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.
  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.
  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.

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

    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

2/1/16  Morning

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1/30/16

1/30/16  Night time

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1/30/16 night time

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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!

 

4 thoughts on “28 Months TSW

  1. Hi Rosemarie
    I’m quickly adding this comment as I’m leaving the house in a rush – I’m wondering if using emolients at this stage increases dryness of the skin. Only because oliver won’t use anything – he refuses to because he thinks it makes things worse? What do you think?

    • Hi Rita,

      At our boys’ ages, they know what feels good or bad for them. Brian won’t do without sunflower oil/coconut oil after showers, but he doesn’t like putting them on during the day. Everyone’s different and the skin’s needs change over time whether you’re going through TSW or not. What works for one person may not work for another. I have not done enough research to provide more than my observations and experiences with Brian, my own skin (diffuse systemic sclerosis), and wound care patients I’ve treated in the past.

      I’ve always believed you assess the skin and treat according to what it needs, taking into account the child’s preferences–moisturizer or none. (However, preventing and treating skin infections is not negotiable.)

      If Oliver’s skin is not infected, he’s functioning well (skiing in France!), and he doesn’t think moisturizer helps, enjoy the extra money you save from not having to buy moisturizers! 🙂

      Take care,
      Rosemarie

  2. Thank you for continuing to post updates on Brian! It is so encouraging 🙂 Its especially helpful for many of us at the beginning stages of going through TSW. I care for my daughter who is 14 years old and currently about 2 months in TSW. I did a lot of research before we started but, as you know, there is so much about TSW to stay on top of. She is still managing to go to school but its not without struggles. At the moment we have requested a leave of absence at her private school but we have not been granted the leave at this point. When she was little and at a public school we applied for a section 504 and received it which was helpful. Once we sort out her school situation for next year, I’ll be sure to continue to refer to your blog for information and support!

    Thanks!

    • Hi Sandy,
      I hope you have a supportive doctor and an understanding admin at the school. TSW is tough at any age, but teenagers have another world of teen issues added to the challenge of TSW. God bless your daughter! It’s a long journey but worth it in the end. Brian’s skin may never become eczema-free and we’ll continue to treat it appropriately, but at least he’s doing so much better now compared to when he was using topical steroids. They were effective for a while, but when the medication stops working, we need to let it go.

      Thank you for your comments. Praying for peace, strength, endurance, and healing for your daughter!
      Rosemarie

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