community, eczema, media/arts, NEA, relationships

how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
Photo by Victor Freitas on Pexels.com

Two days ago I was working on a post where I mentioned a book I was reading (The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho) and how it explained that Koreans have a different mentality about their skin. Their attitude is that skin care regiments are to be enjoyed, rather than thought of as a chore. My thoughts were that it would be amazing if there was a way to cultivate such an attitude into the lives of those with eczema, to get us to see managing our skin not as a burden, but as something we could learn to embrace and therefore lovingly treat ourselves during our routines. My hope is that the better the attitude we can have about the inevitable (having to put in a lot of time to manage our skin), the better we can mentally feel about living with eczema. Speaking of living with eczema…

I watched a webinar from the National Eczema Association that same night called Unhide Eczema: Storytelling for Healing. It features 3 speakers, including Ashley Lora, Alexis Smith, and Mercedes Matz who each went into detail about their experiences with eczema and how they found community through opening up about their individual journeys living with eczema.

The major takeaways from the webinar were:

  • show the world your skin. Don’t hide away and fear the general public’s response but rather embrace your skin and “unhide eczema”,
  • change how you talk about yourself and eczema. Don’t say you are suffering from eczema, but rather say you are living with it. The power of words is remarkable, and having an empowered attitude or at least one of acceptance is so important, especially as it is a part of you. So change the way you talk and change the way you think about yourself and eczema, and
  • speaking of empowering, empower yourself and others by sharing your story. You’d be surprised by how many people have eczema and need to know they aren’t alone.  The power of telling your story might even help you heal!

The idea of empowering oneself when you have eczema and sharing your stories brought me back to an article I had recently stumbled upon about a woman who cured her eczema through faith. Specifically, it was this woman’s power of belief that drew me. I think it can be so hard to find a way to keep believing you will heal when you’re stuck in the midst of a bad flare, and that is when it becomes essential to find your voice and talk about what you’re going through. Whether this is sharing a story about being miraculously cured, or of just finding a product that made you feel just a tad better, the ability to speak up and open up abour your experience is such a powerful tool. For one you are giving yourself a voice, regardless if it’s driven by frustration or elation.

You’re also you’re giving yourself a chance to build community (which I’m sure by now you know I’m obsessed with, but for good reason). Community is so important in this day and age because not only can you pass down the wisdom of the products you’ve tried, but you can continue to reinforce that you are not alone. I can’t state the value of this enough.

Just imagine you are in a public place (let’s say a movie theater) and you start to scratch an itch on your neck and you are feeling self conscious because you didn’t cover up your eczema with clothing layers today, but instead of sinking into your seat or averting your eyes, when you notice the person sitting next to you watching you scratch, you speaking speak up (before the lights have dimmed and the previews have started of course). And said person is like, “Wait, you have eczema too?! Omg have you tried x? And did you hear about the meet-up to visit the new eczema clothing company? Free samples! Oh and have you joined the eczema walking and group? Heard about the fair? Tried the eczema yoga morning classes?” And then someone else overhears your conversation and they chip in, and then another, and then before you know it you’ve made all these new connections and been inspired by all these new ideas on how to augment your own care and all it took was not worrying about hiding your flared-up neck, and being willing to chat. On a side note, apparently the NEA’s annual Eczema Expo is a lot like that dialogue interaction (I hope I can go this year!!).

My point is you have to be brave and take a chance. If nothing else comes of it, at least you are increasing awareness, and that alone helps trickle into better attention by the powers that be, which can lead to policies changes, shape doctors’ standard protocols, cause businesses to make new product lines, etc. Plus you spoke up and expressed yourself, which is huge. It is so important to not feel like you have to hide the part of you that is as impactful and long acting as eczema.

I’m totally with the #unhideeczema movement because it can be so damaging to have to modify everyday life habits to take care of your skin that the last thing you want to do is hide away, not to help heal, but because you feel ashamed. There is no reason to be ashamed. Over 31 million people in the U.S. alone have eczema. You are not alone.

And so that is why I think it’s so important to take these chances, speak up, show some skin! Because this is your life, and yeah you may be living with eczema, but don’t let that stop you from living!

And here’s a recent picture of me living it up with Fi in our comfy autumnal pajama apparel.

