1 Year Update


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).


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


Left wrist



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.


Happy New Year from K and me!

Update on 2nd Flare


Hey guys,

Just wanted to do an update on my second flare since I’ve started to see positive change since my last post.

Itchiness. Things seem to be calming down the last week. Way less itching during the day. I only notice it when I’m in the shower for some reason. Nighttime I’ve been more disciplined about not reacting to small itchies. I’ve taken 1/4 of an antihistimine to keep calm for the last few days and it works for me.

A week ago, I would continue to wake up at night to scratch and keep K up at night. I haven’t really gone at it (scratching like crazy) for a few nights now and I can already see some improvement in my skin… knock on wood!

Skin texture. The texture and softness of my face has drastically improved since using Calendula cream and safflower oil. Two weeks ago, my skin had many small bumpy break-outs, which are presumably from using oils (Emu, apricot, grape seed…). Those are almost all gone. Also, the flakey, dry skin is gone and is somehow smooth and soft. This plus using a humidifier I believe has made this noticeable difference in my skin.

What’s left under the dry flakey skin is sporadic dark red pigmentation spots where I had problem areas during the thick of my TSW (Topical Steroid Withdrawal).

Photo on 2013-11-15 at 13.43

Photo on 2013-11-15 at 13.40 #2 Photo on 2013-11-15 at 13.46 #7

Perioral “Eczema.” You can see on my cheek/jew area that there’s darkened areas, but overall much improved skin. I’m glad that my perioral “eczema” is practically non-existent. The raised, bumpy skin I once had around my mouth has gone down and hasn’t oozed in a couple weeks. Horray! This is incredible news considering last year these spots were oozing non-stop and was misdiagnosed with impetigo, which was consequently treated with various mild to strong antibiotics for the course of 10 months by 3 doctors (one being a dermatologist, who wanted to send me to a Infectious Disease Specialist).

Photo on 2013-11-15 at 13.46

Calendula Cream & Safflower Oil There’s my quick update. I recommend looking into Safflower oil and Calendula cream. I feel very strongly about both recs. I ordered the cream from The Eczema Company and got the larger jar for $46, which seems like a deal if compared to the small tubes available at health food stores. I’ve only used it on my face, neck, wrists and problem spots on my body to stay frugal. Otherwise I’d bathe in this stuff. I hate to call it a miracle cream, but the drastic change it’s made seems too good to be true. Safflower oil was recommended by a friend. It’s inexpensive. I got a 500ml bottle for $7 at the grocery store. Get organic if you can. It honestly doesn’t sound special, but this stuff is the sh*t. My skin hasn’t felt like this in foreverrr.

EczemHerbal Ointment. Oh, also. I started using EczemHerbal Ointment (#2) by Zi Zai Dermatology (from The Eczema Company) the same time I started with Calendula cream. The shipping is more affordable through their website versus ordering directly. It’s difficult to say if the ointment alone has helped as I’ve used it in conjunction with the Calendula cream, though I will stop the EczemHerbal for a few days to tell you if I see a regression without it… just out of my earnest curiousity.


Update: Second Flare


Right at 9 1/2 months. Things aren’t as great as they could be. Itchiness has gotten a lot worse, so I’ve gone back to antihistamines. I’ve tried taking natural alternatives to help with the itchies, but it just hasn’t helped recently. I’m grateful that it’s manageable enough so that I don’t have to excuse myself all the time from what I’m doing, but I’ve caught myself scratching in front of co-workers.

It seems better that this flare has crept up on me instead of happening abruptly. Flaring out of nowhere could put one in panic mode. It could dissipate fairly quickly or stay for a while. My nerves have been firing all night and day. I’ve gotten better at not scratching every time I feel itchy. I woke up last night in a scratching frenzy trying to calm down, though K was very patient and sweet calming me down before we both fell asleep.

I’m okay with the fact no one at work has asked me about the way my skin looks and I think I’d like it to stay that way. My neck is covered with a scarf everyday, though my face and hands show signs of “eczema.” I’ve been asked by family, “How is your skin?” though this question seems both bother me and satisfy me simultaneously. Satisfies me because it’s a genuine question. Bothers me because it’s deeper-down than skin. It’s the internal physical damage that steroids have caused and more than just my skin. But no one’s really going to ask us, “How are your adrenals doing?” though there’s no measuring it without medical support and well, it just sounds plain silly!

