What the hell is topical steroid withdrawal?! A million questions are probably running through your mind right now.
But take a deep breath before we start because this is going to be a wild ride.
Inhale.
Exhale.
Did you actually do it?
Alright, let’s go!
When your skin and body become so dependent on steroid creams to heal and repair the skin barrier, it forgets how to do it on it’s own.
Think of it as when someone goes through withdrawal symptoms from cutting out caffeine, sugar, alcohol, and other drugs.
Your body has become so dependent on it that when you stop, your body doesn’t know what to do.
It can’t function without it.
At this point, it shouldn’t even be considered eczema or atopic dermatitis anymore.
As defined by the National Eczema Association:
” Topical corticosteroids withdrawal (called “topical steroid addiction” or “red skin syndrome”) appears to be a clinical adverse effect that can occur when topical corticosteroids are inappropriately used or overused, then stopped. It can result from prolonged, frequent, and inappropriate use of moderate to high potency topical corticosteroids, especially on the face and genital area, but is not limited to these criteria”.
It’s interesting to see that the definition itself, lists some of the reasons as being “inappropriately” overused, prolonged, and frequent use of it.
How is someone not supposed to overuse it when this is the only option that’s shoved in my face.
I think that quote needs to be tweaked and say “inappropriately and over prescribed”. That sounds better!
Eczema warriors, to my knowledge, are rarely warned of the adverse effects.
It is up to us to read the fine print and the medical terms to be aware.
This is a beast of its own but don’t worry, I got your back.
How Do I Know If I Have Topical Steroid Withdrawal?
The quickest way to find out is to stop using these medications and see how your skin reacts without using them.
If your rashes become much worse than your initial eczema rashes, then it’s highly likely you have topical steroid withdrawal.
If you experience other symptoms below, that’s also another indication that you have topical steroid withdrawal.
But if you’ve used them for so long and realized that it never goes away, it just becomes more pink and red no matter what, unfortunately, and fortunately, you probably have topical steroid withdrawal.
For me, my entire face had an eczema like rash. It was peeling, flaking, oozing, red, itchy and sore.
Because I used topical steroids on other parts of my body, it spread there too.
Some Medical Professionals will completely dismiss you.
Be strong and find another Medical Professional who will listen to you, understand what you are saying and work with you.
Seek out other types of Health Professionals like a Naturopath, a Holistic Nutritionist or a Skin Health Coach whose had eczema and topical steroid withdrawals.
Symptoms of Topical Steroid Withdrawal
Below is a list of the main symptoms you will encounter on your topical steroid withdrawal journey.
You may not experience all of them, but it’s better to be aware and ready for them.
If you embark on this journey to break free from steroid creams, it is important to work with your family doctor, a naturopathic doctor, and even a skin health coach (preferably someone who had eczema and or has gone through topical steroid withdrawal).
They will be able to guide you through the mental and physical challenges you will face.
They will also be able to support your journey by recommending healing foods, lifestyle changes and key supplements while being there for emotional support.
Please refer to The International Topical Steroid Addiction Network’s (ITSAN) website for an in-depth explanation of the medical science behind topical steroid withdrawal and the effects it has on the human body.
I will provide my experience with each symptom and how I dealt with them.
1. Skin flushing bright red, resembling a sunburn
This is one of the first symptoms you will notice the minute you stop using the steroid/hydro-cortisone creams.
However, as you start the healing process internally, the redness will start to fade.
In the early stages, they key is to focus on providing your body with vitamins and minerals to heal.
The best way to do this? Start eating a whole foods diet.
More fresh/cooked/steam veggies and fruits. Less packaged, processed, fast foods.
Fake foods cause more inflammation which will delay your healing.
Later in your recovery process, start using Bentonite Clay to help your skin heal. You can read more about it here and how I used it.
Give your skin time to repair itself on its own through your diet plan.
Check out the diet plan I followed with the help of a Naturopathic Doctor.
If you need help with any of this, please check out my coaching program.
2. Visible and measurable flaking of skin – appears to be ‘snowing’
You will most likely experience this from head to toe. Don’t try to stop this process.
This is your body continuously shedding the affected skin.
To help yourself with this, moisturize using natural products like virgin coconut oil, jojoba oil, or body balms.
Stay away from creams/lotions that you can find at your local pharmacy.
Try to find the natural section of the pharmacy if they have one or buy them online!
