Medical Post – Preventable: Protecting Our Largest Organ

IID Conference 2018, PART 2

It was quite the struggle getting up Friday morning after the swift burst of excitement from Universal. We were shuttled back into the event location around 11:30pm. By the time we got home and I was able to shower/get ready for bed, it was past 12am. So preparation for Friday’s long events seemed arduous at the start of the day.

Once we were back in the venue, it was time to work. Kelly was alert and ready with a smile, manning our booth, and I was keen on hitting every poster and mini-symposium I could before we needed a food break (and I didn’t want to eat my weight in candy). Luckily, at the large Mary Kay symposium, I was handed a lunch bag!

The symposium was on air pollution and the effects it has on the skin, especially in places that are high in pollution like Asia, the Middle East, and parts of Africa. A few things that are affected by air pollution are eczema, skin cancer, uticaria, acne vulgaris. There was a study presented that showed how pollution in Saudi Arabia was contributing to obesity and type 2 diabetes. And if there is chronic traffic pollution, facial letigens were increased. Researches were trying to find out if anti-oxidants (a specific mixture for the skin) could help suppress pollution-induced issues on the dermis. For example, DEP exposure induces skin darkening and melanin production. An enzyme called CYP1A1 is shown to reverse this damage.

When I linked back up with Kelly, she was super excited to have spoken with the NEA (The National Eczema Association) and felt confident that our voices were finally being heard. Just 5 years ago, TSW was deemed a myth on their website. Then a few years later, they had a task force put together to investigate this phenomenon because so many asked about it. Now, we have TSW being discussed on podcasts and being seen as one of the 3 leading reasons for worsening eczema. We also, while seated at our booth, were able to speak to two separate men (a researcher and a professor) who are in works with natural remedies for our atopic issues. They both agreed that topicals were dangerous to mess with long term.

Friday night was the big talk given by Amy Paller entitled, “How our Increasing Understanding of Pathogenesis is Translating into New and Emerging Therapies.” There was a lot of repetition from the early lecture on atopic dermatitis, however she delved into a few other therapies a bit more, particularly JAK inhibitors. This can help reduce inflammation. There was a study done (and I don’t believe steroids were allowed to be used) where 90% of the participants had mod-to-severe atopic dermatitis. It lasted 4 weeks, 2x a day using the JAK inhibitor or placebo, and they saw that it seemed to do slightly better than tacrolimus.

Two other newer treatments were 1) Topical Tapinarof. It resembles coal tar and can improve the skin barrier, along with lessening inflammation. It worked 50% of the time, fully clearing or almost clearing patients. The other treatment is 2) Commensal bacteria. This was touched upon in the other lecture, but Amy Paller mentioned a treatment called Roseomonas Mucosa. It is in open label study that is sprayed on the fossae and showed reduction of bad bacteria and improvement of the local SCORAD, along with reduced steroid use! (SCORAD is one way researchers and doctors measure the success of a drug or treatment).

One treatment that has already been out for a couple of years is Crisaborale, or Eucrisa. It is a non-steroidal PDE4 inhibitor. The trial for the drug lasted 48 weeks, and showed minimal detection in the blood. I do not remember the percentage for the effectiveness of the drug, but I do remember it being a bit low.

She, too, brought up antibiotic resistance issues, as well as the side effects AD can have on children. It showed that some may be more prone to having ADD — however, that may be happening because of the large amount of antihistamines being prescribed to patients. There are also many studies showing that 16% of patients showcase anxiety, and 14% have depression.

Overall, her talk was informative of new treatments, but it’s easy to tell that she is still very defensive of steroids and their cherished use in dermatology. She had shared a slide about allergies/contact dermatitis, and topical steroids were on the list of culprits. She would not mention their name and quickly scanned over the slide. I feel it is really hard for many dermatologists to acknowledge how unsafe topical steroids can be because it has been engrained in their mind that this is the one effective drug that works for patients — the end all, be all healer of eczema. I do appreciate how hard some of them are working though to find better and safer ways to deal with atopic dermatitis, long term. Change is coming, and I am glad she is talking about it!!

Instead of staying Friday night for the dinner after Paller’s lecture, we called it a night and cooked together at the apartment. She and I were exhausted, both of us still dealing with our individual TSW issues. We still didn’t get to bed until very late, myself strategizing about the next day and trying to decompress (I bought a new TENS stem machine at the conference from a booth next to ours and I was using it while cooking).

Saturday was a bit of an unpleasant surprise. The morning was fabulous. I came in earlier than Kelly to our booth and ended up speaking to two separate groups of medical students who were looking around. They had never heard of topical steroid addiction before, one even stating that she was learning about steroids at that moment and nothing like this had ever come up. Such a red flag knowing this isn’t even being touched upon in a class. However, to my and Kelly’s dismay, we had another run in with why we are encountering so many unpleasant and arrogant doctors.

Dr. Steven Feldman, a man who is supposed to be a professional dermatologist who teaches students, was ABSOLUTELY APPALLING. He gave a huge lecture on atopic dermatitis. I knew it was going to go downhill (and I mean, steep-no-brakes type of downhill) when he gave us an anecdote about this one patient who was getting worse and worse despite the amount of steroids he was using, so Dr. Feldman admitted him into the ER on a Friday, lathered him in triamcinolone, and by Monday he was better. He goes, “… there are 3 reason why someone who is extremely atopic, has tried everything, and then is sent to the ER where they cover them in triamcinolone and suddenly clear up … 1) poor compliance 2) poor compliance 3) poor compliance.” He reiterated this ALL throughout the lecture. It was always the patient’s fault if they weren’t getting better.

