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.

 

Generic Brands: Are they really Equivalent?

When we are prescribed steroids, we sometimes choose to use the generic brand because it is cheaper. Why spend tons of money on the brand name if you can get the same cream for a lower price?

Well, we may need to rethink our bargain.

A study done in 1991 showed that not all off-brand topical steroid products hold up to their supposed counterpart.

From the abstract: “Six generic formulations of 5 topical steroids were compared for bioequivalence with their trade name counterparts using an in vivo vasoconstriction assay. Two of the six generic forms were found to show significantly less vasoconstriction then the respective trade-name topical steroids.”

Without even meaning to, you could be using a topical steroid that is less potent than the prescribed objective. I have not been able to find evidence that this has been rectified since the 1990’s. This is extremely troubling, something that needs attention if it is still an ongoing occurrence.

What is more discouraging is the fact that this relates to ALL generic drugs, not just to topical steroids.

In 2011, a Supreme court decision was made: If there is a side effect seen in a brand name drug, the company must place it on the label. However, the generic company is not under such law and does not have to share those findings on the label.

As explained by Dr. Roger Steinert in his article, Generic vs Brand-Name Drugs: An Ongoing Debate, he describes the fatal flaw of how generic drugs work. The FDA says that the generic brand must 1) use the same concentration of active ingredient as the brand name and 2) same route of administration as the brand name. However, they are not reviewed and are not as monitored as their brand name “counterpart”. This leaves an immense room for error.

So, next time you pick up that generic brand, remember what you are paying for. What a backwards world we live in…

 

Study From: A Double-Blind controlled comparison of generic and trade-name topical steroids using the vasoconstriction assay. Arch Dermatol. 1991;127(2):197-201. Olsen EA.

They Struggle, Too

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The struggle is real. #WeNeedReform

Different Instructions for the Same Steroid

If things weren’t confusing or muddled enough, it has come to my attention that a steroid can have different recommendations in different countries. The steroid is the same and yet guidelines are blatantly different.

Let’s take Diprosone for example. This is a Betamethasone Dipropionate topical steroid.

In the UK, it states:

  • Do not use on any other skin problem as it could make it worse especially rosacea (a skin condition affecting the face), acne, dermatitis (skin inflammation) around the mouth, genital itching, nappy rash, cold sores, chickenpox, shingles or other skin infections. Ask your doctor or pharmacist if you are not sure.
  • Talk to your doctor or pharmacist before using diprosone ointment. This medicine should not be used under bandages or plasters.
  • Side effects that may happen with oral or injectables corticosteroids may also occur with corticosteroids used on the skin, especially in infants and children.
  • If the ointment is used more often than it should, or more than prescribed, it can affect some of your child’s hormones. This may affect their growth and development.
  • If Diprosone Ointment is used in children, it should not be used on any part of their body for more than 5 days.
  • Do not put the ointment under your child’s nappy, as this makes it easier for the active ingredient of the medicine to pass through the skin and possibly cause some unwanted effects.
  • Usually for adults and children, a thin layer of Diprosone Ointment should be rubbed into the affected area of skin twice a day.
  • Do not use the ointment on your face for more than 5 days.
  • Do not use a large amount of ointment on large areas of the body, open wounds or areas of the body where joints bend for a long time (for example every day for many weeks or months).
  • Most people find that when the ointment is used correctly, it does not cause any problems. However, if you use the ointment more than you should, particularly on your face, it can cause redness, stinging, blistering, peeling, swelling, itching, burning, skin rash, dryness of the skin, in the skin, inflammation of the hair follicles; excessive hair growth, reduced skin pigmentation; allergic skin reactions; dermatitis (skin inflammation); other skin infections, thinning of the skin and red marks.

In Australia, it states:

  • Do not use Diprosone if you have:

a viral skin infection, such as cold sores, shingles or chicken pox, a fungal skin infection, such as thrush, tinea or ringworm, tuberculosis of the skin, acne rosacea, inflammation around the mouth, skin conditions with ulcers,

Unless your doctor tells you.

(^^^^^^^ That seems unbelievably risky).

  • Do not use Diprosone just before having a bath, shower or going swimming.
  • Tell your doctor if: you are pregnant or breast feeding.
    Your doctor will tell you if you can use Diprosone during pregnancy or while you are breast feeding.

