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#28706 - 11/24/12 01:33 PM Acitretin
carmen carmen Offline

Registered: 11/24/12
Posts: 8
Has anyone tried Acitretin?? My 12 year old son has Lamellar Ichthyosis and the doctors has put him on this med. I am worried that it might stop his growth. Can anyone tell me more about this med.

#28708 - 11/25/12 01:19 PM Re: Acitretin [Re: carmen carmen]
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
If you do a search, there is a LOT of information about it. In short, there's a lot of controversy about using it in children because of the side effects. It can cause liver problems. One of the other types, Accutane (isotretinoin) is known to cause bone density problems. They all cause birth defects and have a several-year period between when you stop taking it and when it gets out of your system. For women, you can't get pregnant while on it or for 2-3 years after you stop taking it.

Here's a link with info about it:
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.

email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

#30831 - 09/28/20 03:59 PM Re: Acitretin [Re: carmen carmen]
peter mackean Offline

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
Wow you posted on here a long time ago and looks like you never received any reply, i trust you are still around or have found answers else where

i began using Acitretin or Neotigerson in my 20s, and did use for over 20 years, and on one of my visits to a clinic, a nurse was flabbergasted that i had taken this med for more than five years, that seems to be a norm she said, perhaps hind sight to pregnant women, but i can be sure that after all those years it probably stopped working for me at least

there are many reports leading towards some issues, as you describe, leaving gaps while pregnant etc, bone density and in particular liver which would be monitored

all the time in which i was prescribed, i would have to have blood tests which monitor and manage any possible side effects, for 99% i was always clear

but i'm now 55 and suffer with some chronic pain issues, namely Fibromyalgia but in the same breath i cannot be 100% sure that it was the Acitretin that did it or contributed to it, hard to be sure, but i did get a very tiny awareness that i did have a bone density issue, but it is so tiny it really is nothing to be concerned with, i mean below 2%

i can say hand on heart that is is worth continuing treatment as i know different Ichthyosis types can benefit better than my own IV, the rule to remember is we are all different and meds will work better on some individuals than others

i got to a point where i could not work well, and even now tire if i overdo things, i ache all the time, so i suggest try and see, if not get away from meds and look towards other treatments, all meds carry some side effect or another, i don't know what effects using Alpha Hydroxy Lotion from Dermal Therapy has on Lamellar Ichthyosis, but it certainly has no effect on me apart from positive in keeping my skin hydrated

i have posted another story here regarding my findings

hope that helps

Edited by peter mackean (09/28/20 04:03 PM)
pete mackean


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