Hi, I’m Liv
This is my story.
In the quiet solitude of this page lies my raw and tender truth. Here, I share my battle with topical steroid withdrawal (TSW) and shed light on the suffering endured by those afflicted.
Now, walk with me down memory lane as I recap my experience with topical and oral steroids, Dupixent, a random skin study drug, Non Moisture Therapy and Rinvoq. Forewarning, it’s a doozy.
PS Check out my Amazon Recommendations
Just an itchy babe with an iPad, passionate about making a difference one drawing at a time.
February 14, 2023
Part 1: The Onset of TSW
May 10, 2020
After years of clear skin, my childhood eczema came back. I assumed this was due to over-indulging on wine and cheese but I scheduled an appointment with my dermatologist to be sure. I left her office with a new regimen to follow including Protopic, Tacrolimus and a few topical steroids. I’m no stranger to these ointments so I used them accordingly.
June 16, 2021
A year later, I experienced my first full body flare. I went to the emergency room for answers. I recall thinking, “This doesn’t feel like eczema.” The burning sensation was louder than the itch and I was in pain.
This was the first time I was prescribed Prednisone, a strong oral steroid. A few hours after taking the first pill, I immediately felt sweet, sweet relief. I was so thankful there was a medication that totally eliminated my discomfort. Within days, my skin was clear again and I was as good as new… or so I thought.
July 24, 2021
A month later, I started flaring again only it felt different this time. I’ve never seen my skin flake like this before. I began to lose fistfuls of hair and developed a bald spot in the back of my head. I thought it was all COVID related. There was so much uncertainty at this time and I already had the virus twice.
March 18, 2022 - April 10, 2022
The following year, I saw my skin cycle from being red and itchy to extremely dry with a lot of flaking. The pictures above show this progression over the span of a few weeks. There were many environmental factors I thought played a role. I even thought I suddenly became allergic to my hypoallergenic angel of a dog, Milo.
The flares would come and go but I was able to plan around them and maintained some sense of normalcy. Eventually, these “mini” flares led to another full body attack so I went back to the emergency room for that magical pill, Prednisone.
May 17, 2022
Here I am being cute and trying to enjoy life despite balding and the unpredictable skin drama… I went back to my dermatologist who suggested Dupixent, new non-steroidal medication. After a few doses, I felt a difference and was optimistic about my new treatment plan.
And then BOOM!
May 27, 2022
Ten days later, a massive lymph node from the pits of Hell swelled in my neck. This was seriously so, so painful and terrifying. It appeared overnight and just kept growing (goosebumps) I could barely move let alone work or handle basic, everyday tasks like walking my dog. I was referred to the ear, nose and throat doctor who was also confused. Apparently this was only seen in children with very weak immune systems.
I was diagnosed with lymphedema, prescribed antibiotics and within the week, the lymph node disappeared. This experience was unsettling to say the least and not having answers besides my doctor saying, “This seems like a freak accident” didn’t help.
June 10, 2022
As I continued to deal with excessive hair loss and thinning, I decided to cut it off. I started to flare on my scalp and figured it was for the best. With all this crazy stuff going on, I needed a vacation. So I went to Jamaica.
Sidebar- leaving the country when I was told I basically have the immune system of a 16th century toddler was probably not a good idea. While I had a blast, yes, it was irresponsible.
But a girl’s gotta LIV!
August 1, 2022
During this trip, I was super inflamed. While I wasn’t very itchy (the saltwater from the ocean helped) I was RED. I had no idea this was classic TSW “red sleeves”, marking the onset of steroid withdrawal.
On the way home, my feet, ankles and legs became so swollen it hurt to even stand. My mobility was impacted and I was worried. I couldn’t help but think something was awfully wrong.
Over the next 9 months, the flares continued to cycle but it was still manageable. Well, manageable enough. At this stage, I really struggled at bedtime. Whenever I laid down, it felt as if my skin was literally ripping apart. Falling asleep was virtually impossible because I couldn’t escape the itch, burn and nerve pain.
