Red Skin Syndrome and Topical Steroid Addiction

Red Skin Syndrome and Topical Steroid Addiction

Many people have never heard of Red Skin Syndrome. in fact, it is a condition with many names: Steroid Rosacea, Perioral dermatitis, steroid rebound phenomenon and many more.

The term "Red Skin Syndrome" was coined by Dr Marvin Rapaport MD, an American dematologist who has worked with many patients suffering from eczema and found that overuse of topical steroid creams can cause nasty side effects when withdrawn. Common symptoms include weeping, burning skin when a steroid cream is discontinued. In many cases, overuse of potent steroid creams causes the skin to enter a cycle of addiction, with doctors prescribing more potent steroids to treat the worsening skin condition.

Steroid creams are an effective short term treatment for dermatitis, but prolonged use over a large body area can quickly spiral out of control. The more potent the cream, the more extreme the symptoms upon cessation.

The reason i am writing about this condition is because I myself am a sufferer. This is largely self inflicted. What started as mild steroid use for childhood eczema grew over years to a habit that had me requesting repeat prescriptions every week for strong creams such as betnovate and using them on innappropriate areas such as my face. By the time I realised what I was doing, the damage had already been done.

Coming off the creams has been awful, similar to quitting drugs. As soon as I stopped using the creams, my skin burned violently and oozed clear fluid. I felt tired all the time. Studies by Dr Rapaport and Japanese dematologist Dr Mototsugu Fukaya MD have shown that recovery from steroid cream abuse can take between 6 months and 3 years depending on the length of use and potency of creams used. The good news is that all patients improve after the withdrawal symptoms subside and their skin returns to normal. One well documented symptom of Red Skin Syndrome is skin redness that stops short of the wrist, ending in a white palm and hand, as I show in the picture. This symptom is common to all people who quit steroid creams.

I have started my own blog documenting this condition at topicalsteroidwithdrawal.bl...

The blog charts my withdrawal over many months and I also post photos of myself during the process. After 5 months, the improvement in my skin has been amazing.

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  • I wanted to give my account of red skin syndrome and how i managed to suppress the steroid addiction/withdrawal symptoms and I hope this will help many of you that are suffering from this dreadful horrible condition as it really surprisely worked for me. My journey of using steroid creams began in 2011. I had a flare up after reacting to chlorine while swimming and was prescribed betnovate C containing betamethasone 0.1% by the doctor. This worked a charm and my skin was clear in 3 days, but due to my bad judgement i continued to use it whenever I had a minor flare up. The flare ups became frequent each time so therefore I requested a repeat prescription from my doctor. I continued using it for a year, i then started to notice that my skin was thinning badly and the veins underneath my skin had become very visible. In my disappointment I immediately stopped the treatment, a few days later I started to feel weak and fatigued (possibly due to not tapering) however my face became very warm and itchy so suddenly and the itchiness just became worse and worse and would not stop and the heat became unbearable so I decided to Google and book an appointment with my dermatologist. After goggling I became aware of this weird disease that seemed so spooky and painful it was unbelievable that doctors are prescribing this drug continuously. The pain and discomfort were so unbearable that I had to take some time of work as I could not concentrate properly. After reading all the reviews, comments and having trued different things (ice, benadryl, apple cider vinegar,oilutum, diprobase etc) to ease the discomfort nothing was working and the warm weather made the condition worse. So I decided I would go back and start using it until I could find a cure that worked.

    I then spoke to a dermatologist who was very alarmed to hear that my doctor had continued to prescribe me this strong potent cream and she immediately told me to start tapering it off instead of abruptly stopping to avoid messing up my adrenal gland. However while I was still going through the steriod withdrawal my skin became a hot mess it seemed like my skin was trying to get rid of my old skin, the heat and itchiness reminded me of when I had a skin peel years ago (the feeling was similar) so I deduced that possibly the skin on the surface was so damaged by the cream that my body might have been trying to get rid of this skin. Therefore I had to put my theory to the test,firstly i decided to taper off the cream for 5 months for the good of my health, this also allowed me to wait for the cooler/colder weather to set in, Within this time I did major research about the syndrome and it was saddening to know that I would have to go through the long anguish at some point in my life as there was no plausible cure this was unbearable and unthinkable for me.

