Topical steroid withdrawal and skincare
Ruth is passionate about raising awareness of allergies, anaphylaxis, eczema, topical steroid withdrawal and asthma, all life limiting conditions. She wants to help others feel less lonely, normalise people's views and perceptions and promote positive living, not suffering. She lobbies parliament, speaks regularly at events and shows and is a judge for the FreeFrom Food and Skin Care Awards. Her blog 'What Allergy' was voted in the Top 5 UK allergy blogs and Top 10 Health Blogs 2019 (Vuelio) for 6th year running. Nominated for Allergy Blog Award 2017.
If you haven’t heard of Topical Steroid Withdrawal (TSW) before, it’s a condition where the creams you are prescribed to treat eczema stop working. The skin becomes addicted and the steroids become less and less effective, requiring stronger and stronger steroids to control the eczema. They are only meant for short term use but there are no other simple treatments available on the NHS. The patient finds themselves instead being encouraged to use these topical steroids for years and then moving onto stronger and stronger doses. If these don’t work you can be prescribed Immunosuppressants such as Protopic (topical), Methotrexate and Ciclosporin (both oral) or Biologics like Dupixent (injected), but these also have complications and side effects, as I will discuss later.
Those of us now going through TSW have taken a stand, gone against the advice of our dermatologists and doctors and decided to cut out the toxic steroids. In February 2019 I went cold turkey, stopped using topical steroids and then in April 2019 I cut out Protopic, a topical immunosuppressant that I was using only on my face.
This was not an easy decision as the withdrawal from these topical creams can take anything from a few months to many years, it is not a linear or predictable healing process. The skin behaves worse than the original eczema when it craves steroids. People experience oozing, swelling, infections and this can affect the whole body. Itching, sore, burnt looking skin that crusts and flakes off on a regular cycle for YEARS! It’s the stuff of nightmares. I also experienced nearly a year of crippling insomnia, zingers (shooting nerve pain in the limbs) and fear and anxiety that this would never end. If you’re considering cutting out topical steroids, speak to your doctor and do as much research as you can. Look at the ITSAN website and explore the online community for an insight into different people’s journeys.
Doctors and the medical profession call us ‘steroid phobic’ and most refuse to recognise the condition; my own doctor was sceptical that it was a good idea due to the side effects but has supported me through this process. There are some doctors who accept that withdrawal is happening for many of us, but the actual process is so difficult, painful and long that many people choose to continue using the steroids.
My own journey began when I realised that I could not go a week without using my steroid creams and my skin was not well managed, even when I did use them. My dermatologist urged me to use them more and more frequently, but I’ve always had an innate fear of these topical treatments. We know they ‘thin the skin’ but no one told me I could become hooked with years of dangerous and painful withdrawal ahead of me if I decided to go cold turkey.
It felt wrong that my skin was behaving like this. I also realised that putting a small amount of the steroid cream on my hand for instance, would make the eczema heal all over my body. How was that possible? I was powerless to live a normal life without using them. I knew deep down there had to be a better way. A more natural way of treating eczema.
Topical steroid withdrawal is well documented. Protopic withdrawal is not talked about as much, but I realised I was also addicted to this and I wasn’t happy about the effect it had on my face; sitting in the sun would result in intense burning and there is a risk of skin cancer. After stopping Protopic my skin quickly worsened, so I started using Methotrexate in April as my dermatologist was keen for me to do so. I was finding the TSW process and symptoms hard. Initially Methotrexate helped, especially the skin on my face, but in September I got shingles so badly that I had to stop using it. My doctor did say I could start again once I’d healed but I just felt that this drug was compromising my immune system. The shingles lasted about five weeks and was one of the most painful and horrendous experiences I’ve ever gone through. I also decided to give up work in April and I think this had a massive and beneficial effect on my healing. I spent at least four months just resting, trying to find peace and calm and letting my skin do what it needed to do. I know this isn’t something everyone can do so I’m very grateful had this luxury.
I tried to keep up regular exercise, even if it was just a gentle stroll; sometimes the only thing I could bear as anything more made the skin break and split and sweat was then like acid on any broken skin.
To start with it was really hard to work out what was good for my skin. I was prescribed Epaderm emollient, which didn’t irritate my skin so I was able to leave my skin alone when it needed to dry out and moisturise the really tight, sore dry areas and get some relief. Over the months I began to experiment with tea tree oil directly on the bad patches and a layer of aloe vera to seal the skin. I often then bandage the area if that’s possible; it’s quite difficult to bandage up your face!
