So things are good, and every day seems to be better than yesterday. "Bad days" are generally better than the "bad days" from last month. Sometimes I'll have a rough night and spend most of the dark hours with endless itching, or my back will be working through an oozing phase that causes me to toss and turn and earn zero hours of sleep. Thankfully, after a day or two, the wave passes and I am able to function more on the normal side of life.
It continues to surprise me when I encounter people in public how many of the same questions or reactions I get, even if I've answered them already in the past. Below is my hope to a guide towards clarity on what Topical Steroid Withdrawal / Red Skin Syndrome is for me, my story, and how Josh and I are handling the recovery process.
What exactly is Topical Steroid Withdrawal / Red Skin Syndrome?
Topical Steroid Withdrawal is the result of my body becoming addicted over time to the topical corticosteroids that were prescribed by my dermatologist. Topical Steroid Withdrawal is the process of the body weaning itself off steroids. Red Skin Syndrome is the body's skin and immune system reaction to not having the drugs. It is important to understand that Red Skin Syndrome is NOT eczema. You can also check out this interview which covers a lot of great questions on the subject.
What steroids were you on?
For most of the last two years, I was using 2.5% Triamcinolone / Vanicream compound mixture. After frequent refills, my dermatologist switched me over to a 2.5% Hydrocortisone / Vanicream mixture. I don't remember when the switch happened, but since April of 2014 my flares became more frequent and severe. This is a sign that my body was becoming an addict -requiring more and higher doses of the lotion. I went from using a half-pound jar every six months (with often having left-overs beyond the expiration date), to completely using a pound jar every three months. I also received the maximum amount of Cortisone shots one can receive in a year, and doses of Prednisone at various points through the last two years. We didn't consider the steroids the problem because I was going through a lot of life transitions and stress at the time, plus there were numerous environmental and dietary reactions that had our attention.
So your body's super red and inflamed, how is this not an eczema flare?
Dr. Rapaport, a dermatologist who discovered Topical Steroid Withdrawal and Red Skin Syndrome, has a great explanation here ("Why is the skin so red in RSS?") and in the interview link I mentioned above. The general point is that it's not eczema, it's not "just a bad flare", or the result of allergies or environmental sensitivities.
How long does this normally last?
Having the condition is typically proportionate to the length of time the patient was using the steroids. In my case, I've been using topical steroids (as is normal for eczema patients) since I was a kid. However, I saw an increase in my need for the steroids over the last two to three years. It's possible it could hang around for that long. Most patients average having the condition for 18-24 months.
So when did you start the process?
Short answer: mid-October, 2016.
When Josh and I look back at photos of my flares over the last two years, it's possible I was showing early signs of the withdrawal as early as August of 2014. I had patches of eczema that would never seem to clear up, despite putting the steroid lotion on and honoring the restrictive diet. Over the course of time, those patches grew and spread. These were signs that the steroid lotion was the problem, not the solution.
In October of 2016, my body had had enough and I began having all of the TSW/RSS symptoms head-on. We thought at first this was an over-the-top eczema flare, so I went to my naturopath to figure out how to handle it. We tried to tame it with Prednisone, where the dosage directions were 5-5-4-4-3-3-2-2-1-1, in terms of how many tablets I took each day for ten days. At first, the first two days were amazing: my skin was clearing up and redemption seemed near. Relief! But then, on day three, it backfired. (It's important to note that my naturopath was reluctant to administer Prednisone, but we wanted to help get the skin under control so we could focus on the long-term solution at looking what could be going wrong with my gut.)
My body was livid because it was getting less of the drugs it craved. By mid-October, I was facing the worst "eczema flare" of my life. It was all over my body -even my feet- and my skin began to look deep purple in some places. The skin was oozing on my back/neck/face, extremely hot to the touch, red, leathery, and despite the amount of heat my body was putting out, I was freezing as if I had a fever. My shirt would stick to my skin, and I had to use ice packs to help with the heat and deep, intense itching. At some points, it felt like the itch was right next to the bone.
Determined to not let the "flare" define my life, I managed by God's grace to attend a Realtor conference in South Beach, Flordia, for three days. Within that timeframe, I began developing symptoms of a skin infection. I was shivering like I had a fever, and my body would not stop shaking. Thankfully I was able to be incognito at the conference and airport because everyone thought I had a really bad sunburn. (Score!) By the time I got home, I was able to get in for an emergency appointment at the naturopath where I was directed to go to the ER. We were nervous I had a skin infection and wanted to confirm with immediate lab work results.