I stopped taking Dupixent after developing a serious eye issue. I knew conjunctivas is a common side effect but I did not anticipate spontaneously becoming blind from hypersensitivity to light. I’ll never forget the first time it happened…
I was visiting my sister in NY and we went for a lovely dinner. It ended with me having to cover my head with my jean jacket, being guided outside, into car, back to hotel and put into bed. It was night-time and yet, still too bright to even open my eyes. It was that bad. I was very lucky to have my sister there because I was totally helpless.
After another episode of this spontaneous blindness and pain, I went to an optometrist who said I now had eczema on the inside of my eyelids and prescribed…. (guess?)… steroid eyedrops.
Dupixent lost its effectiveness overtime and injecting myself 2x month, in addition to the eye issues, made it clear I was not a good fit for this medication.
February 15, 2023 - April 11, 2023
The hair loss continues…
March 2, 2023
Then, the ooze started. As bad as my flares have been, I’ve never seen my skin do this. Ever. I was referred to an allergist who insisted this was still eczema. I was prescribed another round of Prednisone.
Are we seeing a trend here?
March 11, 2023
8 days later I was back in the emergency room. The pain was unbearable. If I had to use a word to describe the pain, it would be searing. Moving around was difficult and I was absolutely miserable.
The doctors said I rebounded from the last round of Prednisone because I didn’t use topical steroids alongside it. I thought this was curious. They gave me another round of Prednisone with a large tube of topical steroids, wished me luck and sent me on my way.
Ok, I know what you’re probably thinking… Really Liv? 4 rounds of Prednisone? I began to think the same. Something isn’t right here. Why do I need Prednisone and topical steroids to maintain some sense of normalcy? Why is that the only thing that can effectively treat the flares? Why am I flaring like this to begin with? This does not feel like my old friend eczema… could it be the steroids possibly causing this?
I began to research and my stomach dropped. I was experiencing topical steroid withdrawal. I was sure of it; I had almost every reported symptom. A wave of relief fell over followed by absolute horror. I could finally put a name to what I was experiencing but I realized my journey was only beginning.
In addition to the bone deep itch, burning, oozing, flaking, hair loss, swollen lymph nodes, erythema, edema, and insomnia, I began to experience chills, the inability to regulate my internal temperature and an overall feeling of malaise.
I found out about TSW on Reddit and not in any of my (many) doctor’s offices. In fact, every doctor I’d seen just prescribed more steroids.
Out of desperation, I signed up for a skin study testing an experimental steroid free drug to eliminate itch. The injection version of this medication had already been approved by the FDA but this study tested it as a pill. I thought, “I’ll try anything at this point”. It wasn’t until I was halfway through the study, I googled the supplemental ointment that was given. The study nurse told me there wasn’t any guidance on how little or often I should apply. I thought it was some generic form of over-the-counter hydrocortisone. WRONG. It was a potent steroid and a strong one at that. Now, this seemed nonsensical and dangerous. For the purpose of the study, how would the researchers even know which medication was working; the pill or the ointment? For my own sake and that of my fellow study subjects, what happens when the study concludes and we cease this strong topical steroid? I tried to ask the important questions but the lead doctor was… let’s just say evasive. Fine. I dropped out of the study and delved deeper into learning about TSW.
The crazy thing about TSW is that it’s wildly unpredictable and it pushes you to the edge and then some. Just when I thought things couldn’t get any worse, they did. Every time I thought I couldn’t bare any more pain, there was more on the way.
Mentally, it’s exhausting and demoralizing.
Physically, there are just no words.
If you’re reading this and are going through TSW or think you’re beginning to, you must brace yourself and stay strong. There’s no other option. You will get through it. It will rock your world and turn everything upside down but you will get through it. Honor your emotions but try not to lose faith no matter how dark it gets. Be kind to yourself. Be patient. Surround yourself with supportive family and friends who understand you must prioritize what is best for your healing journey. You will heal. Please visit Resources to learn more from trusted leaders. Also, check out the Community page to find fellow warriors. And :), you can always talk to me.
