FAQs

The information below is a revised version of the 2/2015 Q&A found at ITSAN.org

More research needs to be done on topical steroid addiction and withdrawal. The information below is what we know so far, based on the literature from a few TSW-knowledgeable doctors and a compilation of information from TSW suffers on the ITSAN forum and Facebook Red skin syndrome and TSW support groups. This information may be revised as new research becomes available.

.COMMON TERMS:

  • Topical Steroid Addiction (TSA) as defined by Dr. Fukaya (2014) is “the situation in which the skin develops more severe or diverse skin manifestations after the withdrawal from TCS than at preapplication.” Signs of TSA include:
  • *Uncontrollable, spreading eczema.
  • *Regular use of topical steroids for a period of time (weeks, months, or years).
  • *Topical steroids stopped working on your eczema. You need stronger topical steroids to get the same result as the first prescription.
  • *When you stop using topical steroid medication, your skin experiences one or more of the following symptoms: redness, burning, itching, skin is hot to the touch, swelling, and/or oozing.
  • *After many allergy/irritant tests, your physician still cannot uncover what is causing the problem.
  • *Skin biopsy  results show spongiotic dermatitis or nothing noteworthy.

Topical Steroid Withdrawal (TSW) is the lengthy withdrawal process that the body undergoes after stopping topical steroids. Primary symptoms of TSW include:   inflamed “Red Skin” with “red sleeves” on upper and/or lower extremities; increased itching; burning; stinging; oozing; swelling; flaking/shedding skin; hair loss; insomnia; and temperature dysregulation (being too hot/too cold). Other symptoms include, but are not limited to: HPA axis suppression, adrenal suppression, stunted growth in children, glaucoma. Often used interchangeably with RSS.

Red Skin Syndrome (RSS) is one of the names used for a group of symptoms  that occur during the process of stopping or withdrawing from topical steroids. Primary symptoms of RSS include: inflamed “Red Skin” with “red sleeves” on upper and/or lower extremities; increased itching; burning; stinging; oozing; swelling; flaking/shedding skin; hair loss; insomnia; and temperature dysregulation (being too hot/too cold). Often used interchangeably with Topical Steroid Withdrawal.

Steroid-Induced Eczema is eczema that looks and feels like original eczema but is exacerbated or worsened by the steroid medication itself. It may temporarily clear up, not clear up, or even worsen despite continued use of  higher doses and potencies of topical steroids. A different condition that doctors are familiar with is steroid induced rosacea.

  • Topical Steroid Rebound refers to the emergence or re-emergence of symptoms that were either absent or controlled while using topical steroids but appear when the drug is discontinued or reduced in dosage. The severity of symptoms may be worse than pre-steroid levels.
  • Iatrogenic refers to the undesirable or unwanted effects caused by medical or therapeutic intervention or from the activity of a healthcare provider or institution,  i.e., the problem is caused by the treatment.
  • Ooze/ Serous Exudate is a fluid rich in protein and cellular elements which seeps from blood vessels due to inflammation. Ooze is a characteristic symptom of topical steroid withdrawal.
  • Domeboro (brand name for Burow’s solution) is a preparation with astringent and antibacterial properties.  Many patients with TSW use Domeboro to treat oozing areas.
  • Atopy/Atopic refers to the genetic tendency to develop allergic diseases such as allergic rhinitis, asthma,  and atopic dermatitis (eczema). Atopy is typically associated with heightened immune responses to common allergens, especially inhaled allergens and food allergens (American Academy of Allergy Asthma & Immunology, 2015)
  • Shedding/Flaking  is the term used to describe the dead skin falling or sloughing off the body in shockingly visible and measurable  quantities. Full-body shedding is common in TSW.
  • Flare – A heightening or cycle of TSW symptoms, often the “red/hot” skin, followed by lessening symptoms, skin drying & shedding.
  • Quiet period – Some experience a break in symptoms between flares, while others never have a break – just months of symptoms.

DISCLAIMER: These question & answers are not medical advice but the compilation of Red Skin Syndrome sufferers’ experiences within the TSW Facebook and ITSAN support groups. Please practice due diligence in your research and find a caring, supportive doctor who can assist you in  your recovery.

