Updated: Nov 17, 2019
This is not for the intent of providing medical advice, but is my personal experience with Topical Steroid Use/Addiction/Withdrawal. Please seek your own medical advice and care.
Let’s see where should I start? March 06, 2012 began one of the toughest things I have had to go through health related in my life. I have had Eczema (atopic dermatitis) since a small child (newborn ). The Free Dictionary's definition for eczema is, “A noncontagious inflammation of the skin, characterized chiefly by redness, itching, and the outbreak of lesions that may discharge serous matter and become encrusted and scaly.” While eczema isn’t a deadly or contagious disease it is very common in the United States and is one of the more common skin problems in children under the age of 12. The pathology of Eczema (atopic dermatitis) is it generally starts in infancy and heals, another outbreak between 4-6 years of age heals again, a possible recurrence during teenage years or as a young adult, and then you outgrow it.
So my parents took me to the dermatologist as a new born to resolve this rash on my skin (eczema) and the dermatologist prescribed a tube of cream which was my skin’s first introduction to topical corticosteroid/hydrocortisone creams (TSC). I’m not sure of the name of the TSC prescribed, but I do recall my parent’s telling me that it was $30.00 a tube in the 80’s. That was used long enough to heal the rash and I didn’t have another outbreak until 5 years of age; which the same TSC was prescribed and healed another episode. The next eczema flare was at around age 9 or 10 and back to the dermatologist I go, this time the dermatologist suggested using an Over The Counter (OTC) hydrocortisone cream which has very low steroid potency. I used the low potency hydrocortisone for awhile and then tried weaning off/stopping cold turkey, but I would always have embarrassing breakouts which resorted in me continuing to use the creams.
Okay let’s speed things up I used OTC creams intermittently for about 23 years until they eventually stop working and no longer cleared my rashes. I had my own health insurance coverage and I found myself back at the dermatologist after all these years. Now we’re playing with the super potent compound creams that had to be filled at special pharmacies and countless other corticosteroid creams and lotions. I soon came to the conclusion that I would be using these creams for the rest of my life, not really knowing all of the potential side effects of long term use of TSC.
I used potent TSC pretty regularly for the next 9 years. My skin was always clear and I rarely had breakouts, so I only visited the dermatologist every six months to have them write out TSC prescriptions for six months at a time. The dermatologist never discussed with me alternatives to using the creams and just wrote prescriptions. Now keep in mind this was the third dermatologist I've been to since I started going as baby, so this wasn’t the method for just one dermatologist but for all 3. At age 31 I got this really bad rash on my neck and the dermatologist gave me a steroid injection, which was luckily the only steroid injection I ever had. The steroid injection cleared my rash and I just resorted back to using the TSC.
Around March, 2012 I was running out of TSC and was transitioning jobs, well my health insurance ended before I was able to refill my creams. UH OH I’m in deep….! The creams with insurance are $70.00, and without insurance $300.00+. I was kind of forced into not using the creams anymore, which now I’m extremely grateful. I always wanted to stop using them anyway, but I would breakout even if I skipped one week of not using TSC. Now realizing that I had no access to TSC, I started reading and researching everything possible in regards to discontinuing the use of TSC, and mentally preparing myself for broken skin. Well I wasn’t in any way prepared for this and realized what I was about to go through was going to be a nightmare. Low and behold I hadn’t been treating eczema all these years as I was informed by dermatologist; I was treating my body to its addiction to steroid creams.
Topical Steroid Withdrawal (TSW) or Red Skin Syndrome (RSS) is when your skin is addicted to the TSC and basically goes through this treacherous detox. In hindsight my skin became addicted when I was between 9 or 10 years old. Now instead of researching eczema cures, I’m researching Topical Steroid Withdrawal. While researching I became annoyed at all the potential dangers I had placed on my body for so many years by using TSC. Some of the possible dangers are glaucoma, adrenal insufficiency or possible adrenal failure, cataracts, and Cushing’s syndrome to name a few. The adrenal gland naturally produces cortisol and steroids, so if topical steroids get in the blood stream it can affect the adrenal functionality. While complete adrenal failure is a rarity, it is a possibility when using TSC long term but luckily I didn’t have any of these problems.
However, the pictures I saw of people who stopped using TSC and were experiencing TSW/RSS were disturbing to say the least. Also the recovery time was based on the length of time TSC were used, and I had been using OTC creams intermittently for 23 years and potent steroids for about 9 years. The only thing I could hope for was that my skin was going to recover much quicker, but somewhere deep inside I knew how long I had been using the creams and felt my withdrawal was going to be parallel to some of these familiar strangers on the internet.
The first two or three months are the absolute worse; I literally thought a beast was coming out of my body. I’m going to walk you through what happens during this time, because it was so helpful to me knowing that everything my body went through was part of the normal process. First it started with very tiny bumps all over my face that lasted for two weeks and then my face cleared up very nicely actually. I thought to myself this isn't going to be as bad as I thought, well I spoke too soon because I started to breakout on my neck, arms, and legs which were pretty itchy and more inflamed than the bumps that occurred on my face. This was the start of my nightmare!
