Hi all,

We have had David [32 months] on acitretin since Oct 07. He takes 5.5mls a day in syrup form.
We have noticed a significant difference to warrant keeping him on it.

Just wanted to find out if any of you have had kids or yourselves start it this young and if any have had particularly bad side effects that we should keep an eye out for?

Thanks,
Lizzie

I've never taken or given my kids any type of steroid, but just from reading around here, it appears that the internal steroids either have one major effect - making the skin too raw - right away, or else they have very long term effects with bone density/osteoporosis issues and an increased likelihood of birth defects. It's been 4 years since I've seen Keith, but I recall that he was on Accutane from age 16ish. He's the same age as me and was in need of hip replacement surgery 4 years ago - I think he was about 30 at that time, and he had stopped using the medicine years before that.

Personally, I would NOT be giving any child that sort of medication because they are still growing and I would be concerned about what effects it would have on permanent bone growth. My husband uses Tazorac, which is topical and on a limited area, but even that we won't use on our 2 and 5 year old. My husband used to take Retin-A as a teen, but it made him too raw, so he stopped it after a short trial.

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Reticular Ichthyosiform Erythroderma with white spots.
Husband, Nathan - 5, Elliot - 2, all affected.
I also have an unaffected daughter and am pregnant, due Oct 12, 2008

Hi there,

My son Dane turned three in December and is still not diagnosed. The ich. specialists are very puzzled by his condition, as he has characteristics of diff. forms of ich, but doesn't fit any one diagnosis. With that said, in our desperation, we did give Acitetin a try over a year ago (I know, many of you may gasp with that one, but as I said, we were desperate). Although his skin improved slightly, he began to complain when I would pick him up from under his arm pits (joint pain). He got a little achy. Another side effect that no one usually mentions is that it dries you out everywhere...including saliva production. Dane wound up with a lot of dental caries, and had 6 extractions...all in the front of his mouth. My husband is an orthodontist, so that was obviously not from poor care. Lack of saliva means less chance for food debris to escape the teeth. We took him off of it and have never gone back. This was just our experience, but I thought it worth noting. I'd just see if he ever complains or whimpers when you pick him up.

Good luck to you. We're all just searching how to best help our little ones. Take care.

-Suzanne

hi people,
just did a quick google, can we get our terminologies correct

Web definitions for steroid
A type of drug used to relieve swelling and inflammation

Web definitions for retinoid - which our acitetin
Vitamin A or a vitamin A-like compound

not sure about the USA, but here in the UK, we are hearing reports of questioning over vitimin supplements in particular vits A and D, that they perhaps can lead to some illness, whatever they be. I'm more a beleiver in taking my vitamins in a natural form

vitamin D = sunshine, fish, cheesse, egg,
vitamin A = butter, cheese, fish, milk, egg yolk, chicken
but get plenty of omegas 3,6 and 9 and plenty of fruit and veg for antioxidents

So with the problems that i have experienced, painfull joints, extreme tiredness and nausia, headaches that last all day etc, i tend to agree, i don't feel 100% and i have been taking acetretin for 15 years at 50mgs daily, in that time the acitretin cleared my skin by maybe as much as 60% in the summer, but i still had ich and now this winter i may have become imune to it, if thats possible, it just hasn't worked.

as i have said in previous postings its all trial and error, some drugs/medication/lotions will work better than others but you can guarantee what works on you may not work on the next person, but i would definately promote the usege of more natural soups and lotions before ingesting any drug. there are side effects as we all read from other postings, the question is acetretin may be working now but where will you be in 15 years, in pain.

yesterday i saw my GP who like me was pleased to see the result on my skin but supprised to know how long hydroxy lotion (lactic acid) has been about in the US, there is nothing in our NHS's arsenal in the UK, well some very small traces but it is not used in the same way as dermal therapy AHa lotion.

now that my skin is cleared up i can use more readily available skin care products as they can now be absorbed into the skin, whereas previously the scaling prevented this and just sat on the surface as a gunk/mess and almost as uncomfortable as the skin condition itself. the dead skin has to be washed away and the AHa lotion will increase the exfoliation of dead skin, try it.

i have some other postings under general discussion, vulgaris and x-linked, suffering at the hands of NHS (UK's national health service) contact me direct petemackean@sky.com
but read everything people, there is so much good help and advice here

best of luck everyone

I have been on Soriatane/Acitretin since I was 17 yrs old. My father would not allow me to start any earlier than that for fear that it would affect my growth plates (he's an orthopod).
Since starting it I have leveled out to 30 mg a day with some variation during season changes. I've been very pleased with the results, however, everyone seems to have different levels of results and side effects.
I also used to cry and whine when someone picked me up under the arms. For me, it wasn't joint pain but skin pain. The problem with the little ones is that they may not be able to identify what is hurting for you... I'd be very careful.

Good Luck!

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Sarah
35 with EHK

Yes, I could see where that could be the case with some. However, Dane had never complained before the medication, and after stopping the acitretin, he didn't complain again. His joint pain due to the medication became overwhelmingly obvious. Also, I'm noticing that as time passes, his skin is getting less fragile and a bit tougher/stronger without medication. He's still very erythrodermic and still has a fine, white scale, but he seems to do be doing better as he ages. I think the infant/toddler stage is definitely the most difficult!!!

im have been on neotigason since i was about 6

i supposedly have a mild form of osteperosis but the doctors at great ormond street hospital london belive that could just be because of some rapid growth spurts i have had this last few years

one of the problems i have encoutered on neotigason is continuous taking over a number of months will lead to my skin become quite fragile at times


Kieran 18, EHK

Hi everyone,

Sorry taking my so long to reply, my wireless connection at home has gone down so I had to wait to be back at work before I could reply.

I'm taking all the comments very seriously and will be discussing with the derms at our next appt [6 weeks time] how we procceed with the level of results but whilst also taking massive precautions on any adverse developments.

They had mentioned that they never had seen any adverse effects in other children that had taken it.
But hey he has ichthyosis so in our book anything else that is rare is possible!

Thanks everyone and will keep you updated.

BTW peter re your reply, I have been thinking for a long time about starting David on Eskimo Oil, supplement for Omega 3 etc. I'll be thinking and investigating it much more now.

Lizzie


[This message has been edited by Lizzie (edited April 29, 2008).]

an update after 4 years
just interested to see how everyone is getting on

i am still using the Alpha Hydroxy Lotion, my skin is good
i stopped taking Acitretin 4-5 years ago now
i still have aches and pains, diagnosed with Fibromyalgia in 2008 (see fmswaws.org for more info) which may have begun after my appendix was removed, the Acitretin may have increased my pain levels but the NHS say nothing of course

Alpha Hydroxy Lotion rocks
i hope people dont suffer with side effects as i beleive i have after taking Acitretin for 25 years
i had a couple of medical personnel be astonished that i had taken it for so long, interestin or not, i don't know

Hi,

I have Lamellar Ichthyosis and started using Acitretin in May of this year (25mgs daily) I've been on it almost 2 months. My neck became clear within 2 weeks and my arms started clearing up a week or 2 later. I also noticed a lot of skin shedding. By June 25th, the skin started coming back and no shedding. It feels as though the medicine has stopped working. Is this normal?