Report your Topical Steroid reactions to the FDA

PLEASE, PLEASE, PLEASE report to the FDA any adverse reactions you may have or have had from topical steroids, non-topical steroid medication, or other medications you have tried for eczema. (Of course you should also tell your doctor of these reactions.)

Per the FDA, “bad side effects” include new or worsening of symptoms. Sound familiar? Tell them about the burning, stinging, increased itching, redness, oozing, shedding, swelling, insomnia, temperature dysregulation, hypersensitivity, fatigue, elephant skin, thinning skin, loss of function, loss of work or school, etc. Look oat the “side effects” listed on the patient information inserts. Have you experienced any of those side effects? They need to be reported. The only way doctors know what happens after we leave the office with these medicines is if we tell them and if we report the reactions to the proper authorities.

If you have stopped using topical steroids (TS) and are going through topical steroid withdrawal (TSW), list the signs and symptoms BEFORE stopping TS, then list the signs and symptoms AFTER stopping TS. Make sure to identify before and after, even if the signs and symptoms are similar.

They need to hear from more of us! All of us!

FDA Medwatch: http://www.fda.gov/Safety/MedWatch/

Remember to save, make a copy, or take a picture of your report, and follow up with a call to the FDA line –(855) 543-3784 toll-free, or (301) 796-3400– if you do not get email confirmation that they received it.

OTHER:
Canada: Canada Vigilance Online Adverse Reaction Reporting

New Zealand: New Zealand medicines and medical device safety authority

UK: UK Yellow Card Drug Reporting Link

That’s what I did when I found out that Brian’s “worsening eczema” was not just eczema anymore. Make our kids’ suffering count for something. Report your experience. We CAN make a difference!

Thank you!

TSW Update: 26 Months Free of Topical Steroids

December 6, 2015 marked 26 months since we stopped using topical steroids (TS) for Brian’s worsening eczema and deteriorating health. Throughout topical steroid withdrawal (TSW) and our attempts at using various alternatives to TSW eczema/itch management, Brian’s pediatrician has been supportive. I thanked him for working with us and not belittling or disrespecting us as other doctors have done to other parents of children going through TSW. He said that his main goal is to have a child be able to live, play, have fun, and do all the things children are supposed to do; whatever route that entails does not matter as long as it works for the child. Thank God for good docs.

Current function
Energy and activities–Running, jumping, laughing, playing, and getting cuts, scrapes, and broken bones like a normal 12-year-old boy. Finished strong in travel baseball and cross country. Playing basketball for the winter.

School: Stays up way too late but manages to get up every morning to walk to the bus stop with friends–even in 30 degree weather. Picking up where he left off last year, he made straight A’s on top of all his activities and despite the eczema/TSW spectre. We’re very proud of our TSW warrior for his perseverance and attitude through the toughest of times. Give yours an extra loving hug today!

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Cross country (Brian 2nd from left)

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Feet still intact 12/2/15

But return of the full-body, measureable shedding of skin and…IMG_1921

plasticky elephant skin! IMG_1932

Challenges: Fall and Winter weather wreaks havoc: increased dry, flaky skin, makes skin itchy. Return of full-body, measurable shedding of skin. At night, one can palpate the heat emanating from his body and a dampness in the sheets like the oozing days of old, but not full-on ooze. More like sweating with the slight scent of ooze.

Scratch/Sleep: Compared to Summer, the frequency of scratching this Fall has increased: 0/5 to 3/5 during the day and 0/5 to 3-/5 at night, with or without erythema. Sleep is disrupted during the night again, general between 2 and 3:30 am due to scratching or being cold, and some nights he does fine. I just reapply the balms and oils and he falls right to sleep. Then I go on the computer to do more writing and researching.

Skin quality: varies from looking good with normal color to dry, flaky eczematous areas or head to shin (basically full-body) patchy erythema with dry shedding skin. This skin change can happen day to day or within 12 hours of each other. There are fewer regular scratches on skin. Tough areas are shoulder blades from night scratching.

Still TSW or just eczema now? Only time will tell, but to me, the elephant skin, full-body shedding, and ooze-related dampness indicate that TSW is not totally done; better, but not over yet. The eczematous symptoms, themselves, do seem seasonal, though, when I compare Log entries from October-December 2014 to the skin events October-December of this year.  It’s incredible how similar they are, even to the time of onset! And so we march on….

