How do I know if I have Topical Steroid Addiction? (FAQs)

Hey folks,

Just copied these frequently asked questions about topical steroid addiction/withdrawal from the ITSAN forum. It contains lots of helpful and informal information that you may find useful during your own healing process.

Thanks for taking the time to visit. More updates and pictures to follow shortly.


Gary  


Link to the ITSAN forum: http://forum.itsan.org/index.php



Q: How do I know if I have Topical Steroid Addiction (TSA)?

Note: you may only have one or two from the list below and still have TSA
A: 1) Topical Steroids (TS) stopped working on your eczema, you needed stronger ones to get the same result
2) When you stopped using TS you turned red, your skin burned, felt hot, swelled, and oozed, etc.
3) You had 'uncontrollable' spreading eczema
4) You could NOT identify any allergies/irritants that were causing the problem after many tests.
5) You did a skin biopsy that showed spongiotic dermatitis, or nothing of note.
6) You used TS regularly for a period of time that would make one become addicted (weeks to decades).

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

A: Yes, if you used only a small amount on a small body part, then it is possible that your whole body may not go through TSW, however, the skin is one organ and often people will have “distant” steroid eczema, hives or bad reaction when they only used TS in one small area. Each person responds differently.

Q: What are the most common symptoms of TS Withdrawal (TSW)?

Note: these symptoms happen AFTER you have quit steroids but there is a chance that it will stop working before you quit and cause various symptoms as well.  Again, not all symptoms are seen by everyone except the burn at some point. Some people only have one or two, some have all and more.

A: 1) Red, burning skin, usually appears within a week after stopping but can take longer and appear more than once (tell-tale red “under forearm with white unaffected palm, can take weeks to appear)
2) Swollen skin, swollen body parts containing fluid
3) Oozing skin
4) Itching skin
5) Raw, painful skin that can feels like a bad sunburn, sensitive to  everything
6) Whole body skin gone "haywire". Spreading distant steroid eczema, hives, dry skin, itchy skin--even in places you never used. Skin is one organ, so when one area is messed up it can affect all your skin
7) Freezing body, feet, hands, etc. Body has trouble regulating temperature.
8 Exhaustion, insomnia, loss of appetite, increase of appetite
LATER IN THE PROCESS after a flare or at the end of TSW:
9) Super dry, plastic feeling skin
10) Shedding, flaking skin--tons of it.
11) Insane itching
12 Nerve pain often described as burning, ants crawling, zingers, electrical jolts, pins and needles and sparklers.

Q: How long does the withdrawal process take?
A: The initial withdrawal with the worst symptoms usually lasts a few weeks to months, depending on how long you used TS and the potency of the TS. Usage time, strength, and body part location of use will all affect the length of time to healing. One doctor believes that it may take 10-30% of the time TS were used to be fully healed. However, it does not mean you will have terrible symptoms during the entire withdrawal period. Many people have breaks or “quiet” periods during TSW and then a flare later. As the process progresses, usually flares become shorter and less intense but there are the exceptions this also. Everyday of TSW puts one closer to being healed.

Q: Does everyone really heal and become CURED?

A: Both doctors who have studies this condition have seen thousands of patients become fully cured of steroid red skin syndrome, "untreatable" (or steroid induced) eczema and recover from TSA/W. There are several people in our own forum that have been healed or are able to live life pretty normal again.

Q: What is a flare?

A: A flare can be many stages of the withdrawal at different times or combined. The initial flare usually appears in your skin as red, oozing, swollen, thick, very itchy and in an upward or “holding pattern” of bad skin. Flares can last from days to months and recur in later stages but usually don't last as long as early month flares. When a red, hot flare subsides, the skin becomes dry, flaking, shedding, feels like plastic, very rough and somewhat less itchy than when red, but still itchy. There are milder flares where the skin may get wet or rashy and very itchy and this can go on for some time after the harder flares.  Some people never have a “quiet” period and may just have milder long-term TSW symptoms until the process ends.

Q: Can I work/go to school while going through withdrawal?

A: Most people are bed bound or housebound due to the extreme symptoms that occur when stopping steroids cold turkey. (which is the way that all the vets here have done it as they differ from oral steroids)  It is best to prepare for this withdrawal time by taking leave and/or lightening your workload. One day we hope ITSAN’s work will accomplish TSW being recognized for short and long-term disability leave. Also, caregivers of children going through TSW will have to adjust their schedules. There is something in the USA called a 504 Plan which may be helpful to those in school. Here is the link to that information: http://specialchildren.about.com/od/504s/f/504faq1.htm

Q: If I have asthma will using an inhaler with steroids ruin my withdrawal recovery?