    5 months came and I could stop and it was early October 2012 and the cold had set in, I then ordered a jar of skin barrier repair cream to help boast the lipids in my skin after the peek which I gad read was helpful to people with harsh eczema. I should also say that after reading about how some eczema suffers have reduced their symptoms by eating non gluten products I decided to change my diet as well and I no longer eat any bad gluten products, I now only eat whole grain organic foods no more bad foods for me.

    At the same time I also ordered a bottle of TCA 15% facial peel from a reputable clinic in the UK (I don't want to mention the clinic cos I don't want to sound like am selling someones product on this blog) I recommend that you guys find a good skin beauty clinic online that sells skin peels responsibly or go have it done professionally. As I had done peels before at home I decided to do it at home where I could monitor my own progress, 2 days after receiving my TCA peel iI finally did the at home peel, it was painful for the 3 - 4 minutes but after neutralizing I was fine (I had done skin peels a few times several years ago). It took 8 days for the old burnt skin to completely peel off and new skin to come out. FYI with skin peels you have to allow the skin to peel naturally otherwise you scar and cause more irritation. (PLEASE READ MORE ABOUT PEELS BEFORE ATTEMPTING TO USE AND IF ITS YOUR FIRST TIME TRY A LESSER PERCENTAGE LIKE 8 - 10% TCA PEEL PREFERABLY, DO A LITTLE RESEARCH TO GET THE FACTS ON HOW TO GET THE BEST RESULTS FOR YOUR SKIN TYPE). You can try any medium peel depending on your skin type but for me TCA is the best and its versatile - (glycolic, lactic acid peel are less effective as they remove skin microscopically but TCA removes old skin off literally).

    So after the revealing of the new skin I slathered the barrier cream and sunscreen and stayed away from sun or uv rays to not cause any damage to the new skin. I was very anxious, just waiting for the pain, heat and itching to start again but a day passed 2 days then 3 days then before i knew it was a week and now its been a month and half and have not had any symptoms. I only used the barrier cream for 3 days then stopped (forgot) so this is not really necessary but just in case you want to make sure you get the same results as me buy a good barrier cream that has lipids (again I dont want to sell anyone's product so I recommend you do intense research online there are quite a few good barrier creams to chose from).

    So i hope this will help someone out there who is suffering with this syndrome as it really worked for me. Words of wisdom - please be cautious with the skin peel this is an acid that is really dangerous and requires a lot of care - if doing at home skin peel buy one with full instructions from a reputable dealer who will take responsibility if you have any problems or questions. Please if you used steroid creams or steroid products over the recommended time (1 week)you need to safely taper it off as an abrupt stop can be fatal (read about tapering online and speak to your doctor/gp to get help with tapering). Hope for the best for everyone with this syndrome and lets kee spreading the word and making people aware of these dangerous products,

  • Hi loopy-lou33 and shana29. Thanks so much for sharing, I've also looked through your difficult 18 month journey. I take my hat off to you as I just don't think I can do it cold turkey. Which brings me to your post Shana29 and your potential solution by weaning for 5 months then applying a peel.

    I have suffered with this for around 5 years now and it has only been the last 6 months that I have actually given it a name. I initially had a bit of eczema on my eyelids and in my search for a natural herbal non prescription cure I came across magicream123, which I used merrily on my face since then. Thanks to this 'miracle' cure, I developed what I now know is perioral periocular dermatitis. Please do not use this cream as I now know that it contains dermovate - a very strong topical steroid!

    I am now seeing a dermatologist who has so far ran an allergy test and prescribed pro-topic.

    I find that protopic (tacrolimus) is useless for me, it makes my face feel like it's on fire and darkens and flakes the affected area and makes the rash worse. I may try it again if I ever get on top of the rash to treat flare ups, but right now it is useless.

