Steroids help control eczema by reducing inflammation (redness, swelling). People tended to say they only use steroid creams/ointments when their eczema is flared-up. Although Anissa and Laura had heard that topical steroids shouldn’t be put on broken skin, the only time when steroid creams shouldn’t be used is if the if the eczema is infected.There were concerns about steroids but people also found it worked and made their eczema less red and itchy.
The steroids young people had used for their eczema varied in terms of:
- main steroid type/ingredients – for example, hydrocortisone or clobetasone (Eumovate, Trimovate) or betamethasone butyrate (Betnovate)
- form (cream/ointment, tablet, injection, eye drops)
- potency (the strength of the steroid) and concentration (some steroids are available in diluted strengths)
- for different body parts
Dr McPherson talks about how steroids work and the different kinds used for eczema.
Dr McPherson talks about how steroids work and the different kinds used for eczema.
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How do the topical steroids work?
Okay. So these are all really good questions. And, you know, we don't have very good answers to all of them. Topical steroids are quite kind of- they work in lots of different ways. So it's not a very sophisticated targeted treatment, but we know that they reduce inflammation. We know that when they're used on the skin, there's very minimal absorption. So, you know, they're safe to be used on the skin. We know that they're very effective in eczema, we've got lots and lots of studies which show the benefits of topical steroids far outweigh any risks. And there are risks to using the wrong strength of steroid for the wrong amount of time in the wrong body area. But mostly, your doctors or dermatologists will advise you sensibly to use the right strength topical steroid. And if anything, we're probably moving towards using slightly more potent corticosteroids topically, to try and keep the inflammation well controlled, rather than using inappropriately weak ones which never get it under control. So how they work is complex. But we do know that they do work, and that they're safe to use.
So, corticosteroids do come in lots of different potencies and strengths, and they have lots of different names. But, you know, it can be quite confusing I think for different people. So it's best if you have a kind of plan which shows, tells you which one you're going to be using. Often we use a different one for the face than all the rest of the body, just because the skin is thinner on the face. Most people we find under-use their corticosteroid treatment, rather than over use it. And it's very unusual to see side effects from the use of corticosteroids, because I think people are quite cautious, often overly cautious, with their use. So we would normally use a moderate to potent corticosteroid on the body, to control eczema. And we'd use it once a day. And most of them, they all need to be used really just once a day, for one to two weeks. And then we do something called proactive treatment. So we treat the flare-prone areas with weekend use of these corticosteroids to try and keep the activity of the eczema down. Because know that even when you're not seeing eczema, there's a lot inflammation in the skin. And so we, you know, by knowing this, we know that we have to treat those flare-prone areas regularly for some time in some people.
We would use, normally use a mild to moderate for the face. And, you know, with the eyelids, can be particularly- they are, you know, one area that you do probably need to be a little bit cautious about is around the eyes. And that's where we might use something like Protopic, or tacrolimus, topically to those areas. Which is a non-steroid anti-inflammatory, which works on the inflammation of eczema as well.
Aadam talks about how he decides whether to use steroid cream on his eczema or not.
Aadam talks about how he decides whether to use steroid cream on his eczema or not.
Age at interview: 18
Sex: Male
Age at diagnosis: 1
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I usually intensively cream myself for like two days. And it can either get better or stay the same or get worse. If it stays the same or gets worse then I decide it’s appropriate to use steroid cream. And, yeah, I am usually quite a wimp with the steroid cream well I used to be because it used to sting really bad.
Everyone we talked to had used topical steroids (rubbed onto the skin, usually creams or ointments). Aman used a steroid ointment, which is thicker than cream, but found it ‘sat’ on his skin and made him itchier. Georgia, Aman and Vicky have also taken steroid tablets. Aadam uses steroid eye drops and has had steroid injections into his eyelids to help with keratoconjunctivitis (an eczema-related eye condition). People who had only used steroid creams/ointments said they prefer having something they can put on the skin and didn’t like the idea of steroid tablets to swallow. Some people had a particular type of steroid or brand of cream that they found worked best for them, but couldn’t always get hold of it.