Current treatment
1) Prayer and thanksgiving
2) Skin care
Moisture maintenance: daily shower or bath, pat dry, immediate application of coconut oil to face, neck, trunk and the Home Apothecary’s lemongrass balm or breezy balm made specially for Brian by Stephanie. Same moisturizers after school, at bedtime, and during the wee hours of the night.
Infection control: periodic ACV baths (apple cider vinegar with “the mother”) or microsilk tub baths; application of mupirocin on open cuts if needed; lemongrass balm
Itch/scratch management: File nails to the nub; moisturizers above; itch-b-gone spray; ice packs; accupressure points, deep breathing and CBT techniques (cognitve behavior therapy). Recently started using a humidifier in his room at night due to humidity level less than 40%, which is extremely drying to the skin
3) MTHFR/Vitamins/Supplements–inconsistently taking b complex, vitamin D3, Zinc, NAC and 1/2 tab glutathione
4) Diet–not as good as it could to be but at least drinking water regularly

TSW is a rollercoaster ride through hell, but as with all rollercoasters, it will come to an end. Thankfully, we have met some incredible people along the way, and the strength that we’ve gained and the lessons we’ve learned will be beneficial to us and to others one day. Beyond the itch, life is good.

Have a blessed Christmas and a TS-free, Happy New Year!
Rosemarie

“I will restore you to health and heal your wounds” declares the LORD.
Jeremiah 30:17

Topical Steroid Withdrawal in Children

The peer-reviewed, revised version of “A Systematic Review of Topical Steroid Withdrawal in Children Diagnosed with Eczema” replaces my original manuscript submitted to Dove Press Medical in June 2015. My “Response to Reviewers” is published here so you can see reviewers’ comments and my responses and amendments to the paper.

After some revisions in response to reviewers’ comments, they chose not to publish it because they felt “there were no articles to support the inference that topical steroid withdrawal (TSW) can occur in children” (THIS was the point of the paper: there is no research on TSW in children, and research needs to be done because children are suffering), I will publish it here and make it available to the public in the hope that someone will accept the challenge to think outside the topical steroid box and study Red Skin Syndrome/Topical Steroid Addiction and TSW in children. Prevention, early detection, and treatment ARE possible, but the blinders must first be removed.

Keep sharing your pictures and your stories! Keep educating others and save someone’s skin!

“It is God’s will that by doing good you should silence the ignorant talk of foolish men.”     1 Peter 2:15

23 months TSW and back to school 2015

You know you’re a TSW-obsessed mama when your child’s 1st-day-of-school pictures look like this:

First day of 7th grade 9/8/15. Have a GREAT year, Brian!

“A longing fulfilled is a tree of life.” Proverbs 13:12

705 Days Free of Topical Steroids! The TSW Journey continues…

As a last salute to a summer that went by way too fast, we took a cruise with some friends to the Bahamas and visited my mom and family in Charleston for 8 days of sun, food, and fun. I decided to leave my militant TSW rituals at home for the week to see how Brian’s skin and scratch would fare (see Log dated 8/30/15). Maybe it’s just a summer thing–like last year–but his skin got better and his scratching was no worse despite heat, sweat, sun, and water. See pictures dated 8/27/15. It was a nice vacation from our TSW routine and “itch-think”, and Brian spent all his waking hours playing ping pong, eating soft serve ice cream, and having a blast with his friends.

We’ll continue the experiment of no vitamins/supplements while monitoring energy, function, skin, and scratch. Hopefully, we’ll be able to discontinue the daily vitamins and supplements (which is like pulling teeth to get him to take anyway) which will simplify our routine.

TSW is very unpredictable, especially in the later months like 22 and 23+ months out. You think you’re finally done with the cycles and are healed, then BOOM! the full-body symptoms are back again, as if you were in the horrific early months of TSW. For this reason we are thankful for any and all good skin and itch times.

October 2015 will be Brian’s 2-year anniversary of stopping TS. Beyond the itch, he has definitely come a long way. Praying for strength, endurance, perseverance, peace, and healing for all TSW infants, children, adults, and caregivers. Never lose hope!

