Monthly Archives: March 2013

Adrenal Glands, What Are Ye?

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Update: I received a comment from Dr. Lawrence in response to my TSW question. 

Me: Thank you for this wonderful information! Question, if you don’t mind… Would your “healing adrenals” advice be applicable to those who are recovering from an underproduction of steroids/cortisol as a result of corticosteroid (creams, pills, shots) addiction? I am currently undergoing something called Topical Steroid Withdrawal as a result of using synthetic steroids to control my eczematous skin for many years.

Dr. Lawrence: Yes, the recommendations are generally for underactive adrenals and would apply to your concern.

I hate Topical Steroid Addiction. Hate it. I want it to run for its life, flip on its back and slowly slide onto the edge of a cliff and die. It angers me that the medical community has been irresponsible to the point of all this suffering of addiction and withdrawal. Just read the ITSAN forums.

I was walking the doggie the other day and was thinking about how empowering it would be to see what my adrenal glands look like in the process of healing. Withdrawal is only apparent on the outside, in our reflection and as a result can sometimes makes me feel guilty about feeling awful about my skin. But we very well know that we’re going through this stuff because our adrenals have been paralyzed by the use of corticosteroids. I didn’t know too much about the adrenal glands, except that they’re unable to function properly because corticosteroids have been overfed to the body.

Because Topical Steroid Addiction is still very young in the medical community, it will be awhile until there will be media explaining TSA and how the adrenal glands become damage and heal with TSW. In the meantime, I feel like educating myself on the various aspects of TSW would be very empowering. Because, let’s face it, I feel pretty darn helpless in my painfully dry, itchy, red, flakey, oozy affliction.

The first helpful video I found was this video, simply called “Adrenal Glands Class,” which is a 50 minute lecture by Dr. Vaughn Lawrence, on the basic functions of the adrenal glands and ways to heal overworked adrenals. I think that watching the whole thing is while worth it. I’ve made brief point-form notes for myself and have posted it below.

Lawrence talks about natural ways to heal the adrenal glands, although he discusses this in the context of adrenal fatigue (aka overproduction of cortisol and steroids), which is a form of adrenal damage. Although adrenal fatigue is not the same issue as the adrenal damage created by TSA, the advice is geared to overworked adrenals. The adrenals are underworked during TSA when our adrenals stop working because of the excess corticosteroids we feed our bodies, and must re-start its engines but does so very slowly. Either way, I will be taking his advice with a few grains of salt. Most of it is nutritional advice, so following it will be healthy at worst.

Read the rest of this entry

Forced Bravery

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It’s hard enough looking at the reflection in the mirror. I think I’ve finally come up with the courage to post photos of my current condition. Sliding it out for the world to see feels more like forced bravery than fearless conviction. But I believe that if you put on a smile, cheer will follow. Here they are…

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Left side of my neck and face. Thickened and weeping skin. Yum.

This is the left side of my face and neck. It’s looked like this for at least a month now. I have lumpy lymph nodes on my neck where the large blotchy rashes are located. I wrap nice Cottonelle paper around my neck to catch the weeping ooze and hide my neck. It stresses me out every time I feel something like my scarf brush against my neck or see it. So wrapping for the last week has made a difference in healing. Wrapping my neck with paper and securing it with a bobby pin has helped a lot. The skin there has a few creases and has sagged, so that the folds stick to each other and it feels icky, so I end up tending to it and it turns into a mess. It was just by coincidence that I started doing this as mom bought this Cottonelle brand toilet paper. It’s gotta be a 50-ply paper with strong fibres, so it wouldn’t stick to weepy skin like regular paper would. Now, I don’t feel the folds sticking and I don’t have to see it throughout the day.

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Perioral dermatis developed with steroid use. This is it on a really good day.

The area around my lips, especially above it, flared one day when I was approximately age 12 when I was playing with Lucky, my aunt’s Labrador Retriever, and probably touched that area. It’s been a frequent problem area since then. I’ve used anything for 1% Hydrocortisone to Protopic/Elidel to Clobestol Propionate. It has gradually gotten worse to the point that it’s permanently cracked (tiny hills and valleys from epidermal damage) and oozes when anything touches that area. It was oozing a yellow fluid and was given several different oral and topical antibiotics; it continues to be a problem. It looked like this for a good month, but went downhill last week when my bf’s stubble hit that area despite our carefulness. I’m really hoping that it will no longer be extremely sensitive after the TSW deal.

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Blotchy, thickened, weepy, tight dry face

This is what my face pretty much looks like at the moment. The affected areas are my temples, around the eyes and mouth, jawline and some of my cheeks. Makeup is my friend most days, although I don’t bother unless I’m going out, which is almost never at this point. My eyelids do this funny thing where there’s not one, not two, but three folds. I’ve heard another fellow Asian mention this on the ITSAN forums. Think it’s because the skin’s just so dry that it creates more creases than I need.