I spent five days in the hospital at the beginning of November, with endless amounts of doctors and medical students coming in to see the latest science experiment that no one could figure out the cause or appropriate solution. Even the burn unit was at a loss for the right recommendation to help heal my skin. At one point I was able to see a dermatologist, who looked at my skin for literally two seconds, and then tried to sell me on Methotrexate without asking any background questions. She proceeded to tell me that it was a chemotherapy drug, would knock out my immune system, and that I couldn't get pregnant during my time of taking the drug. I felt uncomfortable with it knocking out my immune system and the pregnancy aspect, and decided to pave the road in pursuing natural treatment. Josh and I were amazed after many interviews how little the doctors and students knew about natural healing remedies. Many just jumped to giving drugs as a solution, regardless if it knocked out my immune system. Many doctors and the dermatologist had a deer-in-the-headlights reaction to considering a body's PH balance, leaky gut syndrome, or essential oils as a topic of discussion. The more we thought about it, we realized Western medicine's approach is to treat the symptoms. That's all they have time for: there are too many patients to see to focus on the long-term solution.
At first, they treated me for a topical strep infection. Then, that and every other common skin infection possibility came back negative. Thankfully the drugs they did give me via IV helped clear what we concluded to be a "superimposed bacterial infection". Josh and I now think this was because I was putting my regular non-steroid lotion on in copious amounts to where the skin was oozing and wrapped with a damp towel, and as a result bacteria was able to breed.
I've heard you say you go through "cycles". What is a cycle and how long does it last?
Red Skin Syndrome is a process where the body is healing itself from the inside-out, and the process of the healing takes place in cycles. A cycle a few months ago averaged for me every 7-10 days. At this point in the healing process, I feel they are now every 3-4 days, though it is getting harder to tell because overall I am less red and life is more manageable. What this looks like is on days 1 and 2 the skin is extremely hot, red, and leathery. I used to have oozing occur late at night for about eight hours around my neck, face, behind my ears, all over my back, and even on my arms and legs. It looks like sweat and smells horrid. The oozing is new plasma forming, so technically it's a good thing, but between you and me I wish I could hit the "Skip" button on that item. After month 7 in the process, I have had occasionally the oozing on my back and behind my ears for a few hours. Thankfully it doesn't happen that often because it is extremely disruptive to a good night's rest.
After days 1 and 2 are over, the heat wave passes and I start to have more energy. I've often felt days 1 and two are the equivalent to the feeling of having sun poisoning. The skin also does this thing called "elephant skin" (See Keegan, age 6.) where it gets super wrinkly despite it being dried out. It's so bizarre, weird, and super fascinating at the same time. On days 3 and 4, the body starts intensely shedding skin and I am significantly less red. At the start of each day, I soak for two hours in the tub. When the shedding phase occurs, soaking is extremely beneficial to letting the skin come off as gently as possible. And, it makes for less cleaning needs around the house. #vacuum
While it's gross on a lot of levels, I am thankful God made our bodies to be able to heal themselves in such a natural and organic way. I try to look at this on the bright side: every time a cycle ends it means that's more of the poison being pushed out of my body!
Overall, the cycles now are much more manageable than they used to be. Once I soak for a couple of hours, I am able to operate during the day like a fairly normal human being. Once evening comes, it's generally up in the air if I'll get a good night's sleep, but thankfully that's becoming less of an issue than it used to be.
I found this lotion that works like magic. You should try it!
Thank you for caring and wanting me to feel better, but no thank you. I am happy with the homemade lotion I am currently using. Please don't push me to try something I am not interested in. Please respect the boundary of my decision to decline. As a polite, quiet, non-confrontational person, this is always the most awkward conversation for me in this process.
Many over-the-counter lotions are full of chemicals that are counter-productive and are full of preservatives and toxins. There is also a high probability that the second ingredient is alcohol, which burns like hell on broken skin. Joshua and I have had great success with a lotion we have been making at home using the following ingredients: shea butter, beeswax, cocoa butter, olive oil, vitamin e oil, lavender oil, chamomile oil, and clove oil. (I may be allergic to coconut, so we are not using coconut oil.) I was formerly using Vanicream, but we have found the homemade lotion to not only be healthier and more cost-effective but lasts much longer. I am content and happy with the results that I am seeing from our homemade lotion.
