Topical Steroid Withdrawal | Laurie's Story




Laurie is a 26 year old events planner from Birmingham, UK currently going through topical steroid withdrawel (TSW) and showing rapid recovery/healing. Initially prescribed topical steroids (TS) for her eczema, her skin became addicted to the creams during her six year usage. Along with experiencing symptoms listed above, small scars are visible all over her body from itching so deeply that her skin would break and bleed. In January 2019, Laurie decided to stop using the creams and is subsequently going through the withdrawal process. Laurie so graciously agreed to share her story which she wrote a few months ago right here on skindeelply.

Follow Laurie's Instagram story and see recent posts/progress pictures at @laurieskinstory






Topical Steroid Withdrawal overview

Topical Steroid Withdrawal (TSW) is a condition where the skin becomes addicted to topical steroids (Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS)). TS are initially prescribed for skin conditions such as eczema. TSW can occur when discontinuing topical or oral corticosteroids. Before the withdrawal, the skin looks almost normal, sometime after beginning the withdrawal process (usually days to months), symptoms begin to show. These symptoms can include burning skin, enlarged lymph nodes, hair loss, weight loss, insomnia, itching, loss of temperature regulation, mental health problems (anxiety/depression), nerve pain, oozing, red sleeves and skin shedding.



Management of the condition


Management techniques, which can help alleviate symptoms temporary or potentially quicken the healing process, include (but are not limited to): a healthy and active lifestyle, No Moisture Treatment, cryotherapy, UV/red light, antihistamines/pain medication and support from friends and family.


Laurie's Story


I’m a 26 year old events planner (for medical charities) from Birmingham, UK, and have had eczema since I was little. It’s always been manageable (flare ups mostly in winter) until November 2018. It started in the creases of my arms and legs as a child and gradually started to spread over my body for which I used stronger and stronger steroids and now it’s affecting 70% of my body. For the past 10 years I’ve moisturised daily, all-over. I saw a dermatologist at the end of November who prescribed me Elocon for my trunk and limbs (I’ve used this on and off since Sep 2015) and Eumovate for my face, this was the first time I used steroids on my face (previously used the immunosuppressant ‘Elidel’ daily for six years on my face).


Research/recent lifestyle changes


I’ve done months of research on TSW and made the decision to come off all TS and to try and heal ‘naturally’. I’m now in the early stages, I came off all steroids on 20 Jan this year. I have been primarily vegetarian and avoided nightshades since June 2018 (tomato, white potato, aubergine etc.), and was on a plant-based diet/vegan for 4.5 months to Mid-June, now I only avoid raw tomatoes as I know these are an allergy for me.

I have previously had oat baths every two days (they helped me more than Dead Sea salt baths) and no longer use any moisturiser on my body (after 10 years of moisturising full body), the aim is that my body will create its own moisture eventually.

I’ve also got acrylic nails which really helps not to break the skin. I’ve also come off birth control (after 10 years) to see if there is a link to my hormones. I hardly wear makeup at all now, I used to wear it max. once a week. I’m currently doing light therapy at my local hospital three times per week and on the waitlist see my dermatologist again.




In the images above there is a selection of images of what I used to look like compared to more recent images of my body and skin. The ones that look like an allergic reaction was at the beginning of the year when I had a break from steroids on my face for a week, then I put on TS and it went down within a day. I’ve found a support network on Instagram who said they thought it was Topical Steroid Addiction (TSA). The rest show what I have experienced and what look like now, off steroids completely. I initially experienced flakey skin with some oozing, feeling cold all the time but also sweating, often forgetting things, all common TSW symptoms.



Here are some other symptoms I have experienced:

Physical:

  • Interrupted sleep (this is the biggest thing for me) through scratching through the night

  • Painful

  • Bleeding from scratching/scabs

  • Skin flakes

  • Stiffness

  • Cold all the time (my temperature has regulated itself more recently)


Mental:

  • My skin is on my mind constantly: how it feels, wanting to look in the mirror all the time to see how it looks, dreaming about it.