The reason is, that almost all creams at your local pharmacy are filled with toxins, filler chemicals and fragrances.
You want to minimize your exposure to these types of toxins, especially while you heal.
These synthetic chemicals are easily absorbed into your skin and then into your bloodstream. Once again, delaying your healing.
3. Skin cycling between oozing, swelling, burning, and flaking
This is probably one of the worst symptoms to deal with.
However, if I was more prepared for it, the oozing, swelling, burning, and flaking may have not lasted as long.
My skin was primarily oozing on my hands and feet.
My skin did ooze on my face and neck as well but all I could do was let it dry out using a fan and ice.
To deal with the oozing on my feet, I started soaking my feet in apple cider vinegar (ACV).
Keep in mind that it will sting a lot but it definitely kept the oozing and bacteria from getting worse.
If you are up for it, try taking a dead sea salt bath.
It’s definitely going to sting bad because of all the open wounds.
Dead sea salt is very healing for skin due to its mineral composition.
Definitely add a little bit to your bath at first and then work your way up.
4. Red sleeves: (arms/legs become red and inflamed, sparing palms/soles)
Depending on where you applied the steroid cream the most is where you will experience this.
My face, neck, and below my elbows are where I experienced redness.
Again, there was not much I could do to control the redness other than letting my body heal internally and focusing on my diet, supplements, and time.
You could apply things like jojoba oil or a calendula based ointment to help soothe the irritation while the body does its thing.
5. Thermoregulation altered (feeling too cold or too hot)
I was constantly feeling cold after I started the withdrawal process.
All I can suggest here is to layer up even though it is uncomfortable when your skin is constantly irritated or oozing.
When you do sleep try to have a portable heater in your room to help and even use two blankets, which is what I did. I even used a heating pad on my back to keep me warm.
6. Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.
As a person who loved to take long warm/hot showers, I started to hate taking showers.
As soon as my skin touched the water, I would be extremely itchy for about 20-30 minutes.
It was important to shower to keep my skin clean and not let the bacteria spread.
After I finished showering, I took a natural anti-histamine such as quercetin, blasted the fan my way to cool myself, used ice, and tried to distract myself from playing video games.
Video games helped me focus on something other than my skin and the itching.
If you can’t stand to take a shower or bath, try washing yourself down with a towel or wet wipes.
You also don’t want to shower every day and strip away your skin’s natural oils.
If possible, try not showering for a few days, give your skin a break.
Try not to use any soap either, it can aggravate your sensitive skin.
7. Enlarged lymph nodes
Due to the enlarged lymph nodes, you will have swelling in certain areas.
For me, it was mainly on my face, hands, and feet and my armpits. This too will take time and slowly decrease as you start healing.
Once your skin is at a stable stage where you feel comfortable getting a massage, I highly recommend getting a Manual Lymphatic Drainage (MLD) massage.
This massage focuses on helping your body detox by engaging the lymphatic system to flush out the toxins.
Your lymphatic system becomes clogged or backed up during topical steroid withdrawal.
The only way to get your lymphatic system moving is manually.
Through movement such as walking or skin brushing (which I do not recommend at this stage).
So it’s important to try and go for small walks (which can be hard with topical steroid withdrawal) and drink lots of water to help your body flush the toxins out.
If you have benefits from your employer, it’s possible that you can get your insurance to cover it.
8. Skin atrophy (often manifesting as “elephant wrinkles“)
My skin is still recovering from the wrinkles caused by topical steroid withdrawal.
This mainly appeared on my face, neck, and hands but is slowly getting back to normal.
Bentonite clay is definitely speeding up the healing process for me.
9. Hair loss: (head and/or body)
I did experience hair loss the first time I unknowingly went through topical steroid withdrawal.
Unfortunately, there is not much you can do. Don’t worry though, it will grow back as your body heals!
10. Insomnia and altered body clock
Resting as much as you can is key to healing topical steroid withdrawal but it is actually extremely hard to sleep because you are constantly itching. It took me hours to fall asleep no matter how tired I was.
With all the symptoms above and below, it can be extremely hard to fall asleep which leads to insomnia.
I tried taking strong antihistamines for the drowsiness, melatonin, valerian root, sleepy tea and even diffused aromatherapy.
My doctor even prescribed me sleeping pills (which I didn’t end up taking).
I was prescribed a higher dosage of Reactine, which didn’t work.
