Tag Archives: Red Skin Syndrome

1 Year Update

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Wowowowowow! Can’t believe it’s been a year! I was wondering if this milestone would ever come around, but here I am – healthy and well. My progress has amazed me and I’m grateful. Though there is some more healing to be had, the worst is behind me and I can get back to the other shenanigans in my life. Christmas and New Years Eve were a delight. I spent it with family and my wonderful boyfriend.

The last little bout of progress has been positive overall. The good news is that the second flare I had back in November died down fairly quickly. I was itch-less for the bulk of December. Some of it has returned though not nearly as intense as the beginning of withdrawal. If I scratch, I get strange burny-tingly sensations all over that’s pretty dang satisfying and makes the itching go away for a good long while. Ahh!

Despite this minor flare that I’m experiencing, I’ve learned that healing isn’t perfect. It doesn’t mean that you won’t have any symptoms later on, but that they progressively dissipate and you begin feeling them less and start to forget about it – slowly but surely. I might say that I’m 90% healed and at the end-tail of this!

Here are a few pictures I took today. Just wanted to show you what healing at 1 year looks like for Leizel and give others reference to others with similar usage history as me (Clobestasol Propionate very lightly and diluted with petroleum jelly over last 3 years of use (Jan 2010-Dec 2012); 1 week course every 3-4 months. Since age 6, mild topicals (class 4 & 5) very infrequently to Dec 2012).

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My right wrist got a little more scratching action these last few weeks

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Left wrist

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Perioral dermatitis much improved. Dark pigmentation is fading. This was the worst area for me as it was difficult to eat, smile, and other mouth-oriented activities. See previous posts for comparison.
It’s worth mentioning that my perioral skin is improved when I use EczeHerbal ointment and calendula cream consistently. I stopped using it out of laziness for a couple weeks and went back to itchy, ozziness.Image

So yooou seeeee, things are feeling/looking better! If you’re reading this and are close to the 1 year mark and are feeling uncertain about your progress, please know that my usage/dosage was fairly modest and was withdrawing off and on for 3 years before I stopped topical steroids (TS) completely last year when I realized that my worsening “Eczema” was actually no longer Eczema but something entirely different. I didn’t think I’d be as healed as I am now. Your body is working at its pace to heal itself. Don’t underestimate your body’s healing powers. Take care of it and it will take care of you. May this New Year be a year of healing and growth.

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Happy New Year from K and me!

Month 3 of Withdrawal from Corticosteroids

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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!

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Dexter, the Beagle keeps me company

A Little Rant and Literature

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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.

Pre-TSW + Month 2 Symptoms

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 maple-sap

Oozing – Many TSW patients have areas around their body that ooze fluids, often appearing yellow and hardening to a yellow crust. Dr. Rapaport describes this as the excess plasma expelling from the body, formed during the accumulation of steroid build-up and is a part of detoxifying process from steroids. I have oozing above and below my mouth area, around my ears, in my ears and parts of my neck. Oozing occurs where my skin is raw and thickened. The area around my mouth where the oozing occurs was diagnosed with a non-resistant staph aureus infection and was prescribed numerous antibiotics over 8 months, including Bactroban which is a very potent antibiotic. This lack of success with antibiotics for a non-resistant staph tells me that what I’m dealing with is not staph. I treat this by using my home-made astringent made of witch hazel, apple cider vinegar and tea tree oil – 7 parts witch hazel, 2.9 parts ACV, 0.1 parts tea tree oil. If I don’t use the astringent regularly, the ooze returns.

I’ve come to the conclusion that the oozing is plasma rather than staph for a few reasons:

1 – The oozing is very localized and has not infected other parts of my face when I accidentally touched the ooze and other parts of my open-sore body consequently without sanitizing my hands in between.

2 -I saw no sustained improvement with the use of antibiotics meant to eradicate staph infection. If there’s one thing I learned from House, the health issue can be determined with the correct or incorrect medication.

3 – Dr. Rapaport’s professional opinion that plasma will appear and be diagnosed as staph by a doctor as the diagnostic method cannot distinguish between plasma and staph. This is probably because staph is a naturally occurring bacteria that lives on the skin.

4 – I don’t experience itching from the ooze, which is common with a staph infection.

Although I officially begun TSW this January 2013, I’ve been oozing off and on for the last year. I believe that this is the case because I’ve been intermittently withdrawing during my non-use of steroids. It always got a bit better during use, but went downhill soon after.