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My hands never looked like this before TSW. I never really used steroids on my hands or wrists except for the odd time when this little spot would get out of control. Working at the hospital and having to constantly sanitize them brought them to this state. Although I no longer work there, it hasn’t bounced back since then; it’s been 1 1/2 months. The skin here is very dry and thick. Think I should use my Dermasilk gloves to help with moisture retention.

Overall, you could say that things have improve in the last little while. I started TSW from the beginning of January 2013, so I’m into my third month of withdrawal. I experience some “pins & needles” itching throughout the night, but the itching usually happens when I tend to a small spot that initially always seems harmless and then the itch spreads in all directions. I have to admit that I probably scratch even when I’m not itchy. Even though the itch isn’t bad, scratching gives me immense relief, it’s almost orgasmic. I’m trying really hard tonight to keep my fingers away from my skin. Feel like I should take up knitting to re-train my hands to keep away from my body. I’ve created so much damage already and need to distract myself.  In the meantime, I’, debating whether I should buy this Calendulis Cream or EczeHerbal Ointment found in The Eczema Company (http://www.eczemacompany.com/eczema-creams-salves/) for my face as it’s been so dry lately.  Shea butter sinks in nicely but like everyone else, I wonder if there’s something better out there.

Lotions and Potions

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I came to conclude that I’ve grown dependent on steroids after numerous trials with alternative and natural treatments. Although some things have helped with the condition of my skin, no single treatment has resolved my itchy, hot, irritable skin. I’ve spent too much time and energy into researching for the causes of my curs’d skin, but I’m not yet ready to lay down my armour and accept that my life will be ruled by how my skin feels. For those who have skin issues, you know exactly what I mean. You feel like going for a bike ride? You can’t! Because — very predictably — you flush/sweat too easily, fall into an itching fit and must hasten home to a cold shower.

Below is a list and brief description of things I’ve tried to resolve my skin issues, which is what I now realize to be steroid-induced eczema. I gave most things a chance, as long as it made sense and was meant to resolve eczema. Although some things have helped (i.e. moisturizing with grape seed oil), the underlying symptoms of whatever-the-f&(% is going on with my skin was/is very present. Some of these things I continue to use as it minimizes any flare ups or keeps my skin in good condition, while some other things I no longer bother with as it wasn’t worth while (i.e. too much money and unsuccessful).

I moisturized incessantly with different types of oils.

I thought that if I brought moisture back into my skin, it would be happy and functioning. Dermatologists believe that eczematous skin does not function properly because the skin cells are not as “dense” as normally functioning skin (this has been called the Defective Skin Barrier Theory). As a result, moisture retention in eczematous skin is lesser than those who have normal skin. I thought, “If I could get my skin to act normally by adding more moisture, maybe…”

Neem oil, jojoba oil, emu oil, grape seed oil, almond oil, castor oil, sea buckthorn, oregano oil, coconut oil… All in 3-4 week rotations throughout the year to give each oil a chance to reap its benefits. While these all had their benefits and disadvantages, my skin was always thirsty for more. The redness, irritation, itching wouldn’t give out with all the loving I gave my skin. I’ve been using coconut, castor and grape seed oil for months now. I liked the emu oil, but have decided against it for ethical reasons. They kill emus for their oil.

Some people going through TSW complain of a metallic smell from their skin, which has been attributed to fungi growing on the skin, so using the coconut oil for its antifungal properties isn’t a bad idea. I use it for this reason. Castor oil is too thick and heavy, and would take ages for it to sink into the skin. I like the grape seed oil because it’s fairly lightweight and inexpensive. Jojoba oil is nice but over my budget. Coconut oil is also pretty expensive if you get the raw, unprocessed, extra virgin version, so I compensate by using it only on my face, neck, hands, basically exposed skin areas. I would like to give avocado oil a chance but have not found a bulk size that would make the purchase worth my money. I didn’t care for almond oil; it was sort of like grape seed but a tad bit heavier. Sea buckthorn is often sited for eczematous skin, but did not see a difference. I would argue that any slight benefits that it offers would be difficult to discern as skin going through TSW is too damaged to notice its benefits. I will probably go back to it if I need to in the future. For now, I’m happy using grape seed oil as my main emollient.

Gluten

I eliminated gluten, a common food allergy, from my diet. 

I removed gluten from my diet for 90 days (3 months) without success. When I re-introduced it into my diet again in December, I did not see a noticeable difference in my itching responses. The only things that made me itchier was some nightshade vegetables like eggplant and squash, as well as shellfish. I avoided these, but still continued to experience itching in and around my body. Despite my newfound allergens, there was a strong residual itch that could not addressed by eliminating those foods stated above. It was expensive but very healthy. When my income allows it, I would go back to this diet. I was desperate at the time and sacrificed some money in going gluten-free thinking it would help me. Eliminating gluten also allowed me to follow the anti-candida diet, which is often sited as a solution to eczema.

GI Tract

I followed the Leaky Gut and anti-Candidiasis protocol.

