NEA Questions for TSA

“Although topical steroid addiction or red burning skin syndrome had been mentioned as possible side effects of topical steroids in a 2006 review article in the Journal of the American Academy of Dermatology, no statement was made regarding this illness in the new guidelines (2014). This suggests that there are still controversies regarding this illness.”

This review, written in Japan by many dermatologists, brings up important points regarding TSA and how it is being discussed and misrepresented in the dermatology field.

The NEA, National Eczema Association, had many questions that these dermatologists answered truthfully.

1. How do you define steroid addiction?

The review went into a brief history of where the term “addiction” was first used (Burry, 1973), as well as other doctors whom researched this phenomenon. The conclusion: “TSA is the situation where skin develops more severe or diverse skin manifestations after the withdrawal from TCS than at preapplication.”

2. What are the clinical findings of steroid addiction?

They felt that clinical findings should be described separately before and after withdrawal. Before withdrawal, skin may be more uncomfortably itchy and show signs of the TCS (topical corticosteroid) not working as well as before. “Dermatologists often explain pruigo as a chornic and difficult-to-treat type of eruption seen in patients with atopic dermatitis. However, it is often a sign of addiction.”

After withdrawal, the initial erythema often spreads to other areas day by day. This eruption also spreads to places where topical steroid use may not have been used. There is a range of cases, spanning from mild to severe. After the initial rebound period, the next phase is usually dry and itchy with thickened skin. “The addicted skin becomes normal as time passes, and the increased sensitivity after withdrawal decreases. The entire course can take from weeks to even years.”

3. What do the skin lesions look like, and how are they different to eczema?

They said that TSA skin lesions look similar or resemble the original skin disease. I somewhat disagree since the only way I knew I was addicted was because the eczema wasn’t the same anymore, however normal eczema and TSA do share many similarities.

The usual distribution of atopic dermatitis is the neck, knees, elbows or flexor parts of our body. With TSA, it can be present anywhere on the body. Also, after withdrawal, the skin becomes thickened.

4. Where on the body does it occur?

“Addiction can affect every part of the body.”

5. What strength of steroid and usage pattern leads to steroid addiction?

“What seems accurate is that longer periods of application and more potent strength of TCS lead to more frequent addiction. Concrete data is very difficult to obtain because patients usually do not have a record of the applied TCS.” Not only that, but if this is not recognized, how do we obtain accurate information?

From their understanding and their own experiment (seen at bottom), they were able to reasonably attest that TCS should not be used for more than 2 weeks. They also state that using topical steroids on and off intermittently doesn’t necessarily prevent addiction. There isn’t enough evidence to prove either side.

6. How is steroid addiction treated?

“It goes without saying that TCS must be withdrawn in addiction patients.”

They articulate that dermatologists usually misdiagnose this as an aggravation of the original eczema and prescribe potent steroids and insist that TCS never suppresses the HPA axis. As I’ve shown in Topical Steroid Label Part I and II, that is simply not true.

They also state that, paradoxically, they feel systemic steroids may help during the rebound period. I am not sure where this evidence is based since I, myself, tapered twice with oral steroids only to flare badly once tapered off.

There is also a discussion of how patients may not be able to taper their topical steroids. “Conversely, there are sufferers who cannot decrease the amount or potency of their TCS at all because they experience rebound immediately if the medication is decreased.”

7. How common is steroid addiction syndrome?

They are open and say there are no statistics regarding the prevalence. As I said earlier, how are we to know this information if the syndrome is commonly misdiagnosed? However, they did their own study over 6 months. It showed there were about 12% of their subjects who were addicted, which left a proportion of 88% not addicted. They make the very shrewd acknowledgement that “… we should not pass over the fact that the remaining 88% are also potentially addicted patients.”

Now, the review closes on three important problems seen in the new AAD guidelines regarding the viewpoint of how to prevent TSA.

One, the proactive approach discussed in the guidelines leaves little room for the eczema to heal on its own as shown in some children and infants. Proactively, you would use the steroid 1-2 times a week, while reactively you’d use it only when you have a flare. If you are continually using the steroid, regardless of showing signs of eczema, it tells the story that eczema sufferers will always need TCS. This approach does not help initially uncontrolled patients, in whom patients with TSA would most likely be included.

