Tag Archives: eczema

Update: Month 8

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Hi Boys and Girls!

Another month down. Just to clarify, I am done with month 8 and into my ninth month of withdrawal. I went off Clobestol Propionate completely sometime mid-December 2012… not sure what day exactly. So I’ve said January 1st to simplify things. Technically I could be at 9.5 months!

August has been an interesting month. There has been major markers of improvement and feel lucky to have gone through only moderate withdrawal symptoms. I continue to visit the sunbed every 2-10 days for 2 minutes at a time. Yes, I’ve been inconsistent and have seen a positive relationship between improved skin condition and sun therapy. The 10 days I went without it, my perioral area worsened — more sensitivity to allergens, sweat, kisses, etc. Every 5 days seemed to be a happy compromise between my self that wants to avoid tanning at all costs, and my other self that wants to keep my mouth area looking normal.  Otherwise, if things were rashy, I would go more often though for a shorter time.

Anyway, I’ll start with the cons…

Downs:

The biggest downer was my perioral area regressed in the last couple of days of August. It acted up after giving Dexter (my Beagle) a bath. Raised bumpy red rashes and little oozing and crusting. Taking salty baths and getting “sun” has helped only some, though I’m thinking that it will be better in a 1-2 months time.

Scratching. Healing is progressing slowly, but surely. Not many open wounds this last month. I’ve avoided using my hands to scratch, which seems to be less damaging. Instead I use flat surface objects which seems to be moderately better because using my nails seems to break skin open quickly. This advice may seem… irresponsible. I should be telling you to not scratch at all throughout withdrawal, but I have accepted that scratching is inevitable. It gets me through the morning, afternoon, night.

The deep wrinkles and linchification from scratching in the early stages of topical steroid withdrawal are still very visible. And upset me time to time, but it is was it is.  Itching has evolved into a burning and shock-y sensation. Fellow TSW-ers have talked about a burning sensation that was alien to me until now. The only way I can describe it is… it feels like a large area of nerves are excited and feels like a fiery sensation. It hasn’t been very intense at all, but worries me because I’m only experiencing it later into my withdrawal (while others have it much earlier on). It makes me think that the infamous 2nd flare is around the corner.

Hair loss isn’t as bad anymore. I lose hair at a normal rate and my bald spots continue to fill in and grow with baby hairs. It’s crazy to think back to 3 years ago when I was losing hair in bunches when I was unknowingly going through withdrawal (and consequently, going back to steroids).

Ups:

No more antihistamines! Though I continue to struggle with scratching, the itching has decreased by a significant factor. On a scale from 1-10, itching was about 6/10 in August. (Month 2 and 3 was at 10/10 intensity, Month 4 – 8/10, Month 6 – 7/10) I was able to taper off antihistamines until stopping them completely. So I am no longer dependent on Benedryl to fall asleep at night. That’s right!!!! This is the biggest feat this month – hands down.

Taking antihistamines every night was troubling me as I read an article about antihistamines (and similar other drugs) having a negative affect on cognitive functioning over long periods of use.  I was using up to 3 Benedryls and reduced to down to 2.5, then 2.0, then 1.5, then 0.5 from the beginning of my withdrawal. Though in Feb and March, no number of Benedryls helped me fall asleep or lessened the intensity of itching, so I wasn’t bothering with Benedryl back then. I continue to take Licorice Root pills to alleviate the itching at night, which generally reduces my itching noticeably.

Healing on the outside. Despite the sluggish pace of progress that is accompanied by topical steroid withdrawal, I have noticed improvement in my worst problem areas (eg. neck, wrists, stomach, arms). Things are smoothing out some and are looking better than a couple months ago. Comparing my skin to how it was 2-3 months ago makes my outlook on withdrawal seem hopeful.

