Put a Face on Topical Steroid Withdrawal and Red Skin Syndrome!

Any medical practitioner who won’t even consider the idea that the skin/body could possibly be reacting to topical steroids (whether time used is short or long) is not a good fit for people like my son and all the others on the various topical steroid forums. In many instances, use of topical steroids is very helpful, and short or sporadic long term use of topical steroids may be fine/safe for most of the population. However, for a handful of the population–for whatever reason–topical steroid use has resulted in what you all are experiencing now.

Medical practitioners should not just blow us off just because “Red Skin Syndrome” and “Topical Steroid Withdrawal” are not in the official diagnosis book. The symptoms are obvious, and they are real. Look at the topical steroid label. Call it side effects of topical steroids; call it adverse reactions to topical steroids; do not call it just “really bad eczema” and throw more and stronger topical steroids at it. Ignoring the concerns of your patient and prescribing the same treatment over and over again without even considering that it may possibly be causing the reactions seems negligent, to me.

DON’T GIVE UP, people. Keep talking to doctors and pharmacists, keep educating those around you, keep showing your face, hands, legs, and skin in public! Let’s put a FACE on topical steroid withdrawal/red skin syndrome!!! You are not crazy!!! It wasn’t too long ago that cigarettes were thought to be harmless….

Patience, perseverance, prayer….and when needed, petroleum jelly…. (unless you’re doing MW :wink:)

Ten Months Free of Topical Steroids!

“Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge him, and he will make your paths straight.”
Proverbs 3:5–6

Trusting in God and acknowledging him always during this 10+ months of eczema and topical steroid withdrawal (TSW) has helped us make it through and actually live rather than just exist during this painful, itchy, exhausting ordeal. If it were not for our faith and the prayers and support of family and friends, our experience may have been much different. Certainly, Brian probably would have healed eventually anyway because that’s the nature of TSW, but the scars he would have taken away from this experience may have been more than just physical. I am thankful for the lessons learned and the healing that has happened thus far on Brian’s road to recovery, and we trust that Jesus will continue to be with us–encouraging us, supporting us, carrying us, and loving us– every step of the way!

Don’t go it alone.  If you or your child or spouse is undergoing red skin syndrome or topical steroid withdrawal, don’t hesitate to get support from family, friends, priest or pastor, ITSAN or ITSAN Forum, or other TSW blogs. With TSW, this misery needs company!

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SOOOOO, where have my ramblings been these past few weeks? Locked in my head as we traveled, waiting for me to get access to a computer to blog on since other electronic devices were a bit problematic for me.

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7/27/14   Brian is in the front row with the stripe on his pant leg.

It’s nice to go on vacation, but it sure feels good to be back home. We just got back from  Florida where Brian and his baseball team played in a tournament at ESPN’s Wide World of Sports Complex near Disney.  We also made a side trip to South Carolina and were able to visit half of our family. (Hope to see you next time, MC!)

It was 10 days full of hot and humid weather, good baseball, lots of pool time, theme park rides (and lines,) late nights, early morning wake-ups, and fun with family and friends. Brian had a blast, and my husband and I were so very happy for him.

7/29/14--Chicken Champs!

In the pool after a game   7/29/14  Chicken Fight Champs!

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Aaaarrrgh! 7/30/14 Universal Studios

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Turkey leg, anyone?

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Sea World    7/31/14

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Last evening in Florida 8/1/14

During this vacation, Brian had a slight increase in scratching–SS 2+/5 to 3-/5–compared to 1/5 to 2/5 (See LOG for Scratch Scale)— probably because our diet went on vacation too. We ate an increased amount of sugar, milk, and gluten in the form of donuts, ice cream, soda, grilled cheese sandwiches, chips, and other “fun but deadly” foods that we had successfully been avoiding prior to to our vacations. We had hardly any green nutrition, unless you count trident spearmint gum (green packaging.)

It seems like the food was the culprit, but maybe it’s just one of those mini-flares. Not a big problem, though. At least Brian didn’t revert back to uncontrollable itchfesting. His skin tanned during vacation, and there are lighter areas where he scratched the tan off when he did get itchy, giving his skin a mottled appearance.

How can we say he is getting better? With TSW, you can get so caught up in how the skin looks or how much itching there is that you can overlook the other healing that is also happening. It may be many more months before Brian’s skin is fully healed from the damage done by topical steroids, resulting in itching that flares, calms down, and flares again many times. If all we focused on is “When will his skin/itch be better?” we would be disappointed a lot. So, with Brian, we try to look beyond the itch and skin and focus on the improvements in his function, sleep, energy, and emotional state. The skin will heal when it heals.

How did he do? His function and sleep was “11-year-old-boy-at Disney” normal, and he had lots of energy and did not miss out on any sweating, fun, food, or activities.  As we have done in the past month or two, we used ice only for drinks and not for itch/scratch management. YAY!  I can get used to this. 🙂

Today is Brian’s 306th day off of topical steroids. I added some body part pictures to the “Pictures Then and Now” page.  Because of the mottled skin and possible flare, one may think, “It’s gotten worse.” However, as Brian said after looking at his pictures, “It may look bad, but it (skin) feels really good now,” then he ran off to play.

Current Treatment:

1) Vitamins/supplements to address gene mutations (B complex, molybdenum, glutathione, vitamin D3, magnesium, and zinc)

2) Apply coconut oil occasionally to itchy or dry areas

3) Get 7-9 hours sleep at night and plenty of sunshine, exercise, and active play

4) Stay hydrated

5) Experimenting with trying to cut down or cut out gluten, sugar, and dairy

Ten months after stopping topical steroids, Brian
1) is doing everything he used to do prior to TSW;
2) is getting 7-9 hours of sleep at night;
3) is sleeping more soundly; 
4) has a more “normal” body clock or sleep-wake cycle again; and
5) is scratching and shedding less.

One day, God willing, the itch/eczema may go away for good, and beautiful skin may follow. If not, I am still at peace with the progress Brian has made, and I am thankful that, in the ways that matter to me, my “little” boy is back! PTL!!!

Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.”  2 Thessalonians 3:16

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Skin-wise, one major improvement that Brian can see and feel has been in his feet and ankles: 99% less itchy, fewer cuts, and decreased swelling.

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NOW: 8/6/14   Less swollen (veins visible), hair has returned, fewer cuts, hardly ever itchy

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THEN:  5/14/14   Slightly edematous, hair just emerging, constantly and insanely itchy–>multiple cuts from scratching

 

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NOW: 8/6/14   Right ankle

3/11/14  Right ankle

THEN: 3/11/14   Right Ankle, hairless leg, cracked and flaky skin

8/6/14 Left Ankle. Stubborn dry spot that Brian likes to scratch and pick at...

NOW:  8/6/14  Left Ankle with stubborn dry spot that Brian likes to scratch and pick at…

Left Ankle 4/2/14

THEN: Left Ankle 4/2/14–both looking better than in March

FOR MORE PICTURES, CLICK PICTURES Then and Now