This is Topical Steroid Withdrawal!
I’ve been wanting to write about my topical steroid withdrawal journey for some time because it’s fascinating and it is improving… slowly. One step forwards, two steps back, that kind of improving. So sometimes it’s infuriating but it’s something I have to go through. I am now about 11-12 weeks into TSW and let’s just say it’s been interesting. The body is an incredible instrument and I am amazed at the pain it can generate, but also the capacity for healing, if we let it!
I’ve held off writing because I’ve been angry. I’ve been so furious that this is happening. This on top of everything else…
I mean seriously?
WHY ME?
And I don’t want my lovely blog to be all ranty and negative. Because ultimately I’m a very positive person, so it’s hard to say bad stuff. I bottle it up because it often doesn’t help to moan about stuff.
But it’s so important that I talk about this because I have written many blogs about the correct use of steroids and my own personal miracle journey with Protopic. I now feel complicit in some way with the pharmaceutical companies and doctors who still believe that steroids are a safe first line treatment for eczema.
I trusted them and have used varying strengths of steroids and most recently Protopic, an immune suppressant, for years.
They worked. Really well. Protopic gave me over five years or normal skin on my face which at the time was a miracle and amazing to experience. What I now know is that the red skin on my face that I needed Protopic for was actually topical steroid addiction or red skin sydrome. People told me they thought I should investigate this but the pictures and stories I discovered filled me with complete and utter dread and horror. I couldn’t cope with this. The pain, the misery, the infections, the swollen, red, sore skin that went through withdrawal for months, years and in some cases 3-4 years.
What kind of sick joke is this? Through no fault of my own I am a drug addict and the pain of going cold turkey is phenomenal. It is worse that the pain I experienced with shingles and it is deep, relentless and merciless. And it can go on for months or even years…
My skin will ooze, split, flake and hurt. It is nothing like any eczema I ever had. It never bleeds any more, just oozes and weeps.
The skin above looks awful and it was. But with epsom salt baths with tea tree oil each day and gentle massage and exfoliation I am able to create an illusion of calm and get through each, with copious layers of Epaderm.
As I write this I am thankfully in a period of calm and healing between the flares. That’s not to say there is no pain, just less pain. Pain that causes a horrific uprising of heat, red skin, swollen face and stabbing pains, electrical currents and a kind of pulsing, wave like sensation that ripples across my neck, face, hands and forearms.
I can get through this though. And I will. I really believe that we can all find relief from eczema and red skin syndrome. Not perhaps a complete cure or eradication. I think we will all have a tendency to flare and have skin that reacts to surroundings, but this… this topical steroid addiction and now withdrawal is the stuff of nightmares.
Please watch this video if you’re interested…
Preventable – Protecting our largest organ
I wept watching this. It made me angry all over again at how the medical and pharmaceutical industry have created this monster and now refuse to acknowledge or respond in any useful way.
But most of all it gave me hope. Hearing from such beautiful, courageous people who have been through this is truly humbling.
I am thankful that my skin is not as bad as many. I never used the steroids correctly, always sparingly. When my doctor was telling me things like, ‘Use as much Protopic as you want, use it every day, I’m happy for you to continue using it…’ and ‘Elocon won’t thin your skin, use the full course, continue to use once it’s healed…’
I never really felt it was right. So I never used enough. I was always trying to taper my doses and reduce the amount I needed to use and only ever used as a last resort when skin was really flaring. I hope this will mean that my TSW journey will be shorter than some.
So far certainly I can cope. Yeah it’s painful but the pain doesn’t make me want to use steroids again.
The pain makes me realise how dangerous this drug is and how much I need to fight this and tell others of the dangers.
A lovely Insta friend Holly Broome or @TSW_Hollybee as I know her on the Gram, has started an online campaign to raise awareness. Using the hashtag #thisisnoteczema we all hope to raise awareness. And by sharing our before and after photos we can show just what the journey involves.
#thisistsw
#thisistopicalsteroidwithdrawal
#preventable
So as the anger passes (I’m getting really good at channelling my anger) the passion takes over. We can prevent this by taking a more holistic approach. We should look first at what might be causing eczema, not reach straight for steroids.
I’ll share more on what my symptoms are like and how TSW feels for me. If you want to get help and advice, your doctor may be sympathetic, although most do not accept this condition at the moment. Mine is dismissive but I am doing this for me regardless.
There is a Facebook Group and an organisation called ITSAN who are trying to help, support and raise awareness.
Are you going through TSA or TSW? Do you think you have Red Skin Sydrome? Are you worried about using steroids for eczema?
Wow this is amazing to read/hear! I’ve used steriod cream for around 6years, from the weakest to the strongest. I never knew this could happen. The eczema was there and needed treatment, hence steroids. What now? A more natural approach? I shall take a look at ITSAN. Thank you for this, and happy, quick healing.
Thanks Gillian. I don’t know it it’s something that happens for everyone who uses Steroids, but in a study done in Japan I think, watch the video above, steroids damaged the healthy skin of those who tried it as part of research. The idea being if they would prescribe to people with damaged skin, what was the effect on their healthy skin? It wasn’t good! I think a more holistic approach is needed to reduce inflammation, avoid triggers, for me lots of foods and external allergens irritate my skin. Also a whole new approach to anxiety, pain and how to manage itching, skin care, self care and skin health, It’s fascinating and the more I research the more I learn about what i was doing wrong. Thanks for your comment and good luck.
