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.

Night Itchies and Cortisol Levels

The itching that inevitably comes with Steroid Withdrawal seems to amplify at nighttime is a regular visitor, although unwelcomed! It was much worse in the earlier months, but is still very present in my 5th month. The itchiest spots are the folds of my arms, wrists, neck, inner calves & inner thighs, ears and jawline. These are also my worst, most damaged areas. The itchiness was so intense before, like down-to-the-bone deep down itching. I’m not sure if the term “itching” gives the horror of the experience justice. The only thing I could do was scratch to give myself some relief. I attempted to push through the itching and not scratch for a few minutes in hopes it would pass. I couldn’t do it for more than 3 minutes — and this took all the will power I could muster. I’m entirely grateful those days are gone.

The itch at present is still pretty bothersome. It’s been getting worse as the warmer days of summer are coming. I have been using 3/4 sleeves and light scarves to mask my skin. I guess the good news is I think that I think things are looking better than they do. I’ve left the house with short sleeves thinking it’s no biggie and then realize how ragged it really looks when I’m out and about. I also get itchies when I’m stressed out, so keeping myself in check with deep breaths helps me regain control. I try to keep the itching at a minimum at night in a couple different ways. 

Dr. Rapaport has attributed the night time itch to lowering cortisol levels. In general, cortisol levels are at its peak around 9am and is at its lowest at midnight. This change throughout the day and night is caused by the amount of sunlight our bodies are receiving — aka circadian patterns. Here’s a chart showing this:

Cortisol levels are highest during the daytime when our bodies are synhesizing UV rays for its production

The actual episodic bursts throughout the day correlate to our eating patterns (amongst other things). Levels increase soon after we’ve eaten, so snacking throughout the day is also a good idea. 

I also use something called Licorice Root. it’s a herb that prolongs the half-life of cortisol — or in simpler terms, keeps up your cortisol levels up. A naturally-occuring chemical found in Licorice Root called glycyrrhizic acid that prevents the breakdown of cortisol, which is done through enzymes (don’t ask me what kind of enzymes!). I’ve tried Licorice in tea form, pill form and tincture form. Pill form is the easiest – just pop ’em in and go. I don’t enjoy the taste of licorice so tea is a slow and painful way of getting it, although you can blend it with another herbal tea. Tincture is probably the best way to digest it, as tinctures are the most readily processed way to consume herbs for medicinal use. It has more “bio-availability.” I take LR throughout the evening. I start as early as 4:00pm and as late as 6:00pm depending on how I’ve been snacking and how bright it’s been outside (and well how mindful I am). 

Licorice Root helps to keep up cortisol levels at night

Rapaport recommends antihistamines, particularly Atarax, to reduce itching and help with sleep. I personally use Benedryl, which didn’t work until month 4. Before that, I’d take it (more than the recommended dose) and I’d feel drowsy, but still too itchy to settle into bed.  Often I’d be up for 35 hours at a time. Those were the most bleak of times. I wasn’t sure how i was going to get through it. Now, I can manage sleeping at regular hours, but only with antihistamines. I’ve gone without a couple times and it was a total fail. The itch kept me up for most of the night. So for now, I will continue to use Benedryl alongside Licorice Root and regular snacking throughout the day (no problems with that!).

Even though I take Licorice Root, to say that I don’t itch at all would be false. Much of the itching happens when I get a deep nerve itch and I tend to it. Tending to it (ie. scratching) and applying pressure to the skin to relieve it produces a reaction in your body creating histamine and causing further itch.  However, I have noticed an overall pattern of more intense nerve itching when I’ve forgotten to take LR. 

Happy healing and less itchy days! xo.