FREQUENTLY-ASKED QUESTIONS:

    • Q: What is Topical Steroid Addiction,  Topical Steroid Withdrawal/rebound, and Red Skin Syndrome?
    • A: Topical Steroid Addiction, Topical Steroid Withdrawal/Rebound, and Red Skin Syndrome are some of the names used to describe the adverse effects of topical steroid use. See “Common Terms” for specific definitions.
    • Q: How do I know if I am addicted to topical steroids and have Red Skin Syndrome?
    • A: There are several signs that you may be addicted to topical steroids. You may have only one or two from the list below and still have Red Skin Syndrome:
    • You have uncontrollable, spreading eczema.
    • You used topical steroids regularly for a period of time (weeks, months, or years).
    • Topical steroids stopped working on your eczema. You need stronger topical steroids to get the same result as the first prescription.
    • When you stop using topical steroid medication, your skin experiences one or more of the following symptoms: redness, burning, itching, skin is hot to the touch, swelling, and/or oozing.
    • After many allergy/irritant tests, your physician still cannot uncover what is causing the problem.
    • You did a skin biopsy and the results showed spongiotic dermatitis or nothing noteworthy.
    • Q: What’s the difference between Red Skin Syndrome and regular eczema?
    • A: Unless topical steroids were used to treat other conditions, a person with Red Skin Syndrome  likely started out with true eczema or some other kind of rash. Topical steroids suppress the symptoms of true eczema for a time. In some people, regular use of topical steroids can cause the body to develop a dependency on the topical steroids.  The eczema rash appears to spread to  other parts of the body. A person who sees these eczema-like rashes will likely apply more topical steroids to suppress what they believe is simply normal eczema. They will also probably need to use topical steroids more often to suppress the rash or use a more potent topical steroid. At this point, the skin is likely addicted to the topical steroids. If this person stops using topical steroids now, they will begin going through Topical Steroid Withdrawal or Red Skin Syndrome.
    • As far as I know, “true eczema” doesn’t cause: FULL-BODY redness, shedding, oozing, swelling; elephant skin; hair loss; temperature dysregulation;
    • Q: Is there a cure for Topical Steroid Addiction/Red Skin Syndrome?
    • A: Yes. Total cessation of topical steroids. Once you stop using topical steroids, each day is one day closer to  healing. However, it takes a long time–months to years. And it is very difficult.
    • Q: Does everyone heal and become cured?
    • A: Dr. Marvin Rapaport and Dr. Fukaya, the premier doctors regarding this condition, have seen thousands of patients become fully cured from TSA and recovered from TSW. However, there are long-term users of TS who endure several years of rebound symptoms that are usually much more tolerable than the beginning stages. There are also many in the ITSAN support group who have recovered enough to get their lives back or fully healed since stopping topical steroids. Check out our before-and-after gallery. Note: While the TSA/TSW may gone, the underlying skin condition that led to steroid use in the first place may still resurface.
    • Q: Will I have eczema after I’ve healed from withdrawal?
    • A: Once you go through Topical Steroid Withdrawal and are fully healed from the damaging effects of topical steroids, there is a possibility that your eczema will be gone, too. However, you won’t know for sure until Topical Steroid Withdrawal is done, and your body has healed. It is difficult to find out if you still have true eczema before you are fully healed because eczema-like rashes occur during topical steroid withdrawal and can appear anywhere on the body –even far from the original site of topical steroid use. Additionally, during TSW people often react to more allergens/irritants than what they are truly allergic to, so testing for the cause of eczema will not be useful. If you do have eczema once TSW is complete, it will be much easier to manage and less severe than the full-body rashes experienced during TSW. You should also be able to determine the cause.
    • It is important to note that topical steroids do not cure eczema. Topical steroids simply clear the rash by suppressing the skin’s inflammation, giving the impression that eczema has “gone away.” After using topical steroids, some people may not experience eczema rashes again and may attribute this “cure” to topical steroids. However, it is actually because they have either outgrown eczema or because the allergen/irritant that triggered the reaction has been removed.
    • Q: Should I wean myself off of topical steroids or stop cold turkey?