Katie-Lauren was prescribed a particular steroid cream but found it was out of stock in pharmacies.
Katie-Lauren was prescribed a particular steroid cream but found it was out of stock in pharmacies.
Age at interview: 19
Sex: Female
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And I like to stock up on my cream, especially the steroid because I went to the medical centre two weeks ago cos it was really bad. And they prescribed me a steroid cream. And I went to Superdrug cos that’s the closest pharmacist. They said that they didn't have it because it was a global manufacturing problem and they have not had it for months. So I went to Boots and they said the same. So I had to go back to the medical centre and get a different prescription. And then, she said, the woman at Superdrug said, I was lucky, because I got the last ones that they had. So I try and use it, I try and not use it, but I try and stock up because you never know when the creams are going to run out.
Has that happened to you before, where creams that you have been using and getting on quite well with have, they’ve stopped producing them or they are just not available?
No, I mean, sometimes I have to wait like a couple of days for them to order it and get it in. Maybe sometimes they will just give me a smaller amount for time until they give me the full amount. But I’ve never had it where it’s been like a manufacturing problem and they can’t make it any more, which is kind of sad because the steroid cream I was wanting to use – I know has worked in the past. But I’ve got another one now, so that’s alright. [Laughs].
Shams prefers a combined steroid and antibiotic cream, usually prescribed if the doctor suspects the eczema is infected.
Shams prefers a combined steroid and antibiotic cream, usually prescribed if the doctor suspects the eczema is infected.
Age at interview: 18
Sex: Male
Age at diagnosis: 7
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One example is, there's a cream called Fucibet that, when I was young I was prescribed to a lot, when my eczema was really bad, and I still insist upon getting it every time I go to the doctors. I really don’t like using any other certain ointments or steroid creams. And it's because I've used it before; I know to the extent it works, but the doctor’s sort of argument is that apparently such creams have a negative effect, such as a skin thinner, as it may thin my skin that, to which I always argue to a doctor I would rather have slightly more thinner skin than have to deal with eczema. But the other issue with that is doctor…doctors have also said that long term use of a certain steroid will sort of decrease its impact which may or may not be true but I've heard from doctors that if I use a certain cream consistently enough it'll get to a point my body will reject it, it won't make much of a difference to work for eczema.
And obviously I can't argue it against the medical professional who obviously has like a sort of degree and Masters in their field, and I really don’t have any sort of merit to ponder about those questions.
Managing eczema can involve trying topical steroids of different types and strengths. Some people weren’t too sure which steroid ingredients they had tried in their creams or whether they were strong. They thought that their doctors prescribed them increasingly strong steroids over time. Sometimes it was seen as necessary because their steroid cream seemed less effective over time and they wanted a stronger one to help their eczema. Anissa says the strength of her steroid creams have gone “up and up and up” over the years. It was unusual for people to go back to weaker steroid creams. An exception was Vicky whose current doctors are more reluctant about giving her the strong steroids she had as a child. Maham thinks topical steroid can be like “fire-fighting”, offering only temporary relief before the eczema returned.
Laura talks about the different steroid types and strengths in creams that she has had.
Laura talks about the different steroid types and strengths in creams that she has had.
Age at interview: 22
Sex: Female
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So I've had like hydrocortisone most of the time and it's been like one percent. And then at one point, they gave me a two percent one when it was really bad. And then now, and that’s Betamethasone, I think they called it, and that clears it up in three days. So I know now that that works and they’ve given me that now. But you know you can't use it too much cos otherwise it really damages your skin. So those are the main two I use yeh.