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One last thing, if you don’t know where to start telling your story, get some ideas from the National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

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career, eczema, my journey, NEA, travel/traveling

can you have a career with eczema?

architect composition data demonstration
Photo by energepic.com on Pexels.com

Last week in my email I saw a post from NEA about a woman named Helen Piña who described what it’s like for her to have eczema with her job. I was intrigued, as eczema (specifically topical steroid withdrawal) has completely derailed my initial career plans, and because Helen is the first person I relate to whose flares got crazy in the early 20s. I can definitely relate to her about causing little clouds of skin snow to rain down when leaving a spot (ugh), as well as trying to figure out when to scratch but also staying mindful to not end up doing it randomly while working. My catch was that I worked as a physical therapy aide and so I had to do be in close quarters with patients, leading them through exercises and demonstrating activities, so I really didn’t feel comfortable having so a degree of skin issues around them. Physical therapy school was even more difficult in that regard because then I did have to physically manipulate patients (can you imagine trying to stretch someone’s hamstring and them seeing little skin flakes falling off of you?). Personally, I always felt incredibly self conscious about it as it also seems like a health risk. Needless to say, it did factor into my decision to leave that field. That being said, I find it extremely encouraging to hear about how people make it work, keep their careers, and find an new normalcy in their day-to-day.

Nowadays I have been inspired to find other lines of work to that fit my skin too. But more on that another day. Also there are many inspiration people that created careers from having eczema or having someone in their life who does. Take for example, Abby Lai (a holistic nutritionist and creator of Prime Physique Nutrition) or Karen Fischer (nutritionist and writer of The Eczema Detox and other books), and many others.

Speaking of day-to-day life. I signed up a while back to be on the mailing list for the National Eczema Association’s Ambassador program, which means that when the opportunity arises, I am wiling to go meet with various people involved in making policies around eczema to voice my own experiences in hopes of shaping the policies directly around patient input (if you’re interested, here’s the link to the NEA ambassador page). A few days ago an email came through asking for ambassadors who were interested in going to Chicago (with a stipend, food and lodging covered, and travel expenses covered up to a certain amount). I think it’s amazing that the NEA is acting so efficiently as a liaison between the people experiencing eczema and the people and organizations who are doing the research and making the policies that will affect the people with eczema. It feels like their liaisons will definitely create a more lasting impact on the treatment of this condition as it is hitting the nail on the head on more than one front (with the afflicted and with the policy makers). And also it’s awesome because when are you offered a chance to have basically an all-expense-paid trip to go and try and change the policies that impact your day to day life?

 

alternative/holistic medicine, eczema, exercise and activity, flare-up, food and nutrition, my journey, NEA, pregnancy, relationships, skin biome, skin care, sugar, topical steroid withdrawal, topical steroids, topicals, women's health, wounds and infections

how my skin made me take the road less traveled

gray pathway surrounded by green tress
Photo by Skitterphoto on Pexels.com

Today’s post is all about trying to convey what life with eczema is like for me. The first thing I need to stress is that my condition was not always this severe. I can remember a “before”, as my condition didn’t start affecting my skin globally until I was 21 or 22.

So how has eczema affected me?

