Itsan is an important and incredibly helpful organisation which raises awareness, and offers support to people recovering from 'eczema' caused by topical steroid creams. It saddens me to see people commenting that Itsan encourages torture. Because the truth is that, yes, recovery from steroid cream truly does feel like torture. Unfortunately, like with any drug addiction, the only way to recover is to cease use and ride out the hell you will be initially in for. I truly feel for the people who have tried to quit steroids to recover from their steroid induced eczema, only to find the process too physically and emotionally painful to continue. However, Itsan does not offer a way to torture yourself, it offers hope and it offers recovery! On the other side of that torture is freedom from your skin condition, comfort, and health. People are saying that Itsan is not helpful as it is steroid phobic. This steroid phobia is real, and it is born of a very real and consistent experience; many people who use steroid creams live a life of continuously worsening, burning, and itchy 'eczema'. When they quit steroid creams their drug addicted skin flares horrifically, yet once the steroids are out of their system they are cured! After years of worsening eczema and steroid use I quit and experienced a year of flares like nothing else, it was so hard to endure and yet I endured it. That was three years ago now, for the last 3 years I have lived 100% free of anything that resembles eczema!! Discovering steroid addiction was the best thing that ever happened to me! Itsan was my support system when I was in hell with no where else to go, there is a forum to vent and discuss the experience you are having, and it makes it all a little easier to bear. I would give Itsan 5 stars for raising awareness, and another 5 stars for the advice and support offered by the helpful, hopeful, and supportive community! Below I have posted the last 3 photos as an example of how I looked within days of quitting steroid creams (I was barely better than that before that). The first photo is me now, with the clear comfortable skin I have been enjoying for three years thanks to itsan.org!!!
ITSAN has been a lifeline for me and I could never thank this wonderful organization enough for everything it has done for me and all the TSW sufferers out there. The intention behind the foundation of ITSAN are completely pure and genuine and it’s reflected in everything they do.
ITSAN is probably the only real support group for people going through Topical Steroid Withdrawal. Their main goal is to spread awarenesa and stop the excessive and careless prescription of steroids
Thank God for ITSAN. This site has helped so many, including me, to finally figure out what doctors could not tell us: why our skin rashes were worsening and our lives unraveling. For many, steroids are toxic at levels that many doctors prescribe, and the ramifications are absolutely devastating. Thank God for a nonprofit that helps people suffering from steroid overuse figure out how to finally heal and helps to educate doctors about the dangers of long-term steroid use. I don’t know where I’d be without ITSAN!
The only reason that so many people become aware of exactly what has gone wrong with their skin after having used topical steroids, is ITSAN. This is an iatrogenic skin condition that is surprisingly devastating and semi-permanent. Many people are home-bound due to immobility and oozing skin - for months/ years at a time. Yet doctors do not acknowledge this condition - ITSAN is the single, unifying factor that supports patients, establishes ties to the medical community, and drives for research. A top notch organization.
Thank you ITSAN! FIVE STARS! The truth is, any negative reviews are not from anyone who ever was or ever will be affiliated with ITSAN. Please do not take the one star reviews seriously. They are selling a product that contains steroids and antibiotics that kills "staph" on the skin and supposedly "cures" eczema. Our community can not use steroids and were damaged by steroids. Because we can not use products with steroids, we can not use it, and we do not recommend using this product to our community. Because of this, proponents of the steroid/antibiotic mix comes in, writes multiple 1 star reviews, and has everyone they know click "found this review helpful." You can see most the of 1 star reviews have at least 14-17 "found this helpful." That should be a tip off that it's a fake. The 5 star reviews are legitimate and just placed by an individual --not a group. The 5 star reviews may have a few "likes", but they weren't written as a group with an agenda or axe to grind. ITSAN saved my child's life. It is run by the best humans on earth. It is unfortunate the type of trolling they have experienced by grown adults.
Review from Guidestar
ITSAN is provides information and support that is other wise unavailable or goes against the grain. They are not an organization bought and paid for by big Pharma. They are not an organization with a doctor wanting everyone's money. ITSAN is run by volunteers. And it is absurd to see people say their eczema was cured because they had a staph infection. Most people who come to ITSAN have tried EVERYTHING, including antibiotics for a staph infection!
ITSAN saved my wife's skin and they are a great organization. Do your own research!
