she’d be finished in a few months. Unfortunately my logic tells me that the finish line is still far away.
The rest if her is really nice now. Her legs are 100% eczema free and silky smooth. Her back is perfect, her stomach has had beautiful skin on it for ages but for the last few months has had a light coating of small pimples. In the last couple of weeks, the amount of pimples on her stomach has increased a lot. I’ll let you know what this means when I know. I think it’s a good sign. Previous doses of pimples on apparently cured areas have meant 100% cure to that area is very close. The good skin is continuing down her arms but is moving very slowly. The neck and hands are still not cured yet. Unfortunately the areas that other people see are the areas that have given her the most grief.
She is 100% eczema free and has been for at least a year. It’s a really amazing result so far condsidering that when she was using the steroid cream as prescribed by her doctor, her whole body was covered in eczema, was itchy and was in a pretty bad way overall.
A couple of weeks ago we were in Thailand. I watched my Japanese sister in law get cooked in the sun and was sunburnt the next day. I remembered my wife’s last appointment with a dermatologist where the derm was trying to deceive her into taking stronger steroid creams, an immunosuppressant and prescribed her UV light therapy, three times a week, for a minimum of three months, to give her about six months relief from the dermatitis. I had quite a discussion with the derm about the quantitiy of UV light therapy prescribed and the risk of skin cancer. She told me that the UV therapy was safe (unproven) and that Japanese skin doesn’t burn and therefore the Uv light therapy is safe for my wife. I can tell you that Japanese skin gets sunburnt just like caucasion skin, it just takes a bit longer.
Every now and then I get emails from people either thinking about starting the withdrawal or are already doing it. Their stories are all the same. From reading my blog, some people might get the idea that my wife just saw one bad dermatologist and should have got a second opinnion. Unfortunately the advice, the deception and the complete lack of respect that the derm showed my wife seems to be the normal when you visit a dermatologist. The advice and the medication they prescribe should be evidence based, like other western medicine, but clearly isn’t . The evidence is very clear that they are doing the wrong thing. There are studies going back many years which prove that they are doing the wrong thing. I’m quite sure that dermatology is the the field of medicine that the lazy, incompetent doctors who got through medical school with rote learning are directed to by their peers in the hope that they won’t do too much harm to their patients. The profession is a joke! Am I bitter? Absolutely. My wife suffered from this “incurable” curse for thirty years. It drove her nuts, changed her personality, affected her social life, her abililty to be a great mum and was bad for her internal health. The withdrawal is a nightmare. The ”incurable” curse was nothing but a drug addiction. The doctors prescribing her the medicine know this but are too weak to confront their profession and too weak to support her through the withdrawal. It’s easier and better business to keep her addicted.
I get asked on the emails what creams, oils etc she is using during the withdrawal. The moisturizer of choice for quite a while has been jojoba oil. I think that any oil that doesn’t irritate you is probably fine.
The only other useful mediations have been sea water and vinegar. Regular swims in the ocean or just patting sea water on her skin before a bath have been extremely beneficial. The result is obvious after a couple of days of this. Unfortuantely the sea water stings, especially for the first few days, so it’s an endurance test to see how long she can last before she washes it off. After a few days, she can tolerate it much more easily.
A cup of cheap vinegar in the bath also makes her skin smoother.
So that pretty much sums up my ranting. Please feel free to get in touch and tell me your experiences or if you’re a dermatologist, abuse me. Dermatologsits and abuse seem to go together anyway!
Thanks for reading.
Our Blog Update No 14 -21st August 2012
Once again, sorry for the lack of updates. Since the last update at the beginning of June, the nightmare of the withdrawal has returned. Last time, I mentioned that her face, wrists, neck and hands had started flaring again in a major way. The flare has been as bad as it was at the beginning of the withdrawal eighteen months ago. Unfortunately the flare has not stopped. The last three or so months have been painful, incredibly itchy, have kept her awake all night and caused massive depression. It’s unfortunate that the 90% of her body that is now completely cured and covered in beautiful, soft, eczema free skin is hidden from the view of most people, while her face, neck and hands look like a junkies. It’s very demoralizing and embarassing for her.