    • A: See Dr Fukaya’s excerpt** at the end of the page.  Dr. Rappaport has recommend quitting cold turkey. Since every day off topical steroids is a day closer to full healing, it is believed that tapering topical steroids may prolong the length of withdrawal. There are stories of those who have tried to “wean” off but were unsuccessful and only prolonged the painful process, starting again at day one of TSW. Additionally, some doctors believe that all steroid use is cumulative, so the sooner one can end the total of topical steroid “load” to the system the better. However, there are a  few cases on the ITSAN FaceBook support forum in which the TSW sufferers were attempting to wean or taper the TS use as they journeyed through TSW. The final results have yet to be reported.
    • NOTE: One should never quit systemic or oral corticosteroids cold turkey. These medications must be tapered with a doctor’s assistance.  ITSAN speaks only of stopping TOPICAL steroids and the subsequent withdrawal process that accompanies cessation of these topical drugs.
    • Q: How long does the withdrawal process take?
    • A: The initial withdrawal period is usually when the worst symptoms occur and may take several weeks or months, depending on the individual.  After the initial withdrawal, you may experience symptoms for months to years while your body heals from the damage caused by topical steroids. This can include periods of calmer skin (breaks) and periods of flaring with the skin cycling through phases of oozing, flaking, redness, shedding, etc. Flares typically become shorter and less intense the longer you are off topical steroids until you eventually stop experiencing flares and start having more normal skin.
    • The timeline depends on how long you used topical steroids, the potency of the topical steroids you used, and which body part(s) topical steroids were used on. Some areas of the body (such as the scalp, face, and genitals) absorb higher levels of corticosteroids when topicals are applied. A history of oral corticosteroids such as prednisone, or injections of steroids, will also affect how long it takes to heal.
    • Because of these variables, it is difficult to say exactly how long it will take before your skin is fully healed from topical steroid addiction and withdrawal TSA/TSW. Many people seem to take at least two to three years to heal.  Those who used topical steroids for a longer time period or who used oral steroids or injections generally take longer to recover.  Dr. Fukaya, a leading Japanese doctor involved in Topical Steroid Withdrawal research, believes that it takes 10-30% of the time one used topical steroids to recover fully from TSA/TSW.
    • Q: What are the most common symptoms of Topical Steroid Withdrawal?
    • A: These symptoms occur after you stop using 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: 24 hours/day and 7 days/week,  whole body redness, burning, pain, increased itching, red sleeves; swelling; oozing; flaking and shedding copious amounts of skin; hair loss (head and body);  insomnia; temperature dysregulation (too hot or too cold); thoughts of suicide; possible HPA axis suppression; stunted growth in children; adrenal suppression; glaucoma, cataracts, enlarged lymph nodes.
    • Red, burning skin: 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 the “red sleeves”: red skin that stops at the wrist, leaving the palm unaffected but arms and tops of hands red. It might take weeks for the red 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.
    • Itchy skin: The itch is unbelievably intense and feels like it originates under the skin. There are hundreds of nerves possibly affected or paralyzed that run under the skin throughout the body. The recovery from steroid suppression may cause symptoms described such as a sleeping limb “waking up”, 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 skin. 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.
    • Enlarged lymph nodes: These are felt as lumps under the skin. They can be in the neck, armpits, groin, behind the knees or around the ribs. The lymph system helps detox the body of  bacteria and replenishes the blood with white blood cells. This is common during withdrawal and may not be a result of infection. However, if you are concerned, or if an enlarged lymph node becomes troublesome over time, you should consult a doctor.
    • Hair falling out: Some sufferers find that they get balding patches or their eyebrow hair falls out. Some also lose all body hair. This will grow back as healing takes place.
    • Eye irritation: If you have put topical steroids around your eyelids or nearby: eye dryness, redness, soreness, photosensitivity, occasional blurry vision and excess mucus may be present. It is wise to get your eyes thoroughly examined by an optometrist when ceasing topical steroids, as in severe cases the effect of steroid withdrawal on the eyes can cause cataracts, glaucoma, or blurred vision. (CAUTION: Face slapping is strongly discouraged as it may cause retina detachment.)
    • Energy levels: Exhaustion, fatigue, and burnout are very common  symptoms of TSW.
    • Sleep difficulty: Insomnia or difficulty maintaining a normal sleep schedule; altered body clock
