Steroid Withdrawal

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by j.a.mcguire on Sat Jul 16, 2016 7:53 pm

Re: Steroid Withdrawal

I hadn't heard of the website but I'll take a look thank you.

I had a flare up about 24 hours after my last post and my face went bright red and totally inflamed again. I had to stop using the coconut oil as it seemed to make it worse and switched to applying olive oil on my face. It calmed down a bit but has been quite sore and Itchy the past 4-5 days.

I've tried all sorts to calm it down at the moment. I'm eating two tablespoons of olive oil 3 times a day to see if that will have any effect, I'm on day 4 of that and read that it may take a week or so to see any benefit if there is any.

For the past two days I've made a baking soda and water paste and applied that to my face, burns like hell and leaves the face looking angry and inflamed but actually seems to significantly reduce the itching. I left it on for 30 mins before washing it off then applied coconut oil afterwards to soothe the burning sensation, I think as long as I use the coconut oil sparingly I'm OK, yesterday when I bathed then applied coconut my skin was actually really good but when I tried it today it felt like pins and needles on my face so think I'll give the coconut a miss for a day or two again.

I bought some manuka honey which is NPA 15 rated, applied that to my face directly (which may not be the best way to do it, seems you're best off making a balm with other ingredients) it burnt like crazy when I put it on but actually it left a sticky mask on my face which kept my face quite comfortable for that evening and through the night.

Think I'm possibly trying too many things to know whether they're doing any good, just desperate to find something which works. Experiencing cold like symptoms at the moment, shivers down my back and down my legs, pretty much housebound again. New job starting date getting closer so looks like I'll be back on the steroids at this rate because I cannot function normally like this.

I read about Dupilumab, which seems like a bit of a miracle drug and might be available by 2017. Going to see if I can speak to my GP about it.

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by LCskinproblems on Sun Jul 17, 2016 3:49 pm

Re: Steroid Withdrawal

There is no way I could work with tsw but I know I am lucky to have support. Have you considered immunsupressant drugs?
I was offered Methotrexate or Azathioprine by a derm but I am too scared of the side effects. I know they help some people to get their lives back also Cycospoine.
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by Samanlee on Tue Jul 19, 2016 7:20 am

Re: Steroid Withdrawal

I have eczema and it's not getting any better. I needed to learn more once I walked away from the doctor's office so I started looking for apps, and then came across this wonderful app ( that helped me to keep track of my eczema flare-ups.

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by ElizabethO on Thu Dec 08, 2016 3:12 pm

Re: Steroid Withdrawal

Hi . This is my first exploration into forums but i am already feeling less alone in the world.
I am also relieved to hear about others who are braving to go against medical convention and withdraw from steroids. I have severe atopic eczema, suffering all my life it returned with a vengeance after i had my daughter nearly 12 years ago. It has deteriorated further over the last few months, i think due to a failed course of UVB (I acknowledge its success for many others) alongside stronger steroid creams and a course of oral steroids. I have now been signed off work after trying to patch myself up and 'get on with it'. I am in the midst of a serious flare up, feeling very unwell as I cannot regulate my body temperature. I am trying to go 'cold turkey' and stop using steroids but I am really struggling. My GP wanted to admit me to hospital and , to cut a long story short and after a huge failure in communication I was discharged with --- more oral steroids. I am not going to take them but after feeling so unwell with such poor skin all over my body I am wondering how long before I see some natural healing. The worst flare up is on my face so i am self imposed house bound as I cannot bear being looked at. Skin is literally falling from my body with a good mix of severe itching and pain. I am utterly convinced that the cycle of eczema is exacerbated by the use of steroids.
The other option the dermatologist is recommending for me is Methtraxate - has anyone used this with any side effect free success? I am terrified of this option as again, it seems severe and for life. Likewise, has anyone used pro topic treatments with success? My view is that the medical treatment model is very linear 'you are atopic and we treat the symptoms' and negates a holistic individual approach. It seems to me, maybe unfairly, that eczema treatments have remained the same for many years.
I have been gluten and dairy free for some time along with cutting out alcohol and restricting to one coffee a week (as a treat!). I am exploring further dietary options such a probiotics but despite all the amendments to my diet my skin has progressively worsened. I have been off work now for just over a week but realise i may need longer. I have also requested blood tests to explore thyroid and hormones just to see if there are any underlying problems.
Sorry for sounding so glum but I am sure fellow sufferers understand the cumulative impact of living with eczema. I am trying to stay positive but am disheartened with the constant quest to try and identify triggers . I am tired of being asked constantly 'what causes it'? as though i know but am choosing to ignore this. I am tired of hearing stories of people telling me about people they know with eczema that was 'cured' by using bizarre and obscure methods such as buying retinol A from the Middle East on the internet! My friend who always relays how she had a patch of itchy skin on her foot for years her GP diagnosed as eczema, she used cream for a week and then it disappeared......... Dont get me wrong, i am pleased for people who find a remedy, it just makes me feel more hopeless....
Still, I am going to continue with not using steroids, wait it out as I am fortunate to be signed off work i can rest more.
I welcome others views; support and reviews of methotraxate and pro topics..


