Find Us On Facebook
Follow Us On Twitter
"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".

Read more about us and this blog...

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

Thoughts on Starting Isotretinoin

On Monday, I visited my local dermatologist for the second time in a month, and received a prescription for a a low dose of isotretinoin (also known as Accutane and other names), an oral retinoid.

It’s taken me slightly over a year-and-a-half to get to this point. Way back when I gave him a bunch of biopsies many years ago, Dr. Choate had suggested to me that for me, the benefits of oral retinoids outweighed the risk. I sat on this idea for a while, but our consultation with the medical experts at FIRST’s family conference in Denver last summer solidified my resolve to start. (And our own research, some related to the blog here, supported that conclusion.)

There were lots of reasons for the year-and-a-half-plus delay. I’m taking some other medicine that’s metabolized through my liver, and sorting out my dosage there and assessing alternatives took far longer than it should have. (I had a horrible experience with the endocrinologist who initially set me up, was met with a puzzled, “Huh, I guess that’ll work, although I’ve never seen this before” from the second one, before finally getting a more definitive answer from an expert. Sound familiar?) And once I sorted that medicine out, it took time to schedule myself into an appointment with my local dermatologist.

893515_439749152802668_1022169120_o

When I saw her a couple of weeks ago, my local derm was very supportive of starting me on isotretinoin. My biggest reason for wanting to try it out — other than following the advice of the several other experts who had suggested it — was my nagging fear that problems with my feet, if left unaddressed, would cause me problems later in life. While I’m getting around ok most days, the fissures on my feet and the buildup of scale is changing my gait — the way I walk, and that’s causing some bone deformities already. Plus, the ulnar deviation on my hands is getting worse, even with fairly constant filing and other exfoliation. So while I’m getting along fine now, I’m worried about the long-term potential of things getting worse, and the oral retinoid might help improve all of that.

Before starting on isotretinoin, though, my local derm wanted to make sure that I had no other health issues which would suggest that now’s not the right time to start on the retinoid. So she sent me off to my eye doctor, who checked out my corneas (since I had a bit of cornea erosion back when I was a teenager, and isotretinoin can cause issues there). I also checked in with my therapist to talk about ongoing monitoring, since isotretinoin has been linked to depression and other mental-health problems. And I had my endocrinologist send in my bone-density scans and my last blood work, and I gave some more blood so my dermatologist could monitor my liver function and cholesterol levels.

When she heard I was starting on isotretinoin, my mom panicked. Back when I was a kid, she had heard about some bad side effects from isotretinoin, and so she’s been really concerned about it.

Right now, I’m starting at a dose of 40 mg of isotretinoin per day. I weigh in at 68 kilograms (OMG did I just blog about how much I weigh?), so that dose of isotretinoin works out to roughly 0.6 mg/kg/day of the medicine. Compared to others, this is a really low dose.

The dosages used back when I was a kid were a lot higher. A study published in 1983 cited to someone taking a “fairly high dose” of 3-4 mg/kg/d  — in other words, seven times higher than the dose I’m taking now. In 1982, another study suggested that 2mg/kg/d was an average dose for people with ARCI or epidermolytic ichthyosis.

But the dosages that people are on today — and the dosage I’m starting on myself — are a lot lower than back then. Drs. DiGiovanna, Mauro, Milstone, Schmuth and Toro published a paper this year in “Dermatologic Therapy” which said, “Few require more than 1 mg/kg of isotretinoin of 0.5 mg/kg of acitretin. Many patients find that considerably lower doses make a substantial difference in the way they look, feel, and in the time needed for grooming.” Dermatol Ther. 2013 Jan-Feb;26(1):26-38. doi: 10.1111/j.1529-8019.2012.01527.x.

So yes, I’m starting on a really low dose. But I’m looking forward to seeing what’s in store for me, and will continue to blog unabashedly about my personal medical history here. (Hi, mom!)

Stay tuned for some of my thoughts on pregnancy tests and the pill packaging, and other details!

3 comments to Thoughts on Starting Isotretinoin

  • Chandra

    I was put on Accutane as a kid. If they’ve since realized that much lower doses are what’s needed, then perhaps what I experienced is no longer common. I had a lot of pain in my spine and my depression tanked. At that time, it was known to cause bone spurs but what I didn’t know then is that I have chronic depression and a form of arthritis that no bone in my body is safe from, including vertebrae.

    I usually emotionally recoil in fear when someone says they’re on a retinoid because of my experience. It’s nice to know that things have changed. One thing I would be asking about is are there risks for digestive issues? Retinoids can be really hard on your stomach, so having anti-nausea medication can be very important.

  • Rachel See

    Hi, Chandra. The most important point I’d like to emphasize is my starting dose of 0.6 mg/kg/day is ONE THIRD of the “average” dose reported in the 1982 paper cited above. And it’s only 15% of the high-end dose reported in the other study.

    From the literature, there are indeed reports of isotretinoin (Accutane) causing irritable bowel syndrome, ulcerative colitis and a whole host of other digestive issues. But it’s hard to correlate dosages and how long people have been on the medicine to those reports. There are anecdotal reports of people with ichthyosis who have been on this medicine, long-term, at low doses, with few (or manageable) side effects. There are others who can’t tolerate the side effects.

    Regarding the bone spurs, there’s a fair amount written in the literature about that, and some of the numbers — for the high doses — are alarming.

    But the low doses, used sporadically…It looks a lot more promising.

    My mom had a visceral reaction to my news. She wasn’t aware of the disparity in dosing guidance, and I’d bet that a lot of folks who haven’t looked at this issue for a while are in the same boat.

  • Mom

    I love you, Rachel. I’m so proud of you.

Leave a Reply

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>