Coping with TSW

If you or a loved one are going through TSW, it may feel overwhelming to navigate the many treatment options found online. At times, advice can even feel conflicting or confusing. Although there is some good research happening on TSW, there is not yet a trick or treatment that helps everyone all the time. It is our hope that, in the future, physicians will have better tools at their disposal to find answers and provide greater comfort to those who suffer.

That said, we have looked at trends from several thousand ITSAN forum members who have suffered or are suffering with TSW. The purpose of this page is to share some coping mechanisms that have proven effective for many.

If you’re looking for ways to manage symptoms, TSW Assist provides a database of routines, products, and therapies recommended by people going through TSW.

Note: TSW Assist is not a hospital or a medical clinic. This website contains crowdsourced anecdotal solutions and should not be confused with medical advice.

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What to Expect

Here’s what to expect if you make the decision to withdraw from topical steroids.

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Dealing with the Itch

The urge to scratch can be powerful when going through Topical Steroid Withdrawal. What can be done about the intense itching?

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Survival Kit

Recommendations, tips and tricks from TSW veterans to help you through Topical Steroid Withdrawal.

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What to Expect

Before stopping topical steroid treatment

Work with a physician to avoid additional adverse effects.

Patients should work with a physician on a plan for stopping use of topical steroids. Having a plan in place will help you feel prepared and will help prevent unintended consequences.

For instance, prolonged exposure to topical steroids on large areas of the body may cause certain individuals to develop adrenal suppression, hypothalamic-pituitary-adrenal (HPA) axis suppression or other adrenal symptoms. Stopping topical steroids when the adrenal gland is severely depressed can be life threatening. An ACTH test, usually performed by an endocrinologist, can rule out these conditions. Stopping long term use of oral, injected, or inhaled steroids is NEVER recommended, unless under the direction of a doctor.

Make a plan around work and school.

Going through Topical Steroid Withdrawal may require taking time off to recover. In some cases, folks need to take a week here and there. In other cases, an extended period of time off may be warranted.

If you work, consider proactively talking to your manager about TSW and accommodations that could be made (for example, perhaps working remotely is an option). You may also want to plan for time off work by looking into options for a leave of absence. If you are a parent or caregiver of someone going through TSW, you may need to take extended leave via the Family and Medical Leave Act (FMLA). If you are a parent or caregiver and you have TSW yourself, you may need to make arrangements for an alternate caregiver to take your place as you recover.

College students may want to take a few semesters off or opt to take online courses until the later stages of recovery. For children and teenagers, it may be necessary to arrange for homeschooling or tutoring to allow for flexibility. In the United States, parents may be able to make a 504 plan which allows for adjustments and accommodations to a child’s education. Expect that work, responsibilities, and regular routines will need to shift so that you can recover.

Creating a plan in advance will alleviate the stress of last minute negotiations during a debilitating flare.

During topical steroid withdrawal

Recuperating from TSW is often protracted and incapacitating. Many people experience painful symptoms and become covered in a full body rash or flushing that can last for weeks or months before clearing. Some have symptoms that are cyclical, while others experience an ongoing flare until recovery. Many are not able to participate in normal activities for many months. Work, school, and family life are often disrupted by the symptoms of TSW and the appearance/sensitivity of the skin may also affect the desire to leave the house.

The most important thing to remember is that the body is going through a very intense healing process. Simplifying and arranging a less stressful schedule can be very beneficial and, in many cases, necessary. During this time, it is important to care for your physical and mental health.

A supportive doctor can help navigate infection prevention, pain and itch management, anxiety therapies, and other modalities, as needed.

Recovery timelines

Unfortunately, we do not yet have a clear timeline as recovery is individual, protracted, and not well understood. Some who used topical steroids a short time may have an extended withdrawal, while others who used a relatively long time may have a shorter withdrawal.

In general, it is believed that the length of time topical steroids were used, the potency of the topical steroids, where the topical steroids were applied, and continuous use have some bearing on withdrawal patterns. Some areas of the body (such as the eyelids, face, and genitals) absorb at higher levels. A history of oral or injected corticosteroids, such as prednisone, may also affect how long it takes to recover.

