Dear BGLow,

Patient undergoing TSW sees improvement in hair loss over time

I wanted to share this photo with you showing how Steroid Addiction can lead to dramatic hair loss. I personally have lost at least 1/2 of my hair (head and body) over the last 3 years while I was on Clobestol Propionate, a super potent steroid. I’m only about 120 days into withdrawal, but am starting to see little hairs grow in my hairline (where I lost a lot of hair).

I found this photo from the ITSAN (International Topical Steroid Addiction Network) forum. This individual shows how his hair growth improved over a year after withdrawing from steroids. So you see, BGLow, there is hope for you! You will regain your health and hair once again! Stay strong, hun. xo

A Song by Radiohead

“Creep”

When you were here before
Couldn’t look you in the eye
You’re just like an angel
Your skin makes me cry
You float like a feather
In a beautiful world
I wish I was special
You’re so fucking special

But I’m a creep
I’m a weirdo
What the hell am I doing here?
I don’t belong here

I don’t care if it hurts
I want to have control
I want a perfect body
I want a perfect soul
I want you to notice when I’m not around
You’re so fucking special
I wish I was special

But I’m a creep
I’m a weirdo
What the hell I’m doing here?
I don’t belong here

She’s running out the door
She’s running out
She runs runs runs

Whatever makes you happy
Whatever you want
You’re so fucking special
I wish I was special

But I’m a creep
I’m a weirdo
What the hell am I doing here?
I don’t belong here
I don’t belong here

I’ve Been Doing Circles

Mom offered to send me away to Vancouver, British Columbia for the Summer/Fall to live with my sister since the weather there will be much more comfortable there. I went for 10 days in July 2010 with my family. I’m pretty sure I fell in love with Vancouver the second I stepped out of the airport. The air was incredibly fresh… cool and crisp. Oh, and the glorious mountainous landscape surrounding the entire city and exciting metropolitan. It’s absolutely gorgeous there and makes me feel sorry for Ontario-folk.

Summers in southwestern Ontario are hot and humid, making it difficult to enjoy the great outdoors. I’ve always been sensitive to heat. In the past, I’ve always been “warm-blooded” and require abnormally cool temperature to feel comfortable. It was 23 degrees Celsius (71 Fahrenheit, if you’re American) the other day and decided to go for a walk armoured by a long-sleeved shirt, jeans and scarf… I was hit with a bad flare. I just couldn’t take the heat…

So I guess it’s very likely that I’d be spending my summer indoors if I stay in here, which would make this whole experience that much more of a drag, but will allow me to be comfortable taking baths and being taken care of ’cause yes, my 26-year-old self at the moment needs taking care of. I wouldn’t expect my sister to hold my hand through this. She is a busy woman and has her stuff going on.  I’d miss Krzys (my boyfriend) terribly, but feel like I’d survive.

The original plan was just to go in September when I know I’d be feeling a lot better, but wonder if leaving earlier and for longer would benefit me. It’s between going somewhere beautiful and comfortable climate-wise, and being indoors and comfortable in my own home. I don’t know if I can make this decision for another month or so. The improvement I’ve seen lately is encouraging, but would hate to go through a flare/panic attack and flew back home in haste (and potentially a waste of money). But if I don’t go, I’ll still be going in September/October and enjoying myself. Hmm… My gut is telling me to wait.

Was reading Jake & Libby’s blog and am amazed by how disciplined and healthy they were throughout Jake’s withdrawal. They just recently made a post celebrating Jake’s healing success. He begun withdrawal November 2011, so took about 17 months to heal (his symptoms were pretty severe).

If you haven’t already, you should definitely take a look at the blog. I love how much Libby has been there for Jake and how they seem to have come out of this whole ordeal. Very inspiring. There’s nothing like seeing solid evidence of healing from what so many of us thought was flat-out Eczema. Before I started with the heavy steroids, my skin was nearly normal– sensitive, but fine all the same. Seriously think that’s where my skin will be at when this is all over. Cannot mother-friggin waaaait!