I also reduced sugars from my diet to eradicate Candida from my GI tract, which is believed to affect the skin because the GI tract houses 90% of the immune system. The thinking behind the eczema-candida connection is that the skin is the last organ to expel toxins from the body since it’s the outermost surface of the body. Candida overgrowth meant that there was excess faecal matter in my intestines, resulting in intoxication in the thick of my immune system.

Because sugars feed the bacteria which supports Candidiasis, I stopped eating fruits, glutonous breads, pasta, candy, all things sugar for 3 months without any apparent improvement or success. In following the anti-Candidiasis diet, I would also be addressing my leaky gut problem too. Leaky gut is a condition in the GI tract where the overgrowth of candida damages the intestines, making the gut hyper-permeable, thus allowing the toxins created by the candida to seep through the walls of the GI tract and contaminate the bloodstream. Because the body works to remove toxins from the host, toxins in the GI tract and bloodstream means that they will show up in the skin, or so the thinking goes.

Dander

 I reduced environmental allergens from my surroundings.

My real problems started when I started sleeping over my boyfriend’s place where cat dander also resided. My face developed these strange, itchy blisters where my face touched his pillow cases, but no asthma. After a few months, I finally clued in (doh!) I started using an anti-dander laundry detergent on everything I laid my skin on (bedsheets, curtains) as I was convinced that the cats living in my boyfriend’s building was effecting my skin reactions.

As a child, my asthma and skin flared around cats and dogs, so I deduced that it was the cats although they did not enter his room. We used an anti-dander solution in our shower soap, an allergy reducer spray by Febreeze. I saw improvement as I wasn’t getting blisters on my face anymore, but still felt unsatisfied, so I completely removed myself from that environment to see if it would make a difference. After weeks and weeks of not visiting his place, I saw no improvement and continued to experience itchy, hot, irritable skin.

Homeopathy

I went to a Naturopath who offered natural solutions. 

I am a strong believer in Naturopathy or at least its principle. Afterall, Western medicine a la steroids is the reason I’m where I am health-wise. I was given Unda 12, 17, 22 & 30, all to assist with my skin’s functioning. I took these for 2-3 months without seeing any marked improvement, while on steroids. I also saw another naturopath who gave me a number of supplements (probiotics, vitamin D, vitamin B, fish oils…). I saw some improvement here in my skin, but still continued to experience intense itching. I continue to use supplements such as fish oils, zinc, silicea, vitamin D, which are all good for the skin, which I can always use some help with.

Mild products

I used mild skin products meant for sensitive skin and avoided fragrance like the Plague. 

I’ve tried CeraVe, Cetaphil, Avene, Aveeno, and so many other brands, though my skin continued to  experience irritation. At times, I would feel stinging/burning sensations when I applied these things. This was especially apparent when I used Protopic (aka Elidel). I eventually stopped Protopic as I saw little to no improvement, and with the price tag on that stuff, it just wasn’t worth it ($93/ 50ml). I’m sure avoiding common irritants like fragrance and using mild product did good for me, but did not completely eliminate my issues. I continue to use mild products to avoid reactions, though I no longer experience sensitivity to them as I did when I was using Protopic. A few weeks ago, I had gotten a little too bold for my own good and went to Lush to grab an old favourite, the Angels on Bare Skin, which I used before my Clobestol days. Serves me right for overreaching. It stung like crazy.

Love life

Thoughts/Conclusion

As a moderately long-time steroid user, eliminating steroids/corticosteroids was the only thing I hadn’t tried. In 2012, I used Clobestol Propionate approximately 30-40 days cumulatively of 365. The diagnosis and pathology of Topical Steroid Addiction suits my experiences with my skin, and is very compelling. Every time I used a round of steroids, I saw an apparent improvement, but saw continued itching, hotness, irritability. I saw a noticeable overall decline in the health/condition of my skin (increased dryness, irritability, redness) soon after I started using Clobestol. Although it gave me anti-flammatory relief, it was temporary and often resulted in “angrier” skin after each use.

I am willing to further endure the symptoms of TSW. It will require a long time to see results, but the before and after photos of healed TSW veterans are profoundly promising. If Joey Brown or Kelly Palace (users of steroids for 30-40+ years) can heal, there is something definite to what Dr. Rapaport is reporting in his medical literature and teleconferences. There are a dozen red-winners (red-skinners / red-winners… haha, get it!?) on ITSAN who show a profound improvement in their skin. This evidence is under-publicized and should be further investigated – but not if the pharms can help it. Dr. Rapaport’s 2,000 healed TSW patients and ITSAN success stories, as well as my skin’s matching pathology to Topical Steroid Addiction (TSA) is strong evidence and worth my while. After several months of researching and trials, TSW just makes sense. If 1… 1 1/2… 2 years from now, I am right where I left off, I’ll let you know. Otherwise, I’ll be living life and loving it. Now that’s a thought I can live with! The song below is by Tegan and Sara, whom I’ve been following for a long time now. Their new song, “Drove Me Wild” begins with the lyrics, “When I think of you, I think of your skin golden brown from the sun.” This brings ideas of fun, comfortable days on the beach – something I look forward to.