28 Months TSW

Twenty-eight months after stopping topical steroids (TS), how can you tell the difference between topical steroid withdrawal (TSW) and “just eczema”? We in the TSW community ask this all the time, as do some dermatologists and other doctors who can’t believe that TSW could last so long. I agree: How in the world could TSW possibly last this long!?!?

That’s why we’re asking dermatologists and researchers to study TSW in children and adults who are going through this lengthy withdrawal-healing process. They could gather lots of valuable information from the TSW support pages, pictures, and blogs and interview the affected adults and caregivers of children who are going through TSW. From this they could create a picture of this iatrogenic condition and formulate hypotheses on which to conduct more formal research.

I’m not complaining, mind you, or saying, “Woe is me (Brian),” because Brian pretty much has his life back, and skin care and itch management is part of our routine. I just want answers.

My questions to doctors and researchers who believe TSW is just eczema are these:

1. Does eczema cause full-body, visible, measurable flaking and shedding of skin? TSW does. The pictures below show just the skin that shed overnight.

   

   12/2/2015

   

   7/18/15 less shedding!

   

   5/25/15 Shedding less than 1/4 tsp

   
   

   

   Almost 1 teaspoon at 15 months TSW 1/10/15

   

   1/2/14 More skin!

   

   12/7/13 Shedding on bedsheet in the morning.

   
   
2. Does eczema cause full-body erythema/flushing at one moment then return to normal-colored skin the next, then back to flushing again? It still happens now–28 months after stopping TS.

   

   1/30/16

   

   1/21/16 7:25am

   

   1/6/16 10:15 pm Wet wrapping the hands and wrists with water before bed to try to keep skin hydrated; blanchable erythema

   
   

   

   8/6/14

   

   Jan 10-11, 2014

   

   November 28, 2013 Start of the oozing, red volcano phase

   
   
3. Does eczema result in plasticky “elephant skin”? It happened early in TSW and it’s happening now, more than 2 years after stopping TS.

   

   TSW symptoms

   

   Pustules are gone but the elephant skin of TSW is back

   

   elephant skin back 2/8-2/13

   
   

   4. Does eczema result in “red sleeves” in  arms/wrists and/or feet/ankles? TSW does.

   

   1/13/16 faint red sleeves at the wrist

   

   July 18, 2015

   
   

   

   3/3/14

   

   November 30, 2013 “Red Sleeves” Redness stops at palms–classic symptom of topical steroid withdrawal

   
   

   

   1/11/16 8:46pm demarcation between erythematous top of feet and white soles; “red sleeves”

   

   5/1/15: demarcation between erythematous dorsum of foot and white sole.

   

   5/1/15

   
   

   

   

   November 30, 2013

   

   November 30, 2013 Red sleeves

   
   

   5. Does eczema result in heat radiating from the body at night like and TSW-ooze-smell sweating? Still going on most nights.

   So, if these signs and symptoms are not TSW and not eczema, what is causing this continued manifestation of signs/symptoms that were present in the early months after stopping TS? Is it just the long-lasting adverse effect of TS use?

   AND if doctors and eczema researchers have seen eczema that presents like signs/symptoms 1-5 above in their patients, are those patients using topical steroids? If so, then how can one definitively say that these signs/symptoms in the patients were NOT caused by TS?

   Food for thought and questions to ask your healthcare provider next time. . . .

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Life after eczema herpeticum. . .Getting through the challenges of Winter weather… Spring is right around the corner…Current regimen/treatment follows the pictures below…Don’t let TSW keep you down!  Look Beyond the Itch!

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken. Therefore my heart is glad and my tongue rejoices; my body also will rest secure.”                        Psalm 16:8-9

2/1/16  Morning

2/1/16

2/1/16

2/1/16

2/1/16

2/1/16

2/1/16

1/30/16  Night time

1/30/16

1/30/16 night time

1/30/16

Goals: To keep the skin clean, hydrated, and infection-free; itch/scratch management

Treatment: Twice a day shower/bath followed immediately by application of either coconut oil, sunflower oil, or lemongrass balm/Zinc balm combo or a combination, depending on the condition of the skin. Wet wrapping (WW) both ankles and tops of feet at night with filtered water and dry sterile dressing; WW wrist and hands as needed if they are excessively dry or have open areas.

Vitamins: B complex, 4000 iu D3, Zinc, 2 Nordic Naturals fish oil capsules

Itch/Scratching: varies between 0/5 to 2+/5 scratch scale (see Log), stress scratching; benadryl PRN, ice packs, moisturizers (sunflower oil, coconut oil, aquaphor, and/or The Home Apothecary’s lemongrass balm), itch-B-gone spray; deep breathing and relaxation techniques, CBT, acupressure points

Function: Excellent! All A’s in honors classes, playing basketball, practicing and conditioning for baseball, x-box, RC cars, able to get up and ride bus to school with friends.

Look Beyond the Itch!