Last night she mentioned that she wants to start using the steroid cream again so that she can escape this nightmare, but hopefully common sense will stop her from doing that. Because the rest of her body has completely healed and returned to normal healthy skin, with no recurrent flares or eczema, it’s obvious that she just has to wait a bit longer.
The pimples on her stomach that I mentioned last time continued for about two months. They started on her stomach and worked their way up her chest. They gradually disappeared over about two months.
The good news is that the ‘cured’ part of her body has continued to get softer and softer and is completely ezcema free. The ezcema that returned to her knees a while ago is completely gone. Cured is cured. 90% of her body now has skin as soft and healthy looking as a childs.
Hopefully the flare that she’s going through now will stop very soon and leave her with beautiful skin on her face. Only time will tell.
I’m sorry to all the people that follow this blog looking for good news to inspire themselves. The good news is seeing that once an area is cured, it appears to be cured for ever. The bad news is that this nightmare might take a long time.
If you still wonder why the medical profession pretends not to know about the problem of topical steroid cream overuse, the nightmare of this withdrawal makes it very clear.
Our Blog Update No 13 -9th June 2012
Sorry for the lack of updates lately. We’ve had an interesting couple of months since the last update. With the withdrawal, even the boring times are never really boring.
For about a month after the last update, there was just a slow improvement in the quality of her skin. The nice skin has continued working it’s way down her arms. Basically the nice, soft, oily and eczema free skin started at her ankles, worked it’s way up her legs, onto her back, went around her sides, continued to the front of her torso and up to her shoulders. Over the last couple of months, it’s been working it’s way down her arms. About a month ago, she got a big dose of monster pimples on her stomach. These have been slowly disappearing. The bad news is the flares started again about a month ago on her face, neck and wrists/hands. She’s had a red face, peeling skin and been very itchy on her face and wrists. Her eyes have been a bit swollen lately as well as itchy. She says the inside of her ears have been itchy too. The tiredness and depression certainly returned too. I think she’s now on the down side of the flare cycle and looking and feeling well again. There was a large movable lump in her neck for a few months. Recently this has reduced in size so that it’s hardly noticable. I remembered that Kelly from the googlegroup had something similar and had hers cut out. The lymph nodes in the groin that were enlarged for a while habe settled back to normal. Her sleep is back to the normal sleeping hours now too.
Her face, neck and wrists were the areas that had the most amount of steroid cream applied to them so it makes sense that they’ll take the longest to reach cure. It’s unfortunate for her that these are the areas that other people see. No one gets to see the beautiful skin she now has on 3/4 of her body. Before she started the withdrawal, the only nice skin on her body was on her feet. The rest of her was like a junkie’s skin.
I get a few enquires from people who are intrigued but sceptical about this whole withdrawal thing. I completely understand and was also sceptical before my wife started it. When she started, the only information in English that I could read was one website by Kelly (www.addictedskin.com) , Dr Rapaport’s study and a website by Japanese doctor Dr Fukaya. Their information went against what our doctors told us. I always thought that when I went to the doctor, their primary concern was my health, but I’ve since learned that theres a lot to more to the dermatology industry. The basic concept that when you’re first prescribed steroid cream, you’re normally told not to use it for no than about ten days, but when your problem gets worse after using the cream, you’re then prescribed increasingly stronger cream and for longer terms. Then if you stop using the cream, your body explodes. Dermatologists seem to act as pharmacists, not doctors. You see them, the tell you to put some cream on the problem and come back in a week to see if it worked. Why do we need a dermatologist for that? What’s wrong with vending machines? In Japan, you can buy almost anything from a vending machine. You can buy a litre of full strength beer from a vending machine and people seem to be able to moderate their consumption, so why not add steroid cream. It can’t be any more irresponsible than a dermatologist.
There are now a whole bunch of blogs in English of people withdrawing. Read them and make your own decision about what’s true. People aren’t making any money by sharing their stories. Dermatologists like Dr Rapaport and Dr Fukaya give a large amount of their time for free and their only reward is maybe a few more clients. Dermatologists seem to be busy enough so I don’t see this as a reason to promote the withdrawal. There are no miracle products being sold or promoted.