    • Appetite: Loss of appetite, weight loss, increased appetite, and weight gain.
    • Q: What is a flare?
    • A: During a flare or cycle of TSW, your skin may experience an increase in one, a few or many of these symptoms: redness, sensitivity, intense itchiness, hives, cracking, swelling, or oozing. When this happens, your symptoms may continue to increase in severity for a period of time. Your skin may also seem stuck in a “holding pattern” of bad 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 healed. 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.
    • Q: Is it ever safe to use topical steroids and for how long?
    • A: Topical steroids should never be used longer than two weeks. Many cases of eczema can be resolved without topical steroids through dietary changes or environmental changes (such as avoiding certain allergens or changing your washing machine detergent). Steroids should be used as a last resort, and always starting with a lower strength. The side effects of topical steroids are not well-documented because topical steroids were developed before thorough research and testing controls were established. Also, few people report the side effects they do have. Many doctors diagnose  the worsening skin symptoms as “worsening” or “stubborn” eczema when the increased redness, itching, and burning may actually be TS side effects that they should be reporting to the FDA Medication watch.  After all, these side effects are listed on many TS patient pamphlets.
    • Dr. Rapaport has reported that about 50 percent of his totally recovered Red Skin Syndrome patients that attempted to use mild topical steroids for a short period on an area of their body (never the face or groin area) that never had steroids applied to it, developed addiction again so he does not advise it. Dr. Fukaya believes that some patients could safely use mild topical steroids again if fully recovered from topical steroid withdrawal but also cannot predict or guarantee  the outcome.
    • Q: Does everyone that uses topical steroids get addicted over a long period?
    • A: Not necessarily. Atopic types are the most likely to get addicted, but usage is cumulative. This is why some people take a short time to get addicted and others take decades.
    • Q: If I have Steroid-Induced Eczema or my skin is addicted, is it okay to use steroids temporarily or on a small area like my face?
    • A: According to the doctors who have studied topical steroid addiction and withdrawal, this is not advisable and may or may not set one back in their recovery time. It is believed that all usage of steroids throughout the years is cumulative and remembered by the blood vessels.  It has been reported by some patients who went back to using topical steroids that the second rebound was more severe. Additionally, topical steroids are absorbed at a higher rate on some areas of the body, including the face. Although you may be tempted to use topical steroids on the face to suppress the redness, flaking, or oozing, it could  delay full healing.
    • Q: If I have asthma, will using an inhaler with steroids affect my ability to recover from Topical Steroid Addiction?
    • A: A steroid inhaler may cause a slight drawback because there is a small amount of steroid absorption. If steroid inhalers are vital and cannot be stopped without interfering with breathing, then you should continue using them. Consult your physician on this topic.  DON’T STOP ASTHMA INHALERS WITHOUT YOUR DOCTOR’S APPROVAL, AS THIS CAN BE DANGEROUS!
    • Q: What are some recommendations to help the withdrawal process go more smoothly?
    • A: The first thing you should do is become informed about topical steroids and the withdrawal process. Read all of the articles posted on the ITSAN site. This will help you better understand what your body is going through and will help you explain the process to others. The information posted on the ITSAN site and forum will also help you understand ways to treat the symptoms.
    • When you initially stop using topical steroids, you can expect a period of time where your discomfort level may be so high that you are not able to work or adequately take care of family members. Depending on your history of steroid usage, this time could last several months. If you are still using topical steroids and have not decided to withdraw yet, you have the advantage of being able to put a plan together before you begin withdrawal. Having a partner or caregiver to whom you can transfer your responsibilities will be very helpful. If you work, check on the feasibility of taking a leave of absence or short-term disability. A child or college student going through withdrawal probably won’t be able to attend school during withdrawal. See “Can I work or go to school while going through withdrawal?” in the FAQs for more information on this topic.