Part 2: Reasons to Say “No” To Corticosteroids

3. Steroids make your skin drier over time

Over time, corticosteroids negatively affect normal functioning of the adrenal glands, which are ultimately responsible for sebaceous gland activity through its production of androgen. If the adrenal glands are ultimately responsible for our oil production but are damaged by steroids, we are left with drier, itchy, irritated skin. Although excess oil can be a drag, oil functions to lubricate and keep our skin cells youthful and healthy.

In my teenage years, I was a very oily skin type. Every cosmetic I bought was dedicated to mattifying my skin. I blotted every half hour, especially during the summer and no matter which powder or clay mask or potion I used, my pores (actually, sebaceous glands) produced oil at lightning speed. This drastically changed 3 years ago, which also happens to be when I begun using corticosteroids (Clobestol Propionate) on a more regular basis to control skin reactions I was having to cat dander.

Since then, it’s been very strange watching by skin change from a walking oil mine to dried paper mache – two polar extremes. A few months into using Clobestol (2010), I noticed my skin was more like a “normal” skin type during the summer – less oily overall, still an oily T-zone but more balanced. I celebrated and thought that the skin gods were finally responding to my prayers. I accredited my full-time air-conditioned desk job and believed my cool, dry workplace to be my saving grace. No doubt it helped, as the next summer (2011) I was worse off – too dry all over and very irritable.

Approximately 2 years after my first course of regular use in Winter 2011, I begun to notice that dry, red, irritated patches were developing on my cheeks. I blamed the cooler, drier weather and slapped on more moisturizer and more steroids. Summer 2012, I was dry and blamed it on my old age. I figured that I’ve always had eczema and so I will have to live with being irritated and reactive, and just so happens that I’m drier too. Fall 2012 was even worse. My face became very dry, tight, hot and scaly. It stung to put even the mildest cleansers (CeraVe, Cetaphil) on face.

The best medical explanation I had was steroid-induced Rosecea. I soon found out about “Steroid-Induced Rosecea-like Dermatitis” or SIRD for short. You can read about that in this medical journal.  I’ll be doing a summary post on this article coming up soon. If you Google “side effects of corticosteroids,” one of them is perioral dermatitis, which is what my skin (and many others from the ITSAN forum) was slowly morphing into.

4. Spreading facial eczema is a common side effect of corticosteroids.

Your doctor, at least mine, has not mentioned this one before. Many on the ITSAN forum have mentioned that their doctors have only ever brought up “Perioral Dermatitis,” as it’s called, when the occasion occurs after having prescribed steroids for months or even years. The issue with this is it seems to happen to too many steroid-users. (This begs the question: So why are doctors waiting to say something to their patients?! And why are they prescribing something that often worsens the issue?)

Perioral dermatitis is an extremely delicate skin issue to manage, as I speak from experience. The key word here is “manage”; it won’t ever fully recover until you are fully healed from withdrawal. Many people going through withdrawal (knowingly or not) experience irritated, weepy, cracked skin and/or red around the mouth, eyes and cheek area – even if steroids were never used on the face. Remember – the skin is a single organ and users experience “metastatic” dermatitis on areas that were never directly in touch with their creams and ointments.

You will learn in Dr. Rapaport’s medical literature about Red Face Syndrome, which is a direct result of steroid use. Studies show that steroid use leading to perioral dermatitis can be a short as two months, although the average is 1-2 years and more than 6 years is common. In the 20 years that I’ve been using steroids, I begun experiencing the first buds of perioral dermatitis about 3 years ago when I started using Clobestol (which I had 4 years before) on a more regular basis to control inflammation. I used it very very sparingly, though more frequently – one week course every 3-4 weeks, which is the recommended use deemed as “safe” by doctors and dermatologists. It was only 5-6 months after that that my skin started morphing into what is now perioral dermatitis.