I experience oozing very mildly relative to other TSW’ers. Some have to wrap a cloth around their neck overnight to soak up the ooze. I’ve read that some ooze so uncontrollably that you can smell it and must keep towels/cloths around them at all times to keep clean. This is the case for very long-term TS users.

Hot and Cold

Irregular Body Temperature – I experience this sometimes. It’s difficult to predict when it will happen. If it’s on the warm side, I will heat up very rapidly. The reverse is true aswell; if it’s a touch too cool, I feel too cold. I’ve read about more extreme experiences from others, like they get so cold that they have to layer multiple blankets to warm up. Irregular body temperature is most noticeable at bedtime. A blanket warms me up too much and makes me sweat; no blanket leaves me uncomfortably chilly. This can keep me up all night.

Many TSW sufferers experience phases of coldness and sweating. This has to do with the adrenal glands recalibrating itself, or re-learning how to produce cortisol. Remember that applying topical steroids leads to a dependency of the high levels of cortisol seeping into your bloodstream. Because the body is receiving cortisol without the effort of its own self-sufficient production, it becomes lazy and forgets how to produce its own cortisol. Kind of like when you mom do the laundry for you; you don’t bother checking if there’s any dirty laundry or not because you assume she’ll do it for you. When you’ve withdrawn from topical steroids, your adrenals go into shock because it has forgotten how to produce its own cortisol. Because the adrenals are so closely linked to body temperature, our bodies are also re-learning how to regulate body temperature.

snow flakes

Flaking – I experience flaking all over my body – face, arms, back, scalp… It occurs when I’ve scratched, except on my scalp where it flakes on its own. I need to exfoliate these flakes in the bath/shower regularly. Otherwise I get itchy as it feels like my skin can’t breathe well. Many complain about flakes “flying around” them on a regular basis, which isn’t the case for me. The flakes come off either in the bath with a terry cloth or when I’m scratching. They’re not flat but more round and gritty. Seeing and feeling these buggers on the bed or elsewhere is distressing and makes me feel icky about my skin.

After exfoliating, the skin underneath is pretty soft and ready to absorb moisturizer. My issue is that moisturizer takes FOREVER to sink into my skin. I stand around in front of a fan for as long as it takes (30-40 min) to soothe my skin after moisturizing and assist the skin in absorbing, while messaging it all in. Flaking is a result of the extreme dryness that we TSW’ers experience. I like to think of it as a facial peel. Every time we peel, there’s new skin awaiting underneath. See “Dryness” below.

swollen

Swelling – Current swelling is minimal, mostly in and around knees. My face (i.e. cheeks) were swelled up the latter part of 2012 and long before. One side of my face was more swollen than the other, which has swelled down since then. Remember I’ve been using potent TS for the last few years intermittently, which means I would’ve undergone withdrawal symptoms during times of non-use. I think that this is the most interesting point about steroid-induced eczema: we are constantly but intermittently going through withdrawal in between the times we were/are using steroids. Just because we didn’t have a clue or aren’t in a total conscientious withdrawal, doesn’t mean we don’t withdraw during these short periods of time. I perceived these times as just plain ol’ eczema. There’s no reason that we wouldn’t be withdrawing during these times. If we’re following the prescribed 1-2 weeks of steroids per month, then we’re most definitely withdrawing the other 3-4 weeks we’re not using it. The swelling is from the inflammation, as well as the build up of plasma.

itchy dog

Intense Itching – Month 1 of withdrawal, I experienced to-the-bone itching. I couldn’t help myself but scratch to the point of bruising my body and seeing blood.  I’m nearing the end of month 2 and the itching has since improved. It’s more superficial, on the surface and happens at any time. It’s itchy when I’m moisturized, when I’m in the bath, when I’m drier. I experience what TSW’ers call “Pins ‘n Needles” itching where the itches are a sharp and short sensation. I sometimes jump when these shocking sensations happen. The itching is said to be the blood vessels healing and expelling the TS. This is my worst symptom because itching drives me absolutely bonkers. I easily lose focus and frankly I itch almost all the time, so you can imagine having a conversation with someone who’s only half listening… or a quarter listening.

thicken

Linchification – Meaning “thickening of the skin.” This seems to occur where the skin has experienced the most rubbing and scratching. For me, I have it on several areas. I have it on my abdomen right above my groin where my jeans rub against the skin. I also have it on my inner biceps right by my armpits; on my jawline; and on my wrists. The thickened skin on my jawline also oozes. Last month, all these areas had a hard, shiny and smooth appearance, like plastic. Pretty off-putting but hey. Linchification also means deep fissures in the skin, which looks like deep valleys in the natural landscape of the skin. The fissures occur where there the skin naturally folds, such as behind the elbows or folds where you have rolls on the stomach – sexy! I also get them in places where there aren’t any natural folds, like above the groin and below the abs.

