March 26, 2014

Topical Steroid Withdrawal | Beginning My TSW Journey

Various steroids I have been addicted to over the years

Hi ladies! I figured out it was time to post about my topical steroid withdrawal journey, since this is not a widely known subject - even most doctors are not even aware of this condition.

You might remember that I mentioned a few times in the past months that I have been swimming in an abandoned radioactive mine this summer, which I thought was the cause of the red, itchy and burning plaques all over my body. Well this was not the cause (not the number one cause, anyway). I very recently discovered, by myself, after countless hours of searching the internet, that I was suffering from topical steroid addiction. Topical steroid addiction, steroid-induced eczema, topical steroid withdrawal, and Red Skin Syndrome are some of the names used to describe the side effects of topical steroid use.

Unless topical steroids were used to treat other conditions, a person with steroid-induced eczema likely started out with true eczema. Topical steroids suppress the symptoms of true eczema for a time. Regular use of topical steroids causes the body to develop a dependency on the topical steroids. Once this happens, the rashes that appear are actually steroid-induced eczema and signify the beginning stage of topical steroid withdrawal.

A person who sees these eczema-like rashes will likely apply more topical steroids to suppress what they believe is simply normal eczema. They will also probably need to use topical steroids more often to suppress the rash or use a more potent topical steroid. At this point, the skin is addicted to the corticosteroids in the topical steroids and the person has Red Skin Syndrome. If this person stops using topical steroids now, they will begin going through topical steroid withdrawal.

You know what the doctor told me when I went to see her with these plaques covering my body? That I was not taking care of my body properly and that I probably had a reaction to the sun (hmm no, never in my entire life did this happen!). Of course, she only prescribed me tons more drugs, including various pills. Can you believe she actually lectured me when I returned to see her a few months after because the drugs did not work (because I was actually suffering from steroid-induced eczema!) only to go home with tons more drugs again? Do you notice a vicious cycle here? That's when I decided that enough was enough, and I decided to quit steroids cold-turkey. What happened after is a real nightmare...

The most common symptoms of topical steroid withdrawal are:

  • Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads.
  • Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth.
  • Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.
  • Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.
  • Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.
  • Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.
  • Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.
  • Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.
  • Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.
  • Exhaustion.
  • Insomnia or difficulty maintaining a normal sleep schedule.
  • Loss of appetite
  • Very, very dry skin that has the look and feel of plastic.

TSW sufferers all live this process differently. Personally, my worst area is definitely my face. It started a few days after I completely quit using steroids - I woke up to an incredibly swollen and oozing face. I could barely open my eyes - I was absolutely horrified. I cried all morning. I held ice packs on my face, I drank plenty of water and tea, I applied calamine to dry the ooze, and things eventually calmed down during the week. But - surprise! - another flare was waiting for me at the end of week - I woke up to a swollen and oozing face again, although it was a little bit better than the last time. I was devastated, since I was supposed to attend a friend's birthday that night, and I really thought I was doing better the night before. I could not help but cry again.

My most recent face flare was a bit different - it happened about a week ago, swelling and oozing as usual, but it calmed down quite quickly, although this time, it would not stop oozing, no matter how much calamine I applied. I grew tired of calamine since it gets hard to remove after a few applications, so I decided to stop using products and let my skin do its own thing. The ooze eventually dried off by itself, causing dry, tight and flaky skin. It was so uncomfortable, even coconut oil and natural balms would not do anything.

Through my researched, I learned about MW (moisturizer withdrawal). It is believed that stopping the use of moisturizers as well speed up the healing process since you are not clogging the skin and keeping it wet, thus allowing your skin to renew itself and heal naturally. I noticed an immense relief since I stopped using moisturizers.

My ears are covered in crust from the oozing. I am also getting a bit of ooze on my head, which seems to lead to a bit of hair loss around the crown area. My neck is dry and sore too, with a few patches of "sticky" skin. I can never find a proper position to sleep at night - either my swollen ears hurt, or my face stick to my pillow because of the ooze. I like to dunk my face in a sea salt bath at least once a day, or cover it with a cloth dipped in sea salt. Sea salt has natural antiseptic properties and it dries the ooze and soothes the skin.

My right hand has always been my biggest struggle when I had eczema - now it's just so painful. I can't even close my hand without my fingers bleeding. My left hand is doing better though, with only one finger affected. The rest of my body is okay I guess, just super dry, tight and flaky. It itches the most at night. It is doing much better without moisturizer, since even coconut oil seemed to make my skin itchy and red.

I take a sea salt bath once a day since my poor sore skin can't stand showers. Baths are actually a big relief and they do help me fall asleep, although I probably get only 3-4 hours of sleep a night. Even antihistamines that cause drowsiness won't work wonders since my skin itches the most at night.

Because of the lack of sleep and the pain, I can't work. I can barely go outside since the cold hurts my raw skin. I barely see my friends or family although I am incredibly grateful to have their support through these rough times. So I lounge at home all day, drinking plenty of water and tea, and eating healthy to detox my body. I read or play video games. The only remedy is time. It is believed that it takes 10-30% of the time one used topical steroids to be fully healed.



I think I mostly covered everything in this post, which is the first of a serie regarding my TSW journey. I will try to post monthly updates. I really wanted to share this with you ladies to justify the lack of posts - since I can't use anything on my skin, I obviously can't write about skincare or makeup products. I will still try to keep up with this blog, maybe with hair products, outfits (if my face looks decent enough for pictures) and recipes, until I feel better.

Thank you so much for sticking with me ladies!

6 comments:

  1. Oh my god! Please feel better. Thank you for sharing with us, TSW sounds awful, but hang in there and stay positive :)

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  2. Merci pour le post. J'espère que les crises vont s'espacer de plus en plus pour toi et complètement disparaître bientôt. L'avoir dans le visage rend ça impossible à cacher :( Encore une fois, lâche pas!

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  3. Wow tu parles d'un cercle vicieux! Heureusement, je ne fais pas d'eczéma, mais en regardant le vidéo je me suis apercue que jai eu des épisodes d'eczéma dans ma vie, notamment en revenant au Québec apres avoir vécu dans les climats plus humides. La pharmacienne m'avait dit de prendre de l'hydrocortisone, sans dépasser un certain nombre de jours, car cela créait la dépendance. Alors jen ai mis, le soir avant daller me coucher, pendant quelques jours et apres jétais correcte. Ca revient des fois, mais jamais vraiment sévere, et je suis contente davoir écouté cette pharmacienne, car jaurais p-e de l'eczema chronique aujourd'hui! Merci pour tes articles, je suis sure qu'ils aident plusieurs!

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  4. Oh mon dieu pauvre toi.. La peau peut devenir insensible et très mince avec ces crèmes. Le stress peut causer l'eczéma et je sais que les produits laitiers aussi.. Je suis pas une experte mais mon gars en a beaucoup souffert.. J'ai réussi cette année de contrôler sans crèmes à la cortisone et j'ai utiliser CVskinlabs qui est une révélation pour moi.. J'espère que tes crises vont diminuer ! Bonne Chance!

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  5. I'm right there with ya, girl... day 43.... esom salt water or apple cider vinegar and water (ONLY DISTILLED) works the best so far to dry up my ooze. It is AWFUL.

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  6. Oh my god, i never heard of this bad things before. I hope, you stay strong and I wish all the best.
    Send you a big hug. <3

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