Two, the use of tachyphylaxis for the term TSA is not correct. It does not appropriately represent TSA because “tachyphylaxis is usually used to faster-onset responses than TSA,” and can be misguiding. Many TSA sufferers may not go to see a dermatologist anymore, but that doesn’t mean they don’t exist. If these two terms are mixed up, it shows the fact that most dermatologists have not experienced seeing patients during withdrawal for TCS.

And third, the topic of under treatment. If someone has TSA, then steroid use must be stopped and cannot be seen as an under treatment and therefore they need more steroids. This does not help TSA patients.

And many questions are raised because of this — “Did the number of patients with adulthood atopic dermatitis increase after dermatologists began to prescribe TCS several decades ago? Why do patients with atopic dermatitis only complain or worry regarding TCS use? Until dermatologists can clearly answer these questions, patients with atopic dermatitis have a reasonable right to choose their own therapy after receiving sufficient medical information to make an informed decision.”

And, in my experience, that sufficient medical information is rarely available. Having excessive warnings about under treatment may overstep a patient’s right to choose the treatment they wish to use by inducing a prejudice that they aren’t wanting to treat their condition correctly.

Screen Shot 2016-09-04 at 12.45.18 PM
Above pic: normal, healthy skin before TS use; Below: 2 weeks after TS use (.05% clobetasol propionate, twice a day)

Review: Topical steroid addiction in atopic dermatitis – Mototsugu Fukaya

Prescription Without A Cause

It’s not the steroid itself I have a problem with in the medical community. No. It is the overprescription & the lack of detective work to see if the patient even NEEDS the steroid that can cause so much harm when abused. That is what I have a problem with…

Take this dentist for instance. Here is the article that surfaced about his intense struggle with facial eczema.

Link to full article about Dr. Frances Tavares 

This dentist, Dr. Frances Tavares, was not only misdiagnosed and mistreated, but then had to deal with Red Skin Syndrome because of his overprescription of topical steroids (on his face no less). We already know that the face is one of the most sensitive areas/high absorption spots on the body. To use topical steroids on the face is already a risk, but then for such a long period of time is extremely neglectful.

After countless different dermatologists giving him different brands of topical steroids, Dr. Tavares was finally allergy tested 2 YEARS after first being seen. That is an obscene amount of time for a dermatologist to wait when the patient is not responding well to the steroid. It even says on topical steroid inserts that doctors should reassess the situation if it doesn’t get better (… not 2 years later).

After he had the allergy test, he found out he had an allergy to propylene glycol, which is commonly found in lotions, toothpaste and other body care products. By getting rid of products with this ingredient, he was fine. Or was he?…

No, he wasn’t. He had to withdrawal from the topical steroids that he had been using for so long because dermatologists didn’t take the time to properly diagnosis him. If they found the root cause to begin with, there would not have been any need for steroids.

And the biggest problem I find about this article is the emphasis they put on tapering, as if to say tapering solves all your problems. There are many Red Skin Syndrome sufferers who have tapered down, just as their doctors have prescribed, and still flare badly. Could it help with adrenal fatigue? Sure, I can see that if they need it for their adrenals. But to say they will be fine once they taper is not accurate.

“The doctor who diagnosed Tavares’ allergy says there’s no problem with the prescription of corticosteroids, but it is a mistake for patients to come off them cold turkey.”

Yes, yes there is a problem. No, I am not a doctor, but YES there is a problem. These topical steroids should not be prescribed for long periods of time, especially not on the face. It is not only neglectful but shows a lack of education on the topic of steroids.

So, I beg of you. If you have a rash come up, anywhere, get it tested (allergy and or swabbed for infection) before you start slathering on topical steroids as a solution. They are not meant for a long term solution.

Interview #5: Caroline Langdon

caroline-langdonCaroline Langdon

Adelaide, South Australia

“You are the sky. Everything else – it’s just the weather.” ― Pema Chödrön

1.When did you start using topical steroids? And why?

I was treated with steroid cream from infancy for atopic eczema.

 

2. What was the name of the topical steroid?

My mum thinks the first steroid cream was called Celestone.

