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.
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.
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.
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.
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.
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.
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.
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.
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!
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)
laleizel 