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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.

Daily Life With Ichthyosis: Rachel’s Cream Routine

One of my first blog entries here was about my own daily routine. I’ve also written about Glad Cling Wrap and why I always, always, always take a shower in the morning.

But one really important facet of daily life with ichthyosis that I haven’t mentioned are the kinds of cream I use.

My “everyday” creams are Jergens Ultra Healing lotion (the one with the yellow-orange stripe) and Eucerin Dry Skin Therapy.

Jergens is my “everyday carry” lotion. Ideally, I am never out of reach of a bottle of this lotion. I have a large bottle in my desk at work, and I carry a 10 oz bottle in my large purse / laptop bag. There’s a bottle in my car. There’s a bottle in almost every bathroom at home, as well as on my home office desk, in the kitchen, and by my bedside table. In the winter, I sometimes even carry a separate bottle in my coat pocket.

After my morning shower, I apply a layer of Jergens on my hands, feet and face. A layer of Eucerin goes everywhere else. I used to use the Jergens all over, but the Eucerin provides an adequate layer everywhere except the hands and feet. And because of the Beiersdorf Aquaphor program, using the Eucerin lotion that way is a little more economical.

Upon arriving at work, after responding to the first round of morning emails, I will usually put a giant glob of Jergens in my hands and spend about five minutes rubbing it in while reading news articles or other things on my computer monitor. (I put a paper towel near my mouse so I can switch articles without sliming up the mouse, or so I can grab the phone receiver in the event of a poorly timed incoming phone call.) Days with morning meetings which prevent this routine are days during which I get cranky and uncomfortable!

The additional cream comes out throughout the day, as necessary – at least once during the afternoon, sometimes more frequently. Whenever I need to wash my hands, I really need to do the routine twice – once immediately afterwards, and a second layer of cream about an hour later, although sometimes things get too busy to apply the second layer (and then I notice how uncomfortable I am a few hours later and by then it’s too late).

In the winter months, during the day, I’ll also occasionally pull off my shoe  at my desk and will rub in a layer of cream onto the soles of my feet.

I remember that I was once self-conscious about creaming my hands in front of people. It’s not a factor anymore.

I’ve been using the same kind of lotion (Jergens), religiously for about 25 years now. There are almost certainly better ones out there, but at some point, I am too much of a creature of habit to change my routine too much. Some of the creams and lotions which are unquestionably “better” for my skin are also at a much higher price point, or have a consistency that just doesn’t feel “right” for me. So for instance, good old Aquaphor Healing Lotion, while great for creating a nice barrier, also makes me feel like I’m leaving a trail of slime on everything I touch.

It’s interesting comparing creams and lotions with other people who have ichthyosis. We have one friend who swears by Lubriderm’s shea butter flavor. Others can’t stand it or say it does nothing for them.

Every now and then, a relative or friend will hand me a tiny tube of something-or-other to try. For about a third of ’em, I try a dab and come to the conclusion within about 15 seconds that it’s crap. For maybe another third, I rub it in, and some alcohol or fragrance in the concoction makes its way into an open crack on my hands, causing instant pain. And for that last third, it might be something I like. So far, I haven’t found something at a price point that’s palatable for regular, high-volume use, or with significant enough marginal additional benefits to overcome the inertia I’ve built up from using the same product for 25 years now.

So…what creams, lotions and other gunk do y’all use? In the comments, if you name any particular products, please identify the specific type of icthyosis you have, if you know.

12 comments to Daily Life With Ichthyosis: Rachel’s Cream Routine

  • Leandra

    Thanks for raising this topic and for sharing regimens. Our 7-year-old is believed to have a “mild version” of CIE. Our mainstay is Dermal Therapy Alpha-Hydroxy (10% urea/10% lactic acid — ordered from Canada) occluded with Aquaphor Healing. We apply these every night immediately after bath while her skin is still wet and then cover her body in Carter’s microfleece footed pajamas for the night. We lightly wipe down her hands so she can get around the rest of the night without worry of “sliming” everything she touches. She often has a night-time snack because of all the calories lost to ichthyosis while she sits on a furniture-protective towel on the couch (Aquaphor makes the jammies somewhat greasy even on the outside…we launder these inside-out soaking in a generous amount of Dawn dishwashing liquid/hot water before letting washing machine do its thing). When it’s actually time to go to bed, we wipe down any residual “slime” from her face/neck/ears/hands. In the morning we spray her with a water spritzer bottle of warm water in a room where a space heater keeps her warm enough for getting wet without drying her skin out too much (she becomes too cold otherwise). We try to let the water absorb into her skin for a few minutes and then apply the Dermal Therapy Alpha-Hydroxy all over followed by the Aquaphor Healing. Again, we cover her back into her same microfleece pajamas that she slept in and wipe down her hands so she can eat breakfast and brush her teeth. Then we remove the jammies, wipe down her face/neck/ears and put on clothes for the day. This routine usually lasts our particular child’s supposed “mild version” of CIE without the need to reapply lotion in the middle of the day. After about three days or so, however, the build-up of skin becomes too great for adequate bath exfoliation, so we need a good peel in order to resume the usual routine. We find that our child gets this good twice-a-week peel if after bath we add Dermal Therapy HEEL CREAM (25% urea) after the usual application of Dermal Therapy Alpha-Hydroxy. This stuff is pricey at $40 for 16oz, but it is critical for us, and it lasts us a good while. We add the Heel Cream all over her body except under her arms which are too sensitive for this concentration of urea (when it was applied under arms, her armpits became red and painful after a few hours). She doesn’t seem to be sensitive anywhere else on her body. Then we occlude as usual with the Aquaphor Healing. The next day our child is often more itchy than usual because of the peel that the higher concentration of urea promotes…a morning bath to exfoliate the new peel/provide mild itch relief would be ideal but is rarely practical for us. The next bath usually yields a very good peel which lasts for about 3-4 days before the Heel Cream is needed again. We never use the Heel Cream sooner than that because it doesn’t work for us if we don’t wait the 3-4 days. We have, however, had good results using the Heel Care only on the face/neck/ears every other day or so if she is especially dry on the face.

