Topical Steroid Cream Addiction

Eczema

 Atopic Dermatitis is curable according to the thousands of cured sufferers and according to thorough medical research.

(Atopic Dermatitis is incurable – according to most doctors!)  Are you confused ?

The withdrawal from TSC results in your skin condtion deteriorating dramatically when you stop using the cream.
Eventually, after you’ve been to hell and back, your skin condition improves to point where your ‘incurable’ condition becomes cured. 
(well that’s the theory anyway)

 

 (Maybe) Your cure is here!

Please note that I am not a doctor and nothing on this website constitutes medical advice.  Please do your own research.

Introduction

If you’ve been using topical steroid cream for a while and your problem seems to be getting worse, instead of better, chances are you have topical steroid cream poisoning rather than an incurable condition. The dermatitis was probably cured years ago. You’re probably thinking that you have tried to stop using the cream before and the problem got worse, and when you reapplied the cream you improved again. You are actually addicted to the topical steroid cream.  Unfortunately to get cured, you have to get very sick first. You’re in a for a really tough year, but if the research is true, there’s a huge pot of gold at the end. Beautiful, eczema free skin, and no more scratching.

The cure is not some new age, holistic medicine, you just need to stop poisoning your body.

Why did your doctor forget to tell you this? I don’t know, but here’s the story.

Diagnosis

At the beginning of 2001, my wife went to a dermatologist who described her condition as:

“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 long standing nature.  Diagnosis – atopic dermatitis – currently severe, undertreated and causing considerable distress.”

My diagnosis would have been: (I’m not a doctor)

“extensive eczema,  itchy knees, elbows, eyes, face and torso, dark, dry skin.  Very thin in places and very thick in other places.”  Her skin always looked thirsty.  Her face had an unnatural looking gloss appearance.  Her legs were very dark, dry, had the unnatural gloss appearance as well as a fish scale appearance.  Her wrists looked like the wrists of a ninety year old.  The skin on them was very thin and dry and you could see patches of blood.  Her energy levels were terrible.  She had an irritable bowel.  If I put my cold hand on her stomach when she woke up in the morning, she would rush to the toilet.  Her eyes were always itchy and eye drops never helped.  I thought she looked like a junkie.  My diagnosis – “poisoned”   I mentioned to the dermatologist that I thought she was being poisoned but was told that “it was not poison but a way to make her get better.”  I was then shown the door!

(having read many similar stories now on the google group, it’s become very clear to me that you’re very brave if you dare critisize the sacred steroid cream to a dermatologist.  They will blame everything else in the world, for causing your problem, but there’s no way they’ll blame the cream.  If you ask you local doctor for help withdrawing from the cream, you’ll probably get help. If you ask your dermatologist for help, you’ll most likely get shouted at, ridiculed, belittled, laughed at, or in our case deceived into using a stronger cream.  Most dermatologists minds are closed on this one.  Basically the steroid cream is what keeps them employed, they haven’t got much else to offer people and they don’t want to deal with the nightmare of a topical steroid cream withdrawal.   If you think this is a bit harsh, read through the stories on the google group, they are all the same.)

Our Story

This is the story of my wife’s battle with Atopic Dermatitis (Eczema) for the last thirty years and her road to cure.  The doctors always told her that her condition was incurable.  According to the research her “incurable” condition was nothing but topical steroid cream poisoning.

My wife has gone against the doctor’s advice, quit the cream cold turkey and become very ill from the side effects.  So far, everything that Dr Rapaport and Dr Fukaya have written about has come true.  On this website is a monthly blog about her progress.  It’s been a very hard road so far.  Only time will tell if she has done the right thing.

The effects of topical steroid cream overuse and also the withdrawal from the cream have been thoroughly researched and thousands of patients have already been cured of this “incurable” condition.  The reason for this continuing problem is most likely due to the severe withdrawal side effects from this cream, and the fact that most dermatologists would rather not want to deal with the withdrawal.   The withdrawal is quite possibly much harder than the withdrawal from illicit drugs.

My wife had used topical steroid cream for about 30 years, her skin was in terrible condition and the dermatologist’s advice was to use stronger steroid creams, an immunosuppressant and a lot of artificial UV for a six month break from the condition, not a cure. There was no logic in this treatment. All the recommended medications / treatments come with very severe side effects or a high level of risk and this was for a six month ‘break’.