    I have tried:

    - Elimination diets to find the allergen - nothing conclusive - although removing bread/flour did help.

    - Apple Cider Vinegar - eased some of the redness, but the rash prevailed

    - Lavender & tea tree oil in jojoba carrier irritated

    - Lemon juice (50/50 water) - I know, but the skin is naturally acidic and it has been a help for some, but not me.

    - Violet extract - no help whatsoever

    Grapefruit seed extract - no help

    - Bicarbonate of soda mixed with a little water and used before my soap free cleanser - reduces the 'rage' of the rash

    - Yoghurt masks - lovely and cooling, but still no cure

    - Calendula Cream, Shea Butter and Coconut oil to ease dryness - all fine.

    A point of note that with almost all of the natural remedies, I have seen some calming effect in the first 3 days of use, but then the flare up begins. The steroid withdrawal symptoms start after a few days so I think that is all that is happening and the remedies just aren't sufficient to counteract the effects.

    I also find that when I exercise I get a little flare up, also mid cycle so hormones obviously play a part here.

    I am now applying a tiny amount of magicream directly onto the blistered area once or twice per day for no more than 2 or 3 days at a time to get it under control and then going cold turkey until it flares up again in an effort to wean myself off. I will then after a few months of weaning try a peel and hopefully this will do the trick.

    I will post back in 6 months to let you know the result. Fingers crossed!!

  • Hello, I'm a 20-year-old college student and I have been using steroid cream for 4 years now. It was just barely this September 2013 when I stopped using steroid cream and started breaking out in these red-pimple-like-rash-look-alike. I don't know what to do. I went to go see a doctor and he labeled it as acne and prescribed me Retin-A and Clindomycin. However, the alcohol in the Clindomycin was so strong that my face start having an allergic reaction. I stopped using the medications altogether and don't know what to use anymore. This week I started using the steroid cream again...for 3 days now and I know it's bad but I can't help it. What should I do when I stop using the steroid cream and my symptoms come back? My doctor prescribed me metronidazle but will it work for this? I have felt so depress, I don't want to socialize anymore and have a hard time studying for my exams. Can anybody help?

  • I know EXCATLY how you are feeling!

    I have been using steroid creams for at least 5yrs and I was concerned about the long term effects so i decided to stop. As soon as i did it was like my face exploded! red, itchy, weeping mess.

    I spent the summer with my sister researching natural cures. Sadly we have to go through this painful stage of the red itchy weepy skin before it can start to heal. However we did find two things that will be very helpful.

    1. Is to make a facial mask out of NATURAL icing sugar and olive oil. It has to be NATURAL icing sugar so it won't have any chemicals in it. This helps stop the itchiness and over a few days will stop the weeping. Over a few weeks the redness should subside too. here is a link for it, sugarwasafriendofmine.wordp...

    2. Is a skin care cream specifically designed for Perioral Dermatits. Now i haven't tried this myself, i have though ordered some and it is on its way. It is a water based gel and cream that comes with a specific soap that helps soothe the Perioral Dermatitis. here is the link for it if you wish to read more about it. osmiaorganics.com/articles/...

    I wish you all the best and hope these help. And a word of advice, STOP using the steroid creams. TRUST me i was like you and continued to use them as i didn't want to look like a monster in front of others and i chose to sit in my room instead of socialise but continuing to use the creams will only make things worse.

    Hope this helps, stay strong!

  • Hi, I'm the father of a Red Skin Syndrome child. The story is the same, over and over. Our son had eczema as a baby and that's where it all started. The creams prescribed would work for a bit, then a higher powered one would be ordered when the skin wouldn't clear. Allergy tests were performed often and would show he was allergic to most everything. We now know that was because his skin was inflamed and sensitive to everything. We tried every home remedy you could imagine and nothing helped. Through research we found Dr. Rapaport in Beverly Hills. We flew out there from Florida and spent 5 days and 3 visits. It was there that we learned there isn't much you can do but just stay off the steroids and let your body fight it out. We are approaching a year after his last steroid cream and we are finally in the home stretch. We were teased on several occasions into thinking he was healing, but then another flare up would occur. Hang in there, because the flares get further apart and less severe. He still has some sores, but at least he doesn't look so bad that people stare anymore. He still stays awake all night and sleeps all day, though he is beginning to change that cycle. Bottom line, IT WILL GO AWAY OVER TIME. This condition is so awful that it can lead to suicidal thoughts for people that incorrectly think they will have this for the rest of their life, which is what our dermatologist told my son. Time is the best medicine for this awful withdrawal from steroid use. I hope this brings some comfort to anyone suffering through this. You are not alone.