A: Dr. Rapaport says, "Could be a slight drawback- rather stop it, but if necessary for living we live with it   There obviously is some small absorption-  I also feel that the asthmatic’s bronchi get addicted". 

Q: What's the difference between steroid withdrawal and regular eczema?

A: Until you are done with the withdrawal process it will be hard to tell the difference in original eczema and steroid induced eczema because when one is in TSW, eczema can appear anywhere on the body--even away from the site of TS use. Also, you cannot be sure that your “old” eczema was not steroid induced.

Q: Is it ever safe to use steroids and for how long?

A: All topical steroids are never to be used for more than two weeks in any one area of the body although many doctors and pharmacists don’t tell you this. It is also listed on steroid cream side-effects that thin skin areas like the face and genitals absorb 30 to 40 per cent more.  Most eczema can be resolved on in children as they would normally grow out if it. Steroids should be used as a last resort because the side effects they carry are not well documented, due to the fact that they came to market before thorough research testing controls.

Q: Can I go back to using steroids temporarily?

A: Dr.Rapaport says no, this will delay a cure and all usage is cumulative. The blood vessels will “remember” and rebound could be even more severe.

Q: Should I wean myself off of steroids or stop cold turkey?
A: Cold turkey is what Dr. Rapaport recommends, based on what is said above.

Q: What do the lumps under my skin mean?

A: Many people in TSW have lumps in their skin. Many have had these checked by a doctor and they were found to be either a lymph gland fighting inflammation or a hair follicle that had been scratched and swollen. However, we recommend that each person check it out with  their own doctor.

Q: Why does the burning feeling happen when I stopped steroids?

A: Your blood vessels have been constricted during the usage of TS and now being off they are “wide open” and inflamed. Also, it is thought that the high Nitric Oxide Levels can cause this burning sensation.

Q: What are the most common lubricants used by steroid withdrawal sufferers?
A: ITSAN forum does not advise one way or the other as far as what helps TSW since some people absolutely hate using any kind of moisture on their hurting skin but many of us chose a thin layer of a barrier for comfort during different stages. The ones most used are Vaseline, white palm oil, Sweet Bee Magic, Shea, coconut, jojoba or other pure oils. The skin is very sensitive during TSW, so spot testing is strongly advised and it's possible that more than one ingredient in a product can irritate and burn the skin. It's also been observed that using some type of barrier during the raw painful stages is preferred by several TSW sufferers and then as the skin heals enough, nothing on the skin feels best.

Certain doctors have recommended no moisture during TSW and while this method has been said to bring comfort by some patient's testimonies, others have tried it and experienced no benefit. It is important for the individual to pursue a treatment plan that is personally tailored to their own needs and comfort.

Q: What can I take for the itching and to help me sleep?
A: Aatarax, zyrtec, benadryl or even a anti-anxiety or sleeping aid medication.

Q: Is it normal to feel panicked or anxious?
A: Many people going through TSW have felt this way. It is a horrific, long process that involves the largest organ of the body and affects one’s appearance and ability to function normally. ITSAN forums or some type of support group are a great way to find comfort during an anxious time as that is how we helped each other along. ((Maybe this is why most dermatologists keep their patients on TS)  ::).

Q: Is it normal to feel very depressed or suicidal?
A: Many people going through TSW have felt this way. It is a horrific, long process that involves the largest organ of the body and affects one’s appearance and ability to function normally.  It is important to talk with a counselor, immediately, if you really feel this way.

Q: Why do I feel a pins and needles sensation or random "pin pricks"?
A: Not everyone has this symptom, but many do. This is believed to be blood vessels healing. There are thousands of nerves running though the skin and they too, have been affected. Meds that have seemed to help this are Ibuprofen, Gabapentin and Lyrica but again no one thing works for everyone.

Q: Are my nerves damaged?
A: No they are "waking up"and in time they fully recover.

Q: It is said that getting some sun on my skin will help me heal. Can you describe this in detail?

A: We try “cool sun” and one’s skin is only ready for this late in the process of TSW. It is after flare(s) have stopped and skin is dry, thicker and not pink/red. Some UV will help return dry, steroid damaged skin to normal. But be careful not to get too hot or too much sun. Time recommended is 10 minutes to start with and work up to 20.