3. Were you ever prescribed more potent steroids? 

Yes. All kinds. All strengths. For eczema.

As a young child I had severe eczema and was prescribed mild to strong steroid creams and ointments for different parts of my body. I think from around the age of twelve, I started using it on my face as I’d developed eczema there as well. Mostly around my eyes and mouth at that point. By the time I was a young adult I used steroid creams and ointments on and off, of varying potencies.  On my face and different parts of my body. By this time I knew steroids were not a great option long term and endeavoured to use them sparingly.

I tried all manner of things for managing my eczema naturally (without steroids), via nutrition, supplements, lifestyle, natural creams/potions etc…. but my skin would eventually become completely unmanageable after a few mths if not before. I would need to use steroids again to control my eczema, so that I was able to sleep, work, care for my children and function properly. They suppressed it, it worked temporarily/superficially, that is, until it didn’t. Such a vicious cycle.

4. How did you find out about RSS?

I typed into my computer something like: red, burning, severely itchy skin… and eventually stumbled onto ITSAN.

5. What made you feel you had RSS?

I was desperate to find out what was happening with my skin, it was not like the eczema of my past (though that was no walk in the park, this was much worse). It was often red, itching and burning. It didn’t matter how great my diet was or what else I tried, it kept getting worse and spreading to areas I’d never had eczema before. My asthma and hayfever were super bad on top of it. I’d always been an allergy prone person but I seemed to be allergic to everything! I was getting nowhere with the dermatologist I’d been seeing, except sicker and sicker. My skin was so unmanageable, it was affecting every facet of my life! He had me back on steroids telling me I had eczema urticaria and said, ‘Many people have to manage it with steroids the best they can the rest of their life, you’re not the only one!’ (I think this was meant to be comforting??). He put me on an immunosuppressant drug used for cancer and transplant recipients, which is what they give people with very bad skin conditions too I discovered but I agreed as was desperate.

My immune system was at such a low ebb, I felt so sick and run down and I had skin that was red, burning and incessantly itchy most of the day/night.

I indeed wanted relief but I didn’t want to be taking these drugs for the rest of my life, especially when I seemed to be getting progressively worse, not better!!

There had to be a better answer.

I was in such despair. I started googling my symptoms, things like ‘burning, red skin/ hives/ rash spreading to new areas/ relentless itching/ palpitations/ severe anxiety/ no sleep etc’ and found other people who described EXACTLY what I was experiencing and going through, the common thread having been the use of topical steroids.

Then I stumbled across ITSAN which was such a relief.

I had finally found a site and support group (so many people going through exactly the same thing as me!) that talked about Red Skin Syndrome.   The site linked many studies and medical publications about how Topical steroids can cause this condition in the body …..and people were finding a way to overcome it!!

Stop using them!! Ha, sounds easy right? Not so. If it were easy to stop them, I guess there wouldn’t be so many using them. Hardest thing I’ve ever done!! Also the best thing I’ve ever done!!

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No I wasn’t but my gp had seen me get progressively worse over time. When I told her that I believed it to be the steroids promoting the condition and shared info from ITSAN and others experiences with her, she found it to be very plausible, though she had never seen anybody else that was in the state I was in personally. She’s an Integrative Medicine GP so she was very supportive in monitoring me, etc. I don’t know what I would have done without her in those first 12 months, for moral support alone!

I had a great naturopath as well. Very lucky in this respect.

7. What were your first symptoms?

Spreading rashes, hives, red skin, burning sensation, crazy itchiness, sore eyes, poor sleep, heart palpitations, anxiety, depression.

8. Is your family supportive? Friends?

Yes, I’m so grateful to those who were/are.

I fell out of touch with many people though (or they with me). Mostly because I could no longer go out and socialise for quite a long time. It’s a very isolating experience in that sense.

9. Have you ever been to a hospital for this? 

In the early weeks of tsw, I was in a very severe state and had come up on the waiting list with the Dermatology Dept at the hospital.