My motivation for sharing this story is that I watched the quality of my wife’s life get worse and worse as the quality of her skin got worse. She looked for help from a dermatologist but was betrayed by a derm with no morals. I’ve spent the last eighteen months watching her go through the most unimaginable withdrawal, from what I thought was a harmless product, and her body has reacted by giving her the beautiful skin she was told she could only dream about. If you prefer to go with what your doctor tells you, that’s your decision, I’m just sharing our story.
Our Blog Update No 12 – 15th April 2012
A few people have contacted me lately wondering what happened to my updates on our withdrawal blog. My wife has been away for a little while so I’ve been waiting for her to return before I do an update.
Before she left, she had definitely reached the point where she could see that there really was an end to this nightmare. She is now 98% cured and life is back to normal.
Most of last year was pretty miserable for her, with a few breaks along the way. From about the six month mark, there was a gradual improvement which I could see, but she couldn’t see it. Her legs were the first area to come good, going from having extremely thin skin possibly with ichthiosis and a strange gloss appearance to having beautiful, soft, oily skin, although the eczema behind her knees came and went a few times.
Her legs cured last year and this year the good skin worked its way up her back and then around her sides and then to the front of her torso. The good skin continued a path up to her shoulders and then down her arms. Her face hardly ever let up last year, continously going through cycles. For some reason, her feet were never affected by the cream or the withdrawal.
She now has soft, oily, skin on 98% of her body. She has no eczema. In the last month or so, her face seems to be close to cured, although it is still a little red and dark. Her eyes stopped being swollen, and her neck, which had very thick skin from years of scratching, seems to have come good too, although also still a little red and dark. The rest of her skin is now a natural light tone. The orange face which she had for a while last year is definitely a thing of the past.
The only part not cured yet is on her arms from her elbows to her finger tips. The skin here is now soft and oily but still doesn’t look good yet. The cured areas have worked there way around her body in a systematic way so it’s obvious that her forearms and fingers will be cured soon too.
The itchiness now is 2% of what it was last year. I occasionally see her scratching her forearms. There’s none of the hypnotic scratching that I saw last year. She seems to have her energy back, the itchy eyes cured as soon as she stopped using the cream as did the irritable bowel. She has no eczema and is covered in beautiful, soft, oily healthy skin. She has no memory of ever having beautiful skin like this before. Hopefully the end to this nightmare is only a couple of months away but I’ll have to wait and see.
Apart from the pain, embarrassment and itchiness she suffered for most of last year, the depression was endless. Friends and family don’t take the withdrawal seriously because they’ve never heard of it and the doctors have an agenda which doesn’t include your welfare. There’s no way they want to be involved in this withdrawal nightmare.
For most of last year, we wondered if there really was an end to this nightmare, but everything doctors Rapaport and Fukaya have written about has come true. Being brave enough to start the withdrawal and not give in to the cream was definitely the best decision she could have made.
She’s tried different things along the way to try to make the withdrawal a bit kinder but basically time seems to be the only thing that she really needed. Dr Fukaya wrote to us that doctors couldn’t do much to help her and that it was just a matter of time. Having said that, this year she found that sea water has been very helpful, but where I live the sharks are almost as dangerous as the dermatologists.
She’s found long cotton ‘arm sleeves’ (driving gloves without the hands) have been helpful to keep the air off her arms and the same with a cotton scarf. She’s spent hours in the bath soaking in pine tar or vinegar. She tried acupuncture but this was definitely a waste of money. She’s tried a bunch of anti itch creams during the withdrawal but never found a magic solution to the uncontrollable itchiness. A good distraction (ipod games) have been the best solution to the itchiness.
So I think that just about covers it. For those of you who are going through a really tough time at the moment, hopefully this gives you a bit of inspiration. There is definitely a happy end to this nightmare but how long it will take is anyone’s guess.
Update No 11 – 15th Feb 2012
The last month or so has definately been the best and most encouraging month so far during the withdrawal.
In a nutshell, it seems like we are heading towards to the end of the withdrawal. Her legs, torso, shoulders, neck and face are more or less cured and have beautiful skin. Her arms and hands are getting better every day and following the same path that the rest of her body took. I hope there are no more flares around the corner. In the middle of last year, Dr Rapaport predicted that she had a year to go. I think he might be close to to the mark.