This is an amazing organization that saved my skin. After years of full body eczema, and escalating use of topical steroids, I am now clear of eczema for the first time in my life. And medication free. The withdrawal process was horrible and long, but that is what the body must do to heal. The naysayers on these comments (1 star reviews) are like saying let a heroin addict stay in the medication, because withdrawal is too hard. These are confused parents that don't want to put their kids through what needs to be done before their healed. Down the line they will see the truth. This approach is back by many medical research articles and when they say it is not, they are lying. ITSAN is doing great work. Change is tough for most people. Leaders are often criticized. ITSAN is a leader in health recovery! Thank you ITSAN!
This organisation glorifies suffering. Take lots of pictures of your flaky red skin and post an update every week or keep a blog and you will be know as a TSW warrior!!!
It's a crying shame that this organisation knows of a better way to heal yet censors it from their poor suffering followers, it really is a bunch of brain-washed individuals leading people who are vulnerable and suffering, so sad and downright wrong. Even the founder of this organisation has distanced himself from ITSAN.
ITSAN saved me from a life of worsening "eczema" and constant suffering. Without ITSAN, I never would have learned how topical steroids were actually damaging and causing my unrelenting, spreading, and worsening eczema rather than treating it. The healing journey is long for many people (including myself), but the support from ITSAN somehow makes it more bearable.
I'd be lost without the knowledge and support of ITSAN -- they have made a world of difference to helping me understand what is happening with my situation!!! Love them!
So supportive for a family member going through TSW
Not a group I'd recommend d. This group uses two non-peer reviewed studies to validate their theory that TSW is real issue. Sadly what they fail to realise is by stopping their medications cold turkey they allow a rebound effect to occur and when this happens the staph bacteria goes and has a party on their skin. They dismiss any medical help, actual no that's not true. They think taking black box medicine and suppressing the immune system is a better alternative.
My experience with this group was not a good one sadly. I had bright red skin, flaking everywhere, couldn't sleep, the itch was terrible, life was terrible. This group told me it is definitely a steroid addiction? Really? I found a different way that treated the bacteria that gets into eczema prone skin and when I said that's what I'd done they deleted me? I really think they are telling people wrong information or perhaps they just don't understand? They don't allow open discussion about the topic as they fear it so much. Why? Perhaps it challenges their belief system too much? Who knows? Perhaps they've suffered for so long that don't want to believe it has all been in vain?
My red skin was cured in two days and now I don't need any topical steroid anymore except for a tiny spot I get on the back of my neck and on my left wrist. I can go weeks without needing to use it. I can't understand why anyone wanting to give up steroids (if that's what they really wanted) wouldn't start where I have and taper off slowly. Honestly if that's the end goal, why put yourself through the horrible suffering. ITSAN are missing a huge point here. They could promote this better way and then talk to their "people" about avoiding triggers for flare ups, it would be a much happier place instead of a sad, depressing world of suffering.
I don't think this is the right group to look to if you want to heal your skin, they seem to be so caught up in long term suffering.
I find these 1 star reviews interesting. I am a person going through
RSS/TSW. I am not an affiliate of Itsan in any way. I would like to
add my own response to some of the 1 star points that have been made.
1. Itsan makes money off selling people creams.
Itsan is a nonprofit. Yes NON profit. They profit from nothing.
Yes, there is a woman affiliated with Itsan who makes her own
creams/balms and sells them on Etsy. No Itsan does not make tons of
money from their sale or advertise them as a cure to RSS. Even the
woman who makes the creams does not advertise or sell them in any way
to people in the forums or groups. She does 1-2 give away type things
a year, around Thanksgiving time, to give FREE balms to people in
need. She NEVER acts like these balms will cure RSS. They won’t, just
like nothing else will besides time. They are for comfort during
withdrawal, and/or to be used during natural childhood eczema.
2. A derivative of #1- Itsan wants people to stay sick so they can
make money off them. They even ask for donations.
Just a reminder about that nonprofit thing. No reason for them to
want people to stay sick, because they make no money off of anyone.
Yes, Itsan asks for donations. As with any nonprofit, the
organization will not run without donations. The money goes to many
things including website upkeep and plane tickets to and attendance at
Eczema and Dermatological forums and meetings, etc. Look up any
nonprofit organization and there will be funds received to keep the
organization running. Truly the goal of Itsan is to eradicate the need
for itself. The goal is to get enough information out in the world
about the possibility of Topical Steroid Addiction (TSA) that people
can make informed decisions about using topical steroids and hopefully
never become addicted to them in the first place. NO TSA = No need for
3. Itsan is steroid phobic and is telling people that steroids cause
RSS when actually it is a staph infection.
