I am not a doctor

I am not a doctor

I am not a doctor. There is no medical advice here, just what I have witnessed and read.

If you would like your own withdrawal story published here, please feel free to contact me.

From Googlegroups

I see you were wondering if only certain steroids cause this horrible addiction. I have an answer. From my personal experience any steroid can cause an addiction, even weak ones.
I used ONLY hydrocortisone 1%, (i think there is only one weaker steroid which is hydrocortisone 0.5%).
So basically I used one of the weakest steroids out there and i still got addicted

Story about a six year old

my daughter is now 6.5 yrs, last summer , June 2010 she had suddenly a very small spot of itching rash on one of her buttocks … she always had this perfect skin, thank god, but … this rash was bad and strange to me, i had no idea about eczema, not a clue , i always had this oily skin with acne and much oil, and never had a dry skin problem, i kept putting good emollient creams, Nivea, Jergins and others, not knowing what the problem is? but it kept coming back, i am sickly paranoid about my kids, i care tooooooooo much for the smallest detail, i never rested until taking her to a doctor, i thought it could be some kind of infection, her daddy said it is nothing and will go by its self, but i never agreed with him, now, my poor baby’s small rash started to be a nightmare, i took her for 6 dermatologists all of them prescribed her topical steroids and none, absolutely no one doctor said that we should not use it for more than two weeks !!!!

with steroids (which i very ignorantly thought were the cure) , the rash disappeared each time, but after stopping it , the rash came back looking worse, deeper, more inflamed, and on much wider area , now her both buttocks, and extending down towards her knees and up towards her back … what’s happening …? then i started reading about eczema and learning about it … an itch that turns into rash…. lubricate and moisturize ….avoid baths…. could be food allergy…..could be a hidden allergy….. could be clothes cleanser… could be dust… everything i had a clue to cause allergy , i suffered to fight and eliminate it from our life, but there was no use !i also started to read about steroids, the side effects, the utmost care of use, their original job as fighting the infection through damaging the skin immune was a shock to me, when i used them i thought they were a cure , …. why using something that is not a cure on an inflammation which is a skin status, skin property, the skin itself ? to hide it ? am i lying to myself ? it is not a cure and i shouldn’t use it , this became my decision since Oct.2010 , thank god all she had are topical steroids, and only one shot of intramuscular steroid , and getting worse and worse , by every application, steroids made her worse, it is a mistake to use them

a year from hell, i was completely collapsing…. trying everything … and her getting worse and worse… i cried every day very many times … when i moved during my sleep .. her getting worse was the first thought in my mind… even before i open my eyes… tears dropped with the opening of my eyes, i always prayed to god and asked him millions and millions of times to help me find her cure, do the right thing for her…. dear God , please anything but my kids, … please.

some doctors thought it might be a fungal infection, they gave her topical steroids mixed with anti-fungal creams, and some high dose pills against fungal infection, the inflammation always came back, again and worse, and after that , they said that the pills were a mistake !!! and that this is eczema, nothing else, luckily, all the steroid strengths were of medium potency, mainly i used most Locoid Lipo cream 0.1% based on 3 weeks on 3 weeks off , and daktacort cream 1% also on 3weeks on/off, after that they started to prescribe her more potent steroids mixed with topical anti-biotic, i applied only once elecom mix with anti-biotic and the first flare was extremely severe (the worst that she ever had) with lots of acne and blisters on her back and legs , erythma on her face and belly and face, hands and legs, thank god these were far patches and small, and i already had the bad feeling against steroid, i didn’t put any thing on the new patches and they disappeared by themselves.

i suspected allergies, and went through forbidding her from eating tomatoes , eggs, all processed foods, candies, chips, chocolate, most foods that may cause allergy, also from playing with furred texture, sand, perfumes, my little one got sad and scared from all the foods she adored, despite everything she continued to get worse, i cried and prayed, i knew deep in my heart , also my precious mother, she kept telling me , God will help her, she will be cured, oh dear God thank you , all my prayers and thanks, you granted me the answer at last.

