Eczema and Topical Steroids–to Use or Not to Use?

Not everyone who uses hydrocortisone or other topical steroid (TS) develops reactions to TS,  topical steroid addiction (TSA,) red skin syndrome (RSS,) or topical steroid withdrawal (TSW.)  These are different terms for basically the same condition. Why does a small portion of the population like Brian develop it? I don’t know. This post is not meant to be a militant, anti-steroid rant–because I am not an expert on steroids–but rather a “be very careful if you choose to use TS, especially on your children” warning from a parent who once rationalized that “thinning skin” was not a bad trade-off for eczema relief for a suffering son. Desperation creates foggy brain.

Having used over-the-counter (OTC) 1% generic hydrocortisone (on myself) for years to combat massive red welts that formed after every mosquito bite, I believe certain topical steroids can be very beneficial and provide great relief when used correctly under close supervision for short periods of time by much of the population. However, no matter which part of the population you are–because you won’t know it until you are in months of agony wondering why your eczema is getting worse–it is best to follow strictly the patient warnings on the label.

How many of you have ever used over-the-counter hydrocortisone for a mosquito or other insect bite or a minor redness or itch? Did you bother to read the patient instructions before applying it? Here is patient information provided with a typical tube of OTC 1% hydrocortisone:
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What are the possible side effects of hydrocortisone? Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Stop using hydrocortisone and call your doctor at once if you have any of these serious side effects: blurred vision, or seeing halos around lights; uneven heartbeatssleep problems (insomnia); weight gain, puffiness in your face; or feeling tired.

Less serious side effects may include: skin redness, burning, itching, or peeling; thinning of your skin; blistering skin; or stretch marks.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. ===============================================================

Hmmm. The list of “less serious side effects” looks awfully familiar. (Can you say topical steroid addiction and withdrawal symptoms?) Would you have used this hydrocortisone if it read: “These side effects can last up to 1 to 2 years, inflicting hourly pain and suffering and causing potential loss of work or school for those who are susceptible to developing these problems”? I probably would have looked for an alternative for my mosquito bites and Brian’s eczema.

Why does the FDA consider these symptoms “less serious”?  Well, if few people report them, then these topical steroids are considered relatively safe. I consider what Brian’s going through a serious side effect. After finding ITSAN, I used the link on their site to report all the TS we used on his skin and all his symptoms.  If consumers don’t report the side effects and reactions, the FDA can honestly say, “We have had few complaints,” and so “Topical steroid addiction (TSA) is not a problem.”   For a small portion of the population, TSA/TSW it is a BIG problem.

According to the National Eczema Association (NEA,) “topical steroids are an important part of the treatment plan for most people with eczema.”  As a parent of a child with eczema who will probably be prescribed TS,  you should educate yourself on TS reactions, follow instructions to the letter, and observe your child for any side effects.  If the steroid is not fixing the problem (eczema, for example) or the problem is getting worse, follow the instructions and stop the medication immediately and report it to the doctor and the FDA watch. If you recognize the symptoms and problem early, you may save your child months or years of misery with TSW later. In January of this year, after getting many complaints, the NEA finally established a task force to investigate topical steroid addiction. YAY!!!

As consumers, we should report all drug reactions to the doctor and the FDA. Doctors are supposed to report drug reactions, but if we don’t tell them, how do they know to report it? If we do tell them, are they going to have the time to report it? So, the best way to get the attention of medical authorities about the real problem of adverse reactions to topical steroid use is to report it to the FDA: MEDWATCHlearn or American FDA MedWatch Drug Reporting Link. (Definitely tell your doctor, too.) These links takes you to the FDA complaint site where you can fill out the necessary forms about the adverse effects you’ve experienced from topical steroids. You can use it for any drug from which you experience adverse side effects.

If all TSW sufferers and caregivers inundate the FDA with complaints of topical steroid addiction and withdrawal symptoms, they have to do something.  ***Remember to keep a copy of your report (hard copy, camera phone, etc.) and follow up with a phone call if you don’t get email confirmation of your report.***

176 days ago, we stopped using topical steroids because they stopped working for Brian’s eczema. He developed these “less serious” side effects: skin redness, burning, itching, and peeling, thinning skin, blistering skin, and he has been experiencing the nasty effects of stopping TS. Even though this withdrawal period is very painful, itchy, exhausting, frustrating, miserable, and pure hell for Brian and us, stopping TS was the right thing to do. I’m glad we caught it early because if you or your child is susceptible to TSA, the longer you are on TS, the longer the withdrawal and recovery periods tend to be.

There are a few highs and many low lows on this journey, but one day it will be over, Brian will be healed, and, hopefully, we’ll be better people for it.

