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…

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.

Lotions and Potions

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.

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.

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.

 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.

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.

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.

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.