    In the beginning we were able to use Amlactin for a year of so with the Aquaphor Healing, but her skin started to become leathery-looking and more itchy. For us, we find the urea is excellent at holding the water next to the skin’s surface, providing a more supple look/feel and less itching. With the Amlactin/Lac-Hydrin we also found that it stopped working altogether, even when returning to it over a year later. We have also had some intermittent luck with Salex 6% (prescription only), but it has only worked if used once every several months for a good peel. I don’t believe Salex is to be used on the face, however. Would enjoy reading what others use and have tried!

  • Leandra

    Scalp treatments are different…maybe for a future discussion?

  • Jennifer

    We will definitely hit the scalp routines later on. There’s so much to talk about!

    It’s really amazing how different the routines are for different varieties of ichthyosis are. We were putting 40% urea on under cling wrap overnight and it didn’t do anything at all for our type.

  • Tonya

    Thanks so much for this post as I’m curious what others with ichthyosis use for lubrication. It’s true that what works for one might now work for another. Since birth, I’ve always use vaseline. Plain, in-the-jar Vaseline. While it is greasy, I find it’s the only thing that works for me. Other lotions tend soak up quickly and leave my skin taught. My mom used to use Aquafor when it came in the jar like Vaseline. But, this was years ago when it cost the same as a jar of Vaseline. My skin also tends to get drier as the seasons change. The change from fall to winter causes my skin to be drier than normal, but I haven’t found a remedy to help with it.

  • Rachel

    Thanks, Tonya, for chiming in. Aquaphor “in the jar” is still available — you just need to ask for it by name — it’s the “original” Aquaphor which is available through most pharmacies, or directly from Beiersdorf (see our post about “free Aquaphor for people with ichthyosis” — there’s a link in the top bar).

    I have definitely been noticing a change now that the weather is getting colder. My feet and hands are drying out a lot faster, and my scalp is itching a lot more than it did a few weeks ago. Yup, it’s winter time.

  • Anonymous

    I use Hylatopic cream for the burning and it has been the best It is a prescript from the Derm but is 25.oo for a fair amount.. I don’t get a lot of itching as they have me on a very high doose of antihistamine but it is very drying to the body If I get a bad spotthat wont heal I use Clobetasol Steroid ointment that usually clears me up.. For descale I use the Lactic Acid type of lotion or Retin a if it comepletely wont go away then I have had to get Prednisone form the doc to get me cleared up I have Dariers disease

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  • Molly

    I have never met anyone else with ichthyosis, so when I found this website it was like I finally landed on the Island of Misfit Toys! Other people I know have “dry skin” but we all know ichthyosis goes WAY beyond that. I’m most ashamed of my hands; they were never soft and pretty, and they never will be. I don’t own any rings and rarely paint my nails because I don’t like attention drawn to them.
    My winter skin routine is as such: Aveeno immediately after a shower. Not the generic, either, it has to be the real expensive deal. Then every other day I top that with petroleum jelly from Dollar Tree.
    Recently I started using Amlactin, the kind that has the acid in it to exfoliate. It’s wonderful! I’ve been able to skip the petroleum jelly totally. But it costs a fortune for a small amount. I usually have a humidifier running during the winter, and that helps my skin, hair, sinuses, and the plants enjoy it too.
    Summers, as we all know, are easy. Any lotion will usually do the job, and it can sometimes only be applied every other day.
    I am jealous of people who don’t have this condition. Some days I feel like a slave to my skin. I can never “just hop in the shower real quick.” It always is a process. I have to make sure I have a bottle of good moisturizer with me everywhere I go. If I am somewhere where I have to shower and don’t have any lotion then I am in excruciating pain all over my body until I can get home and do it right. I have dropped enough money to support a small country trying to find products who actually deliver what they promise. I roll my eyes every time I see a commercial on TV for someone with “dry itchy skin.” “Aw that’s cute,” I think to myself, “they have dry skin.”