I can not even touch upon the nastiness of his scorn and condescension towards patients. What upset me most is when I looked him up and saw how his practice is unbelievably two-faced. On one website that showcases Dr. Feldman, this is what is stated below his biography:

“Patients should recognize that physicians do care (even if it doesn’t seem that way.” — I witnessed this man show a presentation on how biologics work, turn to the audience with a prideful smirk and say, “We should play that video for patients. They’d leave with more questions than answers.” The little laugh that came out after just cranked up my anger.

“Sticking with one doctor and building a strong, trusting relationship…” — Trusting? He gave MORE than one scenario where he said he’d manipulate or lie to a patient. One instance is him manipulating the patient into using a new drug. He said if a patient was concerned about trying a new drug, he’d tell them an anecdote about how he JUST saw a patient in his office, in THE VERY SAME CHAIR they were sitting in, and they were using the drug and are super happy! YEA! *super sarcastic* The story didn’t have to be true; it would be told to ensure that the patient would be more swayed into taking the drug.

The biggest lie, which was told with SUCH condescension (like nails on a chalkboard) was his policy on “skirting around” the steroid question. He literally stated that he wouldn’t answer the question “is this a steroid?” when a patient asked. Instead, he would say (and this is WORD FOR WORD since he said it SO MANY TIMES throughout the lecture):

*in a soft-spoken, patronizing tone*

“This is an all natural, organic, anti-inflammatory designed to compliment your natural healing mechanisms to bring the immune system back into balance and harmony because I like to take the holistic approach to the management of patients with skin disease.” BUTTTTTTTT then he’d add on “gluten-free, made in a nut-free facility” if they dressed like a hippy and were from California. ANNNNDDD THENNN, he’d add on, “made in America” to anyone who was wearing a red hat that said make America great again.

How unprofessional is that?

And this is a man who is EDUCATING students! The whole lecture itself counted as a continuing education course!!! Everyone that needed a continuing ed credit could receive one at the end by filling out a survey!! Despicable.

How are we supposed to trust doctors when this is what is happening behind our backs? We weren’t allowed to film the lecture. Why? Because then THIS type of behavior would be exposed? This was my reaction afterwards:

It truly brought our fighting spirit out that afternoon. These are the kinds of doctors so many sufferers are up against in the office. When we are told to hold a conversation with our doctor, THIS is what most are met with — haughty, know-it-alls who blame the patient for everything! We are the reason for our suffering, not them. They are devoid of any responsibility. Not all dermatologists of course are in this man’s category, but it’s very apparent that people who share his views are scattered all around the United States. It’s dangerous allowing him and others like him to be the leaders of ‘continuing’ education.

I needed to have a quick ‘harness-yourself’ moment before Kelly and I got ready to sit through 2.5 hours of atopic dermatitis poster discussions. We were at the end of our ropes and tired but we managed to get through them! We couldn’t miss out on those while we were there.

There were 11 poster presentations in total. I’ll give snippets of each (if there were things of importance to share.)

1. How most adults with AD have it mainly on their face and neck. So they were trying to target certain genes that may be linked to this. They found 3 specific ones to re-sequence that may help these types of patients.

2. Talked about OX40 inhibition (one of the biologics are targeting this) and how it may be helpful to those with T-cell driven AD. The clinical trial was very small, though. More trials still need to be done.

3. Talked a lot about IL-22 expression and trial being done. I have a feeling steroids were used during the trial, and they also said IL 22 by itself isn’t significant, but if it’s tied with other cytokines, it can play a role.

4. Spoke about JAK inhibitors — they reduce IL 2, 4, 6, 13 and 31. They had 419 participants in the study but many were dropped because they didn’t allow rescue medication, and they were transparent with the fact that once the person stopped the drug, they went back to baseline (meaning lack to their original state).

5. Spoke about PAR2 over expression and how it shows dysfunctional barrier, entry of allergens, which then activates immune response (mast cells go up), and then ends with deterioration of barrier.

6. This one was a bit overly scientific for me to fully follow. Spoke about Suprabasin (SBSN), an amino, and how nickel absorption is heightened in mice that are deficient in SBSN.

7. This speaker was talking about pH balance, but his accent made it difficult to follow, sadly.

8. Discovery of filaggrin loss of function variants in Hispanic and African American/Native American children with AD – High prevalence in central and south America for AD (which maybe can be because these places may not have regulation of steroids? — just my thinking). There are 3 known filaggrin models (10, 11, or 12 repeats). High loss of filaggrin in Asia and in some parts of Africa. The frequency of FLG loss of production is enriched in mod-to-severe AD observed in kids. Basically, she’s found 6 different discoveries in variants.

9. AD is associated with fragile homes in US children – Can worsen with anxiety and stress, and create financial burden. Higher odds of AD in children living with single adult families, non-biological fathers, unmarried mothers, and single mothers. Stress can trigger early childhood trauma and genetics. (There is a chicken or the egg scenario here though, depending on how in depth this study went — did the children have AD which caused a rift in the household ,thus playing a role in the couples splitting? Or did the couples splitting worsen the child’s AD due to stress?)

10. Another study on Staph aureus and how different good bacteria may help — such as S. hominis and S. epidermidis.

11. Another Dupilumab study and safety profile. They only seem to see a slightly higher prevalence of conjunctivitis in patients who use the drug. About 10% I believe in the trials had this side effect.

Once all the presentations were over, we went to the closing ceremony (which many didn’t care to attend), and it seems this is the last IID conference. They are now calling it the SIID (I believe) and it will be held in Tokyo in 2022. The next SID conference will be held in Chicago next May. I’m sure ITSAN will be attending, hoping to make even more connections.