  • insomnia – Some nights I was unable to sleep until 6am. More recently off and on I have difficulty sleeping from midnight to about 6am.
  • food paranoia – Given that I have legitimate food allergies to peanuts, pistachios and cashews, I know how to deal with food allergies that cause anaphylaxis. What I don’t know how to deal with is the thought that some common food might have developed into being the cause for the severity of my skin issues. Also sometimes I’ll eat something that is usually fine for consumption, and I’ll break out in hives in my mouth inexplicably and the next time I consume said food, it won’t happen.
  • many different diets – I have tried the gambit of elimination diets, auto-immune diets, vegetarianism, paleo diets, sugar-free diets, low-carb diets, detox diets, etc).
  • food-related social repercussion – You have no idea how frustrating it is to have people think I am “just being picky” when I am avoiding certain foods or diets. It’s usually when I’m avoiding gluten, dairy, or soy or other common American-diet staples. What I don’t understand is why people think I enjoy avoiding these foods… do they not know my undying love for pizza and ice cream?
  • intimacy issues – picture not being able to cuddle on the couch while watching a scary movie without covering myself in a blanket to make sure my skin doesn’t touch my husbands. Long drawn out hugs? Nope.
  • skin-to-skin with baby issues – I have adapted to the lifestyle of needing to put a barrier between me and my baby’s skin. When I feed her, I throw a cloth on or wear long sleeves before I put her head on my arms. When I have her in a carrier, I try to put a layer between her face and my chest, or else I know I’ll have to take her out earlier as my chest will start turning red, flushing, and itching.
  • exercise limitations – Up until my junior year of college I was doing many different sports and activities including soccer, track and field, long runs on my own, ultimate frisbee, generically running around like an idiot, etc. Post-eczema life, unless I can get a flare to calm down for months, cardio is a nightmare. Hell, at this point in time, just going for a long walk in the summer induces itching everywhere that takes at least 10 minutes in an air-conditioned building to relieve.
  • summer nightmare – See what I mentioned about walking above and now just add that to general life in the summer. I do well if I don’t move, and if I avoid direct sunlight. Though I also need sunlight for vitamin D (and in my previous life I loved the sun) so I’ll pop outside for a few minutes to bask in the sun’s warm embrace and then I’ll overheat and have to come inside. At least the itching only starts if I sweat.
  • pain (cracked skin) – During certain stages of a flare I dry out (especially at night or after washing my hands or other random times) and my skin will crack. The worst areas are my hands (which will fissure all over) and my ears, as well as sometimes under my eyes.
  • obsession – I spend so much time thinking about my skin and worrying over if I am doing something to make it worse, or not doing enough. It gets exhausting really.
  • career switching – I dropped out of my physical therapy doctorate program because I just couldn’t deal with my skin. I wasn’t sleeping, I was uncomfortable sitting (more on that in a bit), and I couldn’t stand being in an air-conditioned room (see below), or being touched or coming in contact with another’s skin, which made it incredibly difficult to practice the hands on aspects of PT. I am now still in a stage of making my own career, which while exciting, is stressful when I have to talk about it because it’s not a clear cut “oh, yeah, I do X” anymore.
  • fear of infections – As my skin barrier is compromised so often, the risk of infections, primarily Staph, is high. I spend a lot of time wondering if I am infected and worrying when I catch a cold or something that I have contracted Staph (again).
  • hand washing (pain/itching) – Imagine how many times you have to wash your hands or use hand sani when you are a PT student working in a clinic. Doing dishes is irritating enough. Sometimes even just taking a shower will irritate my skin.
  • cleaning frequency – Given that I shed skin faster than the average human, I spend a lot of time cleaning to try to not live in my own skin dust filth.
  • social situation aversion – When I am flaring, I have no desire to go out, not only because I worry about the stares I get for physical appearances, but also because it takes so much energy to deal with varying temperatures, varying foods, varying stressors, usually a lot of sitting, the inability to play/dance without itching, etc.
  • general discomfort (pain, itch, smell) – Eczema this severe is uncomfortable. The obvious is that it itches, and not like a “I have a random little itch” but more on the level of if a swam of mosquitoes bite you all over your body but instead of having angry welt-y bite marks externally, they are all inside your body and not visible to anyone. The pain comes from the cracking I mentioned above, as well as the pain of the self-inflicted wounds from scratching too hard. When I have a bad flare, I develop this scent that I call the burning rubber skin that I loathe.
  • depression and anxiety – It’s no surprise that aggressive and long lasting flares take an emotional toll. As I spend time in pain, itching, paranoid about foods I eat, avoiding people, and unable to exercise and play as I normally would, sometimes my moods take a nose dive.
  • money spent – From skin care lotions and moisturizers, general soaps, bath products (bleach, epsom salt, apple cider vinegar), natural house cleaning products, dry brushes, the rebounder, to the doctors’ visits, etc, this condition isn’t cheap.
  • doctor visits (dermatologists, endocrinologists, neurologists) – There is something very frustrating about seeing many doctors and still getting no relief. I have moved a few times in the last past 4 years and as a result have an even larger number of individual doctor visits under my belt. The general consensus? I am fine (as in no underlying crazy cause of my skin issues like cancer), but I have eczema. Oh and have I tried using steroids creams? -.-
  • hormone imbalances – Since I spent so much time inflamed, I usually have a highly elevated level of immune stuff, like my white blood cell count. When my skin first started going haywire, I also have high cortisol level, which made doctors think I had a hormonal imbalance and first order an MRI of my brain.
  • forever fielding questions – “Have you tried X??” “What’s wrong with your skin?” “Do you use lotion?”
  • excoriation disorder (dermatillomania) – Due to very often having flaky skin, I have developed a picking disorder where I spend inordinate amounts of time trying to remove dead skin from my body. It’s become partially therapeutic and partially me trying to exert control over my uncontrollable presentation.
  • scratching OCD – I scratch all the time. In my sleep, when I’m stressed, when I’m relaxing. I don’t even notice I’m doing it sometimes.
  • scarring – Go figure from all that scratching I’d have scars.
  • ring wearing/jewelry/piercings – I no longer wear my wedding band on my left hand because the ring finger on that side is usually swollen. I wear it on my right now. I also had to take out my belly button piercing, my nose piercing, and all ear piercings except tragus one because the skin started itching so badly around them all.
  • hot inflamed skin with cold chills/shivering – One of the worst stages of a flare is when my skin is constantly wet and weeping and heated, but I’m losing so much heat that I am internal freezing and will shiver uncontrollably.
  • winter is bad – It’s hard enough to regulate my body temperature without the weather outside being frigid.
  • sensitivity to pressure contact (sitting/laying down) – This made PT school very trying. Hell, going to a doctors office and laying on the table, or sitting on a chair for too long made my skin feel terrible and heat up and start itching. This is even through wearing long sleeves and pants.
  • nervousness = flares – Some nervousness is good for keeping our brains alert. Unfortunately, any little bit of social nervousness (like before a practical or talking to new people) would cause me to start to flare and itch.
  • wrinkly, swollen skin – Still not sure why this happens (maybe it’s a product of topical steroid withdrawal) but the skin around my joints especially, on the extensor side, starts to look like that of an elephant.
  • discoloration – From redness to drying out gray/white, I am a veritable human mood ring.