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by Marcie Mom on Sat Dec 10, 2016 9:35 am

Re: Steroid Withdrawal

Sorry Liz to hear of the severe eczema and not sure what to recommend.. I've written a post on methotrexate years ago, and 2 readers shared their experience with the treatment ... hotrexate/

You can also start another thread in this forum and see if anyone responds.

It is quite a strong oral treatment and I can only think of being sure that you're working with an experienced dermatologist/ immunologist who you can trust.. the incorrect diagnosis of your skin condition (for it may be other forms of skin infection or a combination of more than just atopic dermatitis) may lead to wrong treatment.. it may not be possible to identify the cause or even the triggers, but diagnosing it incorrectly would definitely be bad for treatment. Steroid withdrawal is studied to be linked to misuse of steroid creams over prolonged period, and that in itself is not easy to diagnose given that there is no unique characteristic, have asked some questions to a doctor on it here: ... prof-hugo/

Take care and hope you'd find relief and recovery soon,
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by mikeworth on Thu Feb 02, 2017 6:30 pm

Re: Steroid Withdrawal

j.a.mcguire wrote:I have some time off at the moment and so I've decided to try to stop using topical steroids. I'm 33 and have atopic dermatitis. I had eczema as a child which went away when I was about 6, then prior to my GCSEs at the age of 14, my eczema came back with a vengeance and has stayed with me ever since. Not only do I have eczema but I also have a nasal drip and nasal congestion which is the bane of my existence.

My daily routine since the age of 14, was to shower using emulsifying ointment all over my body, and scalp. Afterwards, I applied betenovate all over my body, and 1% hydrocortisone to my face, I would then apply a layer of emulsifier over my face and the crooks of my joints where the eczema is worst. My scalp is badly affected too.

In 2013, 3 years ago now, I was working away and one of the guys I was working with asked me about my red skin. We got into a conversation about allergies, and he recommended that I cut dairy from my diet, and that it would probably take 6 months or more before I saw any improvement.

In 2013 I also saw a dermatologist, who recommended that I cut back on the steroids, and start using more moisturiser. Since then I started applying Doublebase moisturiser to my body, and I massage Aveeno oatmeal moisturiser into my hair and scalp after leaving the shower. I stopped using hydrocortisone cream 1% on my face, and began using hydrocortisone ointment 0.5% instead. Along with the lower strength, the ointment has more of a gel consistency which means I would not need to apply emulsifyer to prevent my face from drying out.

I cut the dairy, and I started seeing benefits within about a year. My skin cleared somewhat, although I'd still get redness and raised skin on my upper arms, behind the knees and hips etc. I was less itchy. My other symtoms of nasal drip continued and I suffer from real fatigue at work by mid-morning, and I find I'm yawning repeatedly and sometimes have tears coming from my eyes though I make sure I get 8 hours sleep.

In the middle of 2015 I started to feel like I could get by without Betenovate. And so I just stopped using it. I would get shivers down my back for the first few weeks, but they were mild, and I stuck to my regime of moisturiser on my body, and hydrocortisone ointment on my face and neck. My face isn't doing so well and in the mornings before showering I look puffy and sore.

I was reading online, and came across stories that suggest continued use of steroids serve to aggravate the symtoms of eczema and that they should only be used for short periods to prevent flare ups. According to what I've read forced abstinence can improve skin quality, however it is suggested that I will experience Topical Steroid Withdrawal, or Red Skin Syndrome. Well since I'm managing the eczema elsewhere on my body, I thought I'd give it a go stopping the use of steroids on my face.

I'm at the end of day 4 now. It has been 4 days of pain. I have noticed two immediate benefits however, my nasal drip has disappeared. I wake up feeling more alert, less groggy. It's probably too early to tell if these improvements are just coincidence. My face is seriously dry right now, I'm applying moisturiser every 30 minutes or so, and my cheeks turn right back to sandpaper almost right away. I'm going to the sink and washing my face 5-6 times a day, then applying the doublebase and a layer of emulsifier, which is longer lasting, but after a night's sleep I wake up with my face red-raw.

I've been pretty much house bound for the past 4 days, because as well as my face being seriously uncomfortable, I'm also experiencing chills down my back. I doubt I will be able to keep this up because I'm fairly incapacitated at the moment, I will be starting a new job soon, but also have errands to perform which means that I'll probably have to start applying the steroids on my face again.