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint.”  Isaiah 40:31

Sunset in the Bahamas 8/26/15

Sunset in the Bahamas from the highest deck on the ship (taken by Brian) 8/26/15

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8/26/15   Paddle boarding in Freeport 

Paddle boarding without a paddle in Freeport, Bahamas 8/26/15

Paddle boarding without a paddle 

Ping Pong on the beach

Ping Pong on the beach

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God’s gift of good friends

TSW Champions Beyond the Itch

Brian and his team, the Virginia Breeze Elite, competed in their final 11U tournament of the 2015 season: the Triple Crown Summer Nationals in Myrtle Beach, SC. During the week, the temperatures were in the mid to upper 90’s and the humidity so high it was stifling. One day the heat index was 108 degrees, yet the boys played on, and Brian’s skin and itch were not an issue. They went undefeated, battling back through games that should have knocked them out of the tournament. Brian played in one game that lasted 9 innings, after a score of 0-0 in 6 innings of phenomenal play by both teams!

Whether you are in the horrific early stages of Topical Steroid Withdrawal (TSW) or in the later stages, wondering if it’s still TSW or now “just eczema,” don’t lose hope; don’t give up! Focus on the life beyond the skin and itch, and–itch or no itch–live each moment to the fullest. Faith. Patience. Perseverance. Victory will be yours!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016!

In winning the Triple Crown Summer Nationals in Myrtle Beach, the Virginia Breeze Elite finished the season 42-1, taking home 7 of 7 11U championships in 4 states, besting teams from Ohio, Delaware, Maryland, NC, VA, Georgia, and Venezuela. Next goal: Cooperstown 2016! (Brian is in the front row, last on the left.)

“Thanks be to God! He gives us the victory through our LORD Jesus Christ.”                     1 Corinthians 15:57

How to see progress at 21 months TSW when healing seems stalled

If you are just starting TSW or thinking about starting TSW, please read this and this  carefully. Also, you may want to refer back to the March 2014 Log entries and posts for pictures and information that may more closely reflect your current position in this TSW journey.

For those nearing the 18 month or 2 year mark, you may understand what I’m sharing. Brian started this journey as a 10 year old, and he is now 12. We are going on Brian’s 21st month free of topical steroids (TS), and he is 125% physically and functionally back to normal, no longer needs benadryl/zyrtec, can pretty much sleep through the night, and has not had an infection requiring antibiotics in nearly 2 years. However, the recovery from TSW, in terms of “come and go” full-body skin signs and symptoms if itch, rash, and shedding continues. This makes me feel like last year was better.

I remember June-August 2014 (months 8-10 TSW) being a huge breakthrough: clear-skin, itch-free, shed-free, and sound sleep for Brian–especially the month of July. A three-month span of incredible normalcy which we had never experienced since he was 17-months-old. And now, July 2015, though the shedding finally slowed again, he continues to scratch periodically during the day and some at night, occasionally waking–not too long– because of the itch, and his skin is marked with scattered scratches and sporadic erythema or rashy areas. Then the next morning, it doesn’t look as bad as it looked the night before, and I think, “His skin and itch were so much better last year!”

SO, I go back to read my blog and log entries for this time last year and compare them to now, and this is what I found regarding skin and itch:

MONTH/YEAR             SCRATCH SCALE (grossly throughout the day)
July 2014                     Generally 2/5 to 3/5 then <2/5 towards end of July 2014

July 2015                      Generally 1/5 to 2/5 and more days with episodes of 0/5 to 1/5
                                      lasting 1-4 hours at a time. Occasionally a 3/5 episode at night.

Lesson for me: my memory sucks and I shouldn’t rely on it! Thank goodness I made a scratch scale, took pictures, and wrote down descriptions of Brian’s signs and symptoms, documenting his treatments and progress. Otherwise, today I would have nothing but distorted memories with which to compare his current condition, and I’d feel like minimal progress has been made. Overall, the itch and scratching episodes have decreased in intensity, frequency, and duration. This year is better than last year.

Lesson for you: Document. Take and date pictures. Use objective measures so when you feel like nothing’s happening, you can look back at your data and see just how far you’ve come.

Get a supportive doctor. Stave off infection. Treat the symptoms. Scratch sensibly. Be patient. Give thanks. Keep the faith. Beyond the itch, healing does happen!

“I can do all things through Christ who strengthens me.” Philippians 4:13

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July 13, 2015   DAY 647  Pictures after return from SD. Used QD light moisturizing with coconut oil on torso/face and Stephanie The Home Apothecary’s Breezy Balm on extremities.

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The pictures above are after recovering from a several-months-long flare involving return of lower extremity red sleeves, night scratch-waking, and teaspoons of shedding.

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Less than 1/16 teaspoon shedding. Compared to 1/2 and 1 tsp measuring spoons.