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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Isotretinoin and Wedding Rings (Rachel’s Isotretinion Log: Week 3)

I’ve been on isotretinoin (also known as Accutane and other names) for three weeks now, and I’m amazed at how quickly I’ve seen results.

But isotretinoin almost made me lose my wedding ring! About a week after starting on the medicine, I had full range-of-motion in my hands and was able to my fingers open throughout the entire day. This was a totally new feeling for me, since normally my hands lock in “flexion” with my fingers curled in, and it hurts to straighten out my fingers.

My wedding ring is a half-size or so too big. We got it in that size in order to make it easier for me to slide the ring over my knuckle in flexion. (And in fact, we had an awkward pause during our wedding ceremony from the extra time it took Jennifer to ease the ring onto my finger.) But with the increased flexibility in my fingers, that too-loose ring started flying off my finger when I made too-expansive a hand gesture.

Wedding ring flying off my finger while seated at my office? Not a big deal. Wedding ring flying off my finger while walking down the street in downtown DC? That’s a problem. Fortunately, I recovered the ring after searching the sidewalk for a few minutes.

You’d think that after having the ring fly off my finger while walking downtown that I’d have learned my lesson. I thought that I could just “be more careful” until I had time to get the ring re-sized over the weekend. But on Friday afternoon, while driving to the train station, I noticed that my ring wasn’t on my finger at all. Uh oh.

Fortunately, later on that afternoon, I found the ring in my purse — it must have slid off my finger when I was grabbing my cell phone. That ring is now safely tucked away at home.

The ring-flying-off-the-finger problem was just one symptom of how quickly I was experiencing a positive effect from the isotretinoin. I’m on a low dose — 40 mg per day (0.6 mg/kg/day) — and it took just one week for me to notice the big change in my hands.

Without the isotretinoin, even with a morning shower, I would lose flexibility in my hands after a few hours, although I could improve flexibility by soaking my hands again or applying multiple layers of cream throughout the day. But after only one week on the isotretinoin, I was able to keep my fingers open all day long, without a lot of extra maintenance. I’ve essentially had full range-of-motion in my hands ever since then. This is a huge deal for me, since the main reason I wanted to try out isotretinoin is because I have been worried about the effect of my icthyosis on the bones in my hands and ankles.

Besides noticing my hands becoming more flexible, I noticed my skin softening up and shedding. During the shedding phase, I was itching — a lot. Fortunately, the round of shedding finished relatively quickly. I think I wound up shedding an entire layer of skin off of my scalp, torso, arms and legs. Let’s just say that there was a lot of grit deposited in my bed those nights. After the shedding, though, I noticed that my skin was a lot smoother and softer than before. Jennifer says it’s a huge difference.

Here’s a picture of my hands, taken just as I was getting out of the shower.

Rachel's hands, 3 weeks on isotretinion

Rachel’s hands, 3 weeks on isotretinion

The light areas you see on my hands are hyper-hydrated, slightly thicker skin. The red areas are the thin, smoother skin.  I’ve noticed that the redness in the hands fades away as my hands dry out. Also, the ring you see in the picture is a CZ “spare” in a smaller size.

So let’s talk about other side effects. I had blood work done last Monday, two weeks after starting to take the isotretinoin, and my triglycerides are normal and my liver panel is also normal. So those are the two big immediate things that might have caused worries.

I’m not feeling any aches and pains above and beyond the usual. For the past week-and-a-half, though, I was fighting with an ear and sinus infection and a nasty cough. It wasn’t strep throat, but it was enough to make me miserable, independent of the itching from the full-body-shedding I was going through. The combination of the two wasn’t something I’d care to repeat. I’m trying to be extra-conscious about bone-related aches and pains, and when I was sick a couple of weeks ago I couldn’t tell if it was something unique to the isotretinoin or just normal “I’m sick, I feel miserable” stuff.

Likewise, two weekends ago, my normal drive from DC to Richmond stretched out for 4.5 hours. (It normally takes less than two hours.) To hear Jennifer tell the tale, I was not a very pleasant person to be around that evening. We were wondering whether my sunny disposition that evening was related at all to the isotretinion, or the combination of horrible highway traffic, illness and itching. Since I have (apparently) returned to my usual sunny disposition, we’ve chalked that all up to the latter.

Really, besides the itching, the worse side effect I’ve experienced so far has been that I now have really dry and chapped lips. Chap-stick seems to work fairly decently.

Although, come to think of it, I can no longer do “stupid human tricks” and pick up hot casserole dishes with the palms of my hands. And staying in the shower with the boys for over an hour seems to be getting my skin hyper-hydrated in ways that it wasn’t, before.

So for now, things are looking pretty good. I haven’t noticed as much of a change in my feet as I have in my hands, but we’re keeping our fingers crossed to see how things develop. And I’m making sure my wedding ring doesn’t fly off my finger any more!

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