Some people have several steroid creams for various parts of the body. Shams dermatologist “customised” his creams for different areas of skin. Aisha had a steroid ointment for the eczema on her scalp but stopped using it because it was painful and gave her headaches. There was uncertainty about using steroid creams on/near the face or other delicate skin areas such as the vulva (the skin around the vagina). Some people had weaker steroids for the face, especially eyelids, while others had been told to never use steroids there. Sarah was refused a steroid cream by a pharmacist on the suspicion that she would use it on her face. Lizzie was careful not to accidentally touch her eyes or handle food until after she’d washed her hands when she’d put steroid creams on.
Sarah has had mixed advice about using steroid creams on her face.
Sarah has had mixed advice about using steroid creams on her face.
Age at interview: 23
Sex: Female
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I’ve used hydrocortisone and I’ve used it on my face and I’ve used it on my body. And I’ve been told by some doctors that like I can never use it on my face, like it’s completely inappropriate. Like, as I said, the chemist refused to sell it to me. Other doctors have said, “You can use it on your face. You can use it on your eyelids. You can use it for as long as you want.” Like it’s very mixed messages. And then, so you don’t know what you’re doing really. And that’s just like, [laugh] that’s quite frustrating. Because then you go to a new doctor and you’re like, “Oh, yes, I’ve been doing this and this has been working, blah, blah, blah.” And they’re like, “Oh, well, you can’t do that. Like that’s awful. You have to stop doing that immediately. But there’s no other options.” And you’re like, “Oh, okay, well, what, what am I meant to do?”
Worries about using steroid creams
People were aware of the risks of steroid creams, which include thinning of the skin (skin atrophy) and making eczema worse in the long run. Some people thought that overuse of steroids had made their skin more fragile and damaged their immune system. Aisha gets a lot of colds and thinks this is because steroids have “worn sort of my natural defence down”. Vicky says she was given strong steroids as a child before doctors were as aware of the risks.
Maham talks about her worries around steroid creams.
Maham talks about her worries around steroid creams.
Age at interview: 21
Sex: Female
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So one of them is vision, and even though I try to sort of not touch my eyes, touch my face, anything like that, I feel like my vision has gotten a little bit worse over the last year and I don’t know why that is. And I have been meaning to go to a doctor, a optician and see what’s happening with my vision. But, yeah, I think in my be that even if I try to avoid touching my eyes if it’s on your hands and if you apply it somewhere then you might rub your eyes accidentally or something. And then, people say it thins your skin, some people say it doesn’t, and there’s a little bit of, I don’t know what the consensus is on that but I, so the, the main worry is just that it’s a skin thinner.
But I don’t know if it actually does thin my skin.
Some people worried that doctors gave out stronger steroid creams than necessary. Anissa would like doctors to be clear that you should always use an emollient even if a steroid is needed. Some people we talked to tended to put steroid cream on first and then their emollient on top or not any emollient at all. Other people found that doctors wouldn’t prescribe them strong enough steroid creams to treat their eczema. This could be very frustrating. Aisha says that it was only when her dad argued with the GP that she was prescribed a suitable steroid cream.
Molly finds that doctors are sometimes reluctant to give her steroid creams.
Molly finds that doctors are sometimes reluctant to give her steroid creams.
Age at interview: 21
Sex: Female
Age at diagnosis: 4
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There was one cream that was amazing which they discontinued and I can’t remember what it was called. And then the steroids are just really hard to get hold of even if someone’s prescribed them to me before, they’re always like “Are you sure you need them again?” and it’s like well now you’ve given them to me and I’ve like adjusted my life and like routine with eczema to be with this cream I kind of do need it [laughs]. But they always do prescribe it eventually.
Dr McPherson talks about the importance of using steroids as instructed by informed medical professionals.
Dr McPherson talks about the importance of using steroids as instructed by informed medical professionals.