As we were walking to our cars, Kelly asks, “Want to get Pho?” My mind was so cluttered and overwhelmed, I just stared blankly and couldn’t even recall what pho was. I’m glad she suggested it — delishhh. What the doctor ordered.

The conference was a wonderful experience (with a bit of sour thrown in). I think we still have a ways to go, but it is refreshing to see curious med students and other doctors who see what an issue long term use of steroids has become. There are still those steadfast, obstinate doctors who aren’t able to look past archaic ideals and views, but we will prevail one day for the betterment of treatment and patient care. #IID2018

It was an honor so sit beside ITSAN. They have been doing such a stellar job being professional while advocating for Topical Steroid Withdrawal. It’s not an easy road they are on. Changing minds in a tactful and responsible way for the sake of saving others from pain and years of suffering is extremely commendable and worthy of a round of applause!

IID Conference 2018, PART 1

This past week, Kelly Barta and I attended the International Investigative Dermatology Conference in Orlando, Florida. Kelly is the new President of ITSAN, the International Topical Steroid Addiction Network. We had met on two other separate occasions, so I trusted the week would be filled with both fun and advocacy.

On Wednesday night, we entered the Rosen Creek Hotel dressed in our best and hoping to mingle. To say the conference was packed is an understatement. Doctors and researchers from around the world were stuffed into the open buffet and bartended area, chatting and greeting old friends. We figured out there must be around 3,000 people present. Our mingling strategy was a no-go since there was not much opportunity to interject into already matured conversations between colleagues. We however caught up amongst ourselves and shared our thoughts of what we expected, what he hoped would come to pass, and how to best utilize our time at the conference. Kelly had already set up a fabulous booth in the poster presentation room and all we had to do now was make an impression.

Thursday was our first long day of the ‘marathon’. With Kelly being such a warm and intelligent conversationalist, I would leave her to man the booth while I attended some of the smaller poster sessions and mini symposiums. I was interested to see what else was happening in the field of dermatology surrounding the skin (that perhaps could intersect with our advocacy). There were LITERALLY over 1500 posters being showcased, all with different research topics. Quite overwhelming for an onlooker who didn’t understand every facet of research or jargon being used. The only place I felt confident was at the Atopic Dermatitis presentations.

That night, before the IID shuttled us off to The Wizarding World of Harry Potter, we had a large lecture on Pathoimmunology and Management of Atopic Dermatitis. There were 4 different speakers: Emma Guuttman-Yassky, Jonathan Silverberg, Eric Simpson, and Amy Paller. They are some bigger names in the AD community. Many topics were discussed during this blocked period, most of which were echoed and further looked at in other sessions. One is the two main categorized causes of AD: The INSIDE-OUT, and the OUTSIDE-IN. The former comes from a Type 2 response in the body (like allegories) and all the different IL pathways. IL stands for interleukin, which are certain glycoproteins responsible for immune response. There are many ILs that seem to play a role in AD and other autoimmune issues, such as psoriasis. The latter cause stems from our epithelial barrier and innate immunity– things like filaggrin, which are what help seal out allergens and irritants from entering our bodies.

One huge element I took away from the lecture was “AD (atopic dermatitis) IS REVERSIBLE AND IMMUNE DRIVEN”. That word, reversible, is a word filled with hope. So many patients have heard doctors tell them that they will be on steroids for the rest of their life because eczema is incurable. But, if we can find a way to reverse the damage, it will be a day of joy. I truly hope in the next decade we find out how little we will ever need to prescribe steroids since we will have found safer and more effective drugs that target the causes of our symptoms, not just the symptoms themselves.

At one point, when they were discussing statistics (adults with A.D.: 7%/Children: 15-20%), they were not sure why A.D. was becoming more persistent into adulthood. All I could think in my head was: steroids. If patients are being treated constantly with steroids, some are sadly going to be in the steroid-induced eczema column. They also gave statistics on our lack of sleep and teetering concentration throughout our work days. 90% of sufferers said they experience sleep loss 1 night a week. 50% said they experience sleep loss 5 nights a week! What a large number!

The hottest topic however was new treatments being studied or already in trial for helping relieve patients with atopic dermatitis. The one we already have available in the United States is Dupixent (Dupilumab), which is an injectable treatment that targets IL 4 and IL 13, two culprits in AD inflammation. They are seeing it help around 50% of patients (noticeable to massive improvement), and studies that even show improvement in filaggrin production.

The drugs that are in phase trials going on are the following
(name of drug: the IL it targets):
Tralokinumab: IL 13
Lebrikinumab: IL 13
Mepolizumab: IL 5
Nemolizumab: IL 31RA receptor
ANBO2O: IL 33
Tezepelumab: TSLP
GBR830: OX40.

So many!! And these are just the monoclonals (or also known as biologics). You may be wondering why we have so many IL targets that differ, and it’s because not only can many play a role, but different ethnicities have issues with different ILs. One drug may work wonders for one person, but it may not help another very much. Doctors and researchers are doing their best to tackle this puzzle.

Something I did not enjoy hearing about with these trials however is that many allowed steroid use. So, when you see the number 68% in the placebo group, it’s not because it was just a psychological improvement, but because they were using steroids when needed. How are we supposed to know the efficacy of a drug by itself if steroids are also being used in tandem? Not all trials but too many to count are allowing this. Nevertheless, it still seems to be helping some individuals who are now off of steroids because of it. That is a plus.