And since people love me and will forever want to help, here is a list of what I have already tried:

  • topical steroids (for a good 20 years as this was the main accepted solution to eczema for decades)
  • topical medicines that are not steroids (Elidel/protopic, etc)
  • oral steroids
  • lotions/moisturizers (cetaphil, cera ve, aquaphor, dove eczema line, exederm, burt’s bees, obscurely-named-other-ones, etc)
  • going moisturizer free (actually does help with the red/weeping stage)
  • ocean water
  • chlorinated pools
  • naturopathy
  • acupuncture (including herbs, cupping, and massage)
  • diet (gluten free, soy free, dairy free, vegetarian, sugar free)
  • phototherapy (clinically done in light boxes, and just being in the sun)
  • antihistamines
  • sleep aid pills
  • yoga, meditation, and deep breathing
  • coconut and sunflower oil
  • bleach, epsom, and apple cider vinegar baths
  • antibiotics
  • collagen powder (edible)
  • collagen cream
  • wound care
  • probiotics

Update: I have not tried any biologics because I have been pregnant and am now nursing.

Despite all the shit that comes with eczema, there have been some silver linings in my experience including:

  • Having to deal with eczema year round has made me live much more seasonally. In the warmer months I try to take advantage of being able to walk outside for hours and garden to get vitamin D and get exposed to bacteria in the soil (and as stress relievers). In the colder months I turn to herbal teas and nourishing soups, and bundle up well to go on walks to get fresh air. I pay a lot more attention to what can grow when, and try to eat accordingly (like lighter foods in the summertime).
  • Having dealt with the difficulties of eczema for so long, in juxtaposition pregnancy wasn’t half bad (though to be fair my belly was small and I didn’t have morning sickness… but discomfort with sleeping? Aversions to certain foods? Tired randomly? Feeling generally uncomfortable? Yep, I was used to that all already).
  • In effort to control my flares, I am constantly open to trying new things (though my wallet isn’t!).
  • When I first came up to visit Jake, before we were dating, we had an honest conversation about eczema and I told him how bad it gets for me, and he still wanted to be with me. To this day, I’ve never had insecurity about my skin around him.
  • I have learned to really appreciate the good days. As a result, I’m generally even happier of a person.
eczema, my journey, NEA, relationships

love is more than skin deep

close up of tree against sky
Photo by Pixabay on Pexels.com

One aspect that sucks about eczema is how detrimental it can be for finding love. A large part of our society, for better or worse, may notice visual aspects of a person such as our skin first, and having rashes and redness that many people perceive to be contagious doesn’t help much when you’re on the market. Also, even if people aren’t noticing our skin, we may think they are and be more self conscious or less confident because of our own insecurities and perceptions.