To address the first part of the sentence, Itsan is not steroid phobic. They are very clear that steroids have a place in the medical world. The issue is not necessarily steroids themselves, but how they are being prescribed. Topical Steroids should not be used long term, nor should they be used on areas such as face, groin, and skin folds. It is well known that absorption in those areas is much higher. It states this in most pamphlets but then adds this magical little blurb "unless directed by a medical professional."
If every person suffering from RSS only had to contend with a Staph infection, wouldn't you say those same people should be able to discontinue steroid use with no difficulty once the infection has been cleared? This does not seem to be the case. Speaking from personal experience, I have no active Staph infection (which has been verified through lab testing), yet am still going through RSS. I have yet to hear of someone from the Dr. Aaron camp (those that say the "cure" is to use a steroid cream mixed with topical antibiotics diluted in an emollient in order to taper off the steroids) actually taper off the creams fully.
Speaking from my own personal experience, I have seen vast and major life improvement since stopping topical steroid treatment. On 10/3/14 I was sitting at my computer with my legs propped up and my "eczema" red and weeping through towels I had wrapped around them. All I can remember thinking is "how can this just be eczema, it keeps getting worse, this isn't normal." I had been using topical steroids (TS) for 4 years at that point. I developed a small nickel sized rash on my left hand after the birth of my daughter. I left it alone for a few months in hopes that it would go away, but when it persisted I went to my PCP. She referred me to a dermatologist. Without asking any questions about possible causes of my symptoms, he prescribed Triamcinolone. It worked in the beginning. I used it as prescribed- 2x/day for 7 days. Then I would go without for 7 days. I started to notice that the days I was using the ointment my hand would improve, but it would get bad again during the days I was not using it. I went back to the derm. He decided I needed a stronger ointment and prescribed Betamethasone, telling me to use it under saran wrap at night. Again I noticed that the days I wasn't using the ointment my skin would get worse. Then I slowly stopped seeing improvement even when I was using the ointment. Eventually my eczema spread from just that small nickel size spot on my hand to cover both hands and elbows and the lower portion of both legs.
I immediately stopped using the steroids when I found Itsan. Things have not been easy, and it truly is a hellish experience. I was red, weepy, itchy, raw, burning, emotional, unable to regulate body temperature etc etc for months. I am 16 months in and I have a quality of life again. I still deal with skin problems daily, and still have flares that are pretty awful, but I am able to be me. I 100% believe that I made the right decision. How could I possibly go back to using steroids when they stopped working for me to begin with? The first picture is 13 days off steroids, this is really similar to what my legs looked like while still using steroids but with some weeping and edema added in. The next picture is 15 months off steroids. No creams or potions or money paid, the only thing I did was to stop using steroids. That's it. If the steroids weren't the problem, why did my skin get so much better?
Thank you for a fair and honest review. ITSAN understand the reality of addiction to this drug and the painful process of topical steroid withdrawal. We hope that the future will bring more methods of comfort for those who are suffering from topical steroid addiction. ITSAN also never advises anyone to stop topical steroids or how to withdraw from them, we share our experiences and leave it up to the individual how to proceed. We also strongly encourage a supportive doctor's guidance for those who take this route. Our mission is not to have conflict with Dr. Aron supporters as we are sure he feels he is helping many children but there are serious concerns of the safety of his method to treat eczema. Using topical steroids combined with antibiotics 6 times a day for 6 months is not an approved method of treatment by the mainstream dermatologists. In fact India just banned several drug combos which include corticosteroid/antibiotics mixes due to the danger of using them. Topical steroid addiction or steroid-induced eczema has been studied and cited in medical reviews just as steroid-induced rosacea has. There are studies that date back to the onset of corticosteroids that prove it has side-effects that should be taken seriously and that eczema was never considered a life-long disease. The burn that comes with tsa is not a symptom of original eczema along with several other side-effects that come with the withdrawal. Here are some cited facts and the reason India just banned some of the same medications once thought to be safe. "Several studies report improvement of clinical scores after treatment.12–14 The use of crystal violet as a topical agent led to improvement in S aureus–colonized AD.12 Topical application of retapamulin also led to improvement of atopic skin lesions.13 The use of topical mupirocin was shown to reduce S aureus colonization and, in the