I’ve retorted, “It’s steroid withdrawal!” when K has mistakenly asked me how’s my eczema doing. He’s voiced some doubts about what I’m going through. Somehow that hurts a little, but he trusts me at the end of the day. How is that all TSW’ers are going through the same thing? The the intense itching, the weaker-than-paper elephant skin, the oozing, the hair loss… Either we’re all crazy or there’s something to it. We have examples of HEALED red-skinners, who have gone through the same shit we’re going through, but are now living perfectly normal lives now. Dr. Rapaport has helped hundreds and hundreds of patients heal from what other doctors thought was just plain old eczema. Steroids never truly solved “the problem” to begin with.

I’m not about to accept that what I’m experiencing is eczema. Shit NEVER got this bad until I started Clobestol (and even worse when I got off it.  Ever. Clobestol was only first used to fix a tiny itty bitty rash.  The jump from itty bitty rash to full body rash is a more than a stretch of logic. I don’t have an autoimmune disease and I don’t have “hidden” food allergies.

I was itchy but NEVER to the extent that I’ve experienced during withdrawal… All day long with immense intensity. My skin never just fell apart after scratching even a little bit. We’ve all ended up at ITSAN for a reason. Because the medical advice we’ve been following hasn’t given us solid answers. Why is it that our skin has turned a hyper-sensitive, itchy, oozy… scratch post? I could respect some of work that Western doctors do. They are well-trained advocates of medicine. Ha.

And so… I meet my second flare. The paper-thin skin, the liquid gold sapping from my insides, the organ-deep itching. Bring it on. And from this, I will be healed.

Part I: Skin Care Routine – Cleansing


Soooo – thought I’d share what my skin care routine is like these days. It’s still pretty intensive although I don’t spend nearly as much time it. I’ve avoided baths at all costs and have invested in a declorinating shower head to soften the water. It’s waaay more gentle on the skin compared to hard tap water. I’ve taken only a dozen baths since May and it feels great. I still have unsettled feelings about the bathtub. The smell of the bathroom alone can be sometimes provoking. I’ll begin…


Dr Bronner’s Magical Castille Soap

I wash my skin with Dr. Bronner’s Magical Castille Liquid Soap in Peppermint. Sketch name, but I love the ingredient list – natural, no harsh soaps, no SLS (Sodium Lauryl Sulfate or its variants). It gives me a tingly sensation afterwards, which helps with itching. My poor sister dumped a generous heap of this stuff in her bath – not realizing just how pepperminty this is – and went to bed shivering cold. So make sure you heat up your shower right before to avoid getting pepperminty chills. This cost me approximately $10 CDN for a large bottle. 


A-D-E Creamy Cleanser by Earth Science

To wash my face, I use the A-D-E Creamy Cleanser by Earth Science ($10 for 240ml) in combination with Castor Oil by Now ($9 for 437ml). It contains a whole shlew of natural and nurturing ingredients like sunflower, jojoba, apricot and avocado oil, aloe leaf juice, grapefruit extract, ascorbic acid, etc. It has an average rating of 3.9/5 on makeupalley.com where 70% of 96 reviewers would buy again. Amazon reviewers give it a 4.5 out of 5 Pretty darn good review in my book. Here is a nice review of it by Islaborg if you’re interested in knowing more. I bought this at random while at my local health food store and have bought a few since then. Cetaphil Gentle Cleanser is a more economical alternative. I used this pre-TSW and liked it alot. 


A glob of Castor Oil + my cleanser works well

In combination with the above face cleanser, I use a glob of Castor Oil with a pump of the cleanser. Mix it up in my palms and massage all over my face. I like this combination because it’s moisturizing and gentle, and better than just a cream cleanser on its own. My skin is still very dry and feels tight if I don’t use this. It’s not necessary to use these exact brands; this is just what I use. Trying a cleanser that’s simple, non-fragrance or unscented and gentle will work. Castor Oil is offered by many difference brands, though buying in bulk in much cheaper. I’m going to start experimenting with different oils soon once I’m done my big bottle, so feel free to do the same if you have something laying around the house. Apricot, grapeseed, avocado oil… Whatever might float your boat. 

Update: Month 8


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…


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).


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.


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


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.


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


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.