    • During topical steroid withdrawal, your sleep pattern will likely become disrupted. This may be primarily due to imbalance of your natural cortisol levels, which occurs when you stop using the artificial cortisol found in topical steroids. It can also be caused by the intense itching that most experience. You may find it difficult to sleep, frequently awake due to discomfort, and may only be able to sleep during the day. Sleep is very important and this is especially true during withdrawal when your body is undergoing an intense healing process.
    • Curtains: You will want to make sure that your bedroom is relaxing and make sure that your room remains dark during the day, as this may end up being the best time you can sleep. You can black out your windows using heavy blackout curtains, or by covering your windows with  aluminum foil.
    • Bed linens: You may want to use a will need to change and wash your sheets regularly so it helps to have more than one set. You will likely want to discard the sheets when you are healed, as they may become stained with blood spots and become worn from frequent washing.
    • Vacuum: Keep a vacuum cleaner near your bedroom since you will experience extensive skin shedding.
    • There are several items you should have on hand that help ease the symptoms. You may not need all of these, as you may not experience all symptoms. Keep in mind that you may need to switch to a different brand or product throughout the healing process. Time is the only currently known cure for Topical Steroid Addiction, so do not expect miraculous healing from any product.
    • Your skin may become overly sensitive to a product that was previously tolerated and your skin may not tolerate anything at all during various stages of TSW. Topical Steroid Withdrawal is not the same as eczema, so treatments and products meant for eczema may cause further irritation, even if you were able to tolerate them before beginning Topical Steroid Withdrawal.
    • Always read the ingredients label and know what you are using on your body.
    • Patience and a positive attitude: Topical Steroid Withdrawal is a very difficult time, and it can be frustrating and depressing. Try to remember that this is a very slow process and often you’ll improve one day, only to be much worse the next. It’s very “two steps forward, one step back.” It can also be confusing, because you may have a very bad day only to see substantial improvements the next. Take it one day – even one hour – at a time, and remind yourself that you will heal in time and this is only temporary.
    • An emollient: If preferred, single-ingredient products, such as petroleum jelly, pure coconut oil or white palm oil, tend to work best for many sufferers. You may need to experiment to see which one works best for you. The ITSAN forum “preferred emollient”  poll shows that petroleum jelly is the most commonly used product that is tolerated in the early stages of withdrawal. Some sufferers try to go without moisturizers due to advice from those who liked it better but it can be highly uncomfortable for others, especially in the early burning stage. Most prefer a gentle barrier in early stages and some people chose to phase out of any emollient as the skin recovers so this is an individual choice as there is no science to prove that not using moisturizer hinders or helps healing. Comfort is of paramount importance to endure a long withdrawal process. Many have healed fully with or without moisturizers and find this to be a very personal decision.
    • Domeboro Solution: This is an astringent used to dry up oozing skin. Those who are not in the US may have trouble finding this product. Other options you could try:
    • -Use zinc oxide powder alone or with a well-tolerated base (palm shortening, olive oil, etc).
    • -Diaper rash creams such as Desitin. The active ingredients in these products are zinc oxide, but it may be more convenient for some than mixing their own.
    • -Soaking or bathing with epsom salts, sea salts, or apple cider vinegar may help dry the oozing.
    • -Calamine lotion.
    • Ice packs or hot water bottles: Various sizes of ice packs are useful because they can be used on the arms, neck, etc. Ice can help reduce the pain, swelling, and extreme itchiness. Some people also find temporary itch relief with hot water bottles or electric blankets, so if ice packs do not help with the itch, you may wish to try heat instead. Caution: Ice packs may burn the skin if left on too long so please be safe.
    • Antihistamines: The itching can be very severe and may not be eliminated with antihistamines, but they can help. In addition, some antihistamines cause drowsiness, which can be helpful if you’re having trouble sleeping. Hydroxyzine (name brand: Atarax) is often prescribed, but over-the-counter treatments such as Zyrtec or Benadryl can be used as well.
    • Ibuprofen may help reduce the itching for some.
    • Lyrica, a prescription-only medication, may be used to treat nerve pain if you experience painful shocks or nettles.
    • Sleep aids: If you find that your sleep pattern is disrupted, it may necessary to use sleep aids for a time. Options include:
    • Natural sleep aids, such as herbal teas (chamomile, valerian, “Sleepytime Tea”).
    • Melatonin (synthetic form of a naturally produced hormone that aids in sleep).
    • Benadryl, hydroxyzine, or other antihistamines that cause drowsiness.
    • Some find relief with prescription sedatives or anti-anxiety medication but must take precaution to the addictive factors with these drugs.
    • Comfortable clothing: Because the skin is very sensitive during Topical Steroid Withdrawal, you will want to find soft, loose-fitting clothes. Clothing made from natural fibers such as cotton will feel nicer on the skin. Long-sleeves and comfortable pants can also help prevent too much scratching. Children will probably benefit from special pajamas that have mittens and socks sewn in to help prevent scratching. Adults may want to wear gloves if their hands are affected by rashes, and to prevent scratching. Cut tags out of clothing to avoid irritation. Depending on what stage of Topical Steroid Withdrawal you’re in, you may find clothing and gloves irritate you too much and dressing minimally may better suit you.
    • Q: Can I work or go to school while going through withdrawal?
    • A: Most people will need some time off from their normal schedule at the beginning of Topical Steroid Withdrawal, since this first flare is often the worst. In addition to the physical symptoms, Topical Steroid Withdrawal is emotionally draining.
    • Many people experience intense symptoms until they are fully healed, so they are not able to resume normal activities for many months. They may be bed-bound or housebound due to the extreme symptoms that occur. Some are forced to take leave from work or arrange an alternative schedule due to an erratic sleep schedule or insomnia. The appearance of your skin may also affect your desire to leave the house.
    • Others may find that after the initial withdrawal period, they are feeling well enough to work, although they are not healed and continue experiencing symptoms. The type of job you have will affect your ability to work. Someone with a physically demanding job will likely find it too difficult to work until healed. If you continue to work during withdrawal, you may want to speak with your supervisor in case you need to take time off or work from home while going through a flare.
    • Children and college students going through Red Skin Syndrome may not be able to attend school until healed. College students may want to take a few semesters off or take online courses if possible. For younger children and teenagers, it may be necessary to arrange for home schooling or tutoring to allow your child time to rest at home. In the United States, parents may be able to make a 504 plan which allows for adjustments and accommodations to a child’s education. This can include home instruction. More information about 504 plans can be found by clicking this link.
    • Stay-at-home parents going through Topical Steroid Withdrawal will need support from partners, family, and friends. Depending on the severity of your symptoms, you may find it difficult to do normal things, such as taking children to school or caring for children throughout the day.
    • The most important thing to remember is that your body is going through a very intense healing process. Arranging a less stressful schedule can be very beneficial and, in many cases, necessary.
    • Q: What about moisturizers during Topical Steroid Withdrawal?
    • A: During Topical Steroid Withdrawal, you may experience very tight, dry skin and extremely flaky skin that sheds in visible and measurable quantities. Many of the people in our network have healed just fine while using a simple moisturizer with few ingredients, such as Vaseline or natural oils like olive, white palm, coconut, or jojoba. Some find it more comfortable by not using any emollient on their skin after it strengthens which is fine as well.  Also keep in mind that multi-ingredient products can irritate the skin. If you choose a moisturizer, make sure it works for you and that it doesn’t contain a hidden topical steroid which can be found in some “eczema lotions”.
    • Some doctors in Japan believe that not using a moisturizer can help with healing. They feel that some people might be addicted to moisturizers and go through “moisturizer withdrawal”. ITSAN does not take a stance on this theory since we have no science to back moisture addiction and have seen most people find comfort and heal while using moisturizers at some stage of TSW. We are open to the fact that some prefer not to use moisturizer and that is a personal decision.
    • Q: What causes the intense itching?
    • A: The itching can be the worst symptom for many people. IS THIS TRUE? —>Deep layers of skin are healing and it causes itching. This is similar to a sunburn itching as the skin regenerates, or itching experienced while a wound heals.
    • Please see Itch Management on the ITSAN Resources page.

