Steroid Withdrawal
Posted: Mon Jul 04, 2016 12:53 am
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?
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?