After my previous experience with the dermatologist I wasn’t sure about going but was in such a bad way, thought I should keep the appointment because at that particular point, I felt like I was close to dying, no kidding! I had no idea how, or if the body could cope with this for much longer. Complete head to toe, burning, red, oozing and tremendous oedema. My face and entire body was filled with fluid and leaking it out everywhere at the same time. Nobody who knew me would have recognized me, I barely recognized myself. I walked in, in a knee length cotton night singlet, which was agony in itself. At home I couldn’t wear anything it was so painful. I looked like a maniac, itching insanely everywhere. The nurse at the counter got a cold, wet sheet and threw it over me, it was heaven for counteracting the heat in my body. By the time I was called in to see the dermatologist, I was shivering like crazy. I tried to explain that I had been reacting badly to steroid treatment and had ceased using any creams in the last few weeks.
They deemed me ‘critical’ and that I should be admitted immediately! I asked how they would treat me if this happened and they said with steroid wet wraps and oral cortisone.   I said that steroids were responsible for what had gotten me into this mess and so that was not an option really.

They basically said, ‘Oh well, if that’s not what you want we can’t help you today… but how do you think you will manage this by yourself at home’. I was gobsmacked, I thought they may have been able to provide some help or checking of vitals etc to make sure they weren’t sending me on my way if they were deeming me ‘critical’!

I said, ‘I don’t know, I guess I’ll go to my gp and get her to monitor me, make sure there is no infection, or something..’, to which they responded, ‘oh, your gp won’t be able to do anything for this’.

If you don’t want to be steroid tempted, hospital is not the place to go. I walked out and went home. It was truly the hardest yet best thing I could have ever done for myself.

10. What has been the hardest part of this condition?

The debilitating and painful nature of it, the fact that it unpredictably effects not only the skin but many aspects of the body’s internal and systemic functions. The continuous lack of sleep. The fact that it takes an undetermined length of time to recover from. Hmm, I guess there have been a few hard parts.

11. How long have you been in withdrawal? 

I’ve been in withdrawal since February 2014, so 33mths so far.

12. What do you use as comfort measures during this?

Tsw support groups have brought much comfort along the way.

Baths with Epsom and ACV (apple cider vinegar), icepacks, pressure bandaging, soft cotton clothes and bedding.

Sudocrem and Robertson’s skin repair ointment.

Meditation and drawing.

Good food.

Reading .

Many things but these are the staples.

13. Are you employed? Has this affected your job status?

I have been unemployed throughout tsw. Was unable to work and fortunate to be able to take time to repair my body. Have been doing some volunteer work but am only just recently beginning to seek work again. It’s been a financial drain of the highest order.

14. Have you gone to therapy/wish to go to therapy because of this condition?

Yes, I went to see a psychologist over the first 2 yrs. I found it to be really helpful in keeping me sane. Fortunately for me, he was very interested in nutrition and health, had a good comprehension of the impact prescriptive drugs can have on effecting body chemistry, health and well-being. It was an incredible support at a time when I really needed it, he provided good counselling space for me. He also used hypnotherapy in some sessions to help with pain and itch management. It made a dent.

15. If there is one thing you could say to another sufferer, what would it be?

The intensity subsides.

Time and perseverance definitely has its’ rewards, IT DOES GET BETTER!

Trust that your body has incredible ability to right itself.

Tsw is a lesson in loving patience, with oneself.

That was more like four!


Caroline, thank you! Such an in-depth interview!

Interview #3: Kelly Fasciana

kelly-fasciana-jpgKelly Fasciana

Pennsylvania, US

1.When did you start using topical steroids? And why?

Roughly ten years old. I’ve had severe eczema since birth; however my mom tried to hold on being as natural as possible throughout my early childhood.

2. What was the name of the topical steroid?

I’m 24 now, and I have about 13 years of usage under my belt (quit when I was 23). I started off with the usual hydrocortisone ointment and triamcinalone for most of my later childhood. I’d say these two were actually used properly and sparingly as I had bouts of time with nice normal skin and usually only flared in the winter. Next we move to Cordran ointment 0.05% (flurandrenolide), which was used EXTENSIVELY in my late high school/college years. I’m talking multiple times a day, every day, for about 7/8 years. Not one doctor ever told me otherwise –so I just continued to get scripts filled like it was anything. Lastly diprolene cream 0.05% (betamethasone dipropionate) was prescribed to me around early 2015 when I was starting to catch on that steroids were causing me more harm than good. I only used this for a couple weeks before I quite steroids cold turkey. Also in 2014 and early 2015 I had multiple steroid injections and a couple rounds of oral prednisone.