(^^^^^ again, whatever your doctor tells you? Why can’t the pamphlet tell me? Or is it that nobody knows and everyone is just guessing…)

  • Apply a thin film of Diprosone Cream or Ointment or a few drops of Diprosone Lotion to the affected skin or scalp twice daily. Massage gently until it disappears. For some patients, once daily application may be enough for maintenance therapy.
  • It is important to use Diprosone exactly as your doctor has told you.

(^^^^^ What if they tell you to go against the guidelines?)

  • Do not use Diprosone for more than four weeks at a time unless your doctor tells you.

(^^^^^^ And here is my point!)

  • Do not use Diprosone under dressings or on large areas of skin unless your doctor tells you

In the UK pamphlet, it says you should not use steroids on an infection site, even though the AU pamphlet says you can do it if your doctor instructs you to do so.

In the UK pamphlet, it says you should not use this steroid under occlusion, yet the AU pamphlet says it is ok if the doctor tells you to do so.

In the UK pamphlet, there doesn’t seem to be a set time recommendation to use the steroid (except for children and for the face), while the AU pamphlet says to use it no longer than 4 weeks unless your doctor says to do so, but doesn’t say how long to use it on the face.

In both pamphlets, it seems to leave pregnant women under the discretion of their doctor or their pharmacist.

Over and over in these pamphlets, there seems to be a lot of “just ask your doctor” or “unless prescribed by your doctor”. What happened to facts? What happened to “these are the guidelines and they need to be adhered to for the patient’s safety”? Moreover, there are doctors who get paid to prescribe certain drugs to patients, so where is the ethical line? Want to check out your doctor? Dollars for Docs

Also, RSS is not a side effect listed. It never is and should be. Red Skin Syndrome is not just a small symptom or side effect that will go away very quickly. This condition affects so much more than just your skin!

Doctors should also be educating their patients about steroid use, the good and the bad, as well as staying up to date with medical findings and research. Even a well meaning doctor can over prescribe this medication so it is pertinent that you know all there is about topical steroids before you begin use.

 

Medical Terminology Explained

One of the many ways we can feel left out of the medical loop is the jargon that leaves us perplexed and, most likely, uninterested in trying to understand our ailment. The doctor either says some fancy words or we end up reading a pamphlet that looks like ancient hieroglyphics. It can be daunting and when we just want relief, we don’t delve any further than the reaching to take a prescription from the doctor.

The time has come for us to decipher some very important medical terminology so we, as patients, can be best informed about our condition and what may lie ahead if we take a certain treatment.


Antiproliferative: of or relating to a substance used to prevent or retard the spread of cells, especially malignant cells, into surrounding tissues.

Atherosclerosis: a disease in which plaque builds up inside your arteries. This can cause different problems including coronary heart disease, carotid artery disease, and chronic kidney disease.

Atrophy: waste away, typically due to the degeneration of cells, or become vestigial during evolution. Picture

Axillae: Armpit

Bioethics: the study of the typically controversial ethical issues emerging from new situations and possibilities brought about by advances in biology and medicine. It is also moral discernment as it relates to medical policy and practice.

Corticosteroids: any of a group of steroid hormones produced in the adrenal cortex or made synthetically. There are two kinds: glucocorticoids and mineralocorticoids. They have various metabolic functions and some are used to treat inflammation. The ones we usually deal with are glucocorticoids that stop inflammation.

Candidiasis: infection by fungi of the genus Candida, generally C. albicans, most commonlyinvolving the skin, oral mucosa (thrush), respiratory tract, or vagina; occasionally thereis a systemic infection or endocarditis. It is most often associated with pregnancy,glycosuria, diabetes mellitus, or use of antibiotics. Picture

Concomitant: naturally accompanying or associated.

Cutaneous: of, relating to, or affecting the skin.

Demodicidosis: skin disease of the pilosebaceous units associated with human Demodex mites that involves predominantly the face and head. Picture

Edema: a condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body. Picture

Efficacy: the ability to produce a desired or intended result.

Emollient: a preparation that softens the skin.

Erythema: superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries. Picture

Exacerbation: an increase in the severity of a disease or its signs and symptoms; a worsening.

