Coping with RSS
This page is for people going through topical steroid withdrawal and is based on the experience of several thousand ITSAN forum members. These are trends and observations pulled directly from the experiences of those who have suffered or are suffering through withdrawal. Unfortunately there are no absolutes or works every-time-tricks. 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.
What to Expect
Before stopping topical steroid treatment
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.
Going through RSS may require taking time off to recover. If you work, 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 RSS, you may need to take extended leave via the Family and Medical Leave Act (FMLA). 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.
Creating a plan in advance will alleviate the stress of finding last minute childcare or negotiating time off from work or school during a debilitating flare.
During topical steroid withdrawal (TSW)
Recuperating from RSS is often extended 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. Most have symptoms that are cyclical until the skin makes a full recovery. Some may not be able to participate in normal activities for many months. Work, school, and family life will be disrupted by extreme fatigue, itching and burning skin, and an erratic sleep schedule or insomnia. The appearance of the skin may also affect the desire to be seen in public.
The most important thing to remember is that the body is going through a very intense healing process. Arranging a less stressful schedule can be very beneficial and, in many cases, necessary. A supportive doctor can help navigate: infection prevention, pain and itch management, anxiety therapies, and use of immunosuppressants, as indicated.
The recovery time frame 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 when topicals are applied. 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
- Red, burning skin: Topical steroids work by constricting the blood vessels. Once you stop using topical steroids, the affected blood vessels become “wide open” and inflamed, creating red flushing and a burning sensation. This typically appears within a week after stopping topical steroids but has been known to happen later on. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is a “red sleeve” that covers the arms and legs stops at the wrist and ankles, sparing the palms of the hands and soles of the feet. It might take weeks for the red sleeve arm/white palm to appear as the redness spreads.
- Raw, painful skin: It may feel like a bad sunburn and may be sensitive to even the lightest touch.
- Eczema-like rashes: These rashes may spread from an area of skin that was originally affected by eczema or happen anywhere on your body. You may experience hives, very, very dry skin that has the look and feel of plastic, itchy skin, deep cracks, or tiny cuts in the skin, even in areas where topical steroids were never used. The skin is one organ, so when one area is medicated, it can affect all of your skin.
- Edema: Swollen skin or swollen body parts containing fluid. Hands and feet often swell during TSW.
- Oozing skin: Ooze or serous exudate from the blood vessels may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried. This is not the body “detoxing” but a leakage from the blood vessels due to their dilation. It is important to have your doctor differentiate the serous exudate crust from skin infections such as staph, MRSA or impetigo. Please seek medical care when in doubt.
- Itchy skin: The itch is unbelievably intense and feels like it originates under the skin. There are thousands of nerve endings in each square inch of skin. The recovery process may cause symptoms described as pins and needles, numbness, pin pokes, zingers, sparklers, ants crawling, bee stings, jolts and moderate to intense skin pain.
- Shedding or flaking skin: Many people find that they shed a lot of dry skin flakes. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.
- Difficulty regulating body temperature: You may experience freezing hands, feet, or body and often get the chills; or you may feel very hot. Feeling chilled can be due to the skin losing heat during periods of flushing and redness. Cold intolerance 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.
- Enlarged lymph nodes: These are felt as lumps under the skin and can be in the neck, armpits, groin, behind the knees or around the ribs. The lymph system helps filter harmful pathogens, cancerous cells, cellular waste, and dead cells. Although swollen lymph nodes are common during RSS, the potential for lymph nodes of an infectious or malignant origin should be discussed and ruled out by your doctor.
- Thinning hair: Some sufferers find that they get bald or missing patches of hair on their heads or their eyebrows. This grows back as recovery progresses.
- Eye irritation: Dryness, redness, soreness, photosensitivity, occasional blurry vision and excess mucus may be present during RSS. Have your eyes thoroughly examined by an optometrist, especially if you have put topical steroids on your eyelids or near the eye in the past.
- Decreased energy levels: Exhaustion, fatigue and burnout are very common symptoms during withdrawal.
- Difficulty sleeping: Insomnia or difficulty maintaining a normal sleep schedule are normal during TSW. A doctor can help you manage this symptom.
- Change in appetite: Loss of appetite with weight loss, or increased appetite with weight gain are typical during recovery.
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 milder, long-term symptoms until fully healed.
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.”
Dealing with The Itch
The itch is often the worst symptom for many people, because it is constant and impossible to satisfy. Kelly Palace, a former 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 Topical Steroid Addiction is the only thing that truly takes the itch away, but there are ways to manage it.
Palace states, “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.”
Although you will need to scratch, you must do so carefully. It is extremely important that you do not do more damage to skin and set yourself back further with open wounds or a skin infection. Another risk of scratching with your nails is deformation of fingernails caused by scratching too much or too hard. It can also make your skin hurt or feel sore, which can be difficult to cope with when your skin is already very tight, dry, and painful.
