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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.

Retinoids: Introduction and Sorting out the Names

When figuring out how to treat severe ichthyosis, the discussion invariably turns to retinoids. And for a variety of reasons, a lot of the lay literature about retinoids is either outdated, too vague to be useful, or too gingerly stepping around some of the potential bad side effects of retinoids.

So on our blog, we’re going to start to write about retinoids as candidly and fairly as we can.

We know of many people affected with ichthyosis whose skin has improved significantly after taking retinoids.  This can be especially true for people with autosomal recessive congenital ichthyosis (ARCI). A recent study says, “In many patients [with ARCI], marked improvement or remission has been reported as long as the drug is continued, which for many patients has spanned decades.” Digiovanna JJ, et al. Systemic retinoids in the management of ichthyoses and related skin types. Dermatol Ther. 2013 Jan-Feb;26(1):26-38. doi: 10.1111/j.1529-8019.2012.01527.x. But at the same time, we know several people who are active in the ichthyosis community who are very passionate about speaking about their bad experiences with retinoids, and we respect those perspectives, too.

With that out of the way, let’s start by talking about the names of retinoids.

Just like the names of the different types of ichthyosis, people in different parts of the world are using different names for the same medicine. And the presence of name-brand and generic names for the same drug also adds to the confusion.

Retinoids Commonly Used For Ichthyosis Treatment
Generic Name Common Brand Name Other Names Type Earliest Use
acitretin Soriatane Neotigason Oral 1996
etretinate Tegison Oral 1986
isotretinoin Accutane Roaccutane, Amnesteem, Claravis, Isotroin, Isotretinoin-A, Aknenormin, Accure, Ciscutan, Isotrex, Isotrexin, Oratane, Ausret, Ruatine, Acnotin, Atretin, Nimegen, Isotane, Isosupra, Isohexal Oral 1982
isotretinoin Sotret Gel Isotroin Gel Topical
tazarotene Tazorac Zorac, Avage, Fabior Topical 1997
tretinoin Retin-A Renova, Avita, Stieva-A, ReTrieve, Refissa, Retacnyl, Aberela, Airol, Atralin Topical 1965
Other Retinoids
Generic Name Common Brand Name Other Names Type Earliest Use
adapalene Differin Teva, Pimpal, Gallet, Adelene, Adeferin Topical 1996
alitretinoin Panretin Toctino Topical 2008
bexarotene Targeretin Oral 2000

 

In other words, if you hear people talking about taking “acitretin”, “Soriatane” or “Neotigason”, they’re talking about the exact same drug.

Please note, we listed the retinoids in “Other Retinoids” purely to be complete, since those medicines are technically retinoids. We aren’t aware as to whether those medicines are suitable in any way whatsoever for ichthyosis treatment. Also note, etretinate (also known as Tegison) was withdrawn from the U.S. market in 1998, and, as far as we know, is no longer available anywhere. Lastly, we have not included Liarozole in this chart because, by chemical mechanism, it is not a retinoid. (Liarozole is an orphan drug and, as far as we know, is no longer available, either.)

The date in the “Earliest Use” column reflects, in most cases, marketing approvals from the FDA. In some cases, people within the ichthyosis community would have had experience with the retinoid before the date in that column, often as a result of participation in clinical trials.

And as always, if we’ve gotten anything wrong, or missed a retinoid, please let us know.

Finally, a page from our (newly revised) blog stylesheet. We think our audience here is different than the readers of scientific journals, so we are going to try to have increased clarity in our writing. But this increased clarity also makes things more wordy. When writing about retinoids, our first reference to the retinoid in each post will be as follows:

generic name (also known as brand name and other names[LINK TO THIS POST]), a type retinoid.

So in other words, we plan on writing about isotretinoin (also known as Accutane and other names), an oral retinoid.

(And if any of you editorially inclined folks have a better suggestion for how to balance clarity and wordiness, please let us know, too!)

By way of further disclosure (and as an example of the way we’ll apply this style sheet): As a child, Rachel used tretinoin (also known as Retin-A and other names), a topical retinoid. She currently uses the topical retinoid tazarotene (also known as Tazorac and other names), and we occasionally put a dab of tazarotene on Cookie and Monkey. And Rachel intends to start isotretinoin (also known as Accutane and other names), an oral retinoid, once she and her doctors sort out her dosage of other liver-affecting medications.

Addendum 6/25: Added Fabior, the brand name of tazarotene foam.

7 comments to Retinoids: Introduction and Sorting out the Names

  • Pauline Black

    Hi Jennifer, WOW I love that you have detangled all the variations that we know as the ‘Retinoid Family’. Yes, many people get confused about them.

    I first experienced an oral form ( Tretinoin/Retin-A- ACID) as it was called in Australia and for me, an ‘acid’ it was. It was a greenish/yellow gel, and I began using it in around 1975-6. Told to apply at night to arms and legs. I would wake up in the morning and I had scratched the whole layer of scale off my forearms and from my calves, (blood raw) left crippled up from the limbs tightening as they healed.

    Then during 1978 I was put on a considered a ‘miraculous breakthrough’ skin treatment ‘Etretinate’, or TIGASON as it was called in Australia. Released much earlier than 1986 some 8 years earlier. Keith Charsha told me he was trialed on it around the same time as myself. Oh, yeah, you did mention if it was used earlier it would have been a trial. Sorry!! I was a ‘guinea pig’ at that stage. Anyway it had more horrendous results, the same ripping open during sleep as oral Retin-A-Acid cream/ointment. (it came in cream and ointment form). I could not feed myself, wear clothing or walk. I stayed on it ironically, until around 1986 (when officially released, according to your records), as my husband pleaded with me to give up hoping for my body to adjust to it. He could no longer stand to see what shape i was gonna wake up in each day.