  • gia

    been asked WAY TOO MANY times why my hands and feet are the way they are. -_- never really associated them with my VERY VERY dry skin, until recently when i started googling. 22 years old and i still can’t find the best moisturizer that can eliminate the shiny bling bling of my legs -_- did you guys ever find a helpful lotion/cream for this? will greatly appreciate it 🙂

  • L

    Living through Canada’s horribly cold, dry winters has forced me to develop some innovative (aka strange but mighty) skin care solutions. I am also a cyclist, and the wind on my face leaves it shockingly dry. Everyday from childhood on, regardless of the season, I wake up with peeling skin over my entire face, scaled skin on my legs and often arms as well, and cracked callouses on my feet. Solutions?

    FACE: use no facewash. Use only lukewarm water. Remove eye-makeup with cold-pressed virgin coconut oil (your lashes will grow superbly!), use tiny dabs of L’Occitaine en Procence’s 5 essential oil shampoo for dry hair to wash away the coconut oil. Rinse well, pat skin until 2/3 dry. Use a nickel to a quarter size dollop of dark brown sugar (yep, the stuff you bake with) and gently scrub away all the dead skin. The remaining moisture on your face will slowly dissolve the sugar until it goes from a coarse face scrub to a super fine buff. It’s also antibacterial which means it kills any blemishes and prevents infections. Rinse off, buff off any remaining dead skin with a cotton pad, using circular motions. Immediately apply jojoba oil to face and lips (but not eyes if you wear eye makeup), then a layer of Udderly Smooth (lanolin cream that keeps water in the skin layer while opening pores slightly to prevent heat rash from the straight oils), then seal with a layer of mustard oil. Mustard oil is insanely moisturizing, and leaves a soft velvet finish which foundation will happily sit atop. It is also great as a scalp treatment: leave on overnight and wash out well.

    LEGS: Here’s where things get weird. Go to a hardware store and buy a sheet of 800 grit sandpaper designed to be used with water. Tear into strips you can wrap around your palms. Apply mustard or coconut oil to your legs or wherever the skin in scaling. During a lukewarm bath or shower, with lots of water, gently rub sandpaper over skin in circular motions until it feels soft and smooth. Go easy to avoid giving yourself a rash and apply more mustard oil topped with whatever lotion you prefer after the shower. This also works spectacularly for fingertips that crack.

    Lastly, FEET:
    Weird again, but it works to prevent the keratinoid buildup that leads to cracking. Grab a dulled shaving razor you’d normally be ready to throw out. Soak feet in warm water or do this at the end of your shower. Apply some oils as emollients if desired. Under running water or underwater pass the pass the razor over callouses many many times until the hardened skin is shaved away. Clean the razor a few times in this process. Pat foot until damp. Moisturize like crazy (following the same jojoba–>lanolin–>mustard oil regimen as the face is recommended.). Saran wrap for a while if you need to deeply moisturize.

    Full disclosure: mustard oil is used all over my entire body religiously after stepping out of the shower. I can’t recommend it highly enough. I carry a container with 3/4 mustard oil to 1/4 jojoba oil with me everywhere I go. Eucerin and comparable products have nothing on this stuff! And it’s dirt cheap–in Toronto you can buy a litre of mustard oil for $8 in Indian grocery stores. Trader Joe’s has very well priced jojoba oil. The routines I’ve mentioned above have worked better than any prescribed emollients or retinoids and are a hell of a cheaper and long lasting than the usual barrage of cleansers and creams.

    Hope this was helpful!

  • Suo

    For hands try a small dab of pure ultra white petroleum jelly by Covidien- its online dirt cheap. Once rubbed in put a dab of Eucerin original healing rich lotion. Must be labeled rich. Rub that in and your hands will last a long time.

    Face- I use emu oil than jojoba oil than Skin Food by Weleda. Let soak in than apply dermal therapy for sensitive skin minimally-a bottle lasts forever. (Not the dermal therapy face stuff at least for me its too strong) look for sensitive skin lotion. Than I apply a mix of: kiss my face moisturizer olive & aloe and Cerave. I wash with cetaphyl and use the Clarisonic. It helps get old lotion out and ready for the new. Also, I will use Neostrata glycolic foaming wash intermittently since I am unable to use AHA. Always wash hands very well with cetaphyl before applying anything. My face has super sensitive skin- it doesn’t take much to set it off especially make sure amlactin is off the hands and no where near the face. It is too harsh for mine anyway.

    On the body I use amlactin. If your near Ohio, stock up at drug mart. They have it priced very well. I also use Dermal therapy extra strength body lotion on my neck and chest, arms and feet/legs. Helps keep all looking really smooth.

    Lips need lots of moisturizing also.

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