Another stellar branch they are trying to utilize is bacteria. It has become apparent that Staph aureus (Staph au.) plays a part in irritating atopic patients. Many doctors present spoke about the need to keep antibiotic-resistence at bay, so this new study (hopefully going to be conducted within this year) is going to be using good bacteria to try and combat the bad bacteria. Different strains of bacteria are able to fight against Staph au. and a couple in particular will be in the trial (I am not sure exactly the one that will be in the trial, but I believe it will be Staph hominis or Staph epidermidis). Exciting times!

At the end of the lecture, Eric Simpson allowed us to partake in an electric quiz. He gave us a scenario and then asked us (mind you us meaning a room mostly consisting of AD dermatologists or researchers) to answer a few questions surrounding what treatment route we would take for the patient. So, this patient in particular had used plenty of steroids, the scenario even including that he had taken oral rounds of steroids. Now, this patient is coming to see you — Your first step at the new office would be?

a. Repeat course of oral steroids
b.Consider patch testing
c. Start ustekinum
d. Biopsy

The majority of us (including myself) put B — patch testing. However, 16% answered they would do ANOTHER round of orals. Right there, in that room of maybe 100 people, that many jumped straight to the easy go-to that was obviously NOT working. It blew my mind since the % for answer “a” should have been 0%.

Then, he gave us a new scenario (I can’t remember all the criteria), but his first question was “You think the patient has AD. Your first line treatment for this condition would be”: and 58% stated topical steroids. It is still very much the go to, first line treatment. I was sad to see this, but this is what is taught. And it doesn’t make me sad because I think steroids are evil — that’s not my thought process. It makes me sad because when they are given steroids, it is most likely going to be for a much longer prescription than advised by the FDA guidelines (which is around 2-4 weeks of use). However, I was pleasantly surprised/perturbed by the next question: “He fails aggressive topical therapy, what is your next form of treatment?” Great, right! He is saying if the patient fails the first prescription, you move onto the second and not keep the patient on steroids forever! But, vaguely, what does “aggressive” therapy imply? Quick but super potent dose? Excessive use of steroids at different potencies? That part did catch me off guard. And his answer for the question was Phototherapy. I wish that would be considered as first line treatment and not steroids — but it can be impossible for a patient to do since it requires coming in 2-3 times a week for a short burst of UV treatment. Inconvenience, cost, and slower progression in skin repair is NOT what we want (or can sometimes even have as an option). We want the RIGHT NOW, which is steroids. They are quite the temptation. But that was the ending of the conference day, educational wise.

During the day on Thursday, while I was out scouring the posters and soaking up as much lecture information as possible, Kelly did a stellar job networking! I am in awe of her skills. She has a knack for starting conversation and speaking fluently with any stranger. She was able to talk with a few different doctors who were aware that steroids were not the chronic bandaid patients should be dawning, and thankfully she had a wonderful talk with two women from the Psoriasis group! Plus, a plethora of individuals came by the table checking out ITSAN case studies printed out in a binder, ITSAN brochures, and even USB drives with the case studies loaded on them. I’d say it was a pretty successful Thursday! Plus… Universal Studios!

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(stay tuned for Friday and Saturday)

Also, I am not on ITSAN’s board and do not speak on their behalf. We are both advocating for the same cause and I am honored to be working beside them in raising awareness.

NYC Mount Sinai Integrative Medicine Conference

New York City is one of my favorite places, so when I was informed by Henry Erlich that this conference was being held in the Big Apple, there was no hesitation in buying a plane ticket.

The conference was this past weekend, May 13th-14th. I was only able to attend the primary day. However there was plenty of information to be absorbed. My main reason for going was to hear the prestigious and awe-inspiring Dr. Xiu-Min Li spill her knowledge on allergic disease, ASHMI, and her take on Red Skin Syndrome. She will be one of the doctors I humbly get to interview for the documentary this summer, and I am stoked! Such an amazing woman whose research I know will change the way we treat eczema in the next decade. I see a Nobel Prize in her future.

Dr. Li has a phenomenal opportunity while working at Mount Sinai, bringing together both Western and Eastern medicine in a clinical setting. No Western doctor will be able to deny her results and her rigorous efforts to show how wonderful Traditional Chinese Medicine can be (and is!) for our growing allergy and eczema problems.

Besides Dr. Li, there were a plethora of doctors participating, some even flying all the way from China. We had headphones and a translator present in order to understand everyone speaking.

At the bottom, I will be posting a video of Dr. Li’s talk and all that I was able to film. Sadly, I was told we couldn’t video anything so I wasn’t prepared. It was only very late the night before that I was told I was misinformed. I did my best filming with my heavy camera and old phone while trying to listen. It’s a bit shaky, so I apologize. It had been down pouring that day, which soaked my shoes, so most of the conference I was bare foot, attempting to sit on my feet in hopes of warming them up in that already frigid auditorium room.

But here are a few highlights from the conference:

1st Speaker: Susan Weissman

Her son, Eden, had horrific allergies, asthma, and skin problems. She found Western medicine was not helping their son improve. She is an avid promoter of Dr. Li’s work and is happy to say her son is finally able to enjoy life because of her protocol. She is the author of Feeding Eden, a memoir about raising Eden with all of his serious health problems. I think the most profound thing she mentioned was her question to Western medicine doctors: “How do we treat the entity of allergic disease?” Medicine seems to be extremely narrow-minded instead of looking at the body (or a condition) as a whole.

2nd Speaker: Dr. Xiu-Min Li

She gave a brief oration before her longer one at the end of the conference. The merit of her work is astounding and she emphasized how necessary it was to be able to show how TCM brings results that Western doctors can believe in and not have them be able to dispute them as “false” or “not supported.” All of her work has to be proven through science.