Atarax, a much stronger medication was also prescribed to me but that barely worked.
My sleeping patterns were changing dramatically. I ended up falling asleep after 8 am/9 am and waking up at 5/6 pm.
Don’t worry too much about this because it is more important to fall asleep than worrying about what time you sleep/wake up.
Just make sure to sleep anytime you feel like sleeping. If you need some help falling asleep, check out my post on sleeping tips.
11. Appetite changes
Some days you will feel like eating a lot and some days you’ll barely eat much and just want to stay in bed.
However, try to still eat when you can and make sure it is as nutritious as possible.
This is what your body will use to help heal itself. I do recommend taking supplements to help with the topical steroid withdrawal process. I’d recommend starting off with Vitamin C, D, and Omega 3/6/9.
I incorporated this much late into TSW recovery and wish I started it earlier.
It would have definitely helped me heal quicker.
12. Fatigue
Because your body is going through withdrawal symptoms, it is actually very tiring.
Your body and mind are a mess right now which is draining your energy.
This is why sleeping and having a nutritious diet are key to giving you the energy you need to recover.
13. Emotional fluctuations, depression, anxiety
Only looking back on this is when I realized TSW also messed with my mind.
There were numerous times I snapped at my parents for small things or didn’t feel like talking to anyone.
I am grateful and thankful for my parents helping me every step of the way regardless of how moody I was.
They knew how hard it was going through this.
Just be aware that you will experience this so don’t be too hard on yourself. It’s not you!
I hope this can help you in some way while you recover from TSW and Eczema.
Please take a look through the rest of my other posts if you are struggling with eczema and TSW.
How Long Does Topical Steroid Withdrawal Last?
This depends on person to person. It also depends on how frequent and how long you used them.
It also depends on what you are doing to help your body heal.
Don’t have the mindset that nothing will help and you have to wait it out.
I’ve seen people who have been dealing with it for years!
For some, it may take that long, but there is always something you can do to speed up the healing process.
Work on your nutrition. Work on your mindset. Give your body and mind, time and space it’s asking for.
Does Topical Steroid Withdrawal Go Away?
Yes! I’ve gone through it myself.
Struggled for months.
It was pure agony. But, after working hard and being patient, I’m 100x better now.
I don’t use any prescribed topical steroids what. so. ever.
I do have my occasional flares up. But I know how to manage it without prescription medications.
What Helps With Steroid Cream Withdrawal?
Now we are talking! I’m glad you are thinking of this questions.
To start, this is an excellent opportunity to revamp your nutrition.
Eating whole foods and a predominantly plant-based diet will support your healing journey.
The vitamins and minerals you get from eating whole cooked foods will help your body heal from the inside and your skin.
When your diet and lifestyle revolves too much around processed and packaged foods, you are not providing the body with the building blocks it needs to repair.
On your skin, you use products like Jojoba Oil or a Calendula based ointment.
Try to shift away from creams and lotions from your local pharmacy.
These tend to have fragrances, added chemicals, fillers and additives to create the consistency and look of the product.
These extra crap are not beneficial to our bodies in anyway.
Rule of thumb is finding products where you can understand the ingredients or having the least amount of ingredients.
If you see an essay on the back of the bottle…run like in the movie “Get Out”!
So Where Should I Start?
Based on my experience and experimentation, there are so many alternatives, therapies, supplements, and creams to try when dealing with topical steroid withdrawal.
It can be hard to figure out what is worth your time and money.
In my opinion, I would start with a healthy diet with zero to minimally processed foods.
When your body is going through TSW, this is the time your body needs every vitamin and mineral it can get to repair and heal.
When it comes to supplements, start with Vitamin C, D, and your Omegas.
It takes some time when to take a natural approach to see results.
However, as you stick to it, things will start to snowball and you will see improvements!
If you can take some time off work, take a sick leave and get some government assistance, I highly recommend that.
I was in no shape to work during TSW so I took a sick leave and applied for unemployment benefits.
Mental and physical rest is another key piece to healing from TSW.
I understand what you are going through on a physical, mental, and emotional level.
I’ve walked your painful journey and healed myself. I want to help you too.
Sometimes, all you need is a little bit of guidance, coaching, and support.
So if you are embarking on the journey to heal your eczema naturally or going through topical steroid withdrawal, please Book a 30min Free Consultation with me to learn more about the XZMA Healing Program.