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior.”  Isaiah 43:2-3

Take Care of Your Eyes

Tuesday turned out to be a really good day for Brian. He made it to school by 1:15pm, took an SOL, went to class, went to the pediatrician, and had a milder-itch, active evening. After a scratch-filled night though, yesterday was a different day. He was pretty fatigued, slept until 1pm, and after much trauma and drama was finally ready to go, just in time to make it to the eye doctor. We both had appointments: his are for prevention and to be proactive, mine for progressive myopia and astigmatism.

According to Dr. Fukaya, people with atopic dermatitis can develop certain eye problems namely: cataracts, retinal detachment, conjunctivitis, keratoconus, and glaucoma. This is a good article to read, copy, and bring with you to your eye doctor if you have atopic dermatitis or are going through topical steroid withdrawal (TSW.) The eye doctor was  amazed and interested that we were not giving Brian any medication (steroids), topical or oral, for his eczema, so I talked about TSW, and he said, “Hmmm.” I plan to give him a copy of Dr. Fukaya’s eye article for his reading pleasure.

Well, Brian had 20/20, and eyes were fine.  I, on the other hand was reminded once again what I have in common with potatoes:  we have eyes but can’t see.

“Be joyful in hope, patient in affliction, faithful in prayer.”  Romans 12:12

Symptom and Treatment Update

This is what I woke up to as I left for work early Sunday morning:

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Yep; that was our mailbox. Second time in 8 days. We’re leaving it just like this in protest. In the meantime, I’ve got the mail on hold for a while until we decide what we want to do, so if you are mailing us something, you can expect a response sometime in early April.

On a GOOD note, today is 171 days off topical steroids for eczema! Last night, Brian actually slept from 12:30am to 4am, awakened by some hard scratching for a few minutes then back to sound sleep til 6am for heat, ice pack for hands, coconut oil to itchy feet, and assist to get that pesky back. YAY! Still sleeping soundly, and it’s 10:15am. Maybe the atarax worked this time.

We go to his pediatrician today to get medical clearance for next week’s dental procedure and to get an extension for his homebound/interim homebound care plan. 171 days off of topical steroids for his eczema and the past few days have been–dare I say it?–not too bad. It could be worse, and we have certainly seen and heard worse.

Here are his current symptoms/problems and our methods of dealing with them. All of the treatments work some of the time; none of them work all of the time, except ice for itching. If you can tolerate an ice massage with an ice cube to the itchy part, it works great. Just watch out for frostbite.

as of 3/25/2014:

1. IMPAIRED SLEEP—(roughly 4 out of 5 nights) Itch fests from 9:30pm-3am. Up scratching at 5:30am, sound asleep after 6am. Still with inconsistent, broken sleep but has had a few nights of 3 hours straight, sound sleep; gradually improving

RX: Ice, heat, coconut oil, acupressure, deep breathing, parent physical assists with scratching, calming music, 4 tsp atarax; Sleep until he wakes at 10am, 11, or 12pm. Homebound Instruction and homeschooling. REST the body to allow it to heal.

2. ITCHING–has gotten worse in intensity especially during itch fests

RX: ice cubes and packs, heat packs, coconut oil, acupressure, deep breathing, parent physically assists with scratching, Microsilk tub bath, oatmeal bath, apple cider vinegar, Buzzy, Benadryl, Zyrtec, 3-5tsp Atarax prn, Aquaphor/petroleum jelly, Prid, Fukaya skin repair liquid. Activites for distraction: ping pong, BBs, archery, baseball practice, active play (still scratching, but not as furious,) x-box, I pad games, etc.

3. BURNING/STINGING, SENSITIVE SKIN–Improved with decrease in frequency and duration, but skin is still sensitive with clothing, towels, etc.

RX: moist heat, deep breathing, massage of affected part, ace wrapping, coconut oil/Aquaphor/petroleum jelly; Fukaya skin repair liquid

4. LACK OF FOCUS/CONCENTRATION due to SCRATCHING/ITCHFESTS

RX: Parent assists with itch management/scratching while Brian sits and tries to do school assignments and other seated activities

5. MENTAL/EMOTIONAL—Emotionally labile, always apologizing

RX: lots of hugs; constant reassurance; positive music, language, laughter; tough love; participate in activities with friends and practice with teammates as much as possible

6. PHYSICALnot yet back to normal strength and endurance, but improving

RX: Get outside to participate in baseball, play with friends, run around, as much as he is able during the hours he is awake. Regular school/afterschool activities as tolerated. Progress again to ½ days of school, and progress to full days as tolerated.

When Brian was feeling better, 2 past attempts at doing school ½ day resulted in several-week flare ups. This time, he was able to do 3 half days (3/19, 3/21, 3/24) without significant decline in function, though increased itching and splotchy red areas were noted toward end of the day.