4th Speaker: Shi-Ming Jin, MS

*Apologies since I skip over a few speakers* I loved how she spoke about how the integrative world is striving to be more innovative and adaptive to Western world medicine in hopes of showing how TCM is helpful and important in giving patients relief.

8th Speaker: Jing Li, PhD, FDA Botanical Review Team

Basically, there are FDA guidelines/guidance for using botanicals (herbs) in medicine. They are tested in clinical trials just the same as Western medicine, so they are treated equally. It can not be written off. A demonstration of quality control was given, and how they wish to minimize any chemical, biological and pharmacological variations to obtain consistent drug substances.

10th Speaker: Ke Xing Sun

He gave a speech about how using TCM is about keeping harmony in health with our whole body working together as a unit. We are individual people with individual needs, something Western medicine does not always provide. We should be more patient-centered with medicine. He also advocated health in daily life, reiterating how prevention is key.

11th Speaker: Arya Neilson, PhD

*She was a stellar speaker* She deals with acupuncture and the benefits it can give to certain patients, even those with eczema. One of the most interesting things was how this type of treatment post-surgery can help with opiod sparing since we, in the US, take up the vast percentage of opiod use around the globe. Opiod abuse it sky high and having this available is quite a remarkable treatment. Acupuncture is now even included by Western doctors in some therapies! When it comes to allergies and eczema, there was a study done to show how dust mite IgE levels were down regulated after using acupuncture, and how itching was reduced in eczema patients. However, acupuncture is more of a rescue therapy for patients and herbs should come first in eczema treatment. (She is featured on the video)

12th Speaker: Scott Sicherer, MD

He spoke eloquently about his field in allergy/immunology in babies and what could be causing such an exponential climb in allergies these past few decades. No one is for certain, but he feels having exposure to the skin could be a factor. For some reason, there has been found to be peanut dust inside of homes, which is where skin contact could become an issue. If babies have eczema, they are at a higher risk for allergies. He would use oral immunotherapy to try and desensitize the allergy, hoping to eradicate or raise the threshold. Scott touched upon using biologics (omalizumab) for some cases for 20-22 weeks (it’s an anti-IgE), but he says it doesn’t mean it’s going to be any more effective (just perhaps speeds the process).

14th Speaker: Rachel Miller, MD

Rachel continued to speak on allergies and issues in infants and children, focusing a bit on pregnant woman. She showcased how if a pregnant woman is under stress, her child is more likely to have wheezing. She also explained how methylation and DNA does play a role in some of these areas and how Dr. Xui-Min Li’s protocol, ASHMI, has shown good results in pregnant mothers.

16th Speaker: Anna Nowak-Wegryzn, MD

She gave a very in-depth speech about allergies and infant treatment. When she mentioned starting oral tolerance as early as 1 year old, a question popped into my mind. If we can detect and start to treat allergies at that age, why is it that Western doctors are so quick to lather steroids on a baby, but claim they can not test for allergies until about 3 years old? That’s something that I feel should be addressed. When it comes to peanut allergies, she said she personally thinks using boiled peanuts instead of baked are safer to use for desensitization without losing efficacy.

** Funny side note** Dr. Xiu-Min Li came up and asked a question during Q&A. She asked it in Chinese, and the speaker answered back in Chinese. Everyone asked what was said so Dr. Li offered to translate. She started to do the translation, but didn’t realize she was still speaking in Chinese, so someone stopped her. She didn’t realize she wasn’t speaking English. We all had a laugh.

18th Speaker: Julie Wang, MD

She spoke about a drug trial (See pics below)

20th Speaker: Dr. Kamal Srivastava, PhD

One of his best and to the point notes was that IgE is central to the pathology of allergic disease. Another subject he touched on was FAHF-2, which is another herbal formula much like Dr. Li’s ASHMI. Berberine, an herb, is the most potent at reducing IgE levels, and can even help lower glucose. However, it is very badly absorbed taken orally, so they are trying to make it more effective (perhaps, adding to a molecule).

22nd Speaker: Dr. Ying Song, MD

23rd Speaker: Anne Maitland, MD, PhD

She studies Mast Cell Activation Disorders. Anne used the Great Wall of China as an analogy, how it’s not always effective for keeping the bad out. Mast cells can release different things, like histamine or tryptase, and just like a police call, you want to send the correct team out to help for the correct situation. She also touches on how when we figured out how to decrease certain bacterial-based diseases (like Measles), hypersensitivity disorders increased (like allergies). Naps, apparently, are something we need more of to help with stress (which I totally agree!).

24th Speaker: Julia Wisniewski, MD

She spoke about our skin barrier and how we shouldn’t use alkaline soap on baby skin. The best thing she mentioned however was that at the latest AAD meeting, she saw a slide that said steroids do, in fact, have the ability to cause allergic reactions in patients. Near the end, she spoke about Vit D and how it’s definitely important for our bodies.

The last two speakers were Tiffany Camp Watson, the mother who gave her testament about using Dr. Li’s protocol, and then Dr. Xiu-Min Li herself! They are both on the YouTube video speaking. Most of the video is of Dr. Li speaking. After 6:30 mins, it is all Dr. Li and her presentation.

I hope this was informative and I can’t wait to have all my equipment in to shoot these upcoming interviews! 2.5 weeks to go!

More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

I saved the best for last. This hits home for so many sufferers.

This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

This page should be utilized in every way to spread awareness.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

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To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again.

“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well.

Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run.

Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt.