it was this day on 20′s of May 2011 , that i was crying in my prayers , and i extended my hands to the sky and said , oh dear God , help me and repeated it a lot of times, crying hard, right after this i got a call from my sister(she works in a pharmacy ), she said that i should take my daughter to this allergy doctor, he is very famous and that my daughter must have an allergy , and this doctor will find the trigger .

my daughter was very bad then, the best emollient creams for eczema , made her skin look as if it is skinned out , almost showing the flesh, very hot, burning and stinging all the time, she cried almost every day that month, me and her father had a great big true fight, there was even two divorce attempts from my side because he never wanted to stop steroids, and i refused to use them, this happened twice , once on December 2010 , and the last one this last May 2011, my little one was crying all the time it is really heart breaking to me and to her father, i didn’t know what to do, but whatever it was, it was not steroids, the problem is that i wasn’t’ managing her withdrawal correctly , i deprived her from a normal kid life of eating , playing out, itching, moreover i put on her emollient creams that her flaring skin does not tolerate, and burning was killing her, and her monster mother putting more emollients , because lubrication is the only non-steroidal skin cream !!!!!!!!!!!! that was not a life for my little girl

my mom and dad , they said that i should do what doctors say, i can never know better than doctors, and that was what modern medicine consider as a cure to my daughter’s chronic disease, doctors, my husband, my parents, brothers and sisters, all of them said i should use steroids, i had no scientific proof of anything, it was only my feeling against the whole world, … , i re-applied steroids again and again, i knew steroids made it better for a while, my little one deserves to live a normal life !

Anyway, after getting the allergist , even without asking about one, i felt that God had sent the answer, that hidden allergen will be discovered by this allergy and immunity systems specialist at last, that was the answer, i took her, he said i should make IGE test and some other blood tests, and stop Zyrtec, the anti-histamine, and get her ready for the patch test, surely a huge flare occurred with acne and blisters and everything for a whole week until the anti-histamine is out of her system and can perform the patch test , to the doctor’s and my biggest surprise , her results were very normal and the doctor said, no need for patch test , she is not having any allergy! she is having (atopic dermatitis ) and this is a chronic disease that has no cure, only steroids give some relief through on/off use, and that was her destiny , … and that i should have faith …. and accept it to be her destiny …..

i went back home like dead, hopelessly googled atopic dermatitis , (through the year i read every day more than 4 hours almost every thing about eczema, i knew atopic dermatitis was the alternative name, same thing but never searched the magic words … atopic dermatieis, this was the answer to my prayers and the end of my agony, i found the Wikipedia site the definition of the magic words, the very first choice on Google , on Wikipedia’s definition, reference [22] was my dearest Kelly’s website link to Dr. Marvin’s article, every word there was talking about my daughter’s case.

showing the articles to doctors didn’t change a thing , they were insisting on the steroid application !

me, i stopped all types of steroids after a week, and didn’t use emollients, as per the Great Dr Marvin recommendations, only stopping emollients made her endure the bad flares, the burning was VERY MUCH LESS severe, but the itching continued, she is again able to sleep all night at last
she is now in her second month of cessation, the eczema location looks very red and peels lots of skin, but flares are endurable and very much less severe than before, even if they got worse, Great God will help us endure them till finally healing , thanks to God, also thanks to Great Dr. Marvin and my angel Kelly, Wikipedia Google , we are saved at last

Story

I was born with eczema and as far back as I can remember, my mother put some kind of ointment on my legs and arms to control it. I don’t know if it was steroid cream, but I suspect it was, since doctors easily prescibe this drug for any age patient. My heart hurts a lot for babies and children that are suffering the horrendous steroid cream withdrawals.

As I got older I used the steroid cream as needed (mostly Triamcinolone Cream), which was not every day, so I would say that it was 20+ years of use because I am 56 years old. I also had terrible migraine headaches when I was age 10-12, which could have been a side effect of the steroids. I do remember always being tired and fatigued, and how hard it was for me to wake up in the mornings. That is another side effect of steroids as they mess with your adrenal functions.