Because of these variables, it is difficult to say exactly how long it will take to make a full recovery. Most people experience vast improvement within 12 to 24 months, while some require longer or shorter periods of time to fully recover. Exact recovery time is completely individual and nearly impossible to predict.

Frequently Asked Questions

What are the most common symptoms of Topical Steroid Withdrawal (TSW)?

These symptoms occur during withdrawal from topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur, or may not occur at all. You might experience some of these symptoms throughout the entire time or only during flares.

What is a flare?

During a flare, your skin may experience an increase in the following: redness, sensitivity, intense itchiness, hives, cracking, swelling, or oozing. Your symptoms may continue to increase in severity for a period of time. Your skin may also seem stuck in a “holding pattern” of damaged skin or at a plateau without improvement for a period of time.

Flares can last anywhere from a few days to several months. When a flare eventually subsides and you enter a “break”, the skin becomes dry and flaky and you may shed a lot of dead skin. During a break, your skin may also feel tight, like plastic, or very rough. The redness may decrease in some places and oozing may decrease as well. You may be somewhat less itchy during a break.

The cycle of flares followed by breaks usually occurs many times until you are fully recovered. You may notice a pattern to the flare/break cycle. For example, skin may ooze during a flare, then become flaky and dry during a break. Some people may never have a true break and experience long-term symptoms until fully healed.

Can I have withdrawal on only one part of my body?

Yes. This is especially true with use on the face, or in the case of caregivers applying topical steroids to another person without washing their hands afterwards. It is also common for people to have widespread withdrawal symptoms, despite using only a small amount of topical steroids on a small area of the body.

Are my allergies getting worse? Are elevated lgE levels normal during TSW?

Elevated IgE and eosinophils are normal during TSW and levels typically return to normal gradually with recovery. However, it is important to rule out other causes for elevated IgE and eosinophils with your doctor. Elevated IgE levels can alter the accuracy of RAST tests (allergy test done with a blood sample), and the extreme redness and sensitivity of the skin during TSW can cause skin prick allergy testing to be inaccurate or impossible. For these reasons, allergy testing during Topical Steroid Withdrawal may not be valuable.

The following may explain the link between topical steroid use and elevated IgE levels:

“The therapy by corticosteroids influences the production of IgE, that is one of the key markers of the atopic diseases. Thus, therapy of patients with atopic dermatitis by topical corticosteroids within two weeks resulted in the elevation of spontaneous production of IgE by B-cells in vitro. The experiment has showed that corticosteroids are able to induce IgE production by B-lymphocytes when added to a culture in vitro. A synergy of IL-4 and corticosteroids in induction by B-cells of IgE production plays, probably, some role in the influence of corticosteroids on the course of atopic diseases.”

Source:“Prevalence of atopic diseases and the use of topical corticosteroids. Is there any connection?” Alexander N. Pampura, Medical Hypotheses, 2005;64(3):575-8.

Will I have eczema after I’ve recovered from TSW?

This depends on how much of your condition was steroid-induced. It is possible to recover from TSW and have no remaining eczema. It is also possible to recover from TSW and still have eczema or other skin conditions. Topical Steroid Withdrawal should not be mistakenly designated as a “cure” or treatment for healing underlying eczema. The majority of our forum members report that the state of their skin after withdrawal is preferable to the state of their skin while on topical steroid treatment, even if some of their underlying eczema remains unresolved. Post TSW, the affected skin is typically no longer full-body, and the itching of eczema is more manageable than the burning and pain experienced while on treatment. It is important to remember that topical steroids do not cure eczema — topical steroids suppress inflammation, giving the impression that eczema has “gone away.”

Will getting some sun help? What about UVB light therapy?

Sun is not promised to speed healing but is often found to help. It is only recommended for those in the later stages of TSW after flares have stopped, and when the skin is dry, thicker, and not pink or red. You must be careful to avoid getting too much sun or getting too hot. Start with a short amount of time (10 minutes or less) in the morning. This will also help to balance cortisol levels which are often out of whack in those with TSW. Cool sun is recommended. Narrowband UVB light therapy (phototherapy) has also proven helpful for members in the later stages of TSW, but is not recommended for those in the early stages of withdrawal.