I avoid potentially unsafe situations like laying on the sand or swimming at the beach where my broken skin would parent an unwanted skin infection. Also, I only use stand-up sunbeds since there is no direct skin contact with the bed. This may seem overly vigilant for a heedless spirit, but it’s not worth the risk. A friend of mine – happy & healthy, no steroid addiction – contracted a skin infection whilst in a horizontal, laydown sunbed. Being more vulnerable to infection, I don’t get into trouble.

As an aside, scratching has become a guilty pleasure. I physically feel better after a good scratch. Somehow more relaxed. Speaking of which… For the last month now, I’ve been able to to have a glass of wine without going into a flare-up. I last tested this in May with no success. I poured a glass — perhaps with foolish bravado — and regretted it deeply. But August has been good to me, so I’ve been enjoying a little bit of wine throughout the month.

Overall:

Slight regression in perioral area after handling Dexter in the bathtub. Itching  is reducing, though experiencing increasing burning and shock-y itch sensations. No longer using antihistamines is a wicked milestone to reach. I was thinking about it for a long time and finally felt ready to do it despite the incessant nightly itching. This new level of healing really tells me that my body is moving forward and repairing itself. I definitely still have many months of healing ahead of me, but hopefully have already seen the worst of it behind me. I’m not sure if I’m prepared to deal with the infamous 2nd flare if it is to happen. But if it would follow a lifetime of health, I’m ok with that.

Month 7.5

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7.5 months down. It’s amazing how time can heal the body. The last pair of photos of my face/neck (below) are the most drastic change I’ve seen. My neck and face were incredibly raw. I had to keep it covered in various ways to avoid infection and allergens. Those red areas in the Before picture were oozy, open, linchified wounds now coming down and healing up. I was barely leaving the house back then – I was too itchy and raw. I try to use a light scarf around my neck to conceal my neck, which is my worst problem area. Something with a loose weave that’s breathable and non-abrasive. Kinda like this…

Loosely woven, soft scarves are nice for summer

HOT WEATHER. The weather lately has been so ridiculously hot (45C /112F) that I haven’t really bothered with a scarf in this heat, but I was sporting a scarf in late June when it was in the high 20’s (Celsius, or high 70’s/low 80’s F).  I was anxious about the outdoor concert (Tegan & Sara) I went to a couple weeks ago, but managed fine. I took off my very light long sleeve and wore a sleeveless tank. It felt a little weird at first but got over it quickly. Regarding body temperature regulation, I’m tolerating the warm weather more normally. In late May, I was heating up too quickly in 21C degree weather (69F) and flared. Though no human would tolerate 45C well, I was handling 27C (80F) fine. So no irregular body temperature issues. That seemed to be a thing of the early stages of TSW and addiction.

Remember: I used to use steroids only once (1 week course) every 3-4 months, so I was probably withdrawing as I was using it. I would overheat in 19C (66F) very easily and needed a fan on me whenever possible. I believe that the lack of body temperature regulation in the past is closely linked to steroid use and addiction, as I have seen a dramatic difference in how my body tolerates warm temperatures, and will be studied in the future when the bulk of the medical community recognizes (and acts upon) steroid addiction.

SUN BEDS. My face doesn’t seem to show obvious signs of TSW. Though I there was some minor ooze above my upper lip over the last couple weeks, as I stopped sun exposure for a month. I went into the sun bed for 5 mins and the wounds are closing up. Before you say anything, I am NOT recommending sun bed or tanning salons. I am using it to my own discretion. I’ve never used sun beds regularly and am generally anti-tanning. But given the medical situation I’m in, I am using sun beds minimally and cautiously. I was going 5 mins every 2 days, but this ended up being too much. I was becoming dark quickly after 2 weeks of that.

So I will be doing 2 mins twice a week for the next little while to see how that goes. Sun beds work for me because going out in this incredible heat for too long is just crazy, and I want to keep my perioral area in check as it has helped to close those open wounds and stop the oozing. I was going for UVB treatments at a dermatology office, though it was becoming inconvenient (a 2-hour bus ride roundtrip, every other day).

