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.