So you can't take steroids to speed your recovery. Isn't there something natural you can take that acts like steroids to make you better faster?
Unfortunately there isn't a "quick" solution to make this all go away from a holistic perspective. By focusing on allowing the body to heal itself naturally from the inside-out, this will give the most sustainable and life-giving freedom that my body deserves. I am taking supplements to help heal my gut and support my immune system, which I believe will not only be best long-term, but will also benefit our children when the time comes.
Have you been officially diagnosed with TSW/RSS?
90% of the patients experiencing this condition around the world and in my support group have not received an official diagnosis. Some have tried to receive a diagnosis and not been successful. Many doctors refuse to acknowledge the condition exists because it has not been formerly made a "condition" in the medical field. Some of this refusal is to protect their own license, some out of ignorance, or others because they refuse to believe the drugs that give them free vacations could be causing harm to their patients instead of helping. Some patients have expressed that when they tried to receive a diagnosis from their doctor that their doctor argued that they needed to take more steroids or drugs, even when the patient tried to explain that given their history the steroids are the problem. Unfortunately, the eczema patient is at a disservice when it comes to Western medicine. Eczema should be treated holistically, because there is nothing short-term provided in the drugs eczema patients receive that serves the patient's best interest long-term. Eczema and atopic dermatitis affects 17.8 million people in the USA. Topical corticosteroids are the only therapy administered to these patients at this time.
Personally, I have spent a lot of money this last year exhausting all testing options at my naturopath. This includes bloodwork, IGG and IGE testing. With my husband being highly analytical, an engineer, and loving me so much that he would spend over hundreds of hours researching what my condition could be and all forms of therapy, we are confident I have Topical Steroid Withdrawal / Red Skin Syndrome. If you'd like to pay my medical bills, feel free to set up an appointment. I know that sounds rude, but I've had conversations before on this subject that sound something like "I'm not judging you, but I'm judging you." for not having an official diagnosis. You have no idea how frustrating and defeating it is. I'm sorry if it's not acceptable to you to not be officially diagnosed. Believe me, I want to be better more than anyone else in the room. But I'm not going to throw money out the window to be potentially approved something I already believe and can verify to be true. If that's not acceptable to you, I guess you'll just have to respect my decision.
What are you doing for therapy?
- At the start of each day, I soak in the tub for two to three hours. Occasionally, I will add Dead Sea Salt for twenty minutes. Sometimes I add bleach for ten minutes to help prevent bacteria growth. At the end of a long day of work, I may soak again for two hours: it's amazing to me how much the water helps calm the skin down. During this time I pray, reflect, listen to worship music, podcasts and books.
- I take supplements on a daily basis: two large fish oil capsules, a probiotic, a d-hist supplement (helps reduce histamine levels), two Benadryl tablets every 4-6 hours, and a Zyrtec every 24 hours.
- We make a homemade lotion using the following ingredients: shea butter, beeswax, cocoa butter, olive oil, jojoba oil, vitamin e oil, lavender oil, chamomile oil, and clove oil.
- I take Melatonin tablets at night to help me sleep.
- I am on a highly restrictive diet: autoimmune paleo, gluten/egg/nightshade/dairy free, anti-histamine diet. Dr. Rapaport and other patients will say that having restricting your foods does nothing to help TSW/RSS. For me, I have found this diet to greatly reduce the itch which has sped the recovery time and allows me to be more productive.
- I try to drink as much water as possible to help keep the skin from drying out, splitting, and I have a theory that it helps reduce the oozing. Whatever the case, it's also helping flush out any toxins building up in my system.
Wow, that's a pretty insane diet! What can you eat?
