Tag Archives: ITSAN

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.

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 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.

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.