Long term use of steroid creams for eczema

[Respberrypachouli]

i wonder if there are any mums here whose children were on long term use of topical steroids for eczema? My DS was under dermatology clinic for 3 years and in 3 years his eczema went from bad to worse but what’s more concerning we weren’t ever told what side effects can stopping steroids cause.

if you child had bad eczema how did you treat it? If they had also had to use TS how did your child’s skin react when you stopped?

I was diagnosed with eczema at six weeks old and used topical steroids for my entire childhood. Why would you stop using them unless the eczema clears up?

Because long term use of TS especially potent ones (my DS was using betamethasone with cloquinol) can lead to all sorts of skin issues like thinning and also to TSW which is painful and often cannot be easily treated. To add, TS cream only provides temporary relief and his eczema was never 100 percent gone…

I've had eczema all my life and my children had it in their early years
The steroids don't seem to have caused any damage to their skin and they both have, more or less, grown out of it
I have patches that don't really go. One foot was the worst and in-between the toes. As it was improving with the steroid cream I could see more developing underneath. It was just an endless cycle which the steroid cream just seemed to speed up. Last year I stopped using the steroid cream and used a healing cream with ceramides. I used moo goo. Very liberally
I used to manage DC eczema with liberal use of emollients
Anyway, the moo goo has cleared up my eczema, after all these years and all the steroids. The moo goo is expensive so i am now using cerave which has ceramides in but not as many. Still use it liberally and, if it fires up, I go back to the moo goo
Good luck. Eczema is horrible

My son had terrible eczema as a baby, thankfully after being referred to dermatology we found the right balance. The biggest changes we made were to bath daily but with emoluments in the water every time, we moisturised all the time. Then with the steroids we had to wean off ... flare up meant 2 weeks every day, then every other day for 2 weeks and then 2-3 times a week and then once a week. It took what felt like for ever to wean off but it meant that flare ups weren't happening immediately after stopping the steroids. Thankfully after a few years it is under control at the moment (touching all the wood). He also has allergies and so that has helped too (cutting out foods)
BUT every child is different and the difficult thing is finding the right treatment xx x

As a child I had severe eczema on the backs of my legs, it was treated with betamethasone for years, not sure exactly how long but about 4 years. By the time I was about 10 the eczema was improving and I needed to use the ointment over a smaller area and less often. It's important to use it as sparingly as possible, and to wean off, not suddenly stop, to avoid getting rebound flare ups.

That was back in the 1960s, and I have had no problem with side effects, the skin on my legs seems to be fine.

My skin in my inside elbow creases became permanently wrinkled due the continued use of Synolar cream over many years. This was back in the 1960s. I assume that my mum knew no better, but she isn’t around to ask anymore. As an adult who still suffers, GPs are from careful in their advice when prescribing to me now, and I assume they would be extra careful with children.

@WeAreOnTheRoadToNowhere thank you for moogoo recommendation, I’ve just ordered it and I hope we can see an improvement too! I think I’ve tried every cream there is already so we definitely don’t have anything to lose.

@Cric yes, I’d like to wean hiss off steroids but I never actually got to the point where I needed them once a week because it seems like his hands always have eczema it doesn’t matter what we do… maybe we need to look into allergies. Did you request to investigate it from GP based on eczema? Because our GP doesn’t seem to think it’s related as there are no other symptoms.

@BalticTellin glad to hear your little one is eczema free! Hope we can get to that point with my son. His eczema is on his hands and I feel so sorry for the little mite with hands being swollen cracked and itchy. Plus he always get comments from other kids which is upsetting

When we were at our dermatology appointment I said that I thought there could be allergies involved (I was breastfeeding at this point). She didn't agree but was happy to rule it out with a blood test. It can back as an egg allergy and it made such a difference when I stopped eating eggs. He then had a big allergic reaction to sesame and so ended up in that clinic too.

With his hands being bad, are you using soap? If so, I would replace soap/hand wash with emollient

Thanks @Cric ! I might take my son back and ask for allergy testing. I think he might be sensitive to cows milk and something else which I’m not sure. Yes, indeed he washes hands with soap! How did I not think of that, especially at school…

There's a Facebook group for caregivers with children going through Topical Steroid Withdrawal. It's worth reading more from people first hand who have had children's eczema get worse. But actually has been an addiction to the medication. Withdrawal can be horrible. I'm four year into withdrawal and much better. Children seem to heal faster due to the shorter length of exposure. Topical steroids do contain warnings now, but it's a very under researched and known about syndrome. The warnings in packets only came about as so many people filled in yellow forms about their addiction/withdrawal. Ao yes it is a 'thing' and you should be concerned about it. X

@CaptainMum that’s my biggest worry! Because my son started off having eczema on his hands and now he seems to have it on his hands, face, knees, elbows etc. it’s not getting any better! And it’s not responding to steroids either. Thank you for pointing me to FB page. I will surely have a look 👍