Jing Rui is the founder of Skin Solace, a skin clinic in the UK that treats patients suffering from Topical Steroid Withdrawal. She is well known within the TSW community and her website Decoding Topical Steroid Withdrawal was one of the first online resources to document the phases and management of symptoms during topical steroid withdrawal.
1. When did you start using topical steroids and why? When did you last use topical steroids?
I first started using Topical Steroids when I was a baby. My parents had moved to Scotland for my dad’s Masters degree and my baby skin was adjusting to the cold climate. I had developed a rash and so was prescribed Topical Steroids and lots of moisturisers. That was the beginning of my journey with Topical Steroids.
Everyday, twice a day for all of my childhood, my father would religiously apply it onto my skin When I was 13, I decided to take my skin condition into my own hands and tried stopping its use. However I faced a big flare, which unbeknownst to me then, was TSW. I struggled with bad skin that year and used a combination of healing methods such as Traditional Chinese Medication and Phototherapy. I was still using some Topical Steroids but not as much as before.
My skin miraculously cleared up between the ages of 14-16 and I stopped using steroids for the most part. I attribute my good skin to being mostly happy and stress-free in secondary school. But when I sat for my O levels at 16, the rash and open lesions started creeping back. When I went to college at 17, I had a major flare up from stress. It spiralled out of control and I was hospitalised several times.
I had an inkling then that the Topical Steroids were the cause but there was not much information about TSW back then. When I was 18, I was pressured by my family and doctors to go back to applying Topical Steroids and was also put on a course of Oral Steroids and Antibiotics. After 2 weeks in hospital, I had an ominous feeling that I would flare very badly once the steroids left my system. Once I was discharged, I stopped all steroids and began my TSW journey.
It has been 11 years since I’ve applied Topical Steroids on my skin, and I am glad I made that decision then.
2. During your healing journey, what are the 5 most effective solutions that have helped you manage? (Whether physically, mentally, spiritually)
After 11 years of TSW, I have tried so many things! I believe 50% of healing is mental/emotional – your mental/emotional state is what carries you through to the end. The top 5 are definitely therapy and spirituality (all sorts, sound baths, meditation etc), Calamine Lotion for oozy bits, Moisturiser Withdrawal and of course Ultra-Pulse Contact Cold Atmospheric Plasma (CAP) treatment, and CJAY Serum. I have found that keeping a simple routine and consistency is key. Less is more with TSW.
3. As the founder of Skin Solace, are you seeing any trends in treatment that crossover between topical steroid withdrawal and eczema?
The flare triggers for TSW and eczema are extremely similar – the main factors being 1) stress 2) irritants and allergens 3) period/hormonal changes 4) alcohol 5) lack of rest/sleep. Therefore the steps for the prevention of flares are similar – to manage your stress and lifestyle and to ensure that your environment is not loaded with chemicals or allergens.
Some treatments that seem to work well for both TSW and eczema are red light therapy (in right amounts), traditional Chinese medicine and acupuncture and cryotherapy.
However there are treatments that work for eczema that may not work well for TSW. One of it is the usage of moisturiser for eczema skin. Moisturiser impacts TSW skin differently and seems to have a negative impact when used long term and excessively, particularly on severe TSW conditions. Another would be UV/phototherapy – while safe on eczema skin, this can be hazardous on TSW skin and cause burning or further damage to TSW skin. UV therapy is more suited for the later stages of TSW when the skin is a lot stronger.
4. The data coming in to TSW Assist is highlighting naturopathy as beneficial for topical steroid withdrawal. In your experience, did you try natural ways of healing? Did it work for you? (Feel free to skip this if not applicable)
Yes I did try natural ways of healing, such as natural balms, supplements and probiotics, and various diets. I have seen naturopaths, traditional chinese practitioners, and homoeopaths. It benefitted my healing for awhile but found their effects to plateau after some time. However this is bearing in mind that my TSW is a lot more severe than most and my TSW probably just took over .