Thankfully I have been egg, soy, dairy, and mostly peanut free since I was 14 years old so this wasn't a total shock to me. (I have found I don't have a reaction to peanut butter, thank God. So I'll have that occasionally.) Over the last two years, I have cut out gluten and nightshades, which we felt caused flares and itching reactions. When we figured out in mid-November that I had TSW/RSS, we decided to cut out histamines. (Though there are some we have made exceptions for, such as lemons, cashews, walnuts, chocolate, figs, dates, cinnamon, and raisins.) It was hard to accept, but it is doable. In all of this, I have found it is more fulfilling to focus on what I can eat rather than what I can't. It is easy to be frustrated and discouraged, but then this is just an opportunity to be creative with what I can eat. Here is a list of the foods I eat on a regular basis:
- honeydew melon
- apples (Kanzi's are the best, after Honeycrisp of course)
- lemons (no reaction, great for honey/lemon/ginger hot water for a sore throat)
- sweet potatoes
- acorn squash
- spaghetti squash
- butternut squash
- sugar snap peas / green peas
- green beans
- corned beef
- cashew nut cheese
- green pea pasta
- freshwater steelhead trout (this is like caviar to me, SO FREAKING DELICIOUS)
- wild Alaskan sockeye salmon (never farm raised)
- pork (in limited quantities)
- almond butter
- Larabars (includes cashews, walnuts, dates, figs, etc. with no reaction)
- Pashca chocolate (no reaction, thank you Lord Jesus)
- coffee (the life blood of all sanity)
- homemade almond milk
- seasonings: olive oil, sea salt, fresh ground black peppercorn
- occasionally having: tomatoes, bacon, poppyseed dressing
If something isn't listed, then there's a good chance I'm not eating it right now. Generally, for breakfast, I'll do a bowl of fruit and a light meat such as chicken or steelhead trout. I'll snack on apples, Larabars, carrots and cashew nut cheese throughout the day. For lunch and dinner, I'll usually do a half-plate worth of veggies and a meat that's filling. Usually, this looks like a medley of carrots, broccoli, and sugar snap peas with steak or lots of chicken. Josh and I will typically make the same thing for a few days until we get bored, then we may mix it up with a squash or over-bake sweet potatoes so it's like having sweet potato casserole. On special occasions, I'll have bacon and tomato on a burger, but it's very seldom.
My favorite discovery has been making a friendly "blueberry muffin". I put about 3/4 cup worth of almond butter in a bowl, and something close to 1/2 a cup of blueberries together and nuke it in the microwave for about a minute. Sometimes that's just the cure for a carb craving.
Are you still working?
Yes, by God's grace I am still working. It takes me a little bit longer to get ready in the morning compared to other people, but I am able to show homes and operate as normal for an agent. I am extremely grateful to be in business and continue working thanks to the referrals of past clients, friends, and family. Thank you for your support and encouragement. It is a blessing to be able to get out and about and to give my attention to something other than my skin. It's great to work towards my goal of being debt-free and getting rid of student loans. #daveramsey Most of all, it is always a joy to be apart of such a wonderful chapter in people's lives.
How can I pray for you and others facing this condition?
Many people experience depression and suicide as a result of this condition. Many are not able to work, have to have help for basic needs from a caretaker, and essentially have to put their life on hold. Some people lose their spouse, friends, or their job in this process. Some people in my support group have expressed that friends and family do not believe in their condition, and therefore cut off communication with them. Satan not only attacks our identity like crazy in this process, but with no guarantee of a quick recovery it is easy to lose hope. This condition often makes sleep impossible and keeps us up in the late hours. When you're exhausted, can't stop itching / oozing, and it's 2am and everyone's asleep it's easy to have dark thoughts cross your mind, even if you're a pretty stable person.
- Please pray that each person facing this condition would come to know Jesus as their personal Savior if they do not already.
- Please pray that those experiencing this condition would be blessed with a vision of hope and believe that they will be healed in due time.
- Please pray that those experiencing this condition would be blessed with a community of support and encouragement, and positive voices speaking into their life.
- Please pray that those experiencing this condition would be blessed with a hedge of spiritual protection from the enemy, and that his plans would not prevail. May they have the strength to stand under the burden and pressure to not give in to defeat.
- Please pray for those who do know to Christ to trust in God's plan and to see His faithfulness in the everyday little things.
- Please pray for those experiencing this condition to have their financial needs met, since many have to quit work or school until they are healed.
- Please pray for those as caretakers to be strengthened with a supernatural strength, grace, and patience that only comes from Christ alone.
- Please pray for those experiencing this condition to have faith and courage, as every decision we make can be crippled with fear of potential negative consequences or outcomes.
Thank you for taking the time to read this, I realize it is a lengthy article. Please feel free to contact me if you have any questions. I hope this has been extremely helpful and an insight as to what we are facing and are powering through each day. We truly appreciate the amount of love and support from our friends and family, thank you for walking with us through this process. With God, all things are possible.
"O my people, trust in him at all times. Pour out your heart to him, for God is our refuge." Psalm 68:2 NLT
"The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23 ESV