Is it normal to feel panicked or anxious?

Many of those in withdrawal have felt or feel this way. It is a difficult, uncertain, and long process that involves the largest organ of the body – the skin. It affects everything from one’s appearance to the ability to function normally. Having a good support system with family and friends is vital. You can also find a lot of support through the ITSAN forum on Facebook. Speaking with a counselor can also be beneficial and is suggested immediately if you feel depressed or suicidal.

Dealing with The Itch

The itch is often the worst symptom for many people, because it is constant and impossible to satisfy. ITSAN co-founder Kelly Palace, a former TSW sufferer describes her experience:

For me, itching has been the worst symptom in my recovery from Topical Steroid Withdrawal. It has brought me to my knees crying, praying, begging it to stop. The itching was so bad at one point that I bought medical protective ‘mitts’ (similar to boxing gloves) and had my husband cinch me in the gloves at night so I could not scratch. I ‘won’ every night by getting the gloves off in my sleep and violently scratching. The itch has made me wish I was dead. There were times when I itched 24 hours a day.

Healing from TSW is the only thing that truly takes the itch away, but there are ways to manage it.

What causes such an intense itch?

The neurological phenomenon of itch is incredibly complex. In the case of TSW, it is believed that the itch is caused by blood vessels and nerve endings of the skin beginning to regain proper function. Topical steroids cause the tiny blood vessels of the skin to shrink, or vasoconstrict, which relieves the discomfort of inflammation. When the body becomes resistant to treatment, the blood vessels widen, or vasodilate, causing the skin to flush and painfully burn and itch. Much like recovering from an extreme sunburn, the flushing, burning redness crosses over to tight, peeling skin. As the capillaries of the skin recover during TSW, many describe a deep, general, systemic itch.

“The itch experienced during Topical Steroid Withdrawal is different from the itch experienced by a person with eczema. This is a deep, healing itch. Thinking of the itch as a step in the healing process may help with acceptance and understanding that it will pass.” – Kelly Palace, ITSAN founder and healed TSW Warrior

Will the itch ever stop?

Yes, but it takes time. The itch becomes more tolerable at different stages of the withdrawal process. Some have reported that the itch is not as intense in the later months, when compared to the first few months of withdrawal. The itch may also become less widespread, concentrating in a few “trouble areas” instead of across the whole body.

Should I limit scratching?

You will probably not be able to eliminate scratching but it can be helpful to practice mindful scratching. For example, when you start scratching, make each stroke a bit lighter until you stop. Some also use “safe scratchers” which we talk more about below.

The rule of thumb is to try not to do more damage to skin as open wounds can lead to a skin infection. Another risk of scratching is exacerbating oozing and pain. However, it’s important to remember that the itch is so intense that you may not have much of a choice. You may even scratch in your sleep. Don’t beat yourself up for scratching — you will still heal!

Safe scratch plan

Here are some tips that you may want to incorporate into a “safe scratch” plan:

Survival Guide

The purpose of this survival guide is to share tips that have helped veterans who have been or who are going through Topical Steroid Withdrawal Syndrome. This is not to be taken as medical advice, just the personal experiences of other people who have been there. We still don’t know what can help speed up the withdrawal process, but these suggestions might help you keep as comfortable and healthy as possible during the process. Not everything will help everyone. Everyone’s skin is different and there is no one thing or one product for everyone. Listen to your body and use what you find helps you the most. What one may love to use, another can not tolerate so spot test everything to avoid a full body irritation. ITSAN highly recommends all TSWS sufferers find a supportive doctor to help them through the withdrawal process.

1. Moisturizers. Some people cannot tolerate any moisturizer during withdrawal – especially in certain stages of withdrawal, but here are the moisturizers many of our forum members like to use. Please spot test everything to make sure the skin can tolerate the moisturizers or soaps and remember to only try one new thing at a time. Also note that the skin may accept something for a while and then become irritated at another stage of withdrawal when the same product is applied. Most people find emollients, ointments or balms made with simple ingredients to be more comfortable than creams or lotions.