In summary then:

* If I speak to my GP about this, is TSW or RSS a recognised syndome? Do you think they can offer anything to help or (as I feel is so often the case) would I be wasting my breath discussing it with them?
* Could switching to an immunosuppresant such as Tacrolimus be considered a good alternative to the steroids or would I then be stuck trying to ween myself off the Tacrolimus instead?
* One particular blog I read mentioned that it may be possible to have an MTHFR gene defect, which prevents the body from being able to repair skin cells. Have any of you been tested for this through the NHS and what were the results, how does one broach this subject with a GP?
* Has anyone invested in a silicone burns mask to try and prevent your face from drying out at night, are they expensive?
Protopic is worth a try as it doesn't have the side effects.
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by ShandaEllert on Fri Feb 03, 2017 7:33 am

Re: Steroid Withdrawal

Have you tried Apple Cider Vinegar diluted with water?
I have included my story below, but how I found out about ACV was when I was on vacation in Hawaii, we got really sun-burned and a friend told us to use ACV on our burn- I thought it sounded crazy but he said it works and is full of nutrients your skin needs! It cooled the burn down and kept it from peeling even!
So I immediately thought of my eczema flare-ups and haven't gone a day without putting diluted Apple Cider Vinegar on my skin- (after my nightly shower and on any cuts/scratches) I used to always get eczema on my face, inner arms, behind my knees, my ears, and chest.

Here's my story, hope it helps!

I am 31 and have had eczema on and off since Jr. High. For 3 straight years in my 20's, I also had eczema all over my face, neck, and chest! I went to doctors, dermatologists, got skin biopsies, allergy tests, blood tests etc, but they couldn't figure it out...3 whole years later, I finally did; I realized it was the chlorine in our water because my eczema had gotten so bad when we had moved to the city. Once I put a filter on our shower head, it went away in a few days! I still am prone to getting dry skin (I live in AK, so sometimes in the winter, the air gets dry, Or if I sweat when I workout, that causes my skin to itch too.)
But what I've found is: apple cider vinegar is the only thing that has ever helped my eczema and dry skin. I use it daily and dab it on any itch or scratch; and I also put it on (diluted with water) my face after my shower before going to bed.
*I always need to remember to dilute it when I put it on my face, because your face is sensitive, and apple cider vinegar full strength could sting and dry it out more. If u ever accidentally put full strength on; add water to your face!
*Also, if I have any cuts or scratches (which sometimes if I forget to trim my nails, and I accidentally scratch my skin) I use apple cider vinegar to dis-infect them, and then put raw honey over it with a bandaid. (If the scratch or wound is on your face, I put raw honey on it before bed, and cover that with a paper towel. Then just wash your face in the morning.
Raw honey is the best healer for your skin! It has so many nutrients your skin needs to heal and soften! If I have a dry spot on my face, I usually will put water on my face before the raw honey; that way the raw honey traps the water in your skin to hydrate it even more.
*Another thing is, in the shower; I don't use any soaps on my face or arms etc. If I have a dry spot, I usually put a dab of oil on it before hopping in the shower. This will help it retain the water in the skin.
*I also try to always keep my finger nails short. Just in case I ever accidentally scratch without thinking about it. (I've caused many deep cuts accidentally when I wasn't thinking about it, just itching my arm or leg etc.)
*One time I had accidentally rubbed my eye when I was itching from a cat allergy, and the next day I had a red dry mark right under my eye...for the life of me I couldn't get this big red mark to go away...I put vitamin e on it every day, several times a day to no avail. Then I read somewhere, that its not oil that hydrates your skin, but water! You need just a drop of oil after putting water on your skin, so it will hold the water in your skin. I immediately started just putting water on my skin without a ton of oil (a lot of oil just makes your skin hot and itch more usually!) -I just used a drop of healthy oil (olive, jojoba, etc) and it worked! The dry red mark on my face went away within a couple days!

I felt like I needed to write all this, because I remember what it was like so vividly- always doing desperate google searches to look for many said to use oil, but that made it worse for me! I tried prescription steroids, creams, etc.. to no avail...
My lesions would ooze, crack, bleed, get infected, etc! I could hardly sleep when I had oil all over my skin at night. It was so painful sometimes that I'd use aloe with lidocaine. It'd bring relief and coolness for the dry, itchy and burning feeling, but it still kept my skin looking bright red!
I also had lived off the raw food diet for 3 years, when I had thought that maybe I had some food allergy or something my body was intolerable to.

So I just wanted to write this in case anyone is looking for answers for their skin.
This is my nightly shower routine that has worked: water on my skin, then a little healthy oil on any dry spots if needed. After the shower, I put Apple Cider Vinegar diluted with water on my face. Lastly, if needed; Raw Honey on any open wounds.
This has been the only thing that has worked for my eczema- hope this helps whomever needs it!

Sincerely, Shanda

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