The recommended treatment seemed like putting petrol on a fire. When you are first given a tube of topical steroid cream by your doctor, they tell you very clearly not to use it for more than two weeks.

My wife was showing all of the signs of TSC overuse and the dermatologist wanted to give her stronger creams.

As we have found out since the visit to the dermatologist, properly conducted medical research by real doctors proved many years ago that the topical steroid cream becomes the problem and not the cure when overused. According to the research papers, the path to cure for my wife was to stop using the TSC, become very ill from the withdrawal symptoms, and then wait for between six months and two years while the body detoxed and recovered.

Why hadn’t the doctor told her this? Wouldn’t it be nice to know that a cure is possible if she’s willing to ‘tough it out’ for a while. I’ve got my own thoughts on this but I don’t really know.

Before I go any further, I want to make it clear that this is a story about someone who used topical steroid cream for a long time. As a short term treatment, it’s possibly very good medicine, I have no idea. From what I’ve read, some people can get addicted in as little as four weeks.   I have  read about people using OTC very low strength 1% hydrocortisone getting addicted as well as those using the high strength creams.  For some people (who are not atopic), they can use the cream for years and not get addicted.  We’re all different.

On this site, you can read about the progress of my wife while ’withdrawing’ from the cream and decide for yourself if she’s heading towards cure or just making her life a misery.

The Usual story

*Possibly a small eczema problem in your elbows or knees, a small patch of eczema on your buttocks or maybe a small patch of eczema on your eyelids grew into a major eczema problem once treatment with topical steroid cream began.  Initially the steroid cream seemed to cure the problem, but then the problem came back worse, and in new places.

* The doctor prescribed stronger cream to fix the new problem, which cured the eczema again for a little while.  The problem then came back again, worse and in new places.  Didn’t the doctor originally tell you not to use the cream for more than two weeks?

* When you reduce or stop the use of the steroid cream, does your skin go red, get swollen or burn?

* Topical steroid cream addiction can occur in as little as four weeks.

* Of course, for many people, the cream is a quick fix to a problem and the problem doesn’t return, but not everyone is this lucky.

* Most of the adverse side effects of steroid cream overuse can be reversed upon total cessation of the use the cream.

* Your doctor probably didn’t tell you any of this, and unfortunately most doctors can’t tell the difference between a natural skin problem, an overdose of topical steroid cream or the withdrawal symptoms.

The medical community choose to ignore this problem (and exacerbate it) probably because of the nightmare that awaits them when their angry patients catch up with them.  The withdrawal from this poison is nothing short of a trip to hell and back.  The medical research and thousands of cured patients in America and Japan are being ignored.

If you’re still reading and think you can relate to this, please read Dr Rapaport’s 15 page research paper.  For my wife, everything he’s written has come true so far.  Once you’ve read this, everything makes sense.  Link to Dr Rapaport’s Study

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.

http://web.archive.org/web/20140110031956/http://www.eczema.org.au/stories/Holly’s%20Story%20media%20release%202013.pdf

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.

 

For my monthly blog and other information, click on the MENU link at the top of the page.

 

Dr Rapaport and Dr Fukaya

Below are some links to interesting reading and listening mainly from Dr Rapaport and Dr Fukaya.  Both these doctors are real doctors, not quacks, and have nothing to sell you. Dr Rapaport is most likely much more qualified as a dermatologist than any dermatologist you have visited.  Both are making a huge effort to change the prescribing patterns of doctors and to support ‘withdrawing’ patients for no reward for themsleves.  They are obviously very confident in what they are saying.

Dr Marvin Rapaport – Clinical Professor – Medicine/Dermatology, University of California Los Angeles Medical Center; Past Attending Chief-Dermatology Division, Cedars-Sinai Medical Center
Board-Certified:  American Board of Dermatology
MD: Jefferson Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania
Internship:  LA County Hospital, USC
Residency:  Dermatology, University of California Los Angeles Medical Center
BA:  University of Pennsylvania, Philadelphia, Pennsylvania
Member:  American Academy of Dermatology, American Medical Association

Dr Fukaya is also the real deal.  – Mototsugu Fukaya MD, JDA certified dermatologist

Please read this article

Link to Dr Rapaport’s Study -  A very thorough study on 1500 people regarding topical steroid cream overuse and withdrawal – Very good reading  – 100% cure rate for those who were able to complete a total withdrawal from the use of the topical steroid cream.