“Over a year with lots of scratching, I never had a skin infection and rarely broke my skin open,” says Palace. “I came up with a safe way to scratch – I used a rubber comb. It does not break the skin but relieves the itch. I washed the comb with soap and hot water, then sterilized it with alcohol. I did this each morning and each night, so I wouldn’t get an infection. Before I picked up the comb, I would say, ‘Gentle, gentle, gentle!’ just to remind myself I am only trying to relieve the itch, not gouge a hole in my skin.”
- Be mindful of scratching. Have a plan to stop before you are out of control. Sometimes scratching becomes a habit, so be mindful!
- Have a STOP pose. “Mine is pulling my hands off my body in the ‘prayer’ position. Then I count to 60 to see if I can stop scratching for 60 seconds. Usually if I can refrain for 60 seconds, I have won,” Palace comments. “Sit on your hands until you feel more in control of the scratching, or cross your arms across your body and tuck your hands under your armpits.”
- Realize the more you scratch, the more you itch. Scratching releases histamine, which cause itch. This is why you can start by scratching an itch on your ankle, then end up “chasing the itch” all over your body.
- Have an anti-scratch mantra, like “Be gentle!” or “This will pass. I am healing. This will pass.” Palace suggests, “I would chant – sometimes internally, sometimes aloud – ‘This is my body healing. Nerves and blood vessels are healing. I am getting healthy, smooth skin.’ I did this in my STOP pose.”
- Be kind to yourself, a loving voice to your inner child. When you are scratching say to yourself, “Gentle, gentle, gentle”.
- Keep fingernails clean, trimmed short, and filed smooth.
- Wearing cotton gloves to bed may help limit the damage done by scratching in your sleep. There are many websites for eczema patients that sell clothing products and accessories made of 100% natural fibers, including gloves. Some find that wrapping their arms and legs at night can help reduce sleep scratching.
- Have a scratch tool, something that is soft, clean, and does NOT break the skin. One option is a soft, rubber comb. Another option is a therapressure brush, or a surgical scrub brush.
- Temperature changes can help – put ice or an icepack on the itchy spot, take a cool bath, rinse your hands in cool water, or place a cold wash rag on the itchy spot. Some people find that heat from a warm bath or a hot water bottle can help in the same way.
- If moisturizer makes your skin feel better, apply to the area. If moisturizer does not provide relief, or is irritating, do not apply.
- You will shed flakes of skin throughout the healing process. Be careful that you don’t start a ‘scratch fest’ while buffing off old skin.
- Have a “wellness buddy,” someone that you can promise you will not scratch or pick beyond what is reasonable. Then report to them. Having a partner or roommate as your ‘wellness buddy’ can be helpful because they can help you calm down when you are in the middle of a scratch fest.
- Distract yourself. Play a video game, type up an email, squeeze a stress ball or play with play-dough. Do something that keeps your hands busy.
- Antihistamines can help with the itch. Atarax, Zyrtec, and Benadryl can be prescribed at a higher-than-usual dose, if needed. Check with your doctor.
- Some find baths to be helpful and comforting. Just be careful baths are not too hot. Heat can feel comforting at first, but increased blood flow to the skin can induce burning and itching.
The purpose of this survival guide is to share tips that have helped veterans who have been or who are going through RSS. 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 RSS sufferers to 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.
- 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)
- 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
- 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
- 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 RSS, 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.
- 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
- Aveeno Colloidal oatmeal bath (or make your own by putting rolled oats in a sock and placing it in bathwater )
- Epsom salt
- Dead Sea salt
- Pink Himalayan salt
- Baking soda
- Tea tree oil: 3-5 drops added to 1 cup bath salts, then added to tub water
- Olive oil or other oils added to bath water (be sure to patch test first)
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.
- 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 neo-sporin 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.
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.
- Soap nuts
- Non-detergent soaps
- ALL Free & Clear
- Purex Free & Clear
- Cheer Free
- Seventh Generation Free & Clear
- Tide Free & Gentle
- Downey Free & Gentle
- Bounce Free & Gentle dryer sheets
- All Free & Clear dryer sheets.
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 RSS. This can be due to the skin losing heat during periods of flushing and redness. 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:
- Sleep aides
- Pain killers
- Antibiotic ointment
- Anti-anxiety medications
- Omega 3 oils
- Vitamin C
- Vitamin D
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.
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 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 RSS. These feelings of guilt are understandable, but unwarranted. RSS 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. Red Skin 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 the PTSD-like post-recovery aftermath.
22. Support groups. Use the ITSAN support groups! Bond with others going through Red Skin Syndrome. The people going through it get what you are going through and are very supportive and loving, so take advantage of the support groups on the public ITSAN forum and the closed or 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. Red Skin Syndrome is a roller coaster ride so be prepared for a lot of ups and downs.