Though it can see hopeless at times, there are many people out there who do suffer from eczema (or other visible skin conditions) that find love and prove that most people do see more than skin-deep.

The National Eczema Association had a post a while back that featured a few individuals sharing their stories about their experience with having eczema and dating, marriage, and intimacy, and how they manage to live happily ever after. The post also mentioned the character traits that the interviewees found most desirable in their partners: “openness, honesty, and authenticity”.

My own experience with eczema and romance has been fairly tame. I didn’t date until I was about 20, and when I first had the global skin flare my junior year of college I just retreated into my room for the most part and focused on how to deal with school rather than focusing on romance. I think at the time I was stressed enough by school in general that dating wasn’t really on my mind, and if it was I assumed my weird personality would be more of a deterrent than my skin. Though, when I was on oral steroids and antibiotics I remember going out a lot more and being a lot more flirty in general because my skin felt better. I think personally I just shifted wildly between hiding when I was flaring badly, to going out and being extremely social when my skin was under control. My skin was a bit bad after I graduated when I was working as a physical therapy aide back in Maryland, but I think I combatted that era of life by eating better and being freakishly active. I went out dancing a lot, but also ran every day and enjoyed hours in the sun. I also generally have an easier time with the visible skin issues in the warmer months, so even though I still slept poorly, I felt more comfortable in public with my skin because I knew it wasn’t as noticeable to others. When I started dating Jake, I remember the first night I stayed over his place I asked him why he kept his socks on all the time (even when the apartment was heated), and he said he had bad eczema that looked really gross. I told him I had eczema too and that he shouldn’t have to hide his feet and made him take off his socks. When my flares inevitably came back and plagued my entire body I did have moments where I felt really insecure I’d flood him with a whole host of questions. Do you want to be with me if I never heal? If I’m always flaky? If I’m always stressed by my skin? If I never want to go out anywhere? If some days I can’t cuddle with you? I’d ask him: why do want to be with someone who’s face was also dry, swollen and puffy? I am not pretty- I don’t even have skin! He always answered that I was beautiful and that my skin wasn’t want made me beautiful, and that yes, he wanted to be with me even if I never healed, we’d just learn to cuddle with sheets between us, and that he believed I would heal and it would just take a while and there would be good days and bad. Eventually I stopped having the insecurities around my skin and our relationship, and generally I don’t worry about that even if my flares are bad, which I think has helped us get much better at handling them. So in my experience, it just takes finding the right person, and eczema doesn’t impact that.

In regards to the experience of others, Abby Lai (of Prime Physique Nutrition) had a post and video a while back about dating when you have eczema that covered a lot of her own personal experience as well as advice to both the person with eczema as well as the partner.

I also came across a post by Shelly Marie, a blogger of eczema who did interviews with her parents and her boyfriend about how her eczema affects them. I thought it was a really cool idea, and so for this post, I asked my husband some of the questions.

 

Interview with Jake:

How long have you known me?

  • 6 years

What were your first impressions of me?

  •  Funny and incredibly genuine. A very caring and intelligent person. Also, hot.

Could you see that I had a visible skin condition? If so, what were your opinions on it?

  • No but I became aware of your skin history early on.

Did do you know what eczema was?

  • Yes, I have it.

Do you understand more about eczema now since we’ve been together?

  • Yes absolutely. We even do research together now.

Has my eczema ever affected me more than physically?

  • Yes, it is a stressful disorder that has at various times lead to compulsions, fear, chronic sadness, and stress.

What are your opinions on eczema and mental health?

  • The former can lead to problems with the latter.

Has my eczema ever come in-between our relationship?

  • Not exactly, though at times it has made some common/everyday things difficult, like prolonged physical contact, temperature control, going out and socializing, and eating.

How does my skin affect you?

  • It worries me when you aren’t feeling well. I internalize your stress and just want you to feel better. It hurts me to see you in pain.

Have you ever had a bad experience with my skin? If so, what was that and how did you help resolve it?