Link to teleconference with Dr Rapaport – No1 – Dr Rapaport answers most of the questions you will have about eczema and topical steroid cream. He makes sense out of the illogical nonsense that dermatologists tell you. It goes for almost two hours and is well worth the listen. (fast forward to about the 7 minute mark for the beginning)

Link to teleconference with Dr Rapaport – No2-  Possibly more info in a shorter recording than no 1. (fast forward to about the 6.30 minute mark for the beginning)

Link to teleconference with Dr Rapaport – No3-   (NOTE: Starts at 11:00 minutes into the recording and Dr. Rap gets off at 1:30 minutes into it.)

 Link to teleconference with Dr Rapaport – No4-   From Dr Rapaport – Two corrections as I recapped in my mind what I said  :

1- Applying large amounts of steroids to the mother’s skin during pregnancy might affect the embryo and they might have rash on delivery-  ONLY IF THEY ARE ATOPICS GENETICALLY- NOT A NORMAL CHILD.

2-My naysaying the work of the allergists is based on a few items-  A) where is it proven that atopics are “allergic”to ingested things? They are itchy at first on any given day.  B) how is it conceivable to ingest something- pill-food etc and be a”allergic” with a little itch on the arm only, not break out on the whole body as we know happens with a drug allergy

Link to Dr Fukaya’s website - Dr Fukaya is a Japanese dermatologist who has also studied the effects steroid cream over use and the withdrawal of steroid cream.  He has been given a very hard time by the ‘atopic industry’ in Japan, but thankfully enough doctors in Japan listened and understood.  There is now plenty of help for ‘withdrawing’ patients in Japan.

The New “International Topical Steroid Addiction Network” website is now up and running  -  www.itsan.org

 

Google Group

In the middle of 2011, a google group of people withdrawing from topical steroid cream use was started.  The group has been growing well and provides an excellent support network if you choose to do the withdrawal.  The withdrawal side effects have been much the same for everyone. (this group has moved - here is the new link)  https://groups.google.com/forum/?hl=en&fromgroups#!forum/itsan

So why cold turkey and not a gradual reduction -

from googlegroups 1st nov 2011

Question:  Why must we quit cold turkey and not wean off steroids?

Dr. Rapaport’s Answer:
Like many drugs steroids work in different ways– stop inflammation,  stop pruritus (itching),  raises blood sugar, raises blood pressure, and constricts blood vessels in the skin.  Repeatedly done, then the vessels respond with the repeated insults by counteracting and dilating- staying open and reddening the skin–then when that occurs any little bit of steroid keeps the process going-so stepping down does not work.  Way back many years ago, I tried that but you get to a certain low level and the flares occur and the process repeats. It doesn’t work. Cold turkey is the way to go.

Systemic Steroids

I have no idea about this but please be careful.  The website relates to my observations of Topical Steroid Cream.

from google group 31 oct 2011

Stopping systemic steroids cold turkey is fatal when you have been on them long term. Not the doses one would get for an eczema treatment, usually 10 days or less. But if anyone has ever had a five day “dose pack” of prednisone it is dosed very precisely as 5 pills on day 1, 4 pills on day, 2, 3…..etc. Shots are another story because they leave your system more slowly over time on their own.  I had an adrenal crisis before I quit topicals because I had been given a shot and pills for 30 days and evidently I didn’t taper down enough. My blood pressure (BP) dropped to 70/30 and they wanted to admit me to the hospital. But instead I was under 72 hour watch from family and friends, until my BP came back up.

 

 

 

 

Also applies to Red Face Syndrome, Post Peel / Laser Erythema Syndrome, Status Cosmeticus, Red Scrotum Syndrome, Vulvodynia, Perianal Atrophoderma, Chronic Actinic Dermatitis, Chronic Severe Eczema according to the medical research paper written by Dr Rapaport.  Topical Steroid Cream Withdrawal,  Atopic dermatitis cure, eczema cure, topical steroid cream side effects, psoriasis