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#15608 - 04/14/02 11:48 AM Lamellar - creams/lotions?
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Hi there!

I always knew that I had Ichthyosis but recently doctors tried to figure out which type it is exactly. It seems to be LI though that is not yet confirmed.
For more than ten years I am on soriatane which worked great but I think it is time to stop. I decided to reduce the dose slowly, meanwhile searching for good local treatments. Now I am using a lotion with 4% Urea and a pumice about 2-3 times a week. All in all the results are good. But now I have to find better lotions. Can you recommend anything? I hear about amlactin and lachydrin, but I also read that it stings quite a bit. Also, both of them are not available in Switzerland and the one place I found that ships internationally charges you $35(!) for shipping. I would enjoy hearing from other LI-sufferers, about what they do and the lotions they use.

All tips are appreciated.

Best wishes, Sofie

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#15609 - 04/14/02 08:02 PM Re: Lamellar - creams/lotions?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Hi Sofie,

I understand your wish to stop using the prescription drugs and the hesitancy to use Amlactin and Lachydrin.

I stopped taking the drug therapies as I suffered quite a range of side effects first on Accutane, then later on Methotrexate. When I used Lachydrin and then Amlactin, both were quite painful and burned my skin.

My solution is to bathe and shower twice a day with a shower in the morning so I can wash my hair, a bath at night. If the weather is very hot or very cold, sometimes I'll take an extra bath or shower.

I use two tablespoons of an oil mixture in the bath water, or I apply the mixture after I turn the water off in the shower. The mixture is my preference of vegetable or nut oil (almond oil is my favorite, but canola oil is much more economical) in a 16 oz. bottle with 4 drops of a favorite scent (jasmine, chamomile, ylang ylang, violets).

After I'm out of the bath/shower I apply generic petroleum jelly. I'm working on coming up with a more natural ointment, but so far have not had success. I've ruled out using beeswax as a base and now determined the cocoa butter might work better.

That's my routine in a nutshell. I probably invest a little more time in my skin care routine than others but I don't mind it too much.

You might want to check out the alternate remedy section of the bulletin board. Some folks have found some dietary supplements that seem to help an awful lot. I do know from personal experience that what I eat makes a huge difference in the health of my skin. Caffeine really tends to dry me out and I need a high protein intake, plus my immune system stays healthier if I eat a lot of fruit and vegetables, especially vegetables with a lot of iron. While it is somewhat appealing to just take a vitamin and then eat whatever I want, the vitamin doesn't do as much good for my skin and health as watching my diet does.

Take care Sofie! Let us know what works for you.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15610 - 07/08/02 08:42 PM Re: Lamellar - creams/lotions?
kevin246 Offline
Member

Registered: 05/31/01
Posts: 20
Loc: Tennessee (USA)
Like the rest of the members on this site, I have tried almost every form of treatment or therapy from it's developmental stages to it's "finished" state. Currently, I shower once a day and I use Fragrance free Lubriderm lotion.

Three times a week, I use Clinique mild scruffing soap to control the excess scaling.

As far as all of the "wonderful" topical therapies available now, I like to keep it simple. Good Luck!

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#15611 - 03/16/03 04:17 AM Re: Lamellar - creams/lotions?
Lyndsey Offline
Junior Member

Registered: 03/15/03
Posts: 3
Loc: England
hi there, i have recently been given creams by my doctor called Unguentum, and also Doublebase, these can be used as often as you like, the best thing is they keep my skin softer for longer than anything i've used before.

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#15612 - 03/17/03 04:14 PM Re: Lamellar - creams/lotions?
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
this may sound funny, but for people that use oil, like i do for my boys...if you have heard of pampered chef, they have an oil spritz bottle, you can pump it up with air and it sprays it lightly across the skin like an aresol...I do not sell this product and you can put any oil in it. I am sure theres web info... I like using it because my little ones think its fun...

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