3. Were you ever prescribed more potent steroids? 

See above.

4. How did you find out about RSS?

From googling uncontrollable, incessant, terrible, (etc) eczema in adulthood and stumbling across ITSAN, Cara Ward’s, and TReczema’s youtube videos.

5. What made you feel you had RSS?

I started to suspect I had RSS early Jan-March 2015. I would flare so terribly if I didn’t keep up with my incessant and inappropriate use of my steroids. I would have anxiety or panic attacks if I ran out and didn’t have a refill called in because I knew what was to come. I couldn’t go away or do anything without steroids. I was 12564641321% completely dependent on those tubes of cream/ointment. And was for years, and had no idea. I couldn’t tell you how many dermatologists I saw around this time. They all said I had uncontrollable severe adult eczema and kept trying to push the stronger steroids/immunos. I saw a naturopath, who agreed to stop the steroids, and pushed a million and one expensive supplements on me (which just killed my pocket and honestly didn’t ease the start of the tsw symptoms).

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

None of the derms I saw believed in tsw. “Intrinsic atopic dermatitis” has been my stricken supposed diagnosis my entire life.

7. What were your first symptoms?

Symptoms: red raw burning itchy oozing skin. The burning feeling is out of this world. In the beginning mostly my face, neck and hands were afflicted. The initial flare was from March 2015-May 2015. I then had a bit of a break, followed by a bunch of shorter, less severe flares. Suffered/suffering from severe anxiety, depression, insomnia, body temperature regulation, hair loss, eye problems. The overall pain was extremely difficult to cope with, and is still to this day. I constantly feel like my flesh is being torn from my limbs with every movement. I’m constantly on fire. I’m near constantly oozing from somewhere on my body. My entire life has been turned upside down. I do not live a life as a normal 20-something, and haven’t in a very long time.

8. Is your family supportive? Friends?

My family has been my rock through all of this. My mom has been my main caretaker. Helping me to bathe, wash my hair, feed me (at some points my arms and hands have been so bad I have very little use of them) and pretty much everything else needed to function on a daily basis. My older brother who is a pharmacist has been immensely helpful in helping me to research and learn new things every day. He is also an advocate for the dangers of topical steroids with his pharmacy customers after watching what has happened with me. And lastly, although tsw has seriously tested my relationship with my boyfriend, he has been there for support and encouragement through it all.

9. Have you ever been to a hospital for this? 

No, although family members considered taking me multiple times. I avoided going for a fear of just receiving more steroids because of the state of my skin.

10. What has been the hardest part of this condition?

Emotionally, I am so drained. I don’t feel like myself. I lash out at the people I love, the people who take care of me. Chronic pain and very little sleep really messes with your head. Physically, I feel like my body is failing me every day. Financially I am ok (for now) as I have managed to continue to work through withdrawal for the most part. I took two months off of work from 15-17 months. So I struggled with money for a short time, too.

11. How long have you been in withdrawal? 

I stopped all steroids March 18, 2015. Currently 19 months. I am no where close to being healed. Currently I am switching between immunosuppressive drugs to remain in a functioning state.

12. What do you use as comfort measures during this?

Pain meds (tramadol, vicodin), anxiety meds (ativan, paxil), anti-itch meds (allegra, benadryl, atarax), lots of zinc cream/bandages, lots of baths, lots of aquaphor.

13. Are you employed? Has this affected your job status?

I’m a vaccine specialist for a pharmaceutical company. TSW has tremendously affected my job, because unfortunately in the pharmaceutical industry it is important to look your best. I had to take an unpaid leave of absence for two months, as well.

14. Have you gone to therapy/wish to go to therapy because of this condition?

At 19 months in, the emotional burden has really taken a toll. I have recently scheduled to see a psychology and psychiatrist.