 

  • Q: What can I take for the itching and to help me sleep?
  • A: Many people going through withdrawal find Atarax, Zyrtec, Benadryl, anti-anxiety, and other sleep-aid medications helpful. Speaking with your primary care physician about your Topical Steroid Withdrawal and using these medications to help with symptom relief is recommended.

 

Q: Can a child take antihistamines or sedatives?

A: There are antihistamines and sedatives indicated for use by young children and a few natural alternatives. You should discuss these options with your doctor.

  • Q: Why do I feel a pins and needles sensation or random “pin pricks”?
  • A: Not everyone has this symptom, but some do. ????citation This is believed to be blood vessels healing, the nerves under the skin “waking up” or both. More studies are needed to better understand this phenomenon
  • Q: Why does my skin burn now that I’ve stopped using topical steroids?
  • A: Topical steroids work by constricting the blood vessels. Once you stop using topical steroids, the affected blood vessels become “wide open” or dilated. During withdrawal, the body produces a high level of nitric oxide, which is believed to  cause the burning sensation. [2]
  • Q: Why are there lumps in my skin?
  • A: Many people going through topical steroid withdrawal have lumps in their skin. After checking with their doctor, these lumps were found to be either a lymph gland fighting inflammation or a hair follicle that had been scratched and became swollen. The lymph nodes may be sore or swollen, especially during a flare. However, we recommend that you double-check with your physician if you are concerned.
  • Q: What is the liquid that oozes out of my body?
  • A: This liquid is called serous exudate. Most going through Topical Steroid Withdrawal just call it ooze. It is thought to be the “interstitial” fluid that is pushed out when blood vessels are dilated. It may cover your skin in a thin, sticky layer or you may see small blisters form and collect this fluid.

Q: How do I deal with the oozing?

A: During times when your skin oozes a lot, you can try to dry the skin with Domeboro Solution or one of the other solutions.

Q: Should I  worry about  staph infections  during Topical Steroid Withdrawal?

A: Everyone has a variety of bacteria on their skin, but people with eczema have a greater risk for skin infections due to the presence of a higher quantity of staph aureus [5] and an impaired skin barrier which makes it easier for unwanted germs to enter the skin/body and cause infection.  It is very  important to prevent skin infections. However, if acquired, infections should be treated immediately.  Left untreated, they can progress to more serious systemic infections.

Q: What are symptoms of skin infection?

 

  • Symptoms of infection include: pus-producing lesions, pus-filled blisters, yellow-orange or honey colored crusting over lesions, infected hair follicles, increases swelling and pain, low-grade fever, and fatigue. Seek immediate medical attention if these symptoms occur, or any time you are concerned you may have an infection.
  • Q: Why do I get symptoms on my skin in places I never put steroids?
  • A: The skin is one organ so any of it can be affected, even if you used topical steroids in another area.
  • Q: I’ve heard that getting some sun on my skin may help me heal.
  • A: Sun is not promised to speed healing but is often found to help. It is only recommended for those in the later stages of Topical Steroid Withdrawal after flares have stopped and when the skin is dry, thicker, and not pink or red. UV rays can help restore the dry, steroid-damaged skin to a more normal, healthy state. 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) and work your way up to 20 minutes. Cool sun is recommended.
  • Q: Is it normal to feel panicked or anxious?
  • A: Many of those in withdrawal have felt this way. It is a long and difficult process that involves the largest organ of the body. 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.
  • Q: Is it normal to feel very depressed or suicidal?
  • A: Many with this condition have felt this way. It is a long and difficult process that involves the largest organ of the body. It affects everything from one’s appearance to the ability to function normally. It is important to talk with a counselor immediately if you feel depressed or suicidal.
  • Q: Is it safe or good timing to withdraw during my pregnancy?
  • A: Most topical steroids are rated Category C by the FDA’s Pregnancy Drug categories. This means that there is either inadequate research on the safety of the drug for pregnant women or that animal research has shown adverse fetal effects, but no studies have been done on humans. An expectant mother must weigh the damage that steroids may do to her and to the developing fetus against how difficult the Topical Steroid Withdrawal process will be on her during pregnancy.
  • Q: Why am I allergic to things that never bothered me before?
  • A: During Topical Steroid Withdrawal, your body is very sensitive and allergy levels such as IgE and eosinophil are slightly or extremely high. After withdrawal, it should return to normal. Allergy testing during Topical Steroid Withdrawal may be inaccurate because your system is hyper-vigilant and reacts more than it normally would.


REFERENCES

1. Kligman AM, Frosch PJ. Steroid addiction. Int J Dermatol. 1979;18(1): 23–31.

2. Rapaport MJ, Rapaport, V. The red skin syndromes: corticosteroid addiction and withdrawal. Expert Rev. Dermatology. 2006; 1(3): 547-561.

