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JOANNA BLEIN - FOUNDER OF FEEL GOOD COUTURE - ABOUT TOPICAL CORTICOSTEROIDS...

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JOANNA BLEIN - FOUNDER OF FEEL GOOD COUTURE - ABOUT TOPICAL CORTICOSTEROIDS...

... how they temporarily treated her eczema and permanently destroyed her skin and why topical corticosteroids is not the biggest problem.

 

ONCE UPON A TIME

Around 10 years ago or so my dermatologist asked the well-known and respected professor of dermatology in the University Hospital in Bern for his assessment and opinion about my eczema case. That time apart from the uncontrollable full body eczema, I had open wounds on the soles of my feet and the palms of my hands due to the dyshidrosis. My whole body, including my face, was insanely itchy and covered with oozing rash that was spreading like a wildfire that nothing and nobody could stop.

When the professor entered the cabinet, I was asked to remove the clothes except the underwear. My husband was there with me to assist me as my hands and feet were covered with the bandages that we were asked to remove as well. This was very tricky as they glued to my open wounds… So, in order to remove them as safely as possible, we had to socked them in the water… I remember that professor asked the nurse to bring the big medical bowl with water so I could put my feet there and get the bandages removed.This whole procedure took a while and was extremely painful. Eventually I was ready to get my skin assessed by the professor. 

 

 WHEN THE WORDS YOU WON'T TO HEAR ARE SAID LOUD

One glance on my skin was enough for him to understand the seriousness of the situation. His first words were: “You can’t use any topical steroids ever again.” Then indicating the places on my body, he continued: ” You have extended skin atrophy that at this stage is irreversible. Your blood vessels are enlarged, and deep stretch marks, called striae, are clear evidence of corticosteroids’ adverse effects.”

That was exactly what I didn’t want to hear. But let’s be honest, I knew how my body looked like and deep inside I also knew that these are the side effects of the topical steroids that were prescribed me like vitamin C over the years since I was a little kid. The thing is that every time I was expressing my worries, doctors were cutting me off in mid-sentence saying that currently they have no other treatment to propose me. I was suffering. Physically, mentally, and emotionally…. I was desperate to get the relief…. Even for a day…

 

WHAT'S THE BIG DEAL?!

Topical corticosteroids are the first line of treatment for many skin disorders and dermatologists love prescribing them simply because of their anti-inflammatory and immunosuppressive effect.

There is no doubt that since its introduction in the early 1950s, hydrocortisone has revolutionised dermatology. Modifications to the chemical structure have led to enhanced efficacy, but also more adverse effects that, unfortunately, many doctors don’t take seriously and ignore them as much as possible.

The ease with which steroids are sold and prescribed nowadays, terrifies me.

There are recommended to almost every skin imperfection you can imagine, including the diapers rash. Yes, diapers rash! C’mon! What’s wrong with the old good PENATEN® Cream?!

 

LET'S GET THE THINGS CRYSTAL CLEAR

As a woman who has to live with numerous severe side effects of topical corticosteroids, I learned my lesson that I’d like to share with you today.

But before I start, note that:

This blog provides general information and discussions about health, skin disorders and related subjects. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment.

If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment. Never disregard professional medical advice or delay in seeking it because of something that have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately.

The opinions and views expressed on this blog and website are my own based on my own experience and have no relation to those of any academic, hospital, health practice or other institution.

 

Ok, since we have it behind us, let’s talk about what Topical Corticosteroids.

 

THE ROOT CAUSE OF THE PROBLEM

Corticosteroids is a pretty hot and very controversial topic. Since the release of the Super Cortisone+ by the celebrity dermatologist Dr. Sandra Lee, aka Dr. Pimple Popper, that btw shocked me to the very core, I can’t stop thinking about that mostly because I have mixed feelings about the topical steroids.

You see, I feel that the corticosteroids are not really the problem. The root cause of the problem are:

- the doctors who prescribe them lightly for almost everything, often without assessing the complete state of the patient health,

- the broken drug regulation system that allows these dangerous drugs to be sold over the counter without any warnings,

- lack of the control of these drugs, so that Topical Corticosteroids are not sold without proper prescriptions.  

- lack of the involvement of general practitioners and nurses in the patients’ education

- lack of the ethical responsibilities of pharmacists in correctly advising patients about the safety of medicines bought over the counter.

- the medical industry and practitioners that ignore the voices of the patients who suffer from the adverse effects of TC.

 

"FIRST, DO NO HARM"

In 2012 An Indian Journal of Dermatology published an article “Rational and Ethical Use of Topical Corticosteroids Based on Safety and Efficacy” by Sanjay K. Rathi and Paschal D’Souza

They wrote:

Many dermatoses are treated with TC [Topical Corticosteroids], but evidence of effectiveness has been established only for a small number of conditions. It is important to prescribe TC only after having a correct diagnosis in a patient and for those dermatoses where there is reasonable evidence of efficacy. We should strongly resist the temptation to use TC for everything that we do not understand or where nothing else is working. This may provide temporary benefits, but makes diagnosis even more difficult for the next time apart from exposing the patient to the risk of adverse effects.”

The sad reality is that some dermatologists are such big fans of corticosteroids that they call them “dream creams” and send them to the beauty influencers as a gift without any warning, showing complete lack of medical ethics and forgetting that they are healthcare providers and they should always avoid causing harm to people. 