sleepless

Even counting sheep got tiring for the sheep, lol

Difficulty Sleeping – See all other symptoms. They will keep you up! My sleeping patterns are all over the place. Sometimes I’m able to sleep throughout the night, although most nights I have a hard time trying to get comfortable. I’m either too warm or too cold. My skin is too wet from moisturizing or too dry from not moisturizing enough. I’m too itchy, too fidgety. Too on the edge. As a result, my sleep is very broken, waking up every couple hours. Taking antihistamines seems to be a necessity despite my efforts to avoid them. I seem to sleep better at my boyfriend’s and I think this has to do with my psychological state at home in my own bed where my thoughts are darkest. My room is very cluttered, messy and disorganized. Somehow improving your room with lighting or colour or de-cluttering might help you calm down.

desert

Dry as a desert

Dryness – This might be an obvious one, but it has to be said because it is a huge part of TSW. My skin is extremely dry. It hurts often, especially when turning or moving around. I can really feel the skin struggling to stretch when I move about. It’s a very strange feeling and probably makes me feel the most out-of-touch with my skin because the dryness makes it feel like non-skin, and more like there’s something just sitting on top of my body to protect it. Ew. The worst part is my neck because it feels uncomfortable whenever I turn my head.

According to Dr. Rapaport, the dryness is caused by the dysfunction of the adrenal glands. Apparently, the adrenals are responsible for a whole lot of things! Again, the hypo-cortisol state is responsible for the dysfunction of basic things in our bodies. The adrenals are responsible for manufacturing oil through our sebaceous glands in our pores. Hey Adrenals, get moving already!

hair loss

Jesse from Full House

Hair Loss – This seems to be a common symptom of TSW. Like some of my other symptoms, I’ve been experiencing this one over the course of  my intensive steroid use these last 3 years. (I have been using Clobestol the last 6, but have been using it heavily only the last 3 years). It has been especially noticeable Summer 2010-Spring 2011 and again all of 2012-2013. I’ve lost a 1/3 of my hair on my head to date, and 2/3 of my hair… ahem well, down there. I’ve had blood tests checking for possible reason for this hair loss without any indicators. My hairline has receded quite a bit, although I see baby hairs growing back already! Dr. Rapaport assures us that the hair will re-grow as we outgrow TSW.  Horrah!

I haven’t read anything specifically on how the adrenals or TSW affect hair, but my best educated guess is that hair needs healthy skin for growth support. And well, us Red-Skinners just don’t have that…  yet!

Edit (April 27): Was looking at photos of myself from a few years back and realized that I’ve lost much more than 1/3 of my hair. I really had a full head of hair! I believe that it’s probably closer to 40-50% of hair that I’ve lost, rather than 30%. Will be taking photos of my hair progress as well now! See this more recent blog post to see how steroid addiction does affect hair growth negatively. Amazing difference.

Thoughts. My symptoms have been relatively mild this month, though it has kept me at home for the most part. I’ve turned even more into a hermit as I’ve been uncomfortable literally in my own skin. Some of these symptoms were present prior to complete withdrawal and I am not under any delusions my skin will be perfectly functional after TSW. The reality is that I will know what the true nature of my eczema is only after TSW. It seems as though withdrawal takes a very long time so it will be awhile until I will see dramatic improvement.

Some people who are TSW doubt that they have/had STA (topical steroid addiction) because their symptoms are so mild. I feel confident that I am experiencing withdrawal, even in a mild form. TSA/TSW explains the symptoms I’ve been having, which is unique from the “eczema” I was experiencing last year when I still intermittently on TS.

