Steroids and eczema. Where we went wrong

Last year we went through eczema hell with our 2 year old daughter. Thankfully she is now doing really well and has very little eczema. I have learnt so much about eczema since, but back then I made some big mistakes that caused unnecessary suffering for my daughter. Although my intentions were good I still feel guilty for the pain that she went through.

With the benefit of hindsight I can now see the mistakes that we made and I have spoken to other parents who have made the same mistakes. In fact I suspect that many parents starting out on their journey with childhood eczema will make the same mistake.

When your child is first diagnosed with eczema you probably don’t know much about it (unless you have suffered it yourself).

But you are pretty sure that steroids are bad. They thin the skin don’t they? When your doctor or dermatologist prescribes steroids for your child you will probably research them more. The internet tells you that it is much worse than just thinning of the skin. Adrenal suppression, red skin syndrome, topical steroid addiction, stunted growth, enlarged lymph nodes are just a few of the horrors you will read about. And the pictures will give you nightmares for weeks. What is wrong with these doctors prescribing such dangerous creams,

As a result you may either avoid steroids altogether or use them less than instructed. I remember telling my wife just to use the steroid cream on the worst patches of my daughters eczema and just for a day or two.

My daughters eczema spread and spread. It became infected and she was so ill she was admitted to hospital. She had traces of MRSA on her skin.The dermatology nurse could not understand why the steroids were not working. When she asked if we were using them, we replied yes. What she did not realise is that we were not using them anywhere near as much or as frequently as she had advised.

My daughter was in hospital for 7 days and I stayed with her for most of it. Our wonderful dermatology nurse was so concerned that she visited my daughter in hospital on her day off. She found a little girl who was in so much pain she would not move or let anyone pick her up and a father who was a blubbering mess. (Thats me).

We had a very frank discussion about steroids and I admitted that we had not been using them very much. She told me that we MUST use them all over twice a day for one week and then reduce to once a day for three weeks and continue to reduce them over the next 3 months. She explained that my daughters skin was so thin that it would take 3 months to return to normal thickness. This was not caused by the steroids. This was caused by the eczema and the uncontrolled inflammation.

She explained that under use of steroids is the biggest problem that dermatologists see. Not overuse.

I immediately started following her instructions to the letter. Three days later the dermatology nurse visited again and found a different child and a much more emotionally stable father. Millies eczema was gone. Her skin was completely clear.

September 2014. These photos were taken just a few days apart. Left is before steroid cream. Right is after steroid cream.

We continued following her instructions and ramped down the steroids over the next 3 months. We eventually reached one application of steroids every 3 days. This is where we ran into trouble. When we tried to reduce to once every 5 days she would experience what is known as steroid rebound. The eczema would appear on her back and within 24-48 hours spread all over her.

The only solution that the dermatologists could give us was to stay at once every 3 days and try to ramp down again in a few weeks. We tried and tried but could not get past the one in three days regime. By now my fears of the side effects of steroids were creeping back. I made an appointment with a private paediatric dermatologist who confirmed that the strength and amount of the steroids being used did carry a risk of systematic side effects.

Fortunately after much searching I found a cream that allowed us to stop using the steroids but that is the subject of another blog. The message that I want to get across in this blog is that when it comes to severe eczema, the benefits of steroids far outweigh the risks. That is why the dermatologists prescribe them across the world.

So here is what I have learned about steroids that I would like to pass on to other parents who find themselves pondering the steroid question.

  • Under use of the mild steroids in the initial stages of eczema may mean that stronger steroids will have to be used later.
  • Use of an adequate strength steroid should be able to get the skin clear and eczema free. (while using the steroid)
  • Under use of steroids allows the skin to become inflamed
  • The bacteria staphlococcus aureous multiplies much quicker on inflamed skin but declines on skin treated with steroid.
  • The risk of thinning of the skin is associated with long term use (many years) of the stronger steroids.
  • Staphlococcus aureous emits a toxin that further inflames the skin and causes the eczema to spread. So avoiding using steroids on small patches of eczema could lead to much more widespread eczema.
  • Topical steroid addiction exists but is more common in older people who have used or abused strong steroids for a very long period. See my blog Topical Steroid Addiction: A neutrals guide through the minefield
  • Steroid rebound is real and it can be difficult to stop using steroids once started. However it is still better than living with out of control eczema
  • Steroid rebound is caused by Staphlococcus Aureous trying to recolonise the skin. Anything that reduces staph will help prevent rebound. A probiotic cream worked for us but bleach baths and antibiotic creams have worked for others.
  • Out of control eczema can lead to infections such as MRSA which is potentially life threatening.

Millie is now doing well maintained by just a probiotic cream. She gets just a few small patches of eczema and we rarely use steroid creams but if I need to I would not hesitate to use them again.

Millie enjoying an eczema free St Davids Day
Millie enjoying an eczema free St Davids Day 2015

3 thoughts on “Steroids and eczema. Where we went wrong

  1. Thank you for this post! A lot of steroid posts I read are wholly negative, forgetting to weigh up how debilitating it is to live with severe eczema and ignoring the staph side of things, so it’s quite refreshing to see a balanced argument 🙂

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  2. Your daughter is beautiful! Can I ask, are you still using La Rosche? Is it still working well for her? I tried the Xeracalm on my baby and it stopped working as well. I still have to use topical steroids on my baby too and it rebounds terribly when I try to taper or stop it.

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    1. Hi Karly. We do not use any cream on Millie now. Fortunately we do not need to any more. Eczema is an allergic response. After many painful years of searching we have found all her allergic triggers. Provided we keep her away from her triggers her skin is beautifully clear. One word of advice on steroids. People (including myself in the past) often refer to ‘steroid rebound’ but the rebound is usually nothing to do with the steroid. It is because the allergen is still present and when you stop the steroid, the immune response to the trigger starts again and the eczema comes back. Steroids get a lot of bad press but until the triggers are found they are the only effective way of stopping the eczema.

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