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.

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.

Part 1: Reasons to Say No to Corticosteroids

1. Your body stops producing its own anti-inflammatory defense mechanisms the more steroids it receives.

The steroids that your doctor offers you are a synthetic form of anti-inflammatory agents that your body naturally produces within your adrenal glands. Your adrenal glands are responsible for keeping your skin calm through its production of corticosteroids, along with the production of many other very important things within your body’s ecosystem. The adrenals are susceptible to malfunction as you become dependent on steroids.

Sometimes your skin/body becomes overwhelmed and is given steroids to speed its anti-inflammatory response. Initially, the cream/ointment will help with the inflammation and keep it at bay when another flare arises. The big issue with this is the body begins to depend on the synthetic feed of steroids for its supply of anti-inflammatory agents, which often results in dependency of the prescribed creams, ointments, pills and injections. The adrenal glands cease to produce its own corticosteroid as it understands that the body is receiving it elsewhere. In a sense, the adrenals become lazy.

I’ve used this analogy before… It’s similar to how your mom does your laundry for you. No matter how many times you tell her, “No, no mother, I’ll do it because I can,” she continues to do it despite the fact that you’re a grown, able adult. Eventually, you know she’s just going to do it anyway, so you stop checking if there’s any dirty laundry as you assume that laundry is no longer your responsibility. Like mom, the steroids are the easy, simple solution to fixing your laundry. And like you, your adrenals just lay back, relax and watch. This dependency often means that our bodies’ natural anti-inflammtory response is impaired as it no longer sees a need to add to the already mass amounts of steroids you’re ingesting through your permeable skin.

The even bigger issue is that your body begins to ask for more steroids more frequently and/or in stronger potencies. What happens when you’ve reached the strongest ointment? You go to pills until you’ve adapted to that dosage. The next step is injections. What about after injections?

Steroid dependency or addiction is marked by this need to increase the dosage. Often, we will continue to increase because our bodies have not yet recovered from this addiction.  Without knowledge of Steroid Addiction, many people continue their prescribed course of steroids as their body/skin is in an “excited state” of abnormal vasodilation, releasing high accumulated amounts of nitric oxide and is unable to withstand allergens without synthetic or natural steroids. It takes months to years for the adrenals to function normally again.

2. Steroids do not heal your dermatitis, but conceal a larger issue.

Steroid creams treat the inflammation of dermatitis on a superficial level. Applying steroids on the skin (or worse, ingesting it via injections and pills) is covering a messier issue with a bandaid. Unfortunately, this “See no evil, be no evil” approach that most modern professionals use on a daily basis is the core issue in the most commonly used treatment of dermatitis. Making the symptoms go away momentarily and continuously will satisfy some, but do not give you a chance to figure out what could be influencing your symptoms. Treating the symptoms and not the core issue is shortsighted and vain at best.

Atopic skin types are sensitive and need to learn about their triggers. There are common triggers like rough fabrics (i.e., wool) and allergens (dust mites, pollen, dander, etc.). Some of you may have food allergies or are sensitive to foods with higher amounts of histamine (we take anti-histamines to calm allergic reactions). Your health deserves a chance and learning more about what your body reacts is going to save your body and sanity.