Donate Here

Another New Drug

Very recently a new drug was introduced to the atopic dermatitis community: Eucrisa

This drug is different from Protpic and Elidel, which are immunosuppressants (Tacrolimus cream/ointment) that inhibit T-lymphocyte activation and the transcription for genes which encode IL-3, IL-4 and IL-5. (source) These drugs come with their own risks, one of which is the black box label (possible cancer causing agent).

Not exactly the best drug alternative from topical steroids, but we all know about topical steroids and their effects.

But now we have the new Eucrisa to examine.

I have been trying to do a little reading about it. It is not like Protopic and Elidel. It is a phosphodiesterase 4 (PDE-4) inhibitor.

The trial seemed to fair well with most participants, although there were some adverse reactions. The most severe one was hypersensitivity to the active ingredient, crisaborole. Infections, from what I read in the source material, was the highest issue (11.7% of trial patients).

The trial lasted 28 days where participants applied the drug twice, daily. This is the expected prescription for the drug. Since we do not know much more about the new drug, I personally stress sticking to this prescription and NOT using this drug for more than those 28 days. Is there a tapering protocol in effect? Not that I can see. Just cessation after the 28 days .

I hope this helps everyone out a bit if their doctor suggests using this new medication, or the Protopic/Elidel. Again, personally, I would steer clear of the immunosuppressant creams and ointments. They seem to have many of the same effects as topical steroids.

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The possible irreversible effects of antibiotics

We focus a lot on how chronic use of steroids can cause much damage to our body, inside and out. There are actually many drugs that can do this. One drug that most of us end up using (because of Red Skin Syndrome) is antibiotics. What many don’t know is that this drug can also cause much harm.

At first, some get very defensive on this subject because, if you are told you need antibiotics, you must need them for a reason. Many of us get staph on our skin and are immediately prescribed this drug to help. But we must take into consideration the pros and cons of this drug, not just on ourselves but others.

I think people see their own use of antibiotics as a solo consequence. That if they wish to use them as much as they want then they are the only ones who will suffer the consequences. However, that is not the case. If people begin to overuse this drug, it can change the microflora for the next generation. It is a domino effect that can change the world.

This is a very serious problem when it comes to newborns. One doctor, Martin Blaser, has been vital in this research and whom highlighted his immense concern for babies born from either C-seciton or from mothers who were given antibiotics during the pregnancy. These babies could have an insufficient amount of friendly guy flora, leaving them susceptible to health conditions and problems.

These health problems are often autoimmune related. Even just a one-time intravenous dose of antibiotics can alter our gut flora.

An unbalanced microbiota in the gut is also a contributing factor in autoimmunity. (13) Infection with certain microbial pathogens can trigger autoimmune reactions in joints and other organs. (14) The destruction of healthy gut flora can make the mucosal lining more susceptible to leakage, which some researchers believe is a precondition for developing autoimmunity. (15, 16) It is well-established that the balance of gut bacteria plays a key role in the formation of a proper immune response. (17, 18) A lack of healthy gut bacteria is associated with allergies, IBD, and general autoimmune reactions when this immune modulation goes awry.

Now, there are certain situations where we do need antibiotics. We can not always shy away from their services. But there are things we can do to help ourselves out.

Though antibiotics may be necessary in certain situations, it’s important to weigh the benefits of using them with the potential risks that may come from the permanent alteration of the gut flora. If antibiotics must be used (and there are certainly situations where this is the case), special care should be taken to not only restore their gut flora using probiotic foods and supplements, but to eat a diet that supports healthy gut microbiota with plenty of fermentable fibers from starch and the removal of food toxins.

For those instances where we can forgo oral antibiotics, there are other alternatives we can use to help us. You can find these alternatives here: Mark Sisson

We need to truly keep our minds open to these alternatives instead of jumping right into using antibiotics. Much like steroids, they can really hinder our health. And imagine using both at the same time for long periods of time. It can reek absolute havoc on our bodies.

Chris Kresser: High Price of Antibiotics

Why are we seeing the body as parts instead of as a whole?

I feel Chris Kresser said it best:

“In conventional medicine, there’s a doctor for each different body part, and so if you have heart disease and you have eczema, you go see the cardiologist for heart disease, you see the dermatologist for eczema, maybe you see an immunologist if you have an autoimmune disease, and all of these things are being looked at as separate conditions. As a patient, it can be pretty bewildering to just have this idea that you have all of these kind of separate and disconnected things happening and not to have an idea that there might be a common root cause that’s driving all of these pathologies. Of course, what that means is if there is a common root cause, then there’s a possibility of intervening at that level and seeing an improvement across the board in all of these conditions instead of trying to address each of them in a kind of silo fashion with specific drugs and things for each condition.” (CHRIS KRESSER PODCAST)

Now a days, when something is wrong and it’s pinpointed to a certain part of the body, we are referred to a specialist. This doctors specifically sees patients with one particular problem or problem area. It’s absolutely wonderful to have doctors well versed in one particular area of study, but why is it that when we speak of one problem in our body, that it is never thought to be connected to us as a whole? We are one huge machine.

When doctors now speak about the gut, and how so many other issues in the body arise from our gut not functioning properly, it makes absolute sense! Where do we get our energy? Food. Where does the food go? Into our mouths and down into our stomach and intestines and colon to get digested. Where do we get our nutrients from? Digesting the food! If we are eating foods that are creating a major imbalance in our digestive system, then we aren’t getting the proper fuel we need to function, which in turn can disrupt a slew of organs in our body. It can affect our brain, our eyes, our motor function, our muscle growth, our hormone levels and moods, our bone density, our blood circulation, and for us sufferers, our skin!