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Most of the patients that I see have been under using corticosteroids. And they often get almost inappropriate steroid phobia, and they get that from other health professionals – they sometimes get it from pharmacists, it can come at them from lots of different areas. And that comes from probably misinformation, a lot of the time. And, you know, not good knowledge on good use of how these products work and how they can be used safely. The NICE guidelines are very clear on this, they say the benefits of topical corticosteroids outweigh any risks. And that's, that's, you know, we know that, we have good studies to support that. We find that often people will be inappropriately cautious, and they'll have very active eczema. You know, because they're not using their corticosteroids effectively, or they're not being advised or supported in the effective use of corticosteroid use. If you use a very potent corticosteroid for a very long time on skin that's not inflamed, then you can run into side-effects. So I always think calling it ‘steroid phobia’ is a bit unfair, because it's, you know, it's not like you shouldn't be aware and mindful of possible side effects of treatments. But also you should be able to use them effectively. And if anything, we're using slightly more potent corticosteroids in a slightly different way, to make sure that we can reduce inflammation. Particularly early on in the, you know, in a child with eczema, because we think that's probably the most effective way to prevent them then getting, you know, more sustained and chronic eczema.
Some people worried they used too much steroid cream. The advice from doctors is to use it sparingly (after letting emollient soak in) and for short periods of time. It’s especially tempting to “slather” and “plaster” it on when you are in pain or feel self-conscious though. Aadam occasionally puts steroid cream on his face because he wants “to conceal it, even with the risk.” He sometimes uses more steroid cream and eye drops when he’s feeling stressed to try to prevent flare-ups. Others also said they sometimes used their steroid creams more often than their doctors advised, in the hope of their eczema healing quicker.
Sarah, Aisha and Georgia have researched ‘topical steroid withdrawal’: when your body has got too used to steroids (addicted) and you have ‘rebound flares’ when you stop taking it.
Georgia has researched online about topical steroid withdrawal. She’d like to explore other treatment routes with her dermatologist.
Georgia has researched online about topical steroid withdrawal. She’d like to explore other treatment routes with her dermatologist.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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One thing I’ve come across recently is topical steroid withdrawal and addiction. When I’ve been using, when it got quite severe and I was referred back to my dermatologist, I was put on courses of prednisolone and Trimovate and I’ve had Protopic and Betnovate. Which are all, Protopic isn’t a steroid but they’re quite, the Betnovate and the Trimovate I think are quite potent. And I wanted to stay away from that because, as I mentioned earlier, I like naturally occurring products, something that’s not gonna have serious side effects on my skin. Which, what I’ve been reading up on is skin thinning, it becomes red and it can deteriorate. And it wasn’t really something I’d wanted to, I didn’t wanna go down that route because my skin is already quite red anyway. And I think it, it’s a bit harsh. But after talking with my dermatologist, who wasn’t too happy for me to go down the route without steroids I think. Because it has such a, it does have a really high success rate. I won’t, I won’t deny that. They’ve been using them for 50 years or so and they are really successful with people that have severe eczema. But after reading up on topical steroid addiction and withdrawal, some of the symptoms, such as regularly infected skin, it’s constantly swollen, red. There’s like a scent of iron actually that I noticed on my skin, which is quite odd. And reading up on some of these people who do suffer with it and are going through the withdrawal of it. It’s, it’s quite severe what they go through. Even though s-, steroids are such an easy route to go down. They, you just put it on for about three weeks or so and use it intermittently, and your eczema is gone. But these people are trying to sort of push the toxins and steroids out of their body, and have been for about two or three years. And they’re still going through symptoms of s-, swollen skin, it’s red, it’s cracked, it’s infected all the time. And I don’t think mine is as severe as theirs, possibly because mine is more stress related and my allergies aren’t as bad as theirs. But it is still a route I would like to explore. And I think I would really appreciate it if it was an option that doctors and dermatologists were more prepared to explore. Rather than accepting that the only route is sort of scientific research instead of going down the herbal route. And sort of just allowing a bit more preference from the patient, not necessarily what they’ve found to be successful in the past.
Aisha doesn’t remember her doctors talking about side-effects or risks with topical steroids when she was younger.
Aisha doesn’t remember her doctors talking about side-effects or risks with topical steroids when she was younger.
