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.

A Little Rant and Literature

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.

History + First Month of TSW

I am so tired today and not sure why ’cause I slept a good 9 hours. I wonder if it’s the stress. I’ve had days where I feel optimistic, then I’ll take a bath and I go scratch-crazy and feel like my world is upside down. My brain feels foggy and I’ve been wanting to write a solid blog post, but I feel like I could fall asleep right this very second if my head just rested more horizontally on this pillow…

So I’ll give you a bit of history of my eczema slash steroid past, in an effort to keep myself awake and do what I made myself to do today. I’ve had eczema for quite some time now – since I age 6. Nothing serious by any means. My mom kept a small tube of hydrocortisone in the cupboard that she’d take out every once in a while. I had and still have environmental allergies at the time (cats, dust, pollen) but was too young to remember if my flareups were connected to those allergens. Either way, my skin really didn’t bother me at all when I was very young. As a teenager, my legs and arms suffered from intense scratching during the humid summers.. My eyelids we red and itchy and used mild TS (topical steroid), but it never really made it better.

By age 17, I was introduced to Clobestol, the most potent TS, by a random Vietnamese lady who ran a salon in her basement when she noticed some rashes on my arm while she was doing a facial on me. She showed it to me like it was the answer to all my itching, rashy issues, and told me that doctors are very hesitant to give it to patients because it is very strong, but it has made her friend’s daughter’s someone’s eczema disappear “forever.” It seemed simple and I took it. No questions asked.

I used the Clobestol sparingly off and on. I used it on my neck, eyelids, arms for weeks at a time. It made it go away, but only temporarily and it would always recur soon again. I figured that this was just the nature of eczema and there was nothing I could do about it.

Fast forward to 3 years ago (age 23) when I started sleeping over my boyfriend’s house where the combination of carpet and 2 cats awaited me. I didn’t clue in at first that I was actually reacting to my new environment when my body was itchy and my face was covered in these strange blistery things. I soon realized that the only thing that had changed was sleeping over his place. My diet was still the same. Stress was non-existant.

So I started using steroids and Protopic on my face to make the yucky rashes disappear. By the summer, the itching was uncontrollable and my body was covered in rashes and bruising. Since then, I’ve been using Clobestol off and on over the last 3 years. I noticed my skin going from very oily to very dry. I hated it at the time, but I truly miss my oily days. It’s comforting to think that I could even produce enough oil that blotting was an absolute necessity every half hour. I was so oily, your mom could fry your breakfast on my face.

Nevermind the zits the would ensue. I would take oily skin over dry any day. By last winter – 2 years into Clobestol use — I had been the driest yet and extremely sensitive, especially on my face and above my lip.

My decision to undergo steroid withdrawal is based on the lack of success with steroids. November 2012 – I YouTube’d “Face Eczema” and watched this video: http://www.youtube.com/watch?v=dfIz8ZBqg5o. I was going through what she was going through. Like her, going to my minimum wage retail job was difficult with an oozing, red face. I read comments about Red Skin Syndrome, although I didn’t take it seriously. I went on another round of Clobestol for 2.5 weeks before rethinking steroids. My skin cleared but was still extremely itchy, so as soon as I got off it, it was worse then ever. It was everywhere, everywhere and spread to new places.

I remembered what I read about Red Skin Syndrome and researched more about it. Everything started making sense to me – what I’ve been going through. The photos of withdrawal from steroid addiction sent tears down my eyes. The more and more I read, I realized that I’ve been going through withdrawal off and on for the last 3 years. The symptoms of withdrawal were very familiar – dry, flakey, deeply itching skin, hair loss, oozing.

My first month (January 2013) of complete withdrawal was hell. The itch in my body was insatiable. I scratched until I bled and it didn’t matter. Going to work was extremely difficult. My neck and face was oozing (and still is) so I kept my distance from co-workers. I could feel my body shivering ever so slightly and was always cold. I made sure I had clean turtlenecks to wear everyday. I used my mini breaks to moisturize my face although I knew my face would shrivel up an hour after. My skin was brittle. Soaking in water was painful. Moving was painful. I saw hair tangled around my fingers every time I’d wash. I wanted to lay in bed under a cover. Every moment hurt and thoughts of suicide were insistent.

Looking back, my skin was in a half decent before my first allergy flare at my boyfriend’s house 3 years ago. In fact, just before I met him, my eczema was a faded memory. No doubt I have skin allergies, but the true nature of my eczema can no longer be accurately measured since the side effects of steroids has tainted its original state. Plus, if this medication is meant to help me, then why have things only gone downhill since I started using it? Over the last year, I’ve tried to stop using TS but I always went back to it because things got worse after getting off it. Sometimes they say, “Things will get worse before they get better.” With steroids, it’s been more like, “Things get better-ish, then get worse.”