  • Wanting to be the person I was before my skin condition consumed me.

  • Not socialising/cancelling commitments (I try as much as I can to see my friends only so that when I see them again they can tell me if they think my skin has improved).

  • Have to mentally prepare myself to bath/shower as the water stings my open ‘wounds’.


Please can you tell me a bit about yourself and your background (family life etc)?


I live on my own near Birmingham Airport, I'm super close with my dad and my grandad who are my biggest supporters and rocks, along with my best friend Stacey. I travel a lot for work, I've been with my partner for six years: he's lived in London for the past two years and we alternate weekends to travel up/down to see each other, I enjoy seeing friends and eating out (and eating in general!).



At what age did your eczema start and where on your body was it located?


I've had eczema for as long as I can remember, the furthest back I can remember I was probably 8 and just had it very mild in the creases of my arms and legs.



How did you treat the flare-ups before when they weren’t as severe?


When I was younger, I used E45 and hemp cream to successfully treat it. The eczema went away quickly in the sun/on holiday, the sea salt really helped too. My skin has always been best in the summer months.



Why did your eczema change so drastically in November 2018?


In December 2016, I was given a skin-plan:

Eumovate on my face, neck and creases of arms and legs 2x per day down to Elidel 1x per day (and use Elidel on eyelids) down to Elidel 2x per week for maintenance

Metosyn to trunk and limbs 2x per day reducing slowly to Elocon once per day and then reducing with improvement

I would also use Betacap on my scalp as this was really flakey.

I would use this plan each time I flared, which became more regular. Then in November 2018, after months of research, I decided to come off steroids completely. This was the first time round (I’m on round two) and was my darkest moments as I suffered most.

Eventually, after a month I couldn’t stand it anymore, so I went to see a dermatologist privately who gave me a similar skin plan again along with Atarax, an antihistamine which would stop me scratching and help me sleep. This was the first time I used steroids on my face.

I went back to the doctors about 3 or 4 times over the next six weeks (to mid-Jan) as I was concerned about using steroids for longer than two weeks and was given different plans each time. It was at this point I decided to take matters into my own hands and I stopped applying the steroids completely on 20 Jan.



What was the strongest steroid cream you used and how often did you have to apply it?


Metosyn and Elocon as above (both are ‘potent’ Topical Corticosteroids (UK Classification))



Did you feel that the stronger creams helped you at all?


Yes, short term. I found that with each steroid cream I used, it would work wonders in the beginning, then I would use it again with every flare and then the creams became less effective over time.



What side effects did you notice from the steroids?


Mild burning sensation on application and red skin.



When did you start to research TSW and learn more about the impact of steroid creams?


In summer 2018. At this point, I’d had eczema consistently (mild-severe) on some part of my body for about two years, it had never fully gone away. I thought it was unusual that my eczema hadn’t cleared up in the lovely summer that we had so I began researching then came across TSW and the Instagram community. One of my first insta posts was about a ‘miracle cream’ I used on my face called ‘Elidel’ (this is an immunosuppressant) and I thought it was amazing because it wasn’t a steroid cream and I wanted to share it with everyone but I was quickly warned about using this too, so have since stopped (and that is why my face looks how it is).



How do you try to heal now?


Naturally! I’ve stripped everything back to basics: I am on a plant-based diet/vegan since 1 Jan 2019 (I avoid raw tomatoes) [to mid-May], I have oat baths every two days and no longer slather my full body in moisturiser. I’ve also come off birth control (after 10 years) to see if there is a link to my hormones. I am taking daily vitamins (D3, zinc, selenium and acidophilus) and drinking lots of juice. I actively avoid taking any paracetamol etc. which seems drastic but I’d rather find the underlying cause (dehydration for example) and treat it myself (by drinking more water!) rather than masking the symptoms. I hope to eventually reintroduce some foods and alcohol (I’m alcohol free since NYE).



How do the oat baths help you? Are they uncomfortable?