I am a soft-hearted person and when I shifted from sixth grade to seventh (junior high back then), my face broke out in a severe case of what I thought was eczema. I know now, it was the steroid withdrawals. I probably went long enough without using it that my body reacted. My face was so cracked, weeping and bleeding, I had to miss 4 weeks of school. I remember going to the doctor and getting pills that cleared it up. They were probably some time of steroid, most likely prednisone. I lost all my pigment and freckles, which eventually came back. I think the stress of switching to junior high and getting teased about my many freckles helped trigger the breakout. When I was 22, I had another break-out on my face that was just as horrible as the one I had in junior high, and stress for sure played a part in that one, as well as the fact that I was using the steroid cream intermittently.

I always had fatigue, sugar cravings, low blood pressure and got cold easily. I think the years of my bloodstream absorbing the steroid poisons played a big part in that. When I was in my 40s, I started getting sick often with digestion issues, which can be another side effect of steroids. I ended up with several intestinal infections and got loaded up with flagyl, which only wiped me out more with fatigue and lack of good nutrients in my body.

My skin suffered severe dryness as far back as I can remember, but it became chronic. I slathered olive oil on daily to combat the parched skin. I had bone pain in my wrist and my doctor said it was rheumatoid arthritis, and also told me I had osteoporosis after a bone density test. I already had ruptured in my lower back and gotten diagnosed with fibromyalgia. He said this to me: “you are too young to be having all of these health issues at the age of 45.” He was puzzled and so was I. I also have had epidural steroids injected due to a c-section and back pain. I ended up on disability and struggled along to improve my health.

In the year 2000, I read a book called “The Maker’s Diet” and changed my eating habits for good. My internal issues improved a lot and my skin seemed to be better, but I still had the eczema on my hands if I went too long without my steroid cream. Refills were always available without question, as most doctors are not aware of the addiction issues. I do not blame the doctors because they just do what they learn in medical school. The blame falls on the pharmaceutical makers, the leaders of the American Medical Association, and the FDA. They know about the side effects of many drugs and when some of them get recalled? They act innocent, but how could they not know about the steroid side effects after all of these years?

In 2009, my arms, legs, stomach and chest developed white spots everywhere. I researched it and thought it was Tinea Versicolor, a fungal rash that certain people get from sweating. The fungus on the skin’s surface mixed with the sweat creates the fungal infection. I went to the doc and got some prescription anti-fungal cream called Clotrimazole and Betamethasone Cream. (Strong steroid cream) This was supposed to get rid of the fungal rash and eventually the white spots would disappear. I used it along with the Triamcinolone as an all-out attack to kill whatever was bugging my skin. Little did I know, it was the very thing causing my issues. My body was so full of steroid poisoning, my skin was displaying the stress of it with the white spots.

All that year I slathered on the creams and soon I began to have the crazy itch. By the following summer of 2010, my whole body was itching and my stomach broke out in what looked like shingles. I went to both doctors in the practice at seperate times and each one was puzzled. My male doctor said it looked like possible scabies, but was not sure so he gave me a prescription for Prednisone (oral steroid) and said that would take care of it. By this point, I was leary of more steroids and put them on top of my refrigerator. I kept up the constant itching, especially at night, so I began my routine of Epsom salt and oatmeal baths every night.

The itching got worse, so I went back kind of worried it might be scabies. My female doctor took a piece of skin and sent it to the lab, but they did not see any evidence of “live” scabies. She said to be sure, just use the scabies cream which was called Permathrin Cream, another strong steroid. I was so paranoid with all of this skin stuff, itching and now the thought of bugs on me? I slathered the poison all over my body, except my head and cleaned my house and room like a maniac. I dusted my floors, used vinegar, alcohol and everything I read about that would kill the bugs. I still itched and had itchy red rashes on my legs, upper thighs and stomach. So I put a second treatment of the scabies cream all over myself after a week. This was not good because there are strong side effects to this cream. My poor body was being killed by steroids, but I was doing what I thought was the right thing.