3. Fukaya M, Sato K, Sato M, Kimata H, Fujisawa S, Dozono H,Yoshizawa J, Minaguchi S. Topical steroid addiction in atopic dermatitis. Drug, Healthcare, and Patient Safety. 2014:6 131-138.

4. Rapaport MJ, Lebwohl M. Corticosteroid addiction and withdrawal in the atopic: the red burning skin syndrome. Clinical Dermatology. 2003; 21(3): 201-214.

5. Patients With Atopic Dermatitis / Eczema Syndrome. The Internet Journal of Dermatology. 2005; 4(2).

6. American Academy of Allergy Asthma and Immunology.org http://www.aaaai.org/conditions-and-treatments/conditions-a-to-z-search/Atopy.aspx

———————————————————————————-

**Dr. Fukaya on tapering topical steroids vs stopping “cold turkey” from:  http://mototsugufukaya.blogspot.com/search/label/A%20case%20of%20withdrawal%20from%20TS%20oral%20steroids%20and%20CsA

  • “The reason why I referred to ‘cold turkey’ is that this word is also used in Dr. Kligman’s paper on Steroid Addiction in 1974.
  • —– Excerpt —–
  •   For stalwart, stoical patients, we have used ‘cold turkey’ replacing the steroid with lubricating cream, applied liberally q.i.d. to induce dehydration. The first few weeks will be a “living hell”. The time required for the skin to return to normal depends on the degree of atrophy. Long-term addicts may have damage which cannot be completely reversed, but for the most part great improvement can be anticipated over a period of months. It is not wise to underestimate the time required.
  •   For most patients, we follow a weaning protocol, using first 2.5% hydrocortisone for several weeks with a warning that this may not completely prevent a rebound flare. Eventually we drop to 1.0% hydrocortisone and finally we substitute lubricating cream, at which time a minor flare is not unusual.
  • —– End of excerpt —–
  •   ‘Isn’t it risky stopping steroids abruptly’ was a frequent question I got when I was engaged in treatment for TCS withdrawal support. It was difficult to make doctors asking such a question understand my intention, how many times I may have explained. I always let patients take the initiative in choosing what kind of treatment they want to undergo: stopping steroids or not, or stopping instantly or gradually. I thought patients should be provided with such decision-making rights.
  •   And I did accept and support patients whenever they chose to stop ‘cold turkey.’ If I had recommended gradual reduction over time indicating the harshness of stopping cold turkey and rejected to see patients who did not follow my advice, patients who could not help choosing “cold turkey” out of mistrust in medical service that caused steroid addiction would have lost the place to seek help and carried out the withdrawal by themselves at home. It was medically a very dangerous thing I had to avoid by all means. I have never recommended patients to stop at once.
  •   Some may wonder what on earth I was doing as a dermatologist. But I’d like to ask what the doctor’s job is all about. Is it only deciding a type or dosage of TCS? I thought it far more important to prevent an infection, check for complications in the eyes and give mental support. The same as with other addiction cases, successful rates are higher when patients are given initiatives. Some chose a gradually reducing approach and successfully withdrew from addiction.
  •   I was really encouraged by Dr. Kligman who referred to both approaches of stopping cold turkey and tapering gradually in his paper.
  •  I believe doctors should always be prepared to answer each patient’s desire.
  • Sometimes dermatologists comment that topical steroids should not be quit abruptly because it can cause the rebound phenomenon. But in case of TSA with atopic dermatitis, I don’t agree with that opinion because tapering doesn’t work in most cases to avoid rebound phenomenon. The patient in this case also couldn’t avoid rebound though he tapered. He could never escape from TSA if he obeyed the theory that there should not be any rebound if appropriately tapered.
  • In case of steroids therapy for other disease, for example collagen disease such as SLE, tapering manner is very useful and important. But in case of atopic dermatitis, it doesn’t  necessarily work.”

8 thoughts on “FAQs

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  8. Hi rosemarie
    You did well with this post – at seven months in to our withdrawal your writing has been so accurate. Thank you. Blogs like yours have been a great support of comfort and factual information for me in helping my littlun off these blummin steroid creams. The light at the end of the dark tunnel of recovery is a lot bigger than it was a few months ago x
    Rita

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