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!

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

A little break from shedding, but those feet are a real ITCH….

One would think that after 19.5 months of TSW the full-body shedding would have stopped. Completely. NOT! Well, it did from TSW months 6-9, but it came back, steadily increasing to a flurry over the winter months and, finally, this past week we’ve seen a measurable decrease.

It has decreased from about a teaspoon of nightly shedding a few months ago to  1 teaspoon 1 month ago and to about 1/8 teaspoon today. 19.5 months TSW. This is very encouraging, but I won’t put my teaspoons away just yet. 🙂

Measureable shedding started 2 months TSW 12/7/13

Measurable full-body shedding started 1.5 to 2 months TSW 12/7/13  (This is just what was on the sheet in the morning.) 

 

More skin!

More skin January 2014!

 

7/29/14--Chicken Champs!

7/29/14–Summer break from shedding

After no shedding months 8-12,  RETURN of the dreaded measurable shedding at 14 months TSW! 12/2/14

Steadily increasing in quantity to ….

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

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

1/2 teaspoon overnite shedding 18 months TSW 4/15/15

1/2 teaspoon overnite shedding 18 months TSW 4/15/15   (Spoon sizes: 1 tsp, 1/2 tsp)

1/8 teaspoon shedding overnight at 19.5 months TSW

1/8 teaspoon shedding overnight at 19.5 months TSW (Spoon sizes: 1 tsp, 1/2 tsp, 1/4 tsp)

 

And those FEET…well, they continue to be a real ITCH! Dr. Rapaport says itching means healing….

IMG_1533

19 months TSW    5/17/15     Erythema decreased slightly. Multiple excoriations due to scratching.    

IMG_1534 IMG_1535 IMG_1536

 

5/17/2015

5/17/2015

Must be a whole lot of healing going on!  Thank you, God, for fingers to scratch the itch.

“Blessed is the man who trusts in the LORD, whose confidence is in him.” Jeremiah 17:7

To Stop or Not to Stop Topical Steroids for Eczema?

CAUTION: If you have been using topical steroids for eczema, STOPPING topical corticosteroids (TS) completely is NOT to be taken lightly. Find a supportive doctor. If addicted to TS, your body will go into Topical Steroid Withdrawal (TSW), and the doctor can help you treat or manage all the symptoms that come with it.

* TSW symptoms: whole-body redness, burning, stinging, pain, increased itching, red sleeves, swelling, oozing, flaking and shedding copious amounts of skin, hair loss (head and body,) insomnia, temperature dysregulation, fatigue, thoughts of suicide, possible HPA axis suppression and stunted growth in children, and others

* Symptoms often last 24 hours/day and 7 days/week for months to years, with the skin cycling constantly. The pain and itch can be unbearable.

*Function can be severely impaired. Many adults have to stop work or limit work hours. Students often miss school.

* TSW impacts the entire family.

* TSW is NOT easy; not everyone will be able to follow through to the end.

* Some people may go through TSW for several weeks, months, or years and have to return to using topical steroids because the suffering was too unbearable and quality of life deteriorated. There is no shame in this. THAT is just how difficult going though TSW is.

* Having a doctor or other healthcare practitioner who will work with you (whether they believe in TSA/TSW or not) is important so they can monitor your health and help you through any crisis you may experience with TSW, like skin infections and pain management.

*Do your research.

*Make an informed decision. Be prepared for everything that TSW involves. The choice to use TS is yours; the choice to stop TS is yours. Make the decision that is best for you and your health.

*Full recovery from TSW does not necessarily mean “cure” of the original skin condition (for example, eczema.) The underlying eczema may reemerge, but it is nothing compared to the hell on earth that is TSW.

*NOTE: One should never quit systemic or oral corticosteroids cold turkey. These medications must be tapered with a doctor’s assistance.  It is only the topical corticosteroids we are discussing here.

FOR PARENTS: research the medications; read the TS’s patient instruction pamphlets. There are few, if any, long-term studies on the use of topical steroids on young children, and many TS do not recommend they be used on children under the age of 2. You must weight the risk/benefit, follow the drug’s precaution instructions, follow your gut.

For us, taking Brian off TS was logical because the TS stopped working to manage his eczema, and he was only getting worse. Why continue using something that no longer works? Then we found ITSAN and other helpful blogs. Stopping TS was the right thing for Brian, and although he is still going through the later stages of TSW, his function, itch, and skin are far better now than when he was on TS.

I do not regret putting Brian and our family through the hell on earth that is TSW. I do wish I had been more diligent about trying various natural or alternative methods of eczema treatment before using TS.

To stop or not to stop topical steroids? Pray for guidance. You must do what is right for you and your situation, and be at peace with your decision.

Wishing you all the best…..

“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

It’s Easy to Report Your Symptoms from Topical Steroids 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.

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.  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.

That’s what I did when I found out that Brian’s “worsening eczema” was not just eczema anymore. We CAN make a difference.

Thank you!

Please Keep a New Generation of Children from Developing Topical Steroid Addiction and Withdrawal

By donating $1, $5, $10–whatever you feel led to give– to ITSAN.org, we can help ITSAN continue to spread the word about Topical Steroid Addiction and Withdrawal (TSA and TSW) and about the dangers of topical steroids.

ITSAN has helped us as my 11-year-old has gone through TSW. Had I known 9 years ago what I know now, I would never have used topical steroids for his eczema. I would have been more insistent on non-steroidal alternatives and more diligent about using natural remedies that ARE out there.

Not everyone will develop this reaction to topical steroids, but for those who do, it is a long, miserable, itchy, smelly, exhausting, painful road you will wish you had never taken.

In my opinion, the CURE for TSA/TSW is PREVENTION: NOT USING topical steroids in the first place.

PLEASE help ITSAN spread the truth about topical steroids so that parents can make a truly informed decision as to whether or not to use them and risk their child going through this hell that is TSW.

Thank you so much for any amount you can give!    ITSAN.org

Wishing you peace, comfort, and endurance as you battle this beast. You WILL win!!!
Rosemarie

Don’t Let TSW Keep You Down!

Brian is still in the “little” flare (increased at-rest itching, some shedding) that began at the end of July/beginning of August, but he’s not letting it keep him down.

This little 6th grader ran in his first cross country meet on Wednesday 9/25/14!  Actually, it was his very first real race EVER. After 2.2 miles running/racing alongside a good friend, Brian expressed a little disappointment in his finishing time. I had to remind him that he didn’t do too badly, considering he had just started running (for sport) 2 months ago–voluntarily, at that. He just shrugged it off, mumbled something to the effect of, “That’s no excuse,” and ran off to goof off with his teammates.

Heck, I’m just so thankful he can run at all—and sweat without having an incapacitating itchfest– and laugh and play and be a moody 6th grader who can attend school and learn and have fun….and did I mention be a moody 6th grader?

No matter what stage of  Topical Steroid Withdrawal  (TSW) you are in, hang in there. TSW takes a long time, but it doesn’t last forever. You CAN get through this!

Keep the FAITH.
Stay STRONG.
Be PATIENT.
PERSEVERE.

Go the distance, and you will not be disappointed.

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

“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 will rest secure.”  Psalm 16:8-9