My biggest concern with modern medicine is the fact that it masks these problems. I recently watched a commercial for a pharmaceutical medication for helping lower cholesterol. This 1 minute segment was horrifyingly riddleddddd with side effects, including DEATH. Why on earth do we accept this form of treatment? Because it’s easier than changing our diet? That is the craziest excuse out there! We would rather risk death than yielding from a 3x a week McDonalds run?

This is where our solution lies! I will never bash steroids, be it orally, injection, or topically, because they are truly important in the medical community. However, what I can not and will not stand for any longer is the chronic use of this drug as a first line treatment for conditions that NEED to be better evaluated first because, chances are, patients don’t even need the steroids!! If you’re going into anaphylactic shock, of course take a steroid!! But, if you have eczema and you go into a doctor’s office and the first thing they do is write you a prescription for a steroid without evaluating it further… absolutely wrong (in my opinion). That is fast food service. You are receiving the McDonald’s $1 value menu treatment, and that is what is hurting so many around the world from ACTUALLY getting better.

Now, are there conditions that sadly may need chronic bursts of steroids? Yes there are. BUT, we should be finding alternative ways to help maintain a better balance for these conditions than subject innocent patients to the severe consequences that taking steroids chronically has on the body.

If we start looking at our body as a whole, instead of our problems being directed by the area they are located, we may start to see some real change in our world. And when it comes to Red Skin Syndrome prevention, this is VITAL! Taking the time to find out what is truly wrong with your skin, which may be actually stemming from gut issues, can save you so much pain and suffering. I would much rather give up dairy, or wheat, or fast foods (or all three if needed!) if that meant living a life that wasn’t constantly bombarded with skin concerns and anxiety for having to deal with them on a daily basis.

Are we perfect? No. It’s not always easy to eat optimally every single day of our lives (goodness, Christmas is upon us!), but we can make an extremely conscious effort to do it everyday. It’s important to stick to the diet that works for you 100% of the time, but give yourself credit.

Find a doctor who is willing to work with you, as an individual human being, and who cares about finding out what will work for you. They will take the time to dissect you from the inside out to pinpoint what is causing you harm AND help you live your life to it’s highest potential. No one deserves fast food treatment, especially if it leads to something as devastating as Red Skin Syndrome.

Depression Reversal

Ever thought about our stomachs affecting our thoughts and emotions?

“There is a huge and growing everyday body of evidence connecting the health of the gut to the health of the brain. In fact, there’s a saying in functional medicine, fire in the gut, fire in the brain, which means that if you have inflammation, parasites, small intestinal bacterial overgrowth, fungal overgrowth, or dysbiosis in the gut, then that is going to produce an inflammatory response that in turn affects the brain and can cause inflammation and a whole bunch of other problems in the brain, and this is not a fringe theory at this point. It’s true that unfortunately not a lot of primary care doctors or even psychologists or psychiatrists are aware of this connection, but that doesn’t mean it isn’t well established in the scientific literature. It absolutely is. And in fact, it’s been known for almost a hundred years going back to some research that was done at Duke in the early 1930s and 1920s connecting the gut and the brain and even the skin in this axis—the gut–brain–skin axis, which I’ve written and spoken about before.”

This podcast goes into a lot of detail about how inflammation, anywhere in the body, can affect our minds (the frontal cortex).

Also, Kresser talks about the HPA axis, or the hypothalamic–pituitary–adrenal axis. If we’ve learned anything about topical steroid dependency, we know that overuse can lead to a suppression of the HPA axis. And then, add chronic, everyday stress to the situation, and you’ve got a system that is extremely overloaded.

The last big subject he touches on is deficiencies in the body that could be contributing to depression. If we are lacking in certain vitamins and aren’t using it optimally in the body (methylation issues) then it can be throwing our balance off.

I highly recommend this podcast if you wish to catch his more in depth explanations on depression and inflammation in the body. What we are eating and lacking in our diet could the reason we are mentally suffering and struggling to get through certain situations.

Kresser Podcast on Anxiety

Different Atopics Podcast

Dr. Matthew Zirwas, an Ohio MD, gave a very poignant (albeit slightly arrogant) talk in Arizona this October about atopic dermatitis in adults and how he categorizes this condition in order to give the right treatment.

He starts off with saying he is able to fix 90% of his patients. About 1 out of 10 of his patients he just isn’t able to truly help. Perhaps they are those with Red Skin Syndrome?

He checks IgE levels to see just how atopic they are (and to help initiate compliance).

Overall, I don’t appreciate the way he spoke about patients (very condescending), and even stated he had no problem lying to patients to get compliance, but I do wish to write about his lecture because it had interesting points.

One of the first things he began to mention was how awful the mainstream treatment for atopic dermatitis is for patients, especially when it comes to topical steroids. Dr. Zirwas gave a scenario of what usually happened when he was a resident. His doctor would state,

“Here is your triamicilone ointment, use dove soap, wear cotton clothes, stay cool, don’t sweat too much, don’t shower too much, good luck.” And we should have said as they were walking out of the door, “you’re not going to get any better…”

He knew there needed to be a change. He wanted to help people actually get better. He said that topical steroids actually make the skin barrier worse. It may seem to help the symptom in the short run but it’s not fixing the problem, it’s actually causing a problem. He uses the analogy of using prednisone on bacterial pneumonia. The patient will feel great 12 hours in, but then will die because the steroids will have allowed the infection to get worse.

“Topical Steroids is probably one of the worst imaginable things you could do. If you were going to say ‘What’s the worst thing you could do for atopic dermatitis, it would be topical steroids.”

Now, I am going to get a little scientific on you. He used A LOT of big words. The lecture was riddled with jargon.