Part 1: Reasons to Say No to Corticosteroids

1. Your body stops producing its own anti-inflammatory defense mechanisms the more steroids it receives.

The steroids that your doctor offers you are a synthetic form of anti-inflammatory agents that your body naturally produces within your adrenal glands. Your adrenal glands are responsible for keeping your skin calm through its production of corticosteroids, along with the production of many other very important things within your body’s ecosystem. The adrenals are susceptible to malfunction as you become dependent on steroids.

Sometimes your skin/body becomes overwhelmed and is given steroids to speed its anti-inflammatory response. Initially, the cream/ointment will help with the inflammation and keep it at bay when another flare arises. The big issue with this is the body begins to depend on the synthetic feed of steroids for its supply of anti-inflammatory agents, which often results in dependency of the prescribed creams, ointments, pills and injections. The adrenal glands cease to produce its own corticosteroid as it understands that the body is receiving it elsewhere. In a sense, the adrenals become lazy.

I’ve used this analogy before… It’s similar to how your mom does your laundry for you. No matter how many times you tell her, “No, no mother, I’ll do it because I can,” she continues to do it despite the fact that you’re a grown, able adult. Eventually, you know she’s just going to do it anyway, so you stop checking if there’s any dirty laundry as you assume that laundry is no longer your responsibility. Like mom, the steroids are the easy, simple solution to fixing your laundry. And like you, your adrenals just lay back, relax and watch. This dependency often means that our bodies’ natural anti-inflammtory response is impaired as it no longer sees a need to add to the already mass amounts of steroids you’re ingesting through your permeable skin.

The even bigger issue is that your body begins to ask for more steroids more frequently and/or in stronger potencies. What happens when you’ve reached the strongest ointment? You go to pills until you’ve adapted to that dosage. The next step is injections. What about after injections?

Steroid dependency or addiction is marked by this need to increase the dosage. Often, we will continue to increase because our bodies have not yet recovered from this addiction.  Without knowledge of Steroid Addiction, many people continue their prescribed course of steroids as their body/skin is in an “excited state” of abnormal vasodilation, releasing high accumulated amounts of nitric oxide and is unable to withstand allergens without synthetic or natural steroids. It takes months to years for the adrenals to function normally again.

2. Steroids do not heal your dermatitis, but conceal a larger issue.

Steroid creams treat the inflammation of dermatitis on a superficial level. Applying steroids on the skin (or worse, ingesting it via injections and pills) is covering a messier issue with a bandaid. Unfortunately, this “See no evil, be no evil” approach that most modern professionals use on a daily basis is the core issue in the most commonly used treatment of dermatitis. Making the symptoms go away momentarily and continuously will satisfy some, but do not give you a chance to figure out what could be influencing your symptoms. Treating the symptoms and not the core issue is shortsighted and vain at best.

Atopic skin types are sensitive and need to learn about their triggers. There are common triggers like rough fabrics (i.e., wool) and allergens (dust mites, pollen, dander, etc.). Some of you may have food allergies or are sensitive to foods with higher amounts of histamine (we take anti-histamines to calm allergic reactions). Your health deserves a chance and learning more about what your body reacts is going to save your body and sanity.

On Feeling Disfigured

For the last few months, I’ve felt alienated and disfigured within my own body. At a quick glance, I look like someone who doesn’t take care of herself. But the truth is that I’m a mess. My body has been doing things I didn’t know it could do. I wonder if I will have scars after this, and this frightens me.

Spending my days on my bed, in my comfy PJs, on the laptop since last July when I started experiencing TSW symptoms (but didn’t know it) has grown stale. As comforting as the ITSAN forums are, I am alone in my room-cave waiting this out, giving me more time in the world than I need to torment myself over how gnarly my neck/face is. Before TSW, I was an exceptionally vain person. Always concerned with my hair, makeup… my overall appearance. It dictated how I felt about my day, whether I would accomplish what needed to be done, whether I lived life just a little bit more. Compliments from others cycled my fixation on my outward appearance.