By the fall of 2010, I had developed little spots of rashy, red areas and began to suspect the steroids. I found one website that talked about steroid cream giving you “steroid eczema” and thought that must be what I had. I quit all the steroid creams in September and the spots got worse and more itchy. I emailed the doctor of the website I had read, and he advised me to take low doses of the oral prednisone to get rid of the eczema, while weaning the prednisone down each time I had a flare. I was paranoid about the Prednisone so I went cold turkey until February 2011 when I saw the eruption escalating.

Confused and desperate, I took 20 mg of the Prednisone and slowly weaned it to 5 mg then quit, over those couple of weeks. The online doctor said that I should take it each time there was a flare and eventually the “steroid eczema” would go away. I only took it for the two weeks in February, as well as used the steroid cream one more time out of desperation.

I took the Prednisone again at the end of March 2011 into the first week of April. It would flare every time I got to 5mg, which he said was the flaring point. By the second week of April I was flaring severely on my arms, hands neck and slightly on my face. I had only used steroid cream a few times on my forehead. I knew this was not working and my body was addicted bad.

I Googled things like “steroid side effects” “steroid cream addiction” and found Kelly’s website with Dr. Rapaport’s explanation of steroid cream addiction. I emailed her and she answered with much encouragement and by sharing her steroid cream withdrawals, she totally described my condition. She said I would get better, but it would take a long time. My legs, upper thighs and stomach had cleared but my arms, hands and neck were bad, as well as spots on my face.

My eyes were giving me trouble, which I thought was from my computer, but it was the side effect of the steroids. You can get glaucoma from too much steroids, and I was praying hard for God to deliver me from this horrible nightmare. I woke up daily, unable to see but a cloud and goop coming out of my eyes. I had developed lumps in my groin area in 2009, and now they were on arms and neck. I went to the doc, thinking I might have lymphoma, but she said it was fatty tissue. In other words, the overflow of steroids were collecting in my fatty tissue.

If I count from February, this is my 22nd week of withdrawals and the redness seems to be easing up. Since I took the prednisone twice, the flares since April have had pretty much non-stop flares of epic proportions on my arms, hands and neck. Although my face was spared this time, the pain, cracking and burning have made me wish I was dead and caused a lot of crying and anguish. The only way I have kept the cracks away was to use the coconut or palm oil, and wear vinyl gloves all day and night for 3+ months. I have not worn the gloves for a week now, but still need the moisturizer to avoid cracks in my hands. My wrist bones have looked like they had no skin most of the time.

My flares seem to have come in increments at different times on my body, and I feel that the Epsom salt baths and eating a holistic low sugar/grain diet, as well as avoidance of arginine foods have possibly kept the flares from spreading like wildfire all over my body. The salts draw it out and sweating is the best way to release toxins from your bloodstream and body. My son got rid of his acne in the past by drinking lots of water, and literally making himself sweat most of the day.

Kelly set up a phone conference with Doctor Rapaport in June, for all the people that were emailing her. The conference was helpful, comforting and yet sad, because Dr. Rapaport told us it will take a long time to get the steroids out of our bodies. He also said that the steroids cause the skin conditions to spread and get worse, rather than help it.

The high levels of nitric oxide are what causes the burning flares, rash, weird symptoms and insane itching. He said he has helped over 2000 people through this and to stay OFF steroids for good. The body will get addicted fast if we used them again. I set up my Red Skin Syndrome website and Facebook Steroid Red Skin Syndrome page. Many people are afflicted and contacting Dr. Rapoport, Kelly and anyone they can to get help. I have met a lot of suffering people since the phone conference and setting up this website. It breaks my heart to hear of children going through this, and I am determined to reach as many people as I can for the rest of my days on this earth. Know that we are here for you and like Dr. Rapaport told us “YOU WILL GET BETTER.”

