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. 

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. (1516) It is well-established that the balance of gut bacteria plays a key role in the formation of a proper immune response. (1718) 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

 

 

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

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.

Topical Steroid Label Part II

Class 1 steroids, like Clobetasol Propionate, will always be the ones you see in studies showing bigger problems than less potent classes. However, that does not mean less point steroids are super safe.

So, I looked up the insert for the steroid I used, Alclometasone Dipropionate, which is a Class 6 steroid (Classes range from 1-7, 1 being the highest).

“May be used in patients 1 year of age and older, although safety efficacy of drug use for longer than 3 weeks have not been established.”

Not…. been… established. That translates into “we don’t know anymore after 3 weeks.” Also, it should NOT be used in children under 1 year old (although my personal belief is to steer clear of steroids on newborn skin).

The insert says to apply 2-3 times daily. We still see wavering views on this subject, some research showing putting on steroids creams more than once a day does not increase the likelihood of it working, but actually just increases your chances of overusing. Source

“If no improvement is seen within 2 weeks, reassessment of diagnosis may be necessary.” This doesn’t say “if this isn’t working we will just give you more potent steroids,” it states that there my need to be a reevaluation. Speak to your doctor about such matters because it is unbelievably important that you are diagnosed correctly. Perhaps you need a swab done to see if you have an infection? Or perhaps you are allergic to something inside the medication, or to a chemical or food you are use.

“In another study, Aclovate (alclometasone dipropionate) was applied to 80% of the body surface of a normal subjects twice daily for 21 days (3 weeks) with daily, 12 hour periods of whole body occlusion.” The HPA axis decreased 10% in these patients. This is a Class 6, mildly potent steroid, and within 3 weeks there was HPA axis suppression. First, 80% is almost full body, and some doctors will tell you to do that. Secondly, what is a normal subject? Someone with healthy skin? If so, someone with eczema will be even worse off since our skin barrier is damaged. Source

One of my favorite quotes is, “Topically applied Aclovate cream and ointment can be absorbed in sufficient amounts to produce systemic effects.” There is that word again: systemic. This Class 6, mildly potent steroid, can start affecting our adrenal glands. If a doctor says this isn’t true, hand them an insert.

This insert also says the same thing as Clobetasol Propionate regarding child toxicity and infection warnings. It also specified that it should not be used on diaper dermatitis.

“The following local adverse reactions have been reported…”

Who reports this? I never have. Where are these reports being made, or sent? Who sends them? Patients? Doctors? I know when I’ve stated adverse affects I’ve been told I was wrong by a doctor, so I know they weren’t reporting what I saw. I can only imagine that the list given is much smaller and/or incorrect due to lack of reporting.

But, check this out, you CAN do something: REPORT YOUR ADVERSE EFFECTS

Overall, there seems to be many unclear and unknown scientific facts about this steroid (most likely for all, but I can’t speak fairly on that since I have not read every single insert). Are we as patients supposed to be fine about this? When doctors tell us they are perfectly safe when we have concerns and see adverse affects, what evidence do they possess?

More research, management, and reporting must be done for the safety of patients.

How is this Legitimate?

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

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“… 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.”

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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.

Topical Steroid Label

Whenever we purchase a prescription, there is always an insert or attached label outlining that specific drug’s usage. More often than not, we toss it into the trash. What we should be doing is taking the time to read the insert because it holds extremely valuable information. However, on the contrary, there is misguided information that needs to be looked at closely.

The following is seen on the insert for Clobetasol Propionate, a Class 1 Super Potent steroid:

In bold letters: do not use for more than 2 weeks, 50g per week, because it can suppress the HPA axis.

First off, it warns not use to this for more than 14 days. What it does not say is “Do not use for more than 14 days unless your doctor thinks it’s cool.” There is a definite reason why it states that warning despite what your doctor tells you.

HPA axis suppression is not something you, or your doctor, should take lightly. You are highly increasing your chances of developing Red Skin Syndrome and creating an imbalance in your adrenal glands.

Also, what does 50g a week mean to you? Most likely nothing because you are not a doctor and have no idea how to measure out 50g.

Let’s say your doctor gave you a tube that was 60g large, and their instructions were to “use on flaring areas once a day.” That was it. That was all they told you. Well, your thighs, hands, elbow area, and neck are flaring. These areas combined, using the fingertip method, come out to around 10g a day of use. 10g x 7 days = 70g a week. That is over the maximum limit of use.

But let’s take this further. In bold, the insert states:

“Precautions: General: Clobetasol Propionate is a highly potent topical corticosteroid that has been shown to suppress the HPA axis at doses as low as 2g per day.”

2g per day! That is around 4 fingertip units a day.

2g x 7 days a week = 14g a week. So, more accurately, 50g a week is WAY too much. Even if 14g a week is seen as the ‘minimum’ to cause HPA axis suppression, that means THERE IS A POSSIBILITY it can happen with just 14g a week, which in turn shows there is a LARGE POSSIBILITY it will happen at the ‘safe usage’ of 50g a week.

That 36g difference is remarkable. This is something that rarely ever gets explained in a doctor’s office. When a doctor gives you the instruction to “use sparingly”, this is what they should be explaining to you.

But let’s move on.

When using steroids, adults are not equal to children.

“Pediatric patients may be more susceptible to systemic toxicity from equivalent doses due to their large skin surface to body mass ratios.”

First off, the word systemic should bounce out. If any doctor tells you that topical steroids “are not systemic”, they are lying to you. Just because you are not orally using them, does not mean they do not penetrate our skin and enter our system.

And two, this should put up a huge warning flag. If 14g a week is the lowest dose they saw suppression in for adults, try halving that, or even one quarter. That would be between 4g and 8g a week for small children and babies. And, because they are smaller, there is a larger chance of suppression. Besides, in bold caps, the insert says, “Use in children under 12 years of age is not recommended.” If a doctor prescribes this to a child under 12, especially a baby, know that this recommendation should read more as a forbiddance.

“If concomitant skin infections are present or develop, an appropriate antifungal or antibacterial agent should be used. If a favorable response does not occur promptly, use of clobetasol propionate should be discontinued until the infection has been adequately controlled.”

First off, you’ve got the vague “promptly” in there. Give us actual numbers, perhaps, “1-2 days”. And secondly, you should NEVER use steroids on an infection. It will just make them worse. Check out Tinea Incognito.

“#5 Patients should inform their physicians that they are using clobetasol propionate if surgery in contemplated.”

I had never heard of this before, so I do hope this information is shared in the doctor’s office and not left for the patient to (not) read in the insert.

And last, but certainly not least, in lovely bold writing, “should not be used on the face, groin, or axiliae”. This isn’t a recommendation. This is a definite warning.