TSW has taken that and flipped it on its tender, frail stomach.

Today, I finally had my first real cry in the bathtub. I’ve cried many times before, but those don’t count. They were obligatory cries, ones that I conjured up because my quiet anger had no other egress. Today’s cry was different. My mother, who is can be excruciatingly preachy, came to my tubside and talked to me about a character from the Bible named Leviticus. He was brought back to life from death by God, although L pleaded to be healed from his illness before his death.

Instead of the usual eye rolling spasms that ensue after this kind of biblical preachiness, I decided to just listen to what she had to say. I guess the moral of the story is that God can preform miracles at any time… Then she talked about how the moment we say “Thank you” for an undesired challenge is also the moment when we get answers. This clicked with me somehow and got me thinking. Though I’m not ready to thank anyone for this, except the irresponsible medical professionals for enabling Steroid Addiction, I wondered about what lesson I could possibly learn from all this, if there’s a lesson to be learned, if there’s a divine reason for everything.

Then I found this video in my suggestions box on YouTube, called “On Being Ugly.” A very young woman posted her thoughts on how personal outward beauty and the lack of it should not rule how we live. Some things she said were on the radical side, which I’m always a sucker for, but ultimately disagree with. Most of what she says is profound and beautiful.

I remember being like her when I was around her age (as if I’m that much older!). My philosophy on life was driven mostly by the lyrics of Jewel’s poetical ideals of beauty and my inherent hippie-like enthusiasm for  all life. That has been tainted by various events since then, but renewed by this one video and my half-assed willingness to say “Thank you” for this crappiness we call Topical Steroid Withdrawal.

After today’s reflecting, I don’t think I will spend another healthy, healed day wasted on the pursuit of happiness via appearance. This doesn’t mean that I’ve come to terms with me and TSW. It just means that I’ve realized how the feeling of being robbed of my youth by this TSW crap isn’t actually robbing me more than the wasted time of my pre-TSW vanity.

Month 3 of Withdrawal from Corticosteroids

Hi Everyone,

Sorry my posts have been so far and few. I’ve been having a hard time coming up with positive posts as my withdrawal from steroids has been a very dark and lonely road. I read others’ posts and feel like I should be jumping for joy in comparison. I admire those who can take the positive from this experience and use it as fuel to go on. I’ve never been a true optimist, maybe fleetingly, so trying to deal with the daily grief of the deep down itch, uncomfortable, ripped up skin and anxiety that comes with it has been difficult. I am into my 4th month of withdrawal now and have started seeing major improvements.

I still wake up itching in the middle of the night and throughout the day, but not nearly as often as before. Every living moment was itchiness up until a couple weeks ago. I’m getting breaks. Some days I itch maybe only 30-40% of the day and with less intensity versus a full on 95% with intensity. I noticed improvements when I started using the Epsom salts again. I stopped salts for a few weeks thinking that it might be drying me out. I became dry during this time I was off the salts but thought it was maybe just a part of the natural progression of TSW. I gave salts another chance since I figured I had nothing to lose. Has made a world of a difference.

My skin is retaining moisture finally and for longer. I still weep when I scratch too hard, but overall I see that I’m a few steps closer to healing. Today I noticed that my nose felt greasy from its own oils (I haven’t moisturized since last night). If I told my 17 year old self that I’d be excited about an oily nose, I’d roll my eyes and say “whatever” – I was an oily, pepperoni face at that time.

I haven’t been working for the last 2 months now. There are many TSW friends who continue to work full-time hours and applaud them for braving it. I’m not sure when I’ll feel ready to work again. I’ve always had somewhat low self-esteem and am trying to gauge when I can start getting out again. Going to the mall or somewhere to do errands on my own just terrifies me; I’ve become utterly anti-social. I do mean anti-social… as in as little people contact as possible. At 26? Yeah I know, but hell – I’m allowing myself excuses for now. When I’m much closer to healing, I can go back to my normal contentedly quiet, shy self amidst the social butterflies of the outside world. For now, Dexter (my Beagle) and Charlie keep me company when I’m home alone. More frequent updates to come!

