Steroid Withdrawal

[j.a.mcguire]

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?

[CC-Paul]

Sorry you are having so much trouble with your eczema. It does seem like if you are taking a form of medication there are side effects that make it even worse than being off it sometimes! It can be very tricky. Hopefully one of the experts can help you out on this forum with your queries.

[j.a.mcguire]

Yesterday, day 5 was a bit of a breakthrough. Started off feeling worse than ever, face completely inflamed with swollen eyes and cheeks.

Decided to switch up my moisturisers as they weren't really being effective. Stopped using Doublebase on my face and began using a layer of Aveeno cream, after applying that I applied virgin coconut oil. It stings a fair bit at first but I could feel the benefit after a few hours that my skin wasn't immediately drying out and the application was lasting about 3 hours.

I've not used the coconut oil as a moisturiser before because I'd tried it and it does burn on application, but once you get past that it seems to work really well. The brand I have is called Coconoil.

I've been taking baths with Oilatum every day, yesterday I only used one capfull plus added oatmeal wrapped in a cloth and washed myself with that. Not convinced the oatmeal made a huge differece but quite liked it. I then applied the aveeno and coconut oil upon leaving the bath again.

I still had the back shivers by 6pm, so took some paracetamol which seemed to help. My face was showing visible signs of improvement and the inflammation had reduced quite a bit. Did my final coconut oil application before going to bed and this morning it seems to have lasted almost all night.

Nose is running again, I think maybe that only stopped because my face and sinus area was so dry days 1-5.

I've not excercised for the past 5 days due to feeling so rough, but I feel strong enough to get back to it today. Fingers crossed the coconut keeps working its magic.

Biggest concern right now is how I could start a new job looking like a greasy mess with the oil on my face.

[talkhealth]

Thank you for sharing your story with us, and for the support Paul. I hope it gets easier for you.
I have attached a link to a blog post on ways to manage steroid withdrawal that I thought may be useful for you to look at...
http://www.talkhealthpartnership.com/bl ... l-symptom/

Let me know what you think and how you are getting on.

Helen

[j.a.mcguire]

I didn't intend the post to become a 'story'. I was trying to document the severity of my eczema and my use of steroids so that if others have experienced TSW they could make comparisons in their replies. I think the suggestion to try meditation is a bit...frustrating? Well it's not what I was looking for put it that way.

End of day 7 of steroid withdrawal. Coconut oil working well at hydrating my face and neck when sealed in with a layer of emulsifier on top. Pain subsided quite a bit but I am still drying out after long periods of leaving the house or sleeping, after which the next application is quite painful and burny. Face is less puffy though. I intend to carry on with it as long as I can, hopefully I will have made some improvement by the time I start my job. As it is I still have to reapply the various oils/moisturisers every 3-4 hours and it stings quite a bit when doing so, so still feeling like I will have to revert to my once-a-day steroid application in order to function normally.

[talkhealth]

Hi,

Sorry the use of the word story wasn't intended to offend you. We have members and bloggers that when they share their experiences we use the term story so it is a term we use at talkhealth. There is a blogger called Ruth who may be interesting for you to read her blogs- she has a few about steroid withdrawal.
I have attached the link here if you wish to have a look- http://www.talkhealthpartnership.com/bl ... or/ruth_h/

I am glad the coconut oil is helping, are you using a particular brand. I hope it clears up for you starting your job, when will you start?

Helen

[LCskinproblems]

Hi just reading your post on stopping Topical steroids
I am now in month 17 of stopping steroids cold turkey because the steroids stopped working for me. It has been hell especially the first few months. I was a long term user so I expect this may go on much longer. I wish I could find a DR/ Derm in the UK that believes in this

[talkhealth]

Hi, thank you for you post. I am sorry it has been so hard for you stopping the steroids. What have you found to be helpful with this?

There is a consultant psychiatrist that blogs for us that talks about steroid use and how behavioural management can also help. If you would like to read his blogs the thread is here...
http://www.talkhealthpartnership.com/blog/author/drb/

Helen

[j.a.mcguire]

If you're really suffering there's a group I heard of on Facebook called Dr. Aaron. You pay something like £100 for a remote consultancy, send in a bunch of photos and he creates a non-steroidal prescription for you which I think costs £30 for the initial batch (I've no idea about repeats etc) I think some people manage to get their GP on board and get the prescriptions free. I only heard about him through my cousin who has her son on his programme, I can't vouch for it or anything but if you read on the facebook group there are lots of positive messages and he has videos on Youtube where he is presenting at conferences, there are a lot of UK users of his programme so presumably you could enquire about their experiences. I believe his creams include anti-biotics which is what actually put me off trying it.

I'm actually doing really well just using my combination of oilatum baths with a handful of oatmeal wrapped in a cloth added in as well. Then once I'm finished I apply my face with aveeno, followed by coconut oil, and then add a layer of emulsifying ointment. I'm doing the facial applications about 3 times a day and im almost back to the same level of normality which I had with steroids. I think I'm on day 9 or 10 now of steroid abstinance, and last night for example, I applied my moisturisers and oils at midnight, went to bed, woke up this morning at about 8, skin was dry but no significant redness or puffyness. Washed my face and no significant pain. I had been using steroids on my face and body continuously for the past 19 years.

I went to superdrug the other day and bought some Aloe Vera Gel 99.9% pure, cost about £3 for 100ml but you can get it cheaper online. It works ok, doesn't last as long as coconut oil but is supposed to be better for reducing acne (apparently coconut oil is quite bad for this but I've only had a couple of spots and I'm pretty clear at the moment). So I've been using the Aloe Vera every now and then but not significantly. It's probably something I could take to work and have on the desk for emergencies.

It's still difficult because previously I was only applying the steroids once a day. But touch-wood I'm hoping I'll see further improvement on my face.

[LCskinproblems]

Thank you ...I am very wary of Dr Aaron because he uses steroids and thats what has caused my problem. Good to hear you are doing fine but I hate to say after 19 yrs its early days. Have you seen ITSAN ? A site for people suffering from steroids? Not to be confused with Etsan that advocates steroids. Wishing you continued healing.