There have been no flares since last year and the skin condition is improving quickly and dramatically. The stomach is about 95% cured now. Over the last month, it’s gone from being a bit red and rough in places to being very soft and nice looking, with just a few small red patches and one small area which gets a bit dry sometimes. The arms have cleared up dramatically over the last month but are not cured yet. Her hands have improved but also still have not cured yet. Her face and neck looks fantastic 95% of the time and a little dry and red occasioanlly. The redness is usually a sign of too much scratching. The scratching is mostly now just on the arms, hands and occasionally on the fingers. Her legs, back and sides have continued to get even softer and nicer every day. She was delighted with those areas a month ago. There is a small amount of ezcema behind the knees which gets itchy sometimes. This ezcema has almost disappeared, but I do wonder if it might stay with her forever. If the end result of this withdrawal is a body covered with beautiful, soft, ezcema free, healthy skin that’s not itchy, with a small patch of eczema behind her knees, I think she’ll be delighted. Drug free too! She has no memory of ever having soft, beautiful skin like she has now. She’s 40 and has used steroid cream for 30 years.
The skin is very natural looking. It’s different to the smooth skin she was getting after each flare. The skin she has now looks like everyone elses.
The mositurizer that she uses now is Jojoba oil. This doesn’t irritate her at all. During January and February, we have been swimming at the beach most days. The weather here has been extremely hot (+-40 degrees C) but the reason we go is because the sea water has proved to be a great healer of her skin. On the days, she can’t go, she’ll splash some seawater on her that we brought home from the beach. This works well too. The sea water stings a lot, especially the first time, and stings less every day after. If she misses a couple of days, the stinging is intense again. The drive home from the beach is an itchy one too. The itchiness is relieved with a bath, usually with vinegar or Pinetarsol in it.
The stinging and itchiness from the beach come with a big reward. It takes just a few hours for the skin condition to obviously improve dramatically. The improvement from the seawater has been so obvious that we’ve been swimming most days regardless of the weather. The area she swims at had three shark fatalities last year too and even that hasn’t stopped her. We figure that it’s still safer than putting her health in the hands of a dermatologist!
Sometimes I have a quick look through the google group of ‘withdrawers’. New members keep joining the group and with much the same history. A small eczema problem became a nightmare once a dermatologist
became involved in the treatment. For us, the story was a bit different. My wife hadn’t seen a dermatolosit for ten years and didn’t have the dramatic eczema outbreaks or red burning skin that other people have experienced, because she just continued to use a medium strength cream without the massive ‘hits’ she would have had if she had seen a dermatologist regulary. Instead, her skin condition was in a gradual decline. She was looking very old and had the skin appearance of a junkie. Her energy levels were shocking, she had an irritable bowel, itchy eyes, lack of sleep, thin, dark skin etc. These side effects of the topical steroid cream have all gone now.
She’s done the withdrawal without much medical intervention. She’s been extremely ill and basically toughed it out. She worked out a long time ago that time is the cure and not more drugs or miracle cures. She currently has a few ‘bumps’ under skin, two on the neck and one just below her knee. (not lymph nodes) These seem to be more of the weird things that you experience during the withdrawal. If they stay around much longer, I’m hoping that she gets a doctor to look at them. The problem is that there are no doctors here who have seen a ‘withdrawing’ patient, so something that might be normal during the withdrawal might be seen as something that need to be treated. What I’ve seen over the last year with the amazing changes that her skin has been through is that the body is much more clever at healing itself than doctors are. Doctors won’t let you leave their office without a prescription for medicine. It think it makes them feel important. Over the last year, I’ve learned that some things should be left alone.
Update No 10 – 5th Jan 2012
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 a Japanese dermatologist taking a bunch of eczema sufferers to the beach for a week 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 a Japanese doctor’s 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.
A Japanese doctor’s beach trip (taken from Dr Fukaya’s blog)
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.
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.
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.
This blog starts during the seventh month of the withdrawal. For the story from the beginning, please read the “Our Story” page. The first few months were very hard.