15. If there is one thing you could say to another sufferer, what would it be?

If I could say something to another sufferer, maybe just beginning this journey, I’d say to just hang in there…. It seems like you can’t get through and I know how you feel. But the body is capable of amazing things and eventually bouts of healing and relief do happen.


Awesome interview, Kelly!

They Struggle, Too

In September of this year, I had the privilege to accompany ITSAN (the International Topical Steroid Addiction Network) to the CSD/AAD conference in Washington, D.C. as a patient advocate. CSD stands for “Coalition of Skin Diseases” and AAD stands for “American Academy of Dermatology.” There were many dermatologists present, as well as non-profit groups with their patient advocates.

Before flying into D.C., I already had anxiety knowing that many dermatologists weren’t going to 1) know about Red Skin Syndrome or 2) were going to brush me us off as not real.

On the first day, we mostly met with the non-profit groups. However, the second day was geared mainly towards dermatologists. For awhile I was feeling oddly used. I knew that when we had to go speak on Capital Hill, they’d want me to share my story to get what they wanted, not because it would help me in any way about Red Skin Syndrome. So, I had mixed emotions all day long.

What didn’t help was that at the end of all the meetings Day 2, we ran into an older doctor who told us he didn’t like prescribing steroids very much. Intrigued, we sat down with him. We then entered into an hour long conversation about how his method is to dowse his patients in steroids 6x a day to get rid of the eczema. I think I stopped taking him seriously when 1) he looked at me (and I look WAY better than I have been) and told me “I’d consider you severe atopic” and 2) then went to get up and touch my face without my permission. I told him very bluntly he was not touching my face. If someone starts a sentence off with “I know this may sound conceited, because it is…”, how am I supposed to find you educated? Our conversation was getting nowhere with him and it was very disheartening.

On that same day I had met with everyone from Florida and we exchanged names and how we should go about getting business done on Capital Hill. There were two other advocates amongst all the dermatologists. One was for vitiligo, and one was for alopecia. Both of these conditions are known in the dermatology profession. When my turn came, I felt a bit of  the ‘deer in the headlights’ come on when I tried describing Red Skin Syndrome. One doctor in particular stared at me and asked,

“How old are you?”
“I’m 27.”
“Oh.”
“Why how old do you think I am?”
“I thought you were a teenager.”

Others nodded in agreement that they thought I was much younger. I felt defeated in a sense since I wasting viewed as this young, meek advocate, not the educated adult that I am.

Well, the next day, I rode into Capital Hill feeling slightly inadequate. All the legislation that we had been learning about didn’t directly affect or help my fight for awareness, but I tried to find a way for my voice, in my conscience, to matter.

At one point, I was alone with two other dermatologists. One was from the Orlando area, one was from the Melbourne area. The one from Melbourne also had his wife and son with him. While waiting to meet with our representative (Mica), we spoke to his assistant about our wants and needs. When I waited to share my story, I was able to listen to these dermatologists speak about their troubles and business woes due to how the system is run. I suddenly felt a twang of empathy for them. I believe that doctors should be regulated, but it seems the system in place is making it very difficult for them to practice good medicine. They are run down, unable to give their patients adequate attention. They are fighting with insurance companies, being forced to stay later and later at the office to finish menial paperwork, searching for affordable medications for their patients since prices have skyrocketed, and now are faced with their compounding rights being highly regulated. These are things, as a patient, I have never thought about.

So, when it came for me to speak, I felt much better speaking out for the entire group’s plight, not just my own. It helped me realize that patients are not the only ones struggling. Yes, there are plenty of doctors who still give patients a hard time about Red Skin Syndrome and need to be better educated on steroid use, but there are also doctors who are probably just so exhausted that they are going to be defensive.

The way the system is being run now is for money. Representative Mica even bluntly opened up about one of our legislative asks. There is a call for more research money, of which he whole heartedly agrees. However, when I explained our condition he said it was sad that I would most likely not see any research being funded for my condition since it doesn’t generate a profit. This may not be verbatim, but he said, “Generally they will put money into research if they know they’ll see a profitable return, but with you, they wouldn’t be getting that.”

Even HE sees the uphill battle we face. It’s unfair to push us aside because we don’t fit into their pockets.