Dexter, the Beagle keeps me company

A Little Rant and Literature

I think that it’s important that anyone using corticosteroids know about the possibility of addiction, especially since it’s likely that their doctors know about the influence on the HPA axis (Hypothalamic–Pituitary–Adrenal axis — pretty much your adrenal glands which produce your body’s natural corticosteroids), though not its extent of influence.

But first – a rant. From the stories I’ve read from ITSAN members, it’s unfortunate how complacent so many derms and MDs are with the the medical knowledge they attained in school insofar that they’re willing to turn down medical literature written by other doctors offered by patients in their practises. This is where I get aggravated…

The fact is that doctors are people too, so I can understand why someone would be hesitant to read medical literature that has not yet been widely accepted. The ironic thing is that it takes individual doctors to create awareness, so who’s waiting for who? There’s also the issue of pharmaceutical sway on doctors.

There’s enough people who say that it’s illegal for doctors to accept payment from drug companies for prescribing their product, but where there’s loopholes, there’s advantages. Dr. Irene Abramovich in West Hartford, CT was paid large amounts of money by Janssen Pharmaceuticals to speak on their behalf. $47,000 in 2010 for “speaking and travel.” Abramovich was also the state’s top prescriber of Invega in 2010 and 2011, and in the top five for Zyprexa in 2008 and 2009. See: http://www.articles.courant.com/2012-07-30/health/hc-doctor-prescribers-20120730_1_second-highest-prescriber-top-medicaid-prescribers-pharmaceutical-companies

Oh, but she’s a psychiatrist right? What else is she going to do? She’s just doing her job, you say? Get out of here and don’t talk to me… Here’s some lit I found on steroid addiction. Read and evaluate for yourself.

Adrenal Suppression From Topical Corticosteroids Surprisingly High

By By Alicia Ault. Reviewed by Zalman S. Agus, MD. I think what’s most interesting about this article is that the panelists of this meeting looked at honest, raw data of side effects from studies done and made judgements based on that information, rather than generalizations of its benefits.

Topical corticosteroid addiction may be to blame when ‘rash’ defies treatment

By Paula Moyers. This article is interesting as it describes how my eczema has progressed to a tee with the use of steroids. I was on a mild steroid since age 6 (26 now) and started more serious dosages about 7 years ago. The most dramatic change happened 3 years ago when I was using it to control allergic skin reactions to cat dander.

Eyelid Dermatitis to Red Face Syndrome to Cure – Clinical experiences in 100 cases

By Dr. Marvin Rapaport. Luckily I still have access to Western University’s journal database, so I was able to get a hold of Dr. Rapaport’s article on the relationship between perioral and facial eczema and steroid use. Hopefully, I don’t get slaughtered for sharing Rapaport’s academic work freely. Dr. Rapaport is not the greedy type who writes scripts of an extra buck anyway (I wouldn’t be here if he was!).

Rebound Vasodilation From Long-Term Corticosteroid Use

By Dr. Marvin Rapaport. This is a short one going over how steroids affect the nerve endings, thus how and why we itch so badly after coming off steroids. This “rebound” is a symptom of withdrawal from steroids.

Corticosteroid Addiction and Withdrawal in the Atopic

By Dr. Marvin Rapaport. This goes over how steroid addiction and withdrawal progresses over time. The great news here is that we may be able to have near-normal skin (and life!) once our bodies have expelled the steroids completely out of our system. Before I started Clobestol, my skin was 95% normal, barely flaring or itching.

Serum Nitric Oxide Levels in Red Patients

Another one by Dr. Marvin Rapaport. He distinguishes between true eczema patients and steroid-induced eczema patients by looking at nitric oxide levels in individuals. Very interesting as he’s able to quantify what true eczema looks like.