Dr. Rapaport recommends light sun exposure in the later stages of withdrawal. Listen to the ITSAN teleconferences or read the transcripts to learn about Dr. Rapaport’s view on sun exposure. I started getting some sun around month 4-5. At first, I experienced resultant itching afterwards though that is no longer the case – though it is difficult to pinpoint what causes some itching. I did not use sun exposure when I was raw and red, but when the redness was down.

SLEEPING. I’ve been sleeping regularly… as in my 36-hour long days are over. Yes, I was staying up for 36 hours at a time because the itching was so intense; I simply could not rest even after taking antihistamines. Benedryl seems to be my drug of choice. I was prescribed Atarax (a recommendation by my doctor and Dr. Rapaport), but didn’t fill the prescription for reasons unknown. Sleep has never seemed so precious after experiencing itch-induced insomnia. Existence was miserable. Now, if I sleep a regular 8 hours, I usually feel tired by early afternoon. Lately, I’ve been sleeping heavily and for longer hours (10-11) now that I can rest calmly. There seems to be a consensus amongst TSW-ers that they become fatigued easily and need rest more than healthy folk.

MOOD. I seem to be moving back into my same ol’ self. I’m starting to think about my academic future again and have been debating when that should resume. The infamous “Second Flare” that all my fellow red-skinners (others who are also experiencing Topical Steroid Withdrawal) experience seems to happen around the 8-10th month mark, so I am feeling apprehensive about going back too soon… My self-esteem is bouncing back from zero to some. I have a feeling it has to do with getting out more, seeing friends/family and frankly… being able to wear makeup again. It can camouflage my skin/face fairly well.

See!

My summer has been good so far. I’went to the local Sun Fest, which is a summer festival celebrating ethnic food and music. I saw Tegan & Sara in Toronto (though I would not recommend the VIP tickets for Downsview Park!) and had some good fun. I’ve been hanging out with friends and spending hot days indoors. 7.5 months feels like a comfortable spot. My need for baths are lessening – once a day for an hour, though that sometimes ends up being more like 1 bath every other day. I should be better about it, but the bathtub gives me the creepy crawlies.

Now for the update pictures. Some of these are pretty graphic, so Viewer beware if you haven’t seen what TSW looks like.

Read the rest of this entry

Kisses Again

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It’s 2:30am, awake with the itchies… Thought I’d be able to pull another night off without taking antihistamines. The last two nights I did without. I was just too tired that I didn’t bother. I did have to get up a couple times because the itch was bugging me, but went to sleep soon enough albeit with less ease and more emotional distress. 

The bulk of June has been pretty good. I started getting a lot of sun, which seems to really have helped open wounds close up. The perioral area has improved vastly as a result. Compared to last few months of oozing, redness and hyper-sensitivity, the area above my upper lip has been the best it’s been for a very long time. The way I evaluate this ultimately is the Kiss Test.

I haven’t been able to really kiss Kris for the last 1.5-2 years  of our relationship because of the amount of sensitivity I’ve had. After even a touch of kisses, the skin will break with soreness and oozing, and will need at least 1-2 weeks to bounce back. Despite Kris’ efforts to keep his facial hair to a minimum, even the most minute scrape or touch against my skin would immediate tear my skin.

I’m happy to it’s changed and can kiss like a normal person in a relationship. Yay! I might experience some sensitivity like probably most people but NOTHING like how it was before. This is a new era of healing!

I remember last October 2012 was the worst point. I had rubbed that area and soooo much ooze resulted. I had a thickass crust of dried yellow plastic over my upper lip. It was distressing and terrible to look at. I almost wish I had taken photos of it just to show you have bad it was. I was crying, wondering if my existence would always revolve around my dysfunctional skin. I wondered if I’d ever experience a kiss again. I felt and looked disgusting. And am forever thankful that I found Dr. Rapaport’s medical literature on eczema.