Dr. Zirwas explained the role of filaggrin for our skin. It is what brings together cyto-skeletal proteins. So, he uses the analogy of a hollow brick or shell as your stratum corneum (the outer layer of skin), and the filaggrin is what hardens it so nothing harmful can get in. It then degrades it into amino acids (which is our natural moisturizing factor, acting as a retainer for moisture in the outer layer of skin). Furthermore, it is a source of urocanic acid (a UV absorber). For those of us who are deficient in filaggrin, we are susceptible to friction, dryness and scaling, and fissuring (cracking).

While explaining this, he concludes that we shouldn’t be calling our condition atopic dermatitis, but cutaneous barrier disfunction. The biggest problem is our broken skin barrier.

Normal skin is like a wet sponge, moist and flexible and hard to tear. Atopic skin is much like a dried out sponge that’s hard, dry, and cracks.

He moves on to the main topic of the lecture: his 4 categories and how to treat them.

When it comes to mild-to-moderate atopics, it’s usually just water and irritants penetrating into the skin. With severe atopics, it is usually proteins leaking into the skin. Finding out which proteins these are will help you understand which treatment will work.

Main Goal: 1) Improve Skin Barrier and 2) Reduce protein exposure

The 1st Category, which everyone fits in, is barrier disfunction. This means lichenification, xerotic, usually worse in winter, and dull red. Treatment: physiological moisturizers (Ceramid based moisturizers). He feels these are effective because they penetrate the stratum corneum (outer skin layer), into the keratinocytes, into the golgi, and helps create natural skin moisture.

Ceramide based products, like EpiCerum, take time. Dr. Zirwas says no one will see results overnight. They need at least a week for results.

Here is where I get a bit off with his method, but it’s his way…

He mixes clobetasol steroid solution in with the creams for patients. He tells them to take the 50mg solution and pour it into a tub of new CeraVe (found at your local drug store) and use that for a month, 2x a day. That is a super potent steroid. Why give someone THAT potent of a steroid, regardless that it is diluted? His reasoning is that he feels the physiological cream makes the steroid less harmful to the skin barrier. Is there scientific evidence for this? I have no idea. I wish there was. And I am not sure if he has them do it for more than a month. If it’s just a month, I can kind of calm down about it, but if he puts his patients on this for a while, then it worries me.

The rest of the treatment for your barrier is: Shower at least 2 times a day and put a physiological moisturizer on right after – use a shower filter – double rinse your laundry or use vinegar in the mix – and use DryerMax dyer balls.

He also went into talking about how he feels ointments are not the best choice for topical steroids. His logic is that steroids are looking for the most oily environment. The more oil in our vehicle of choice (like an ointment), the less likely the steroid with leave and penetrate into the skin. So he sees it as ointment is the worst, then cream, then lotion, then solution is the best. I can see his logic in this, but I don’t know of any scientific research backing this. I know ointments are more occlusive, so I would think, no matter what, the steroid would penetrate.

Category 2: Airborne -type

Aesthetically, men have what Dr. Zirwas calls an ‘inverse t-shirt’ pattern. Everything under his shirt is fine, but all the rest of his skin exposed to the outside is not. And women usually have facial dermatitis. Also, these patients usually have asthma and bad itching at night time.

He feels these are the hardest to treat. The problems are protein ‘allergies’, such as dust mites, pollen, ragweed, etc. These allergins are protease, which means they cause itch and worsening of the condition. These are the TH2 and TH17 triggers (which, when imbalanced, cause issues).

His Treatment: Mattress and pillow case covers (keeps the dust mite poop down) – washing at least twice a day, women washing their face as much as they can (and then putting on physiological moisturizers)

Category 3: malassezia driven

It affects the head and neck area. Usually they have eczema as children, but then into adulthood, it gets bad on their face.

This is his favorite type to treat since it’s easiest to him.

His Treatment: Itraconazole (check LFTs — which is liver function) 100mg 2x a day for 2 months, and ??? on weekends 100mg a day (literally could not understand what he said) – or- Ketoconazole (always check LFTs). He feels the former drug is safer than the latter, and feels orals must be used, not anti fungal creams.

Category 4: staph driven

It usually looks like moist atopic dermatitis with fissuring, crusting, and scabbing. Fairly bad eczema but it explodes/flares

He says he doesn’t swab (which made me angry) because he feels most of the time it isn’t MRSA so he doesn’t need to check. Well, I had MRSA on my skin in Month 8 of my withdrawal. If he hadn’t swabbed me, then I would still have had MRSA.

He says there hasn’t been a decent research article written about this. He also touched on antibiotic resistance and how we will be screwed possibly down the road.

His treatment: Keflix, Doxycycline or Bactrim for 4 weeks – Rifampin for 1 week in the beginning paired with one of three above (says it’s for decolonization) – Bleach bath once a week with clean towels, PJs, and sheets – Antibacterial washes (he likes Dial moisturizing antibacterial body wash) – avoid ointments (since he said most are contaminated with bacteria) – Neosporin 1 week per month on nostrils

Also, another reason for staph- driven dermatitis is decreased cathelicidin production. That means Vit-D production. You need to take LARGE doses, about 4,000 units a day. He says a study says it’s safe to take that much. No idea where that study is, but you can try and find it.

After explaining all of the different categories, he goes into some of the other treatments he gives on top of these if the patients are really bad. Things like immunosuppressants (Cellcept, Cyclosporin, Methotrexate). He says he barely prescribes these things since he can usually get things under control with his normal treatments.

Overall, it was informative. His method of treatment interests me, but not so much the compound steroid with CeraVe. I wonder how these patients would fair without the use of the steroids and just the other elements of his treatment.

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