My skin did not respond well to natural balms and oils – while they soothed the dryness and itch, my skin was more red and inflamed when I applied them on and I sadly had to stop them. I was gutted because I had bought loads in bulk and had to give them away!
5. Gluten, sugar, dairy, alcohol and processed foods are some of the most common recognised triggers for flare ups in both eczema and TSW. Are you seeing other foods or trends on the subject of nutrition for topical steroid withdrawal? Did cutting out some of these work for you?
People with TSW develop food intolerances or sensitivities during TSW and cutting them out while their skin is healing can be beneficial to prevent itch and discomfort. However this is not to be mistaken to be the cause of their TSW. Allergies are also different from intolerances or sensitivities.
I have noticed that intolerances and sensitivities gradually disappear as TSW skin recovers and the foods can be enjoyed again. For myself, reducing spicy food and not taking alcohol helped me greatly. At the peak of my TSW I had to avoid certain fruits because, weirdly, they caused me to itch around my mouth! I can enjoy them comfortably now.
I have also noticed that many with TSW develop food phobia. This could either be due to their food sensitivities/intolerances or due to advice from online sites that a strict diet is necessary for healing. I must emphasise that the stress and worry of avoiding foods can have a more negative impact on healing. In addition, cutting out too many foods deprives your body of the healing resources it needs!
6. Has TSW changed your outlook on life?
The biggest lesson I’ve learnt is to love and accept myself and take life easy. I have always been a perfectionist, hard on myself and a people pleaser. I could never relax! TSW has taught me that I need not live my life this way.
I have learnt to be kinder to myself, not to set unrealistic expectations, and to RELAX! I am worthy of love and I do not need to be a certain way to be loved.
In some ways, TSW brought me back to my core – it made me reflect upon who I truly am. Through all the suffering, I have stripped back all the layers and found myself. It’s not an experience everyone is privileged enough to have and I am grateful for it♥️
7. In hindsight, would you change anything about your experience?
I would change everything and yet nothing. Knowing what I know now, I would not have slathered on so much moisturiser on my skin. I suffered from hardened skin for a long time because of it. However, that journey brought me to where I am today – without having experienced it for myself, I would not be in a position to be running a TSW clinic and offering guidance and having compassion for other sufferers. I am, weirdly, grateful for my TSW.
8. What advice would you give someone who has just discovered they have TSW?
My advice would be to learn as much as you can but listen to your body. There is a lot of information out there about TSW now and this can be overwhelming and confusing. If you’d like to try different methods of healing, I advise trying them one at a time and giving it sufficient time for it to make a difference. Always keep an objective lens on your healing, taking pictures will help with this. And of course, have patience with your skin.
As for dealing with the emotional stress of it all, remember that while you did not choose for this to happen to you, you are responsible for your own healing. Work on the pain, anger, frustration and practice kindness and forgiveness.
9. Are there any resources you would recommend?
I would recommend finding a local TSW community in your area and joining the online community on Instagram and Facebook. The TSW community changed my life – having that support makes a world of a difference. I followed blogs of TSW sufferers in my early days of TSW and they helped me feel a lot less alone.
A couple of documentaries on TSW have come out recently – Preventable by Briana Banos and Skin on Fire on Youtube. I recommend watching them for some insight into the life of a person going through TSW.
For healing, I would recommend cryotherapy for reducing inflammation and a boost in your natural healing. I would also advise looking into resources for mental and emotional healing such as going for counselling/therapy, using meditation apps, Jacobson’s progressive muscle relaxation, tapping & EFT.
Websites:
Itsan website
Scratch That UK
Dr Sato/NMT Facebook group/Tokuko’s blog
Dr Fukaya’s blog
My website – Decoding Topical Steroid Withdrawal
Jennifer Fugo’s website and Instagram
11. What is next for you, Jing?
To be honest, I do not know! I am taking a step at a time. I’m adjusting to my life in the UK (winter has been hard), and focusing on getting the clinic stable and where I want it to be. Right now, I am just grateful to have this opportunity. When things get tough, I remind myself that this is worth all the hard work and sacrifice ♥️