Ointments and Balms

Vaseline
Lemongrass Balm and Zinc Balm (available on Etsy from The Home Apothecary)
Jojoba oil
Hemp oil
Coconut oil
Sunflower oil
Palm shortening
Egyptian magic (often available at Costco)
Zinc oxide (Desitin)
Sudocrem
Castor oil
Bee all natural products
Medicine Mama’s Bee Magic
Manuka honey ( a natural anti-bacterial)
Shea butter
Renew lotion
Olive oil
Avocado oil
Beef tallow
Theraplex Emollient or Barrier Balm
Balmond’s Skin Salvation

Soaps and Shampoos

Switch to non-detergent soaps and shampoos
Dr. Bronner’s mild baby soap
“Free and Clear” Shampoo and Conditioner (by Vanicream)
Vanicream Bar Soap
Vanicream Liquid hand soap
Shea butter soap bars
Olive oil soap bars
African black soap
Dove
Aveeno oatmeal soap
Burt’s Bees baby wash
Coconut-based soaps (Kirk’s)
Apple Valley natural soap and shampoo bars
Apple cider vinegar can also be used as a hair wash

2. Baths. The skin can be so sensitive during TSW, some members can not tolerate being submerged in water, and instead prefer sponge baths or using wipes for personal cleansing. For those who get comfort from the tub, the following products can be added to the bath water. Be prepared to discontinue any of these measures if they cause further irritation or discomfort.

To prevent infection

Apple cider vinegar – Bragg Organic Apple Cider vinegar is especially recommended: 1/2 cup to a full tub, as needed. Adjust amount of vinegar as tolerated.
Bleach baths: 1/2 cup plain, household bleach to full tub of water, 1-2 times weekly

To soothe or relieve itch

To help moisturize

3. Wraps after moisturizer and baths. Some members find relief from wrapping after bathing and moisturizing. Wraps (gauze and tape) are a great way to lock in the moisturizer and protect the skin while it heals. Other members find relief from dry wrapping. The pressure on the skin can sometimes distract you from the itch or help keep you from scratching.

Suggested Wraps:

Regular gauze and medical tape
Tubular support bandages
Viscopaste bandages
Taping socks on feet or hands
Cotton or other types of thin gloves
Ballet tights

4. Antibacterial ointments. Antibacterial ointments (such as neosporin) may help if superficial infection is suspected. Some people have also used colloidal silver sprays and certain essential oils to help prevent infection. NOTE: All serious infections should be checked by a doctor. Cellulitis can occur when bacteria gets under the skin and this can be very dangerous if not treated. Prolonged use of topical antibiotics, especially on large areas, is not recommended as this can produce antibiotic-resistant infections.

5. Laundry. It is important to select a laundry soap that will not irritated the skin. It is also recommended to cycle your washing machine with vinegar or bleach to prevent bacteria from growing.

Non-detergent laundry soap

Soap nuts
Non-detergent soaps

Unscented dye-free detergents

6. Vacuum. A good vacuum for clean up of shedding skin flakes. It may be helpful to have a small vacuum on hand just for this purpose, whether for use around the house or directly on sheets. Laundering sheets can be difficult if skin flakes are not vacuumed prior to laundering. Spare sets of cotton sheets make it easier to change your bed often.

7. Cotton clothes. 100% cotton comfy clothes. Some recommendations:

Eczema pajamas are very comfortable and they have mitten and feet covered to help prevent scratching, available at www.eczemaclothing.com
Hanna Anderson has a lot of organic 100% cotton clothes for adults and children.
Carters and The Children’s Place have nice 100% cotton clothes for children too.

8. Soft towels. Towels and wash cloths for bath time. Some even like to use a slightly damp wash cloth in bed to wipe or rub skin as itching arises at night.

9. Blankets. Comfortable, warm blankets. Many people report feeling cold or chilled during TSWS. This can be due to the skin losing heat during periods of flushing and heat loss. Altered thermoregulation can also be due to adrenal suppression caused by previous steroid use. Chills can also be caused by infection. It is important to have appropriate lab work done to rule out adrenal suppression or infection as a cause for the chills.

10. Cool. Many find comfort by keeping their cool and avoiding hot environments. Smoothies, popsicles and ice cubes are a nice cool treat that seems to cool the skin from the inside out. Ice packs are an essential everyday item for many. Lots and lots of ice packs to help relieve itch and a cooler bag to keep ice packs cool when you leave the house.

