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When the worsened atopy turned out to be a topical steroid addiction - Personal experiences with TSA and TSW

Posted by Hanna-Kaisa Kalliomäki on
Kun pahentunut atopia paljastuikin lääkerasva-addiktioksi- Omakohtaisia kokemuksia TSW:stä

The story of when "worsened atopy" turned out to be a topical steroid addiction and the only way out of the cortisone cream cycle was to start the detoxification process. Personal experiences with TSW (Topical Steroid Withdrawal).

Hi, I'm Hanna-Kaisa, a 32-year-old entrepreneur, coach and soon-to-be mother. I have always been interested in the well-being of the skin and lived a healthy and active everyday life. My interest in the skin has naturally started from the fact that I have been "atopic" since I was a child and there have been enough different challenges and phases with the skin. Struggling with my own skin also led me to become a wellness and nutrition coach, when I left in 2010 to make a bigger nutritional change in hopes of symptom-free and good skin.



This rather personal story is not easy to share, but I'm doing it so others don't have to suffer and be ignorant like I was.

Today, TSW is a huge and big thing around the world, so I feel that you can't talk about this too much. Nevertheless, I have only come across a couple of Finnish (dermatologist) doctors who admit that this is true and that medicated fats cause addiction and withdrawal symptoms.

With this personal example, I hope to bring hope to all those who are frustrated with the struggle with their own skin and who have been given to understand that atopy/skin symptoms cannot be treated in any other way than with medicated creams.

For several years (approx. since 2005) I have struggled with various strange skin reactions. When at the end of 2019 my skin started to react again in ways that no longer resembled the so-called normal atopic eczema, so I really started to think, what the hell is rotting here. In December 2020, the pieces fell into place when I came across TSW on Instagram.

I realized, could it be that my atopy hasn't gotten worse, but every time I take a break from cortisone cream, some patch/symptom appears on the skin "calling for more medicine" and tells me that I'm addicted to cortisone??

 
Picture of a really itchy and bumpy back 12/2019. Feet in spring 2020, a really itchy pimple-like pimple. Sometimes the legs are full of these.

Background and Misdiagnoses

Next, a little background and the strange skin symptoms, which the doctors have either told me is "exacerbated atopy" or have thrown their hands up when they didn't know what else to do after prescribing antibiotic and cortisone prescriptions without success.

I have atopic eczema diagnosed when I was about 2 years old in connection with the outbreak of food allergies, and since then I have been fattened 2-3 times daily with basic fats. Various strengths of cortisone creams have been prescribed for rashes, and for the last 12 years Protopic for face and lips ("because it's better and doesn't thin the skin like cortisones"). About 12 years ago, I had a rash again. It stopped me from doing things because I didn't want anyone to see my rashy skin.

I always buried myself at home after work, I didn't see friends or exercise because of this. I started to do a major nutritional overhaul for the first time and in a few months I was symptom-free without medicated fats!! I was so happy!! But, 1.5 years later, my body was horribly flailing from head to toe without any clear stimulus or reason.





Skin at Christmas 2012. There are naturally almost no pictures of black from that bad time...


In that case, I thought that "this is some kind of cleansing of the body" and I suspected an allergy to the eyelash extensions, I tinkered with it for 2 months and then had to give up when the symptoms got worse and I went to a dermatologist. Well, the doctor yelled at me that "Oh, it's horrible! My skin looks terrible!! You're really inflamed!! Why didn't you come to the doctor earlier?!" And prescribed 4 different cortisone and cream socks for hands.

Depressed by that, at the age of 22, I took care of my skin again with medicines, of course, sticking to the nutritional things I had learned.

Between the years 2012-2020, all sorts of things have happened to my skin, which has started to amaze me, because I have been living really healthily. Sometimes for long periods of time (from months to years), the skin has been perfect (apart from a small red patch on the cheek and neck) and even less basic moisturizing has been enough.

Then the following symptoms appeared "overnight": the lips were leaking yellow tissue fluid (I have been diagnosed with all of these: ringworm, cold sores and aggravated atopy), the nipples have been leaking yellow fluid, the scalp has been full of yellow tissue fluid (the doctor has not been able to diagnose it) , in some summers pigment changes on the skin (ie spots that are not tanned), red spots on the cheek/neck area (where there was no atopy in the first place).

From time to time those red spots have expanded and itched more than ever before and medicated ointments have no longer worked on them. There have also been a few strange "bloats" and rashes on the legs and back, which no longer resemble the original diagnosis of atopy given as a child.

Pictures before I knew about TSW: a red, really itchy and hot spot on my cheek that sometimes expanded from a tiny spot the size of a fingertip to a big one. Picture of scaly skin, pigment change and mild spots on the face and neck area. Leakage of tissue fluid at the end of the nose.

    

Over the years, I've tried EVERYTHING you can think of as an "external or internal cause". I've been on paleo, cut out grains, cut out milk, cut out soy, cut out gluten, did elimination diets, invested in stress management, had phototherapy, gave up my dogs for months to test if any of these are the cause?!