Although the #1 rule is to avoid giving yourself a time frame, I’m giving myself 1.5 year which is generous. Two years until I can be sure.  Many people see sustained improvement for a few months and then go through a flare, which is thought to be one last push by the body to detox. Although my symptoms are currently mild, I am preparing myself for the possibility of a bumpy ride down the road. Which reminds me of this song I was obsessed with in grade school… Bumpy Ride – by Robyn (1996)

History + First Month of TSW

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I am so tired today and not sure why ’cause I slept a good 9 hours. I wonder if it’s the stress. I’ve had days where I feel optimistic, then I’ll take a bath and I go scratch-crazy and feel like my world is upside down. My brain feels foggy and I’ve been wanting to write a solid blog post, but I feel like I could fall asleep right this very second if my head just rested more horizontally on this pillow…

So I’ll give you a bit of history of my eczema slash steroid past, in an effort to keep myself awake and do what I made myself to do today. I’ve had eczema for quite some time now – since I age 6. Nothing serious by any means. My mom kept a small tube of hydrocortisone in the cupboard that she’d take out every once in a while. I had and still have environmental allergies at the time (cats, dust, pollen) but was too young to remember if my flareups were connected to those allergens. Either way, my skin really didn’t bother me at all when I was very young. As a teenager, my legs and arms suffered from intense scratching during the humid summers.. My eyelids we red and itchy and used mild TS (topical steroid), but it never really made it better.

By age 17, I was introduced to Clobestol, the most potent TS, by a random Vietnamese lady who ran a salon in her basement when she noticed some rashes on my arm while she was doing a facial on me. She showed it to me like it was the answer to all my itching, rashy issues, and told me that doctors are very hesitant to give it to patients because it is very strong, but it has made her friend’s daughter’s someone’s eczema disappear “forever.” It seemed simple and I took it. No questions asked.

I used the Clobestol sparingly off and on. I used it on my neck, eyelids, arms for weeks at a time. It made it go away, but only temporarily and it would always recur soon again. I figured that this was just the nature of eczema and there was nothing I could do about it.

Fast forward to 3 years ago (age 23) when I started sleeping over my boyfriend’s house where the combination of carpet and 2 cats awaited me. I didn’t clue in at first that I was actually reacting to my new environment when my body was itchy and my face was covered in these strange blistery things. I soon realized that the only thing that had changed was sleeping over his place. My diet was still the same. Stress was non-existant.

So I started using steroids and Protopic on my face to make the yucky rashes disappear. By the summer, the itching was uncontrollable and my body was covered in rashes and bruising. Since then, I’ve been using Clobestol off and on over the last 3 years. I noticed my skin going from very oily to very dry. I hated it at the time, but I truly miss my oily days. It’s comforting to think that I could even produce enough oil that blotting was an absolute necessity every half hour. I was so oily, your mom could fry your breakfast on my face.

Nevermind the zits the would ensue. I would take oily skin over dry any day. By last winter – 2 years into Clobestol use — I had been the driest yet and extremely sensitive, especially on my face and above my lip.

My decision to undergo steroid withdrawal is based on the lack of success with steroids. November 2012 – I YouTube’d “Face Eczema” and watched this video: http://www.youtube.com/watch?v=dfIz8ZBqg5o. I was going through what she was going through. Like her, going to my minimum wage retail job was difficult with an oozing, red face. I read comments about Red Skin Syndrome, although I didn’t take it seriously. I went on another round of Clobestol for 2.5 weeks before rethinking steroids. My skin cleared but was still extremely itchy, so as soon as I got off it, it was worse then ever. It was everywhere, everywhere and spread to new places.

I remembered what I read about Red Skin Syndrome and researched more about it. Everything started making sense to me – what I’ve been going through. The photos of withdrawal from steroid addiction sent tears down my eyes. The more and more I read, I realized that I’ve been going through withdrawal off and on for the last 3 years. The symptoms of withdrawal were very familiar – dry, flakey, deeply itching skin, hair loss, oozing.

My first month (January 2013) of complete withdrawal was hell. The itch in my body was insatiable. I scratched until I bled and it didn’t matter. Going to work was extremely difficult. My neck and face was oozing (and still is) so I kept my distance from co-workers. I could feel my body shivering ever so slightly and was always cold. I made sure I had clean turtlenecks to wear everyday. I used my mini breaks to moisturize my face although I knew my face would shrivel up an hour after. My skin was brittle. Soaking in water was painful. Moving was painful. I saw hair tangled around my fingers every time I’d wash. I wanted to lay in bed under a cover. Every moment hurt and thoughts of suicide were insistent.

Looking back, my skin was in a half decent before my first allergy flare at my boyfriend’s house 3 years ago. In fact, just before I met him, my eczema was a faded memory. No doubt I have skin allergies, but the true nature of my eczema can no longer be accurately measured since the side effects of steroids has tainted its original state. Plus, if this medication is meant to help me, then why have things only gone downhill since I started using it? Over the last year, I’ve tried to stop using TS but I always went back to it because things got worse after getting off it. Sometimes they say, “Things will get worse before they get better.” With steroids, it’s been more like, “Things get better-ish, then get worse.”