It’s been nothing short of life-changing. 

I went away with my boyfriend for a day trip to Niagara Falls. We wanted to get away after his stressful week of work. So off we went to our favourite close-by destination. I survived the heat at 30-ish degrees Celsius. Luckily we were in and out of a/c’ed buildings but still am pleased that my body didn’t over react as soon as I stepped out in the heat and humidity. I was pretty warmed up but within my comfort zone. I wasn’t sweating either. Still  waiting for the sweating stage of healing to kick in and actually looking forward to it even. Here I come, sweet, sweet sweat.

Month 5 + Juliana’s Healed Story

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I’ve pat down another month of healing. It’s gone by fairly quickly – more quickly than previous months! I remember in Feb and March feeling like a single week felt like an entire month. It was very slow going and wasn’t sure how I’d make it through, but my time perception has changed greatly and feel like I’m just trucking along until I can finally feel close to 100% again. May has been a month of improvements, as well as back-tracking. I’ll give you the bad first…

The Bad:

Had a pretty big flare after drinking a glass of wine. Not quite there yet! Perioral area has worsened (mainly the region around my mouth) has been raw, sensitive, red and flakey. Nightly itching is a regular occurance. Still taking antihistamines to put me to sleep. Otherwise, I’m awake half the night. Skin still looks pretty gnarly – deep fissures and wrinkling, especially on my arms and neck. Also still pretty dry… but who isn’t in a time like this? I have rough linchified areas on my inner calves, neck, lower back, wrists, below the navel and arms.  Anxiety still pretty high. Not nearly as bad as it was just a couple months ago when I was experiencing a feeling of doom before laying my head to rest. The increasing temperatures and humidity of summer has caused flaring, so I’ve been avoiding the outdoors. Taking the bus is still very difficult as the waiting periods are long enough for my body to heat up in warm/hot weather, so i’ve been taking taxis to go places. Also, I’ve had a noticeable B.O. this last month for no apparent reason and wonder if it has to do with what I’m eating or the withdrawal. I’ve read about many people having the same issue going through TSW. Has anyone found out conclusively if it’s caused by TSW?

The Good:

My skin is feeling and looking better. My face looks near normal. My thighs look untouched by TSW. My bum feels pretty darn smooth! The itching usually only ever happens during the night. Daytime itchies are common, but not as distracting as the night time ones. Still using apricot oil (was using the heavier grapeseed oil) but feel like I’ll soon be moving on a lighter oil soon. Coconut is next! Confidence is gradually reappearing. I notice myself smiling and laughing more 🙂 Able to tolerate cosmetics/makeup, so I can leave the house with eyebrows and lipgloss. Yay.

I went to Fabricland yesterday to pick up a couple different silky fabrics to get some summer scarves made. I’d really need to learn how to sew myself and have a few to choose from. Most of the current scarves I own now are too heavy for summer and want something to just cover my neck since it’s the most damaged/raw area.

I had a chance to meet Natasha from the ITSAN forum in Toronto. She was lovely and a pleasure to meet. Her strength and composure was inspiring and gave me something to hold on to. Hope to meet you again, Natasha!

Impressed that I’m able to slap on some makeup and run around outside. It feels good to finally go out on a regular basis. Oh, right – I also just started working again! I’m working at a retirement home as a “Companion” for en elderly woman, part-time.  Hands down, it’s the best job I’ve ever had. It’s kept me on my toes and surprisingly has given me a new appreciation for life.

My birthday is right around the corner. I’ll be turning 27 on June 25th. I think about how quickly time has passed me by and how great life can be when I’m healthy again. I’ve been thinking more about my career path and travelling I’d like to do next year. I guess that’s another post.

There’s news of a recent Healed Story by Juliana! She had it pretty rough. If you look at her photos and read about her experiences with TSW, it’s amazing to see how much happier and healthier she’s become. I believe it’s taken her 2 years to come to this point. The body truly does miraculous things and can heal. Another beautiful testimony to Topical Steroid Withdrawal and how these prescription creams can do more harm than good. Congratulations to you Juliana!