Over the years I mainly used the TSC on my face, occasionally on my legs and hands if I had a breakout, and once on my neck. Why was something that I applied primarily on my face causing rashes to spread over my entire body? Well the answer to that is; the skin is one organ, so it didn't matter where the creams were primarily applied it affects the entire organ. In one of the website links I’ve attached Dr.Rapport refers to this as, ‘Distant Steroid Induced Eczema.’ By the time I was in full TSW, my face was swollen like I had been in the boxing ring with Mike Tyson; my skin was burning and inflamed, unforgivable itching, dark from scratching and rubbing, bleeding, bumpy, thinning (transparent looking pinkish skin), oozing yellow stuff all over that smells, both ears were draining with some kind of fluid, my feet were swollen (I couldn’t zip up one of my boots), shedding skin everywhere, thinning eyebrows, and when I looked in the mirror I didn’t recognize myself.
One night my neck got so inflamed and the burning and itching so intense that I literally thought I was going to die, I went downstairs and grabbed a pickle jar from the refrigerator placed it on my neck and felt nothing! I literally couldn’t feel the cold from the pickle jar, just to give you an indication of how inflamed/hot my neck was. The itching is almost unbearable and is at its worst at night, so you won’t be getting much sleep. I was taking 5 showers a day just to get any relief and to ensure my skin wouldn’t get any type of bacterial infections. Showers are going to be your best friend during this time, make sure to use soaps for sensitive skin, change your towels and washcloths for every shower, and change your sheets and pajamas every day. I used Shea Butter and Vaseline over my entire body immediately after each shower to lock in moisture and keep my skin lubricated.
The Sun is really good in helping heal the skin once the worse stage of TSW has passed; but the first three months may not be the ideal time it really just depends on your rate of healing. I would sit in the sun (if available) in intervals of about 15 to 20 minutes 2 times a day; however be careful of too much sun exposure which can further irritate the skin. The really tough thing about this process is the ups and downs; your skin starts to improve and feel better and then BOOM you experience another flare all over again. I was pretty much a hermit during the first 3 months of withdrawal; the only time I would leave my place was to go to work or family/friend’s house. After month three I was able to start going places again and being more social even though my skin was far from being healed. My total healing time took about 3 years, but keep in mind I used these creams intermittently for 23 years.
The unfortunate thing about TSW is each person’s healing time is different, and there is no specific time frame, it depends on a bunch variables. Although I had support from family, friends, and co-workers while going through TSW, I lived alone (other than my beloved Shih-Tzu Myles) and this was one of the loneliest yet most life changing points in my life. I learned what it meant to truly love myself from the inside out, because the outside looked horrible. I gained a deeper sense of compassion for all people/things suffering and or ill, and lastly gratitude just being thankful for every little improvement in my skin among other things. The deeper sense of compassion stemmed from my knowing my health was going to get better, and that there are people that are living with chronic and terminal illnesses. The level of gratitude in me shifted I realized how great life is, and how you truly have to immerse yourself in every moment of it good or bad and be grateful for the experience of life. I wouldn’t want someone to go through this just to realize these things, but I realized my strength and in the end found myself being grateful for the experience.
Three things prompted me to write this blog, the first being prevention if I can prevent one child/person from going through TSW/RSS I’m grateful. Secondly, I don’t know how I would’ve gotten through this if I weren’t able to read other people’s stories, progress, and finally their healing. Lastly I didn’t find much information on African/African Americans that were going /gone through TSW/RSS. I was of course able to find information on African/African American skin and eczema, but not with what I was going through. During that process it would’ve been refreshing to see the progress of someone who had African/African American skin.
I now wish I had written this blog during the process, but I couldn’t concentrate on anything for long periods of time. However I did keep a photo journal, because I knew I would have to share this experience once I got through it. I will be posting helpful Websites and a TSW Care List. The websites and TSW Care List are things that were very helpful to me during my withdrawal. Also the websites go into more detail from a medical perspective versus a personal experience. For example the sites talk about why you can’t wean off TSC, why you have to stop cold turkey in order to successfully discontinue its use, and how TSC are not bad when used properly. They explain how using TSC for more than 2 weeks can potentially cause an individual’s skin to become addicted, etc….
My intention isn’t to bash all prescription meds, dermatologist, or physicians because they are all important to our overall health. My intention is to only advise you to research, research, and research! When I started using these creams the internet was non-existent, but now there is a plethora of information available at the click of a button on prescribed meds, OTC meds, their side effects, and natural alternatives/remedies. Please be aware of what you put on the inside as well as the outside of your body, even when it’s prescribed by a doctor. So to all of you that are currently going through TSW/RSS I encourage you to stay strong, trust that the process will come to a place of complete healing (I’m 100 % healed), don’t give up, and go to that inner place in you that is true beauty! Much Love!
Please post any questions you may have regarding TSW/RSS or my personal experience and I will gladly respond based on my knowledge and experience. Happy Healing!
Helpful Website regarding Topical Steroid Withdrawal