11. Heat. A heating pad is helpful for aches and pains, and can be used to distract the nerves from the itch. Hot water bottles work well for this too. Some people find the heat of a bath or shower to be more soothing than cool temperatures.

12. Medications and supplements. Consider discussing these with your doctor:

Medications

Supplements

13. UV or sun. UV therapy or sun exposure can be helpful in the later stages of TSW when the skin is no longer hot and red. If getting sun, cooler sun in the early morning or early evening is best. When skin is no longer full body flushing, weeping, or open, prescription phototherapy (narrowband UVB light therapy) can be a good option to deal with itching and patchy skin.

14. Patch testing. Patch testing the skin by dermatologist trained specifically to conduct contact dermatitis patch testing can help determine possible allergens or triggers that may be causing the skin to react. Note: This test requires the skin of the back to be steroid-free and clear prior to testing.

15. Essential oils. Some members have found using essential oils to be helpful, especially for relaxing aromatherapy. Some oils are meant only for aromatherapy. It is important to consult a certified aromatherapist prior to use on the skin, as certain oils are considered “warm oils” and may burn the skin. All oils used on the skin should be therapeutic grade, used in proper dilution with a carrier, and patch tested prior to use.

16. Domeboro. Domeboro Solution mixed with water and kept in the refrigerator can help sooth the ooze and burn. It can also help dry the itch or oozing. Caladryl can also help with minor itch and oozing.

17. Avoid triggers. Some members note that certain dietary or environmental factors make their itching and flaring worse. Discovering which triggers to avoid is individual and often done by trial and error. The most common dietary triggers reported by members include: sugar, alcohol, chocolate, nuts, eggs, gluten, and dairy. The most common environmental triggers include: pets, dust, grasses, pollen, and certain chemicals found in personal care or household products.

18. Car kit. It seems like the car is a place that often brings out the itch, especially for the kids. Being hot in a car seat or just being bored is not fun. Have plenty of things to keep your kids busy in the car, such as an iPad, video games, books, Legos, coloring books and snacks. Ice packs can also be very helpful in the car.

19. Hands. Keep your hands busy. iPad, reading, movies, video games whatever you enjoy that will keep your mind and hands busy during the itch will help.

20. Leave guilt at the door. Some individuals experience feelings of guilt for not being their best self during withdrawal, or believing that they brought the problem on themselves. Some parents have feelings of guilt, believing that by using steroids on their child they are somehow responsible for their TSWS symptoms. These feelings of guilt are understandable, but unwarranted. TSWS symptoms is only just starting to be recognized by the medical community. This is a learning process for all of us as patients and doctors.

21. Depression. Topical Steroid Withdrawal Syndrome is very hard on everyone involved. If you feel depressed, please search out a good therapist or support system that can help you during withdrawal, and possibly even afterwards to deal with what many veterans describe as PTSD post-recovery aftermath.

22. Support groups. Use the ITSAN support group! Bond with others going through TSW Syndrome. The people going through it get what you are going through and are very supportive and loving, so take advantage of the private Facebook support groups.

23. Expect the unexpected. Flares can come out of nowhere for no known reason. A terrible day can be followed by a period of calm and comfort. And just when you think you may be getting through it, a late stage flare can knock you off your feet. Topical Steroid Withdrawal Syndrome is a roller coaster ride so be prepared for a lot of ups and downs.

This information is provided as a service to patients and parents of patients who have TSW Syndrome. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither ITSAN, its Board of Directors, nor support group members and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with TSW Syndrome should be discussed with a physician experienced in the treatment of TSW Syndrome.

Coping with TSW

What to Expect

Dealing with the Itch

Survival Kit

What to Expect

Before stopping topical steroid treatment

During topical steroid withdrawal

Recovery timelines

Frequently Asked Questions

Dealing with The Itch

Survival Guide

Help support ITSAN

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Coping with TSW

What to Expect

Before stopping topical steroid treatment

During topical steroid withdrawal

Recovery timelines

Frequently Asked Questions

Dealing with The Itch

Survival Guide

Help support ITSAN

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