  • Yes. During dry out periods the flaking can be extreme and requires diligent house/car cleaning routines. During really bad flares, we need to almost entirely avoid physical contact. Hoodies and blankets help with that!

When I have a bad flare up eczema how does that affect me from your point of view?

  • It stresses you out and is deeply frustrating to you. It restricts common activity, and makes you worry about causality, especially dietary causes.

Do you think there is enough help out their for sufferers with a skin condition? If not, how do you think this can be changed?

  • No, there isn’t. The biggest thing that needs to change right now is overprescription of corticosteroids. Doctors almost universally address symptoms and not causes of this disorder. There needs to be an increase in education on the relationship between lifestyle and systemic inflammation. Such a relationship is known to exist and doctors should address the root causes of inflammation long before risking potentially permanent damage via misuse and overuse of prescriptions.

What would your advice be to others who are in a relationship with someone who has eczema (or any other condition)?

  • It’s important to keep in mind that this is a manageable condition and to be incredibly observant of any behaviors and habits that correlate to flares.

 

So there’s a taste of what it can feel like for the person on the other side of the eczema curtain.

I’ll leave you with the immortal ever-applicable words of India Arie, “I am not my hair, I am not my skin, I am the voice that lives within”.

 

REFERENCES

Crane, Margaret. “Happily ever after (with eczema).” National Eczema Association, https://nationaleczema.org/happily-ever-eczema/. Accessed 21 May 2018.

eczema, NEA, skin care, topical steroid withdrawal, travel/traveling

my travel wishlist

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As the movement of creating more open dialogue around living with eczema grows, more and more events and opportunities are flourishing to help spread the word too.

My top 5 choices of places/events/conferences/camps/programs I would want to attend include:

  • Eczema Expo: Created by the National Eczema Association, this event brings together patients, caregivers, medical professionals, and product makers all to talk and connect over eczema. They even give you an idea of what the trip is like here. It just seems like a Renaissance Faire for sufferers of eczema and I’d love to go next year (hopefully it’s in Maryland or Massachusetts one year though!).

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  • Camp Wonder: This is an amazing program run by the Children’s Skin Disease Foundation that allows children to experience camp despite their skin conditions. I would love to be a counselor one day!

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  • Avène Hydrotherapy Center: First of all, this center is in the south of France, which is a beautiful land I long to re-visit. The spring supposedly was discovered to have healing properties when a Marquis’ horse was cured of pruritus after a few swims.  In time a hydrotherapy center and dermatological lab were built there, and so far, the testimonials of people getting treated there are beyond promising. Plus, like I said before, south of France. Be still my heart. Note: Avène also has US product lines now.

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  • Hannan-Chuo Hospital – A hospital in Japan thats dermatology department is run by Dr. Sato, who does a lot of research and treating of topical steroid withdrawal. You check in as a patient for a few months, and come out cured apparently. Unfortunately his blog is only in Japanese, but I’ll link it here for you multilingual individuals).
  • The Dead Sea – I hear its mud/water has some amazing healing properties due to its salts. It seems like many companies have turned the mud/water into packable salts for medicinal cosmetic lines, for example making bath soaks and other products, but I would love to be able to go there one day and just roll around for myself in the sea.

Other random events and classes that would pique my interest if I came across them and make me want to up and travel would be:

  • yoga retreats for skin sufferers
  • skin herbal remedy classes
  • book chats by writers with eczema
  • eczema in the arts conventions (I’m thinking like a comic con for skin!)
  • eczema spas (which I liken to Korean spas in my head)

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

eczema, flare-up, NEA, topical steroid withdrawal, topical steroids, topicals

my addicted (skin) life

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As the science of skin (dermatology) progressed, more information was understood about what this large organ is made of, how it works, and how to keep it healthy.

I won’t go into the skin anatomy today but one thing that was more or less universally accepted was: dry skin = bad skin. So in practice this meant that doctors prescribed patients to take baths and let our skin absorb lots of water and then get out, lightly pat dry, and apply the topical medication. An NEA webinar mentioned you need to get the topical medication on within 3 minutes of getting out of the water, which for a full grown adult with eczema over the entire body, proves to be a bit of a challenge.