received by email

I am currently going through withdrawal, just started my 3rd month. I am in hell right now. If this is hell, I can’t imagine what real hell is like. I read your opinions on the “Whats’ Going On?” tab and couldn’t agree more with ever single word you wrote–you took the words out of my mouth. I want to tell you something, however. You mentioned (I didn’t catch the paragraph) that you’re sure these medications are legitimate in moderation. I want you to know I disagree with this Peter, because I only used a medium potency steroid ointment for one year before getting REALLY bad eczema a.k.a. addiction. I visit Dr. Rapaport often, and he confirmed with me he has seen patients addicted in little as 6 months! Sensitive immune systems, such as mine, get addicted quicker. Atopic Dermatitis a.k.a. eczema is caused by true allergens AND steroids! If you eliminate the true allergens (i.e. food allergies, pet dander, dust,
pollen, make-up, soap, lotion, detergents, etc), the eczema will vanish. The steroids not only perpetuate the eczema from the initial allergen, but I believe also CAUSE it. I would ask you to include this in your tab again. I used this ointment once a week, on only my eyelids and lips in small DABS for one year, and I still got addicted. Anywho, I am sooo happy you made this website Peter and look forward to hearing back from you. Do you have a facebook? Thank God your wife is so much better.

P.S. Yes, the pharmaceutical lobbies have the most influence in this.The companies pay for politicians’ campaigns for support once in office. I’ll scratch your back if you scratch mine, sorta thing. God bless you and your wife!

from a forum

This thread has been fascinating to me. I’ve been a psoriasis sufferer for nearly 20 years and up until a month ago I’ve been using one steroid cream after another. I’m a runner, and a couple of years ago my Dr ran a bunch of tests on me to help me with my training (everything from VO2 to hormone tests to food sensitivity tests) and the results that came back were startling. My adrenal system was basically shutting down, not only were my cortisol levels off the chart low the “peaks” and “valleys”, if you will, were completely opposite of what they should have been. I was also extremely low in testosterone, at the time I was 37 and I had the T levels of a man in his 70s. I never made any connection between the topical steroid use and my adrenal issues.

I work in a fairly high stress job and just figured my low cortisol and low T were byproducts of too much work stress. I’ve been taking T injections now for 18 months and my levels are now back to normal (I will have to give myself injections for the rest of my life, it’s really not that big of a deal) and I started meditating and regularly doing yoga to help manage stress and bring my cortisol levels back to where they need to be.

In the past month I’ve also weened myself off of the topical steroid creams and have been using a seaweed based lotion. The lotion seems to help tremendously and while I still have flare ups from time to time my hands, knees, elbows and ears/scalp have never looked better.

This thread has really opened my eyes. This disease is so freaking frustrating.

Another story
first week – previously unaffected skin now becomes red. the patches grow and merge together.
2-4 weeks – dry skin everywhere. massive flaking, lots of skin loss. eczematous skin is red and itchy, weeps when scratched. the onset of edema.
5-8 weeks – skin started to crack, especially joint areas like the neck, wrist, knee, and finger. skin feels thick and leather-ish, can’t feel my clothes brushing past it. cycles of “flares” observed, the flattened eczematous patches which have flatten over the weeks will rise again and be extremely itchy. most of the skin on my body is weeping, and with the chills i’m feeling i wrap myself up in the blanket, the juices won’t dry when i’m wrapped like that. : ( but there will be one or 2 days whereby the skin that wasn’t in touch with steroids is less red. since i applied on my legs, they remain red.
9- 11weeks – edema will be gone on some days and back on some days. started getting back my warmth, though i’m still quite afraid of air conditioned rooms.. the first sign was me perspiring, something i haven’t had for the first 2 months. skin still dry, but flakes much lesser unless i scratch that area and damage it. most of the redness on my body have subsided, leaving behind an orange cast. when i press against my skin and remove my hand, the area will go white for a second before turning back to the orangey tone. on certain days i feel better because the cracks have healed up, and my face isn’t feeling as sensitive.