OTHER:

a) SKIN TEXTURE: Pebble-grained texture of dorsum of hands and feet and fine sandpaper texture of arms and legs. Skin texture of entire back constantly fluctuates between soft and smooth as a baby’s butt to pebble grain texture, with or without redness, sometimes within 30 minutes. Dry skin, peeling/flaking especially elbows, anterior knees, heel cords, scalp

RX: Bag Balm to heel cords and any very dry, cracked spots on feet/hands; T-gel shampoo for scalp; moisturize within 3 minutes out of tub/ shower

b) SHEDDING– 1-2 Tablespoons dead skin on sheets every day and shedding throughout day

RX: Shaking out sheets, bedding, clothes 2-4 x per day and washing daily; moisturize or not with coconut oil, petroleum jelly, aquaphor, Fukaya skin repair liquid

c) EDEMA/OOZING: mild edema in hands, feet, and occasionally face. Oozing phases last only a few days and with minimal breaks in skin.

RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; wrap (arms/hands ) if needed with DSD (dry sterile dressing) and ace wrap

d) BREAKS IN SKIN due to scratching–Much less severe now

RX: Microsilk tub bath 1-2x/day, shower, file nails nightly to the nubs, wash hands, keep cuts clean, Fukaya skin repair liquid, DSD if needed, oral antibiotics when skin infection present

 

 

More Pics Day 171

Here are some pictures of Brian coming off of this recent mini-flare up.  The red marks on his knees and legs are from his scratching the living daylights out of them for 5-10 minutes straight during the day–and that is a short itchfest. His skin is getting stronger because a few months ago, that kind of scratching would have left a bloody mess, literally.

 

Brian was born so hairy that I figured he started that part of puberty in the womb: back, legs, arms, and thick head of hair. Hair loss with TSW is common, and he lost hair on his legs, arms, eyebrows, and head. The thinning hair is more evident here after a haircut; or maybe it’s just a bad haircut….

 

The hallmark “red sleeves” of TSW are fading, and that stubborn right elbow is looking good today. Hands and feet are still somewhat edematous (swollen,) but his neck and facial skin have, thankfully, remained mostly intact these past few flares.

 

 

 

 

 

 

Finally Some Sleep!

“Rejoice in the Lord always. I will say it again: Rejoice!”  Philippians 4:4

I can’t believe it’s already midway through March, and I totally missed the first day of Spring! They say Spring is a time of renewal, rebirth, the miracle of new life from the deadness of Winter. Well, we’ve had our mini-miracle last night: Brian slept four hours straight and, after a short scratch session, got an additional 3.5 hours of light–sound sleep, before waking for the day. He had very little disruptive scratching last night, which has not happened in a while.

We’re definitely thankful for his getting sound sleep and being able to get up before 1pm. Hopefully, this will be an upward trend, but we know that another flare (and decreased function) can be as close as a day, an hour, a minute away. I don’t say this to be negative but to acknowledge that with TSW recovery, there will be lots of flares and breaks. You tough it through the bad times, and rejoice in and focus on the good times. This is one of those good times. PTL! Trust that more will come your way.

Now that Brian and my husband are out playing ball and enjoying the beautiful day, it’s time for me to get some exercise.  I call it “aerobic housework.” 🙂

Happy Day!

After a scratch-filled sleepless night and rough start to the day, Brian ended the week on a good note. He was able to go to school for half day today and did not have to use his heat pack or ice packs for the itch!  In addition, his face/neck looked no worse than when he left the house a few hours earlier. Previous attempts at half days resulted in a red, splotchy, scratched face/neck and a look of distress and exhaustion on his face. Then he would have a major flare in the evening and not be able to try again for several weeks. This time, he was able to hop on his bike when we got home and drive up and down the street, enjoying the nice spring afternoon and minimal scratching. PTL!

Then, he had enough energy to practice pitching and throwing, eat dinner, finish off a box of Girl Scout cookies (with a tiny bit of help,) and do homework with x-box breaks in between subjects. Thank goodness for dad.

I am grateful for the day, but I’m not sure how the evening will end. So, while they are taking their x-box break, I’m going to catch a nap before my night shift begins….

“Trust in the LORD and do good.”  Psalm 37:3

Pictures

Today is 167 days without topical steroids. Here are some pictures from the most recent flare up. The stinging has subsided, but the itching has intensified, especially on the dorsum (tops) of Brian’s feet and today increased itching of both thighs, especially inner thighs, and both legs. Even though his skin is stronger, it can tolerate only so much and is bound to break down after several hours of scratching and re-scratching.

On a good note, the appearance of the flares aren’t as bad as they used to be: fewer cuts, less “glaring redness,” less oozing through cracked skin, less need to wrap. Yay!

CLICK ON PICTURE TO ENLARGE.

This is what Brian’s flares looked like in fall 2013.