    During the late 90s early 2000s, I was put on Accutane (Isotretinoin) and I can’t really remember the skin effects, except I think very sticky skin, which had a strange odor to it. The only thing that was very evident, was a very deep depression, and one suicide attempt. My psychiatrist implored me to stop it at once, which I did. The severe psychological all dissipated once taken off Accutane.

    During 2006, I was trialed on NeoTigason (Etretinate). Thankfully it didn’t cause anywhere near as much rawness as the original Tigason nor the psychological impact of Accutane.

    However, I am still to this day, having to juggle my doses. I cannot tolerate anything more than 25mg per day, as my skin gets paper thin, ripping with the slightest knock, and bleeding profusely from scratching, as veins are right at the surface. The high dose also lifts all callous from hands and feet preventing me from being able to walk or use my hands as usual.

    The worst part of Neotigason (Acitretin) is the hair loss. After almost losing ti all 4 years ago, my hair is still short, and very hard to grow back.

    I am happiest now, complimenting a lower dose, mostly 20mg per day, and alternating between 4% and 10% lactic acid topical cream.

    Regards Pauline

  • Rachel See

    Hi, Pauline. As we say in the chart, Neotigason is the same as acitretin. It is different from etretinate (which is also called Tegison). So I think you’re saying that in 2006 you participated in the trials of acitretin/Neotigason/Soriatane (and not etretinate).

    Certainly, your experience with retinoids — along with that of Keith Charsha — are the ones I was thinking about when I wrote about how some in the community are “very passionate about speaking about their bad experiences with retinoids”.

    We intend to write extensively about the side effects of retinoids.

    But I think an important takeaway from people reading your comment here, is that despite all the problems you had with retinoids in the past, you have reached a personal decision that for your situation and your skin, you still want to use acitretin — at a low dose, and not as frequently as before.

    I think another important takeaway — and there’s not enough information anywhere to really understand this, since it hasn’t been well-documented — is that for the oral retinoids being used today, the doctors are prescribing lower dosages than before.

    I thought (but cannot find any documentation) that the dosages in the clinical trials were much higher than what we now regard the “standard” dosages to be.

  • Pauline Black

    Yes, Rachel, it was actually a typo on my part, as acitretin, and etretinate can sound similar. I did know it was Acitretin, just a bloop on my part sorry.

    On a ‘Positive’ note, I do know many who have wonderful success on these drugs. And again I think ‘you are spot on’ about the higher doses used on Trials. My Derm back in the 1970s was trying to increase it higher than 25mg per day, and this was catastrophic for me.

    This week my skin is FANTASTIC, so smooth and pink, and funnily enough I have further lowered the dose from 25mg and 20mg on alternate days, to just 20mg every day, when i used to have 25mg every day. The trade off is that I can walk much better, much less skin peeling, but thicker palms. At least when my palms are thick I can use my hands more, even though they are stiffer and harder.

    Do you know if the lower doses keep the scales away, or will it eventually build up again? I tend to go up and down according to my skin behaviour.

    Thanks again Rachel and Jennifer, this is a very important topic for users.

  • Lucy

    I was quit shocked to have come across this site and comments about retinoids.

    I have Dariers Disease and my family has been in research since the ichthyosis research foundation started. My mother and brother used to go to NIH for study of accutane and Tegison.

    I took accutane when I was younger and it kept my skin completely clear w/o flare- up periods. As I got older the accutane didn’t work as well so I switched to tigason. Tigason was a miracle drug for me and many other DD sufferers. Since tigason was replaced by soriatane I was forced to take soriatane. Soriatane does not have the same benefits as tigason thus causing frequent relapses in the disease. It also causes severe hairloss unlike tigason did for me.

    I have been able to tolerate all retinoids very well. I do have depression but notice it is when I’m going thru a flare. Who the heck wouldn’t be depressed having a severe case of DD or any form of ichthyosis? It is hard dealing with the constant itch, pain, and worrying when going thru a flare not to mention the disfigurement.

    I’ve been on retinoids since accutane was released in 1980 and hope that those with a bad experience with retinoids don’t send a bad message so that the drugs are removed. Retinoids are the only treatment for DD and other forms of ichthyosis.

  • Rachel See

    Hi, Lucy. Thanks for sharing your comments — I think you added a really valuable perspective there.

    Sorry you were shocked by what you read! I don’t think anyone is suggesting that any drugs should be removed from the market.

    In discussions online about retinoids and ichthyosis, there are a few people who have been very vocal about their own bad experiences with retinoids. And our impression is that in the (lay) literature that’s out there right now, it’s hard to get a complete picture regarding what’s going on. So that’s part of what we’re trying to help by our writing on our blog.

    We will be writing more about the research that is out there. And we are certainly aware of many people with ichthyosis who have had great results (and no bad side effects) from retinoids. So I think people thinking about this issue need to understand what’s going on in order to weigh the risks and benefits for themselves.

  • Lucy

    Hi Rachell,

    Do you know if Tigason (Etretinate) is available in Mexico? I do believe it is available in Japan
    and Australia; however, those two countries are quite a big distance from the states unlike Mexico.

    Thank you

  • Sarah

    Hello,
    I was part of a clinical trial in another country so I started taking Soriatane in 1989. I’m still taking it today.

    With constant monitoring and watching for any and all side effects I’m happy to report that I dodged most of them. About a decade into my use my doctor decided that I knew enough to prescribe the levels myself so I am able to take my dose up and down with the seasons (climate and skin wise).

    I realize that there are severe side effects for some and that is why starting a retinoid has to be carefully monitored. For those of us that it works, it is life changing – literally.

    Thanks for writing about this and let me know if there are any questions I can answer!

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