 

THEORY VS REALITY

« Generally, most of the TC, regardless of the potency, should not be used for more than 2–4 weeks duration at a stretch. If there is worsening of the lesions or no change noticed, the product needs to be discontinued and re-evaluation of the diagnosis is needed. Super potent and potent preparations are specifically recommended for a maximum duration of only 2 weeks followed by a tapering regimen for maintenance to avoid adverse effects. »

I’ve been suffering from severe atopic eczema whole my life. I lost track of how many dermatologists I went through, but one thing I know for sure is that many of them were designing my full-body treatment with the use of the highest potency TC for the period often longer than 4 weeks, with the occlusion, excluding the time for the tapering off.  

I’ve been treated that way for years. Over and over again, even when the well-respected professor of dermatology I mentioned at the beginning, expressed very clearly in writing his opinion and firmly dissuaded my dermatologist the use of the TC in my case. This clearly show how broken the medical system is.

 

ADVERSE EFFECTS? INTERESTING.

“TC are used primarily for their anti-inflammatory properties. Paradoxically, the same mechanisms which mediate their anti-inflammatory properties and underlie their usefulness are also responsible for their adverse effects. Besides the cutaneous and systemic adverse effects the phenomenon of steroid addiction, tachyphylaxis, and contact dermatitis (CD) due to TC also needs to be borne in mind.”

Adverse Effect of Topical Corticosteroids

 

Two adverse effects that many dermatologists deny they exist: steroid addiction and topical steroids dependent face, or better known as a topical steroids withdrawal, red skin syndrome, or steroids dermatitis, caught my attention.

TOPICAL STEROIDS WITHDRAWAL isn't recognized as a medical condition (YET), but the fact that it isn't recognized doesn't mean it doesn't exist.⁠ ⁠ ⁠As the matter of fact, TSW Syndrome affects thousands of people around the world, of every age and background, and often it forces them to withdraw from their lives for months or even years.⁠ Many of them suffer inhumanely not only physically but also emotionally and mentally. And because doctors don't recognize TSW as a medical condition, often they are left alone without any medical support and help.⁠

Just visit ITSAN.org to learn from people who experience(d) TSW. Their suffering is undeniable.

 

THE FACTS SPEAK FOR THEMSELVES.  DO THEY?

What’s mind-boggling is that despite thousands of stories and pictures many dermatologists keep denying that TSW is a side effect of TC.

They consciously choose to ignore the TSW sufferers, blame them for misuse of TC, and keep prescribing TC just.like.this.

Similarly, to the authors of the article, they suggest that it’s a fault of the patients who “(…) keep on using the steroidal cream till they get magical response and continue it later to prevent rebound flare till finally the lesions become persistent.”

Clearly they refuse to take any responsibility for that.

The autors says “(…) despite the best efforts undertaken at our level, many of these problems will continue to persist because they were not contributed by us alone.”

 

YOU GOTTA KIDDING ME

Seriously? The high potency steroids are prescribed by dermatologists or doctors of other specialisation. The low potency corticosteroids in some countries are sold over the counter without any warning what’s forever, not to mention that some well-known and respected doctors are recommend them for the cosmetic purposes.

What makes me really sad is that instead of starting the constructive dialog with the patients and dig a bit to find the root cause of their debilitating experience,  doctors shut down their mouth every time they try to raise awareness about the severe and dangerous side effects of corticosteroids they experience. 

Like one of TSW Warrior said: We don’t need a “dream cream”. We need Dream Team. We need doctors who are on our side. Doctors who take us seriously and who are ready to listen to us and our stories and act accordingly. We need healthcare professionals who will dig down to find the root cause of what we experience instead of prescribing another drug that will make more mess. We need healthcare providers who will respect our decisions and support us no matter what.

 

MAKE IT OR BREAK IT?

Topical corticosteroids, same as fire or money, can build or ruin our lives. In order to be safe and effective, they need to be used in a highly ethical and responsible way and this can be only achieved when the doctors and patients start working together and respecting each other.

 

“IT’S TIME FOR COMMUNICATION AND NOT INTIMIDATION.
WE NEED MEDICAL PROFESSIONAL WORKING WITH CIVILIAN PROFESSIONALS, SKIN COMMUNITY THAT LEANS BOTH ON DOCTORS AND PATIENTS, WHERE PATIENTS ARE NOT ONLY HEARD , BUT ACTION  TAKES PLACE  BECAUSE OF OUR VOICES. “

Briana Banos, TSW Warriors and producers of documentary on TSW “Preventable”.

 

***

After 40 years of using various corticosteroid I banned them for good and started the systemic treatment that hopefully will allow me to effectively control my AD.

 

Source:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401837/

Comments on this post (2)

  • Jan 07, 2021

    Thank you so much Melody for sharing your experience with me. I’m very sorry you had to go through this horrible experience. Stories like yours always breaks my heart. Nobody deserves to suffer like this.
    I’m glad it’s over and that you came out victorious. I wish you only the best! Big hugs, Joanna

    — Joanna - Founder of FEEL GOOD COUTURE™

  • Jan 07, 2021

    I started my TSW journey because of prednisone for my asthma NOT topicals. Topicals were added when they had trouble getting me off the steroids. I would get “burnt” all over. They added the creams as well as the prednisone until neither gave relief. It was a horrible journey but I am on the other side. Pigmentation is my lasting sign of it.
    Thanks for all you do fellow warrior!
    With appreciation
    Melody ✍️ Belliveau

    — Melody ✍️Belliveau

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