short term, improve clinical scores.14 Nevertheless, improvement was temporary and carried the risk of potential adverse events such as contact dermatitis and enhanced drug resistance.15 Staphylococcus aureus–associated resistance has been recognized as a growing problem. A report indicated that resistance levels to fucidin increased from 2% in the past decade to 10% to 38%.9 In the face of increased prevalence of antibiotic resistance and the lack of satisfactory data on benefits, long-term use of systemic or topical antibiotics for AD is not recommended.15,16 When overt signs of bacterial superinfection are present on skin lesions, short-term use of oral or topical antibiotics is justified.15" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114666/ "In a recent study, researchers examined 75 patients (62 women, 13 men) between the ages of 18 and 60 who had steroid-induced rosacea-like dermatitis. The patients had used topical corticosteroids for anywhere from three months to 10 years. More than 90 percent suffered facial redness and hotness, and 97 percent reported burning or itching. More than three quarters suffered from telangiectasia (visible blood vessels), and 40 percent had the bumps and pimples associated with subtype 3 (papulopustular) rosacea. Many patients reported emotional stress, heat or sun exposure as triggers for their outbreak of symptoms. The good news is that effective treatment of rosacea-like symptoms due to topical corticosteroids is usually very simple: stop using the medication. " http://www.rosacea.org/weblog/great-impostor-steroid-induced-rosacea Steroid cocktails, which are in fixed dose combinations, are mixed with various antifungal and anti-bacterials thus making the drugs extremely dangerous and irrational. Use of irrational topical steroid combinations can lead to drug resistance. “Dermatologists are seeing increasingly widespread fungal diseases where the use of irrational combination drugs has been implicated. The fungal diseases do not respond to conventional drugs for conventional duration and dose,” said Dr. Shyam B Verma, dermatologist based in Vadodara, Gujarat. “Indian doctors are witnessing a pandemic of adverse effects induced by topical corticosteroids,” Dr. Verma writes in a news piece published on Thursday (November 26) in the medical journal The BMJ. "Topical steroids can cause substantial and permanent damage, especially to thin skin such as on the face and groin, even if used for a short period of 15 days. Side effects include pigmentation and atrophy of the skin. “Misuse of steroid combinations can cause bacterial or fungal resistance, which can make infections difficult to diagnose and treat,” Dr. Verma writes. According to a 2011 study, nearly 15 per cent of dermatology patients were found using topical corticosteroids. Of the 15 per cent, over 90 per cent had adverse effects." http://m.thehindu.com/sci-tech/health/irrational-topical-steroid-combinations-can-cause-drug-resistance/article7918516.ece
A steroid phobic community that encourages suffering. There are far less torturous ways to heal than this cold turkey method they encourage. ITSAN promote their way only and censor all other suggestions. I especially disagree with their ethos when it comes to babies and children.
Thank you to ITSAN for providing the information. My daughter been using steroids but it doesn't helped at all. After we stopped, her skin is much more healthier and we see the huge difference! Keep helping.
Please see my photos below. I believed I had Red Skin Syndrome after years of ineffective treatment for my eczema. I spent 6 long, horrible months in the bath tub using no treatment ( except for Dead Sea Salts and Shea butter) for my skin, feeling miserable. ITSAN and their members encourage you, call you a TSW warrior and make you feel like you should stick it out because healing will come, when? A year, 5 years? Apparently the healing time correlates to how long you used topical steroids, I was looking at a good 7 year wait. F**k that!
Luckily I found another way and turns out I had an untreated staph infection on my skin for years.
A wonderful man by the name of Dr. Richard Aron healed me in a matter of days.
Not a place I'd recommend because of the high censorship and deletion of any whiff of an easier way to heal.
I guess it must be hard for the admins to admit there could have been a better way, especially when you've suffered or allowed your children to suffer so much. This organisation thrives on it's own pity and if you're not suffering you must not be doing it right. it's very idealistic to believe by using everything natural you will heal. I guess there is some truth in that but in this situation most people need medical help. Children have died at the hands of ITSAN, not a responsible organisation.
Itsan was very discouraging to me when I posted about other available options for treating my skin eczema. I was considering topical steroids and on mentioning this, I was made to feel like I was a horrible person. The one statement they kept repeating was that I was "delaying the inevitable". They believe that everyone who uses topical steroids is addicted. I do not understand the group mentality that exists in their forum but I am no longer a part of it. I am now back on topical steroids for the treatment of my skin, under the care of my doctor, and doing splendidly well!