  • Hi I'm experiencing the same thing right now, my daughter is 4 we also see Dr. Rap the worst part for me is relieving the itch. We can hardly go out anywhere because she starts to scratch and people stare. It's been really tough. I feel a little relief and feel there's hope when I hear about others experience and feel I'm not alone. Such a difficult experience.

  • Hi my daughter who's 4 has red skin syndrome 4 months TSW seems like the skin is more itchy now but looks slightly better. I notice the palm of her hands look white like the picture and I was wondering if that's a sign of healing? Also did anyone also experience swollen lymph nodes under arms and between thighs they seem abnormally swollen but Dr. Says its part of the skin condition.

  • Hi the white palms is typical of steroid addition. The swollen lymph nodes are also typical during the healing process. Stay the course, stay away from all forms of cortisone, keep her comfortable and she will heal

  • Hi all!

    I'm a 20 year old, full time college student who also works full time. All my life I was prescribed the topical steroid creams and I want point carried and used on an hourly basis 4 different levels, from hydro cortizone, to the very intense bethylmitizone, I think is how you spell it. In the past 3 months, my skin became so bad that I was prescribed and took the oral steroid prednisone on a double daily basis... This was one of the worst things that ever happened to me. While for weeks I had wonderfully clear and smooth skin, as soon as my pills ran out, I would harshly break out in red, bumpy, cracked, flaky flare ups across my whole body especially my neck, ears, face, arms and legs. Recently I discovered these were all symptoms of RSS... I've immediately quit cold Turkey and my skin has gotten a bit worst, while I've read that the journey for most is between 6 months to a year. It's been 2 weeks and it's been decent. I've created a mixture of coconut oil and emu oil and both have soothed the burning of my skin. While it's not fun I can't wait for this crap to finally be out of my body so my skin can be normal again. As stated above, it's nice to know others are experiencing and fighting the same batte.

  • Snap. I'm 20 too and in the same boat. Mine suddenly got out of control and was put on 30mg prednisolone for 7 days then minus 5mg every 5days. Works wonders, I have my life back for about 3 weeks until I reduce the dose/come off it. Literally been on and off the tablets since October, keep needing to go back on them when I finish. Was wondering what you meant by RSS in that post. Also how is the cold turkey going? I'm on day 5 and have been bedridden due to extreme dryness,some weeping and all the other stuff. Tempted to ask for another course of pred.

  • Mark rss is red skin syndrome or topical steroid withdrawal etc sounds like you might have this. I suggest you stay away from cortisone and prednisone until u do the research and understand what these do to your body and you might find that if you go through topical steroid withdrawal ( tsw) In time you will heal

  • DO NOT ASK FOR MORE PREDNISONE IT WILL ONLY LEAD TO A REPEDITIVE VICIOUS CYLCLE UNTIL ONE DAY YOU WILL GET NO RELIEF FROM MODERATE DOSAGES< SO YOU WILL KEEP UPPING THE STRENGTH. Pred kills your body I know I have been on and off this for 7 + years now I stopped all pills and creams and realize it will be a long painful time before I get my life back!! Red skin syndrome is painful and slow but with the many testimonies out there there is HOPE>

    Good luck to all and lets end the suffering. |I found eliminating gluten very beneficial for my itch levels but I was very very hungry all the time.

  • Look at itsan.org and search on Facebook for groups and you will unfortunately find many people going through it. My daughter did, it took 8 months of hell but now she's fine. Best to you

  • Hi, I'm wondering how your experience was with quitting "cold turkey" I've been on prednisone on and off for 3 years now. No cream every worked for me.