I have suspected my ex's use of snuff, mold at the workplace, re-allergic to some foods, chemicals in laundry detergents and dishwashing detergents. To be honest, I've been incredibly stressed and lived as my own skin's undercover police at all times like this, when my skin has shown mysterious symptoms.


Things are starting to clear up. Did the cortisone creams cause this!?

When I came across TSW in December 2020, it felt like the bomb! I saw pictures of skin whose condition resembled my own skin in 2012, when I was 22 years old and the skin had deteriorated to a terrible condition after a 1.5-year drug-free period. It really caught my attention and I read hundreds of other people's experiences, I read facts, I read the writings of doctors who approve tsw, I watched youtube videos and I went through my own skin history. I doubted it could be true?

Could it be that the drugs that have been prescribed to me from time to time over the course of 29 years have caused me the current "condition" and all the strange skin symptoms for which no explanation could be found anymore?

I also thought that maybe I couldn't have become "addicted" to the cortisone and protopic creams that I had used, because I used them so little and infrequently in adulthood. I said that's just the way it is. And I don't want, at the expense of my own health, to extinguish these spots and rashes with medicated ointment every now and then. Even when the situation started to be that those fire extinguishers didn't even work properly anymore.

After looking into the matter, I realized that medicated fats affect e.g. they weaken blood vessel function, hormone function and weaken the body's own immune system. The doctors had only talked about thinning of the skin as a side effect.

This detox has not been an easy road, but this is the only way out of the medical fat cycle. I started medical liposuction at the beginning of February 2021. In the years 2019-2021, I had used different strengths of cortisone creams, elidel, Protopic and taken a couple of courses of Prednisolone. In general, I used fewer and shorter courses of these than what was prescribed. I decided to wean myself off of all of these. My health and well-being is high on my list of values, and that's why the decision was ultimately quite easy to make.

I am detoxing for my overall well-being, more balanced hormone function and beautiful skin for the rest of my life! Of course, now also because of the health of my soon-to-be-born child.

 

The drastic detoxification process begins to show on the skin

At the beginning of the withdrawal, I doubted whether I could really suffer from addiction, but when I went to month two and three.. clear withdrawal symptoms started, which made me realize that, yup.. here we are.



Month 2: the swelling of the face and eyes increased, the hands also turned into "red sleeves" and a clear red border of the rash appeared on the chest.


Month 3: More tissue fluid was leaking from the lips and also from other parts of the skin, hair was falling out, the skin was losing color, the swelling was severe, especially in the mornings, and the peeling of the skin intensified. At that time, the dreams were also interrupted and the ability to regulate temperature did not work, which is why I was, for example, freezing and sweating at the same time.

 

Healing begins

The past year has been wild and tough, but I wouldn't change a day. I've gotten rid of medicated fats and also the constant basic fattening cycle!! The skin is no longer tight after a shower and it doesn't "scream" fats. Of course, this process is still in progress, and the exact end date cannot be known. However, I trust my body more than ever before.

My body has done all this healing and process so far all by itself!! And at the same time still growing a little life inside. How wonderful <3 So the skin can calm down, get stronger and learn to produce its own moisture when you give it the chance!


Pictures when the skin already shows a clear change for the better. Body image 2021 summer cf. April 2022.



If someone else is struggling with the same type of symptoms and thoughts, or the background is the use of cortisone in one form or another, I would hope that everyone would get to know it.

TSW is a poorly recognized condition, but very common. In most cases, doctors diagnose it as "exacerbated atopy" and prescribe more medicated ointments/oral cortisone and the addiction gets worse. Tacrolimus and pimecrolimus creams cause the same or even more severe addiction symptoms than cortisone creams.

I have made an ig account on the subject @hk_tswjourney , Below are also some sources. I believe that everyone struggling with skin problems wants their skin to be in good shape permanently.

I know I'm not the only one who is tired of trying again some new or stronger medicated ointment, when nothing seems to help but for a while. None of us want more suffering, stress, self-esteem problems, redness, dryness, swelling and constant itching!

Thanks for letting me share my experiences <3

Hanna-Kaisa

 

Lisätietoja ja lähteitä aiheesta:
https://fi.wikipedia.org/wiki/Paikallissteroidiaddiktio
https://www.itsan.org/what-is-tsw-syndrome/

https://youtu.be/x4ypA9w81f0

Facebookin vertaistukiryhmä: https://www.facebook.com/groups/355315721754487





Check out Kolme Cosmetics' products for sensitive and easily reactive skin:

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3 comments

  • Helena Lehtiö on

    Tämä täsmää minunkin havaintoihin, kamppailen parhaillaan irti kortisonivoiteista.
    Iho-oireista olen kärsinyt 30 vuotta. Tällä hetkellä rasvaan ihoa itsetehdyllä voiteella, missä on mehiläisvaha, manteliöljyä ja sheavoita.

  • Anna on

    Todella iso kiitos tämän jakamisesta. Kuin olisin lukenut kuvausta omasta elämästäni. Sain lisää uskoa siihen, että ongelma todella on voiteissa, ei minussa. Kiitos!

  • Anne karttunen on

    Hyvä kirjoitus! Terv atoopikko

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