Reducing the Time Burden of Care with Acitretin for Epidermolytic Ichthyosis
“To our delight, we found we could maintain the same quality of care in a significantly reduced time period, even at low doses. Our care routine was reduced by 50%.”
In the final post of our 10-Part “Skincare Showcase Series” I want to talk about our journey with ORAL RETINOIDS (Acitretin), a somewhat controversial topic.
Over time the focus of skin care in Epidermolytic Ichthyosis (EI) shifts from preventing and managing wounds in the early months and years, to removing thick skin caused by hyperkeratosis that can limit mobility over time.
By the age of 4 years, when our daughter was starting school, our daily care routine was taking 4-5 hours every day, and it no longer felt sustainable for her, or for the rest of our family.
We realised we had a choice to make:
Reduce skin care and accept the physical and mental health consequences;
Miss out on some hours of school to accommodate the care routine, OR;
Try using medication to reduce the rate of Hyperkeratosis.
Our Dermatologist is thankfully very experienced with retinoids, and felt confident that side-effects would be minimal. We decided to try ACITRETIN which is known to down-regulate keratin production and therefore reduce hyperkeratosis.
To our delight, we found we could maintain the same quality of care in a significantly reduced time period, even at very low doses. Our care routine was reduced by 50%.
Gaining 2-3 hours bck in our lives for play and family time each day felt incredible. I can’t tell you how much it changed our lives for the better.
I know that many people feel uneasy about Oral Retinoids, and the risk of side-effects does increase with increasing dose…
Provided that you keep within the safety guidelines set out in the 2020 Consensus Recommendations for Ichthyosis (<0.5mg/kg), retinoids have been shown to be safe and effective.
It is however, worth noting that studies have shown that treatment with Oral Retinoids tend to be more successful for those affected with KRT10 Epidermolytic Ichthyosis. For those with KRT1 EI, the reduction in thick skin seems to come at heavier cost, with an increase in blistering and skin fragility. For many with KRT1 Epidermolytic Ichthyosis, the cost of more fragile skin OUTWEIGHS the benefits seen in reducing hyperkeratosis, and the right dose to balance out this issue can never be found.
Our Acitretin is made into a SYRUP so that we can easily control the dose to within 0.5mg/ml with a syringe.
Working with an experienced Dermatologist and being trusted to vary the dose as needed yourself is an essential part of using oral retinoids to successfully reduce some of the symptoms of EI without causing excessive fragility.