  • Healing From Steroid Addicted.

    Hi! My son 4,5, suffered from severe eczema since 2 years ago. Doctors gave him some steroid creams from mild to strong, and gave suggestion to even put hydrocortisone on his face. My son eczema were on his neck, angkles, arms. I didnt know a lot about the dangerous of the those steroid creams so i put on those cream on those skin area. The problem then get worst, every time i stopped using the creams, his skin became so bad, just like people described in this blog. His itchiness also increased so bad. I also noticed that after i used those steroid creams his eczema spread and spread until the area on his skin that affected by eczema wider than his normal skin.

    Since about a month ago, i have stopped using any steroid creams for him at all. I gave him black seed oil organic every morning one table spoon, then i put on cream that i made my self for all around his body (i get this recipe from one of the mother who her daughter also suffer from severe eczema).

  • Hi Lilawsl,

    Can you please share if the black seed oil and the cream are helping? I have heard a lot about the black seed oil but have not been able to get the cold pressed oil. Also if the cream is helping, we would appreciate if you can share the ingredients and the process of making it.

    Thanks

  • Not sure if my replies are showing up....

  • How long do you have to be using steroid creams for before your skin gets addicted? My GP gave me Betnovate and I used it for about 6 weeks, but it didn't help so I stopped using it.

  • It varies depending on the potency of the cream, the area applied (eyelids and genital area absorb most) and amount of cream used.

    Current estimates state that people can get addicted in as little as two weeks steroid use.

    If you used betnovate daily for 6 weeks then you would stand a high chance of developing steroid cream addiction.

    Check out the FAQs on itsan.org and see if your symptoms match up.

  • Thank you. I used it on my legs. GP thought I had urticara so she changed my antihistamine and gave me betnovate. I did use it once every day, to no avail. So she doubled my dose of antihistamine. I stopped the betnovate as I felt it was making matters worse. My skin was already red, so didn't notice any change. I stopped using it around April. Legs are still itchy and red, with a lot of soreness too. I've had a punch biopsy to see if they could find out what was causing it. Get the results (if any) 18th June. I've looked at that post. I did the questionnaire about steroid use. I didn't realise it would include inhalers and nasal spray too. although I no longer use the cream/ointment, I use inhalers and nasal sprays all the time due to Sjogren's Syndrome and Bronchiectasis!! Not happy now as I can't stop those!!

  • Don't worry too much about the asthma inhalers. I'm on them too, but my skin still healed ok. I don't mess about with inhalers!

  • Thank you. Don't think I have this though, as I was itching long before I used the Betnovate.

  • Wow I never knew that your skin can get addicted to creams ,yet when you really stop and think it's just the same as a pain killer for instance Dehydracodiene it's the codeine that's the problem so it's steroids that are addictive .Thanks for this info very interesting . Enjoy the evening loopy . Best wishes Dodi.👍🙋😊😃

  • Hello, I live in Northern Ireland and was wondering if anyone knows of a Doctor or Specialist in the UK who would help me with the withdrawal process?

    Thanks,

    June

  • Hi guys i want to share my topical steriod withdrawal journey , i have been using a tube cream which contained betamethasone a somewhat potent steriod to treat eczema and rashes for roughly 7 years.i stopped and went cold turkey last year October when i discovered the dangerous side effect. It wasn't easy i had serious red rashes all over my face for about 6 months. But i thank i was able to help my situation i started using jojoba oil and a mild soap, (neutrogena transparent bar soap) .then i switched to argan and grape seed oil which u would say is working very well. Although my face is very very sensitive now i mean the face on my skin is serioisly prone to any sort of irritation but so i use purely organic products i also do oat and honey face mask 3 times a week i use grape seed oil as a toner and argan oil as a face moisturiser and to be sincere my face seems healthier asides the time to time skin rash and all. So please if you are going through any side effect of steriod withdrawal i want to encourage you to be strong its just a temporary situation

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