Thanks for this post. I have children with eczema. One used steroids and his face looked as if he had been burned. So we stopped it. Now I won’t allow my other 2 children to use it. I’m interested in the Epsom salt idea. Never heard of it before. We may try that. Thank you so much for sharing.
Hi Linda, my pleasure and thanks for the comment. you could also look at oat baths. They are so good for eczema skin. I find Epsom salt baths to be a complete life saver.
I’ve had eczema really bad 4 years ago. I’ve had it almost my whole life but then was the worst. I’m 30 now and I still have it but it’s completely manageable.
For a while I believed the TSW stories. I think they are wrong, not lies but looked at from a wrong perspective. TSW is what eczema looks like it your body hasn’t been allowed to tackle it for many years, instead the steroids did the work. It’s not really addiction, it’s a broken and untrained immune system
I’ve come off Elocon for some years. I now only use ‘triamcinolone acetonide’ (a quite weak corticosteroid) to maintain, as I see my eczema get weaker every year.
The way you, and I believe everyone, should go forward is by tackling your inside. Eczema is an output for a wrong input…our insides, our but microphones are unstable. And pollen and pollution are not helping.
First have an extensive blood examination done and see what substances your body can’t handle right now (for me it was wheatflour and beetroot sugar). Knowing this, adapt your diet and avoid all processed foods like the plague. Way as anti-inflammatory as possible.
Install an air filter in you room, clean often, etc. To feel more comfortable at home. But do not avoid allergens outside, as your body’s immune system needs to strengthen.
When and if you need it, use lower-strength corticosteroids, but avoid if you can.
I believe this is how I will heal. I also believe that people who are going through TSW, are stimulating their immune systems also, but in a devastating way by going full exposure without any line of defence.
Remember that your gut is everything, eczema is a symptom that the inside is damaged. You may go through all the pain you want, that is entirely up to you. But remember, if you don’t fix your body from the inside, it will be to no (long-term) avail.
Take care,
Maarten
Hi Maarten, I completely agree. I’m looking at how I manage anxiety, itch habits, pain and inflammation. Also looking at my diet and lifestyle. It’s so many little things that help everyone manage eczema. I don’t know what the answer is but I’ll keep you posted. I’m doing it with Methotrexate at the same time to help. Could a whole nother problem coming there but we’ll see. Thanks so much for the comment and all the best with your own eczema journey.
Hi. I’ve suffered with eczema whole like. Now 33yrs old. 3 hospital admissions Feb, March & April 2020 as the ‘flare up’ was worst ever experienced. I believe it’s not eczema but in fact steroid addiction withdrawal. Docs won’t believe me. I’ve had patch test at Derm when I was 30. 6 allergies which I now avoid. (MI, Formaldehyde, Benzalkonium Chloride to name a few)
My hospital admissions were due to severely swollen legs, arms, red skin also on chest, stomach, face. Severe oozing. Not dry at all (which eczema is) first admission they thought nearly sepsis as heart rate was 120 constant & temp of over 38 as I had vigorous shaking for over a week too. Had IV antibiotics (flucloxacillin) and fluids each time I was in hospital. Refused steroid creams but in April they prescribed elocon as due to #Covid19 and being immunocompromised on Cyclosporin (since Sept 2019) they didn’t want me in hospital. Used elocon. Then went to eumovate. Today I am choosing to not use them. I know this will get me worse. Hydramol has been used for mths too.
I want the docs to realise this isn’t eczema. I know what my flare ups would look like. I’ve been refused a food allergy referral as they don’t believe it’s suited. I’ve paid for my own kid to send off, as I feel there are some allergies to food etc.
Dreading the fact I now have to start TSW. Last time I used a steroid cream was Jan 2020. So Feb and March was none. Then April I used the elocon.
#ThisIsNotEczema needs more focus. I pray we all can get through this and answers. Struggled mentally during the past 3mths because I was so ill with my skin.
Wish me luck guys.
Hi Mel, I am so sorry you are going through this. It does sound like you do have topical steroid addiction. Check out the ITSAN website and read all you can. They offer support and lots of information. There are also a number of Facebook groups which I know many find very useful. I don’t use them as I’m a bit of a social media phobe! Also Instagram is such a supportive place. If you use Instagram I would suggest creating an account even if you don’t share your journey. You’ll find so much support and people sharing their journeys. I’m now 1 year and 3 months into my TSW journey. I’m not going to say it’s easy, because it’s not and I’m stills struggling but I now have good days. My face, arms and hands are now the worst areas. Please, please take care, it must be scary at the moment with the virus as an added worry. Do you have a family and/or friends to support you through this?
Hi Ruth
I’m 14 weeks in & coming out the other side now. The first months were simply excruciating & I’ve had a setback few days recently but seem to be now managing relatively well, compared to recent months. I went cold turkey; succumbed to 25mg Prednisone about 4 weeks ago & now on 7mg & tapering. It was just too hard. My new doc did a skin biopsy- nerve damage no eczema.
Taking Lyrica 75mg twice daily to manage the itch ( tapering in another month) & it’s been great.
Weekly psychologist appts & daily meditation a must!
Baths are with purple Condy’s crystals & I have use heaps of coconut oil- wrap my upper legs & arms most nights.
I hope this is helpful to others.
It’s so reassuring to read others’ msgs xx