If you’re a caregiver or partner to a TSW warrior, thank you for being there. I know it’s not easy to see your loved one suffer. As a newlywed, TSW was thee nightmare scenario and in general, it will tests the limits of every kind of relationship. Caregiver’s fatigue is real and I hope you know you’re truly appreciated. Please just understand that the person you are caring for is experiencing immense pain and suffering. We love you but may lash out or choose to isolate. Don’t take this personally, we are in survival mode. Please visit the Resources page to learn more about TSW.
Part 2 contains pictures may seen as graphic to virgin eyes. This is your trigger warning.
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Alright, here we go.
Part 2: Full Blown TSW
After taking that last done of Prednisone in March, I tried tapering off steroids over the next couple months but soon found myself fighting the mother of all flares.
The collection of pictures below may seem out of order but that’s because healing from TSW is nonlinear. Everyone’s journey looks different especially when it comes to time and potency of the steroid used.
Before we begin, this is photoset is a good baseline reference.
June 25, 2023
As you can see, my skin is pretty inflamed. While I was horribly uncomfortable, I was still able to function.
That would soon change…
Months 1-3
July | August | September
Treatment: Antihistamine
Symptoms: itch, burning sensation, shedding of skin, elephant skin, sensitive to water, poor temperature regulation, swollen eye lids/hands/feet/legs, loss of feeling in legs when standing too long, loss of eyebrows and hair, insomnia and obviously depression
Pain Level: 10/10
The first few months of TSW were brutal both mentally and physically. I became very depressed as I watched my body transform into something I couldn’t recognize in the mirror. I saw a lot of skin shedding and experienced a lot of pain during this time. I sorely missed Prednisone, but knew that was no longer an option. In hindsight, I’m proud I didn’t cave.
September 7, 2023
September 15, 2023
Hyperpigmentation on swollen hands
July 19, 2023
July 9, 2023
August 18, 2023
Elephant skin on knees
July 21, 2023
August 27, 2023
August 8, 2023
Months 4-6 Steroid Free
October | November | December
Treatment: Antihistamine, Moisture Withdrawal
Symptoms: intense itch, skin pain, shedding of skin, enlarged lymph nodes, ooze, poor temperature regulation, insomnia, still very depressed
Pain Level: 12/10
I didn’t take many pictures during this time because my hands were in so much pain. You never know how much you rely your hands until they’re absolutely shredded and the slightest movement can spark tears. By the end of the first few months, I realized my skin could no longer tolerate any moisturizers without immediately breaking out into hives so I listened to my body and stopped against doctor’s advice.
By the end of December, I decided it was time for medical intervention so I went to the hospital. I just couldn’t take it anymore and refused to believe there was nothing that could help. I suspected I might have had a fungal infection and needed to be looked at. While the doctors at the emergency room didn’t swab for one, they were shocked to see my condition. So shocked, I was able to see the hospital’s dermatologist 2 months earlier than my scheduled appointment. I started on Rinvoq, a JAK inhibitor, that week.
And yes, they tried to prescribe me a round of Prednisone and a pound of topical steroids. I politely declined.
December 18, 2023
December 26, 2023
October 19, 2023
The flare I was anticipating arrived.
October 8, 2023
Skin cleared up enough to attend my sister’s wedding. Thank the heavens!
October 29, 2023
October 28, 2023
December 11, 2023
December 11, 2023
Months 7-9 Steroid Free
January | February | March
Treatment: Antihistamine, Moisture Withdrawal/ Limited Use of Moisturizers Rinvoq
Symptoms: itch, skin pain, enlarged lymph nodes, ooze, poor temperature regulation, insomnia
Pain Level: 7/10
Good news, bad news.
Good news, I got my hands and I started to draw on my iPad. Bad news, the flare moved to my upper torso, neck and chest. I still struggled with mobility but now, in a different way.