The water stings when I first get in the bath, but eventually my skin loosens in the water and the oats give my skin a silky feel and soothes my skin.



How long do you stay in the oat bath for?


20 mins.



Why do you no longer use moisturiser?


The aim is that my body will create its own moisture eventually (you may also want to look at Moisturiser Withdrawal (MW) which a lot of people said have helped their skin heal faster, I personally haven’t tried it fully, a good link is http://tokuko.chu.jp/tokukonoheya/2017/11/25/how-to-get-over-topical-steroid-withdrawal-asap/)



Have you noticed any effects of your change in routine?


I have been off TS for 46 days (as at 7 March 2019) and my skin has definitely improved, although I can’t pinpoint exactly what has helped, the full withdrawal period can take years for some, I’m not sure you completely stop getting eczema at the end but it is mild in comparison to what we have endured so far, the hope is that it is manageable eventually.



Do you think being plant-based is helping your healing?


The only definite way it has helped me is mentally. I feel in a much mentally stronger place since I have been on a plant-based diet, my mind set is that I am putting good things into my body so surely I can heal myself from the inside out, by looking after my gut? NB: my diet was not great before, I loved chocolate and snacks!



How do you feel about no longer wearing makeup?


I never used to wear it a lot anyway (only for weekends or social events) but I’m disappointed I don’t have the choice anymore. When I heal, I will definitely wear it less because I will appreciate the good skin I will have.



What birth control did you used to have?


Cilest



Did you make all of these changes at once?


Pretty much, within a few weeks of each other, drastic I know!



What has been the hardest part of TSW for you?


Sleeping, definitely. My sleep is disrupted every night without doubt, I probably wake up and have an itching fit for about 30 mins 5 times a night then eventually calm myself down and try and go back to sleep. I have never been a ‘sweater’ but I am sweating like mad through the night, a side-effect of TSW.

On a non-personal level, it’s also been really hard to see other people suffering a lot worse than me (people have to move back in with their parents to look after them and dress them as it can become so painful).



Can you tell me a little about you feeling cold all the time?


When I first came off my steroids, I couldn’t get warm. I’d sit at work with a cup of tea, my coat on all day and a heater by me and I’d still be cold and shivering. My skin was so broken it wasn’t retaining heat. I’d also feel weak and my legs would shake.



How does your eczema make you feel in public?


People double take but that’s only natural and some ask me what happened to my face and skin. I was a lot more self-conscious at the beginning than I am now, partly because my face is better and partly because I’m used to it. However there was one incident where I was travelling home on a train from London in the window seat and it was my stop to get off. I brushed down my clothes (as skin flakes fall off naturally) before I stood and shifted past the lady in the aisle seat, I reached above her to grab my bags from the top luggage rack and some skin flakes fell on her, she brushed them off politely but I was mortified and rushed off the train as quick as I could, I’d felt so confident that day and that just brought me right back down.



Have you received any comments?


No bad or nasty comments luckily, no. I know others have though which is really sad. I always feel nervous by young children as they are likely to make comments.



What message would you like to convey?


I’d like to raise awareness of TSW and urge anyone who thinks they might be experiencing it to look into it (or contact me, I’m very happy to support people going through the same/similar thing!). There’s a huge support network for everyone going through it and I wouldn’t be able to do it without them. I talk to people every day and we share our journeys. It’s been great to hear ‘I used to look like you!’ because it means there is hope and I can one day have skin like them. My biggest thing I’ve learned is that time is the biggest healer. My strength is other people’s TSW success, it’s what keeps me going.



Any additional information


I now have small scars all over my body from where I’ve scratched and then the cut has been so deep/scratched so many times in the same spot that I've scarred my skin.



Huge thank you to Laurie and her bravery for sharing her story and pictures and for getting real about life with TSW. I highly recommend following her on her instagram page @laurieskinstory which she updates with her progress regularly. If anybody else is suffering from TSW or any range of chronic or skin conditions do not hesitate to get in touch with skindeeply by emailing contactskindeeply@gmail.com the more we share the less alone we all are in this.

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