One of the side effects of TSW is a cycle of red raw kind of burnt feeling skin, then a crusting dry phase and then a flaking off final stage. I felt like I wanted to be helping my skin by using more natural skincare products, so I began to apply Lyonsleaf Zinc and Calendula cream which is the softest moussey textured salve. I started by applying it like a face mask when my skin was at the crusty phase and it really helped to soften and soothe that thick dry layer and I think it aided the flaking process to be less troublesome and painful. I really wish products like this were available on prescription because I’m sure they are beneficial to the skin’s healing process.
Lyonsleaf saw my face mask application on Instagram and very kindly gifted me a pot of their Calendula and Marshmallow Balm which is just dreamy. It’s more oily based than the Zinc and Calendula Cream which I already loved and is perfect for smoothing onto my skin when I get out of the bath. I’ve always had to be really careful what products I use on my sensitive skin but these are gentle and kind enough for even my eczema and TSW ravaged face. Both Lyonsleaf products are unfragranced which is always something I look for in natural skincare. They go a long way too, so each pot lasts longer than you expect.
I have just started to be able to tolerate showers, but for most of my year’s withdrawal a bath has been the only option, the most comfortable place to be as my skin seemed to calm down in a bath. I add Epsom salts, bicarbonate of soda and a drop or two of tea tree oil and soak off those flakes. As my skin heals, I’m finding that I need less and less moisturiser and am able to reduce the amount of the paraffin-based emollient and use some of the more natural balms and creams I’d begun to experiment with. Clothing has been important too, natural cotton or bamboo clothing against my skin after moisturising helps lock in the beneficial moisture, feels lovely against my skin and protects the bedding from most of the oily skin care products soaking in!
I managed to keep active throughout most of the process and found running regularly really helped my healing journey. The sweating process, whilst sometimes excruciating, seems to help purge out whatever impurities need to leave the body. It gets all the organs working, especially that largest organ, the skin barrier! Eczema and any atopic dermatitis conditions are a sign that the skin is trying to remove impurities in any way it can when other organs are not doing what they should. The adventure is working out what triggers your eczema, whether it’s stress, anxiety, certain foods, pollen and external allergens, skin care products or clothing. It’s a journey - learning what helps and what hinders, and making loads and loads of tiny changes, improvements and adjustments to strengthen and nourish the skin health and microbiome.
Keeping the skin moisturised throughout, as well as hydrating with plenty of fruit and vegetables in the diet, drinking enough water and cleaning and cleansing as gently as I could was one of things that I think helped me to heal. I tried to cut out processed foods, refined sugar as much as possible and cut down on my alcohol consumption.
I am now a year and three months topical steroid free (at the time of writing) and it has been a difficult journey, however I would never hesitate to make that decision again. It is the best thing I ever did for my skin. I am now almost free from eczema on my body and legs with manageable eczema on my arms. The worst affected areas for me have been my face, inside me ears and hands and these continue to go through healing, but they are slowly improving.
I believe we need to change the way we treat atopic dermatitis and eczema conditions. Instead of the first line of attack being steroids people need to look to their lifestyle first and the medical profession needs radical change to be able to guide them to finding the right path. Topical steroids should only ever be used for short term relief and never long term.
I wish I’d found products like these beautiful Lyonsleaf balms and salves when I was a child and first exhibiting signs of eczema. My hope now is that children and adults will begin to have better advice, especially now we know what can happen when the skin become addicted to topical steroids. There are many natural skincare products and brands in the UK but they’re not readily found in high street pharmacies or skin care aisles. Start to research, experiment and find out what works for you – always patch test because anyone can be sensitive to natural oils.
Finally, loving your skin and treating it with self-care, gently and lovingly sounds cliched, but it’s so true. I used to scrub my skin and rub on emollients. I used to scratch in a trancelike state and do so much damage. Your skin deserves better than that. It deserves to be cared for. Mine is thanking me for the beautiful soothing Lyonsleaf balms and salves. I’ve had to do a lot of soul searching to learn to love my skin, but I truly believe I will heal, I will find skin freedom and live a good life despite my atopic skin.
It's been a long, arduous experience, one that I have found life changing. I am a totally different person now, both physically and mentally and am so grateful to the help and kindness of the Lyonsleaf team for reaching out and helping me. I know that I may never be free of eczema completely but am confident that I can manage this condition with natural skincare and lifestyle changes.Thanks Ruth for sharing you story with us. You can read more at her award-winning blog What Allergy
You can also find out more information about Topical Steroid Withdrawal Syndrome at ITSAN.org