Granuloma Gluteale Infantum: a rare skin disorder of controversial etiology characterized by oval, reddish purple granulomatous nodules on the gluteal surfaces. Picture

Gynecomastia: enlargement of a man’s breasts, usually due to hormone imbalance or hormone therapy. Picture

Hirsutism: abnormal growth of hair on a person’s face and body, especially on a woman. Picture

HPA axis: The hypothalamic–pituitary–adrenal axis is a complex set of direct influences and feedback interactions among three endocrine glands: the hypothalamus, the pituitary gland(a pea-shaped structure located below the hypothalamus), and the adrenal (also called “suprarenal”) glands (small, conical organs on top of the kidneys).

Hyperkeratosis: thickening of the stratum corneum (the outermost layer of the epidermis, or skin), often associated with the presence of an abnormal quantity of keratin, and also usually accompanied by an increase in the granular layer. Picture

Hyperpigmentation: the darkening of an area of skin or nails caused by increased melanin.

Hypertrichosifs: a skin abnormality that results in excessive growth of hair. It can be localized to one part of the body, or affect in full. It can affect men or women and is mostly secondary to a genetic disease that causes a hormonal disorder. Picture

Hypopigmentation: the loss of skin color. It is caused by melanocyte or melanin depletion, or a decrease in the amino acid tyrosine, which is used by melanocytes to make melanin. Picture

Iatrogenic: of or relating to illness caused by medical examination or treatment.

Immunosuppressive: (chiefly of drugs) partially or completely suppressing the immune response of an individual. Topically, there is Protopic and Elidel.

Impetigo: a contagious bacterial skin infection forming pustules and yellow, crusty sores. Picture

In vivo: (of a process) performed or taking place in a living organism.

Intertriginous: area where two skin areas may touch or rub together, like armpit or groin

Kaposi Sarcoma: a rare tumor that is named after the dermatologist who first described it in 1872. It is caused by a type of herpesvirus. Picture

Lichen Sclerosis: an uncommon condition that creates patchy, white skin that’s thinner than normal. Picture

Malassezia Folliculitis: an inflammatory skin disorder that typically manifests as a pruritic, follicular papulopustular eruption distributed on the upper trunk of young to middle-aged adults. Picture

Mastocytosis: disorder that can occur in both children and adults. It is caused by the presence of too many mast cells in your body. You can find mast cells in skin, lymph nodes, internal organs (such as the liver and spleen) and the linings of the lung, stomach, and intestine. Picture

Milia: a small white or yellowish nodule resembling a millet seed, produced in the skin by the retention of sebaceous secretion. Picture

Molluscum Contagiosum: a chronic viral disorder of the skin characterized by groups of small, smooth, painless pinkish nodules with a central depression, that yield a milky fluid when squeezed. Picture

Morbidity: is a term used to describe how often a disease occurs in a specific area.

Occlusive: Of or being a bandage or dressing that closes a wound and keeps it from the air.

Ocular Hypertension: an eye pressure of greater than 21 mm Hg. It usually occurs for a long time and doesn’t match with glaucoma.

Perioral Dermatitis: a common skin rash that mainly affects young women. The rash affects the skin around the mouth. Use of a steroid cream on the face seems to trigger the condition in many cases. Picture

Phimosis: a congenital narrowing of the opening of the foreskin so that it cannot be retracted.

Purpura: a rash of purple spots on the skin caused by internal bleeding from small blood vessels. Picture

Stellate Pseudoscars: white, irregular or star-shaped atrophic scars occurring over the sun-exposed areas of the forearms. Picture

Stratum Corneum: the horny outer layer of the skin.

Striae: a linear mark, slight ridge, or groove on a surface, often one of a number of similar parallel features. Picture

Synthetic: made by chemical synthesis, especially to imitate a natural product.

Systemic: of, relating to, or affecting the entire body.

Tachyphylaxis: rapidly diminishing response to successive doses of a drug, rendering it less effective. The effect is common with drugs acting on the nervous system.

Telangiectasia: a condition characterized by dilation of the capillaries, which causes them to appear as small red or purple clusters, often spidery in appearance, on the skin or the surface of an organ. Picture

Tinea Incognito: a fungal infection (mycosis) of the skin masked and often exacerbated by application of a topical immunosuppressive agent. The usual agent is a topical corticosteroid (topical steroid). Picture

Vasoconstriction: the constriction of blood vessels, which increases blood pressure.

Vitiligo: a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. Picture