Age at interview: 21
Sex: Female
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They never said anything about side effects, no. I mean it's always in the boxes when you get your medicine; it's always a little leaflet of it. But they never sort of said anything really, they’ve always just said use it sparingly and put it sort of half of a thumb, a finger pad onto, and be careful around the eyes and don’t eat it etc etc but, when it's come to actual sort of side effects of what long term usage of things like this can do to you, I don’t think we've ever had anyone sort of thing.
Cos I would remember. Cos if someone says, "Do you know if you use this too long you're going to die," you'd remember that alright. So, or you know, "You can become very seriously ill." I don’t think I've ever heard of anyone sort of saying. So, I don’t know if steroids are OK to use over a long time, I don’t think they are. But, I mean like when I was talking, when I was saying earlier about the forums somebody said, I sort of read about a lady who said that she'd used steroids for a really, really long time.
And she just sort of said that, yeh she used steroids for such a long time that it's definitely sort of had an adverse sort of reaction to her body like sort of her hair's thinned and her sort of nails are brittle and everything and she sort of has digestion problems and it's just, yeh it's one of those things like whoa, if we're just pumping people full of these things that’s kind of scary [laughs]. Like, maybe it won't happen straight away but what if like, in a couple of years when I suddenly get a reaction from that usage of these really strong creams and then like because I haven’t use them in such a long time people are like, "Well how could that have happened?"
Some people experienced side effects which included burning or stinging when they applied steroid creams. Ointments can help this problem as they are less likely to cause stinging. Georgia’s skin sometimes became more red, inflamed and warm after using steroid creams. Ele had to instantly wash off one steroid cream she tried and now avoids using it. Molly doesn’t like how steroid creams smell and feel (greasy) which can get on her hair.
People weighed up risks and benefits for steroid treatment. Gary wants his eczema treatment to “be as natural and as healthy as possible”, but accepts he may sometimes need steroid creams. Sarah’s approach during university exams was to “do what you’ve gotta do to get it maintained through that period of stress and then afterwards you can maybe try to be a bit more holistic about it”.
Help and advice from others about steroids for eczema
Like with emollients, people sometimes had help with applying steroid cream when they were younger, in pain or couldn’t easily see the body part affected. Some parents reminded the person to use the steroids when needed, others were more ‘hands off’ and tended to let the young person get on with using the emollients and steroid creams.
A few people knew that they could buy weak steroid creams from pharmacies and only visited their doctors if they needed something stronger or wanted one specific to them.
Aisha’s says her GP wouldn’t give her steroid creams strong enough for her eczema when it was severe. Although not recommended, she sometimes used her dad’s prescribed treatments.
Aisha’s says her GP wouldn’t give her steroid creams strong enough for her eczema when it was severe. Although not recommended, she sometimes used her dad’s prescribed treatments.
Age at interview: 21
Sex: Female
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I had loads of different creams and nothing was sorting this out, nothing was sorting it out at all. And then my dad who had eczema, but obviously not as bad as me, I think he just had sort of the random bit like in the elbow or behind the knee. He got prescribed a 50/50 mix of steroid and moisturiser from his own doctor, sort of like a potion itself – it's not really like on the market – it was just sort of there. And he suggested that I use a little bit and we were all obviously sort of very wary because, you know you don’t mix medications etc etc. But I used it and it cleared up like overnight, it was crazy how fast this worked and how sudden sort of, it was like almost a miracle, I just didn’t believe it. And, that was for the back of my neck and then I remember my dad was like, "Well if it works on the back of your neck maybe you could start using it around my face," and then I started using it around my face and it just sort of worked as well, and it was like, "Wow where has this sort of cure been all these years?" And, that was… yeh and then I just… it cleared up all the eczema itself but then I was obviously left with all the marks that the eczema had made, been there, because they'd been there for years and obviously I'd sort of scratched and rubbed and it had made itself sort of just scarred up my face really bad.
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