March 31, 2024
Until another flare-up
March 31, 2024
January 3, 2024
The painfully dry phase followed by…
January 1, 2024
RIP to my poor nipples
January 14, 2024
My giant lymph node friend
January 4, 2024
The ooze and insane itch phase
March 17, 2024
My face too
March 15, 2024
BUT! My hands have cleared <3
Months 10-12 Steroid Free
April | May | June
Treatment: Antihistamine, Rinvoq
Symptoms: enlarged lymph nodes, next-level ooze, skin pain, poor temperature regulation, insomnia
Pain Level: 7/10
While I was able to enjoy a few months of slight relief, crazy things began to happen. For one, I started oozing something horrible. I began to saturate my bedding and clothes. The smells… Anyways. The flares moved around my body. Some days were alright but at a moments notice, it could all change. I was referred to a new dermatologist and I want to share this encounter with you all because it’s so important because it shows how important it is to seek medical advice but still advocate for yourself.
Y’all this man wanted to put me on Rinvoq AND Dupixent… at the same time.
My spirit immediately said no. He then went on to prescribe Cyclosporin, a non steroid alternative I heard works wonders for fellow TSW warriors. My insurance is taking a while to approve this one so even as I write this now, I’m still on Rinvoq. Will keep ya updated!
April 19, 2024
An insane amount of ooze from scalp on pillow
April 19, 2024
May 10, 2024
Ugh, another rough one
April 24, 2024
The flare started to subside until…
May 14, 2024
Finally got a skin biopsy… diagnosis: something in the family of eczema
May 14, 2024
Skin flakes collected from my BRA
April 3, 2024
Meanwhile my eyes are not…
April 2, 2024
My legs are clear!
Apr 15, 2024
Went to hospital again
April 14, 2024
Brief intermission of clear skin followed by…
May 22, 2024
Just an average day of being a TSW warrior
May 17, 2024
More ooze… super painful when clothes dries to your skin like this
Months 13 Steroid Free
July (Present Day)
Treatment: Antihistamine, Rinvoq
Symptoms: enlarged lymph nodes, oozing still, skin pain, lots of skin flakes, poor temperature regulation, HORRIBLE insomnia
Pain Level: 7/10
As I continue healing, I know my journey is far from over and that’s okay.
One of the biggest lessons I’ve learned is the power of letting go. I desperately tried to control the narrative, the progression of TSW, the flares, faking normalcy and plastering on a smile. It wasn’t until I truly let go of my pride, vanity and idea of what my life should look like that I was able to come to terms and fully accept myself which in turn, I hope aids in healing.
I stopped seeing TSW as the “enemy”. It’s a horrible, heart-breaking condition that is the result of a modern medication and needs to be studied and formally recognized so treatment options can be available and accessible to all… BUT I’ve released my anger. My body is undoing years of topical steroid addiction and trying to self-regulate. My body is fighting for me. I can feel it. It’s ugly and it hurts but she’s fighting and she is strong.
I have a long road to recovery but I'm overwhelmed with a sense of closure and newfound purpose nonetheless.
Amidst all of the horror, I discovered a deep sense of faith and a connection to something bigger than my suffering. On my darkest of days, I found Jesus. His presence immediately became a beacon of hope I could cling to whenever I needed strength the most.
Upon climbing out of a deep depression, I felt a wave of creativity inspired by the very condition that plagues me. I began to draw again and found a way to release stress while creating skin positive drawings that illustrate the beauty of my real skin. Then, I started Lil Miss Eczema.
Side note: I’m not sure starting a business amidst TSW was the wisest decision… but here we are y’all.
As I embark on this new life path, I do so with a full heart. I’m grateful for this season of suffering because of the lessons I’ve learned along the way. I’m sure there are many more to come.
Dearest Reader, I hope you carry the spirit of resilience, self acceptance, and faith going forward knowing that however far you fall down, you will rise again.
I hope you can see and relate to the lil miss eczema inside of yourself.
Thank you for reading,
Love,
Liv
P.S. Will update soon xx