So now let’s go more into the specifics about topical medications, let’s start with steroids. Topical steroids come in 7 classes: from Super Potent to Least Potent. A high potency topical steroid is one we’d put on our hands/feet/wrist/ankles or the areas that are more likely to have excessive thickening. A mid-strength topical steroid may be safer for the whole body but only for a 3–5 days for thin skin areas (around the eyes, mouth, genital areas). A low potency topical steroid includes the things you can get over the counter like hydrocortisone (1%).

A useful fact to keep in mind is you should know the name of the steroid you will/are using as well as the concentration (listed as a percentage). When in doubt, it doesn’t hurt to google up your specific steroid to see what strength it is if you are not sure, or ask your doctor.

Now for the more recent developments in the eczema world: the non-steroidal anti-inflammatory medications (like Protopic and Elidel). Both are types of topical calcineurin-inhibitors (TCIs), which is a big term that just means they block T cells and stop the too much cytosine (a protein that can cause redness, inflammation, and itching) from being released. TCIs are great because they help the skin without decreasing the amount of healthy cells, and without going as deeply into the skin layers (unlike topical steroids, which cause thinning of the skin if used for a long time).

Protopic is usually stronger than Elidel, but both are often seen as medications to be used after you’ve finished the course of a mid-strength topical steroid, the reason being is that the TCIs can be used for longer periods of time. They are said to be safe to use around those thin-skinned areas, but that they generally don’t work on lichenified (or thickened) skin.

An even newer development was Eucrisa. This is a non-steroidal topical ointment that works by blocking an enzyme called phosphodiesterase (which is increased in immune cells of people with eczema), which then also blocks out the production of excessive cytokines. More research is still to come, but Eucrisa seems to be another promising non-steroidal option.

Lastly, let’s talk about topical corticosteroid (TCS) withdrawal (also known as topical steroid withdrawal or TSW). The health community is still hotly torn on this issue. On the one hand, in 2015 it was stated that the TCS withdrawal is a potential adverse effect of prolonged use of topical steroids, though it was said to be a rare occurrence with not a lot of evidence backing it, and that it was probably caused by topical steroids being used incorrectly. To be honest though, it seems it would be difficult not to have misused topical steroids in the past as the research behind how much to use and how often has changed over the years.

On the other side, there are organizations like the International Topical Steroid Addiction Network (ITSAN) or individuals like Dr. Rapaport that argue that the Red Skin Syndrome (RSS) is directly because of the topical steroid use/overuse/abuse in societies.

An interesting blog post I came across talked about how much cortisol a healthy body can normally produce, and how the commonly prescribed topical corticosteroids measure up. His analysis was that the potency of prescription steroids are often so much higher than what our bodies could naturally produce, which might explain why it seems so much more common to hear about people’s skins getting addicted. He was testing out how using very low potencies and/or low doses to mirror how much cortisol our bodies could normally produce, and see if that helped him maintain his skin throughout the winter.

Also food for thought, we know that studies are incredibly expensive to fund, and so to get a lot of evidence backing up TCS withdrawal or RSS, there would need to be big companies supporting the research. However, if these studies could then have results that jeopardize major supporters (like a pharmaceutical company), it becomes less likely any such companies will want to fund said studies. I’d bet it will be a while before we get a lot of evidence around more specifics of TCS withdrawal/RSS.

 

REFERENCES

Carr WW. Topical Calcineurin Inhibitors for Atopic Dermatitis: Review and Treatment Recommendations. Pediatr Drugs. 2013 Aug;15(4):303-310.

Hajar T, Leshem YA, Hanifin JM, Nedorost ST, Lio PA, Paller AS, Block J, Simpson EL. A systematic review of topical corticosteroid withdrawal (“steroid addiction”) in patients with atopic dermatitis and other dermatoses. JAAD. 2015 Mar;72(3):543-549.e2.

Paller AS, Tom WL, Lebwohl MG, Blumenthal RL, Boguniewicz M, Call RS, Eichenfield LF, Forsha DW, Rees WC, Simpson EL, Spellman MC, Stein Gold LF, Zaenglein AL, Hughes MH, Zane LT, Hebert AA. Efficacy and safety of crisaborole ointment, a novel, nonsteroidal phosphodiesterase 4 (PDE4) inhibitor for the topical treatment of atopic dermatitis (AD) in children and adults. J Am Acad Dermatol. 2016 Sep;75(3):494-503.e6.