Sending warm healing vibes to you, xoxo.

Night Itchies and Cortisol Levels

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The itching that inevitably comes with Steroid Withdrawal seems to amplify at nighttime is a regular visitor, although unwelcomed! It was much worse in the earlier months, but is still very present in my 5th month. The itchiest spots are the folds of my arms, wrists, neck, inner calves & inner thighs, ears and jawline. These are also my worst, most damaged areas. The itchiness was so intense before, like down-to-the-bone deep down itching. I’m not sure if the term “itching” gives the horror of the experience justice. The only thing I could do was scratch to give myself some relief. I attempted to push through the itching and not scratch for a few minutes in hopes it would pass. I couldn’t do it for more than 3 minutes — and this took all the will power I could muster. I’m entirely grateful those days are gone.

The itch at present is still pretty bothersome. It’s been getting worse as the warmer days of summer are coming. I have been using 3/4 sleeves and light scarves to mask my skin. I guess the good news is I think that I think things are looking better than they do. I’ve left the house with short sleeves thinking it’s no biggie and then realize how ragged it really looks when I’m out and about. I also get itchies when I’m stressed out, so keeping myself in check with deep breaths helps me regain control. I try to keep the itching at a minimum at night in a couple different ways. 

Dr. Rapaport has attributed the night time itch to lowering cortisol levels. In general, cortisol levels are at its peak around 9am and is at its lowest at midnight. This change throughout the day and night is caused by the amount of sunlight our bodies are receiving — aka circadian patterns. Here’s a chart showing this:

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Cortisol levels are highest during the daytime when our bodies are synhesizing UV rays for its production

The actual episodic bursts throughout the day correlate to our eating patterns (amongst other things). Levels increase soon after we’ve eaten, so snacking throughout the day is also a good idea. 

I also use something called Licorice Root. it’s a herb that prolongs the half-life of cortisol — or in simpler terms, keeps up your cortisol levels up. A naturally-occuring chemical found in Licorice Root called glycyrrhizic acid that prevents the breakdown of cortisol, which is done through enzymes (don’t ask me what kind of enzymes!). I’ve tried Licorice in tea form, pill form and tincture form. Pill form is the easiest – just pop ’em in and go. I don’t enjoy the taste of licorice so tea is a slow and painful way of getting it, although you can blend it with another herbal tea. Tincture is probably the best way to digest it, as tinctures are the most readily processed way to consume herbs for medicinal use. It has more “bio-availability.” I take LR throughout the evening. I start as early as 4:00pm and as late as 6:00pm depending on how I’ve been snacking and how bright it’s been outside (and well how mindful I am). 

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Licorice Root helps to keep up cortisol levels at night

Rapaport recommends antihistamines, particularly Atarax, to reduce itching and help with sleep. I personally use Benedryl, which didn’t work until month 4. Before that, I’d take it (more than the recommended dose) and I’d feel drowsy, but still too itchy to settle into bed.  Often I’d be up for 35 hours at a time. Those were the most bleak of times. I wasn’t sure how i was going to get through it. Now, I can manage sleeping at regular hours, but only with antihistamines. I’ve gone without a couple times and it was a total fail. The itch kept me up for most of the night. So for now, I will continue to use Benedryl alongside Licorice Root and regular snacking throughout the day (no problems with that!).

Even though I take Licorice Root, to say that I don’t itch at all would be false. Much of the itching happens when I get a deep nerve itch and I tend to it. Tending to it (ie. scratching) and applying pressure to the skin to relieve it produces a reaction in your body creating histamine and causing further itch.  However, I have noticed an overall pattern of more intense nerve itching when I’ve forgotten to take LR. 

Happy healing and less itchy days! xo.

Part 1: Reasons to Say No to Corticosteroids

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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.

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.”