Q: What are some recommendations to help the TSW process go more smoothly?
A: First, access all of the resources on our home page that explain the process and what is best to treat the symptoms.  Most people decide to stop using topical steroids and then become overwhelmed with the intensity of symptoms they experience and were unprepared for.  Depending on the frequency and duration of steroid use in your past expect a period of anywhere from 2-4 months in which your discomfort level may be so high that you may not be able to work or adequately take care of the family.  If you haven't yet stopped using topical steroids, you have the advantage of getting a plan together first.  Having a partner or caregiver to whom you can transfer your responsibilities will be very helpful.  If you work, check on the feasibility of a leave of absence or short term disability.  If you have a child who will be going through the withdrawal period, they probably won't be able to attend school for a while.

Preparing your environment-Your sleep pattern will become disrupted.  This is primarily due to the out of balance cortisol levels you will experience after removing the artificial steroids from the body.  You likely will find it difficult to go to sleep, frequently will awaken in discomfort, and will want to sleep very late.  As such you will want to make sure your bedroom remains dark during the day.  Black out your windows with aluminum foil, for example.  Getting as much healing sleep as possible is critical to recovery, and you don't want to be awakened early in the morning by light.  Also choose a couple of comfortable sheet sets you will discard when you are healed, as they will get stained with blood spots and will have to be washed frequently. Keep a vacuum by the bed  to clean the area often due to extensive skin shedding.

Basic items to have on hand -
1) Domeboro solution (astringent for drying up oozing skin)
2) Emollient if preferrred (single ingredient product like coconut oil, petroleum jelly is best - you'll have to experiment to see what works best for you).  Also, emollient needs may change depending on the stage your skin is in.  It is generally accepted that moisturizers with a lot of ingredients are more likely to irritate the skin.  Remember TSW is NOT eczema and treatments for eczema generally won't be effective and likely irritating.
3) ice packs - the larger the better, for wrapping the arms, neck, etc. Ice will reduce pain, swelling, and itching. 
4) Antihistamine for itching.  Most people take hydroxyzine which is a prescription antihistamine.  Some take OTC Zyrtec or Benadryl.

Clothing - soft loose-fitting cotton.  Some find that wearing long sleeves and pants keeps them from scratching so much while others find the clothing on the skin very uncomfortable and dress minimally.  Your clothing preferences will change depending on the stage of withdrawal you're in.

Finally, attitude is very helpful. As the end of withdrawal is variable sometimes this can be frustrating. Take each flare one hour at a time, one day at a time. You may feel much better tomorrow.

Q: Why do I get symptoms on my skin in places I never put steroids?
A: The skin is one organ, so all of it can be affected, even though you used it in another area.

Q: What causes the intense itching?
A: The itching can be the worst symptom for many (See Itching Management on the Resources page at itsan.org). Deep layers of skin are healing, like when a wound is healing, it itches. There is also one theory that the motion of itching moves the lymph system and can be helpful in healing.

Q: Is it safe or good timing to withdraw during my pregnancy?

A: Most TS are pregnancy category C rated by the FDA, which is not a good safety rating. An expectant mother must weigh the damage steroids could do to the fetus against how hard the TSW process will be on her during her pregnancy.

Q: Are staph infections common during TSW?
A: No, but many doctors unfamiliar with TSW will think that the “ooze”, which can be yellow in color (or clear) is an infection. The doctor says, generally, we are not infected. We are all colonized with staph on our skin, so when a positive staph culture comes back, then many are diagnosed with staph, but are really not “infected”. It is recommended that during very red, oozing times to use Domeboro Solution (available in the drugstore) to keep skin clean. It is important to keep an eye on anything that looks infected and watch it for signs of increasing redness, heat, swelling and tenderness and seek immediate medical attention if these symptoms occur.


Q: Can a child take antihistamines and sedatives?

A: This should be discussed with your doctor, but there are antihistamines that are indicted for use in young children.

Q: What is the liquid that oozes out of my body?
A: This is serous exudate and thought to be the “interstitial” fluid that is pushed out when blood vessels are dilated. It is not the body detoxing.

Q: Does everyone that uses topical steroids get addicted over a long period?
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A: No, atopic types are the most likely to get addicted, but usage is cumulative, which is why some people take a short time to get addicted and others take decades.

Q: Why am I allergic to things that never bothered me before?

A: Your skin in TSW in simply super sensitive and after withdrawal it will return to normal. That is why allergy testing during TSW is not considered accurate.

Q:Will my eczema come back after I'm healed of TSW?

A: Most likely not, but you won’t know until TSW is done. Then you can determine more accurately what is causing it. And a bit of eczema is much easier than TSA and Steroid Induced Eczema and the damage steroids do to your health.

Q: Is  there a list of doctors that treat TSA/TSW besides Dr. Rapaport?

A: We are working on creating a network of doctors that can treat those going through TSW. In the meantime we recommend that you find a good General Practitioner and take some of our ITSAN resources along.