So that is why I heavily push and advocate for PREVENTION. If the medical community was aware of the correct way to utilize topical steroids, and what the consequences are if they overprescribe them, then we have a fighting chance to keep patients away from this turmoil. And not only does the medical community need to be educated, but so does the public. Too many times we are given a medication and not taught what it is, how to use it, why we are using it, and what the side effects may be when used.

So doctors, please understand that we are just fighting for our health since the system doesn’t seem to be. And patients, please understand that doctors are fighting for their sanity since the system doesn’t seem to be.

The struggle is real. #WeNeedReform

Feature #5: Levi & Alicia

levi-akkermanLevi Akkerman

Age: 7

Career: Student

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? During TSW was Lemongrass balm and zinc balm from the Home Apothecary

What was the hardest thing to deal with during this condition? Nights are the hardest part of TSW, it’s like around 3am the whole body heated up with insane itch.

What is the first thing you will do when healed? Live life! We (his mother and Levi) got sporadic breaks between flares and we just tried to live happy and normal when we could. Went to Adventureland and swimming, but the best thing is just seeing his beautifully clear and smooth skin. I just rub it in disbelief and pure joy now.


Alicia Akkermanalicia-akkerman

Age: 38

Career: Homemaker

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? Renew Intensive skin therapy lotion was my favorite product during TSW, and ice!

What was the hardest thing to deal with during this condition? I had swollen, oozing hands for the first year and was very handicap with 5 children, 1 going through full body TSW. Mornings were the hardest and would soak them in ice water to help numb the intense itch. I lived in cotton white gloves for about 6 months.

What was the first thing you did when healed? Mainly I am just so thankful for my hands now. Being able to cook and prep food again!

How is this Legitimate?

This is the abstract from a review done in Australia on the effects of TCS in children.

Screen Shot 2016-09-03 at 3.37.33 PM

“… and their unfounded concerns…” Ya, you read that right. I’m quite concerned as to what they deem unfounded?

“Contrary to popular perceptions, (TCS) use in pediatric eczema does not cause atrophy, hypopigmentation, hypertrichosis, osteoporosis, purpura or telangiectasia when used appropriately as per guidelines.”

Screen Shot 2016-09-03 at 4.06.43 PM

Link for above article

It is well known that using topical steroids on children should be used with extreme caution, and if parents have questions or concerns, they didn’t just suddenly make them up in their head. No, they have undoubtedly heard things (that are likely founded) and have every right to be concerned. Often times, children even outgrow eczema. If their case is mild, there is no reason to start lathering them in topical steroids (in my personal opinion). Babies get rashes and skin blemishes. If they aren’t bothering the child or aren’t severe, perhaps finding a more natural way to deal with their skin would be best before jumping onto steroids.

A problem I also have with the “use appropriately as per guidelines” sentence is that doctors often stray from the said guidelines. If the product says to only use the drug a certain way and the doctor’s discretion is different, then there is a huge problem. No amount of “don’t worry” or “it’s totally safe” will in actuality make it safe for you to go past the 2 to 4 week rule in children. And, the larger the surface area you are told to put the steroid, the higher the potential of adverse effects (you know, those “unfounded” ones).

To further my proof, you can read the FDA Evaluation and Research paper.

Founded by three different references, it states, “… HPA axis suppression has been observed in infants and children with both high potency and low potency topical corticosteroids.” Why on earth would you put a child at an even higher risk with potent steroids when they should only be placed on the least potent steroid first, of which they could still risk having side effects if used over the guideline mark? For example, this evaluation states Fluticasone (Class 5 steroid), is said to be approved for patients 3 months old and up for a maximum of 4 weeks. Other studies show an even shorter period of 2 weeks should be utilized. The potent and super potent steroids are Class 1 and 2.

The best part of this research paper: “… the labeling of each product should advise practitioners of the appropriate duration of use of the product. The labeling should give information regarding how quickly improvement in dermatoses should occur after therapy with topical corticosteroid is started, and practitioners should be advised to discontinue the product if improvement does not occur within this time frame.”

It doesn’t say if the steroid isn’t working, immediately up their potency. It says DISCONTINUE. They need to be reassessed.This is what is supposed to happen.