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#19860 - 03/09/01 09:22 PM Removing Scaling
tfern1 Offline
Member

Registered: 03/09/01
Posts: 6
Loc: Reno, NV, USA
I've acquired Ichthyosis for some reason. I did not really that I had it until I moved from a tropical area to a dry area (Nevada). I've had it for quite sometime. I'm currently using Eucerin Plus and PDS hoping that this would help remove the built-up scaling on my legs and back. However, it does not seem like they are clearing. I had just bought a pumice stone to help scrub of the scaling but not sure if this is a good thing to try. I've read also that spending some time in a steam room would help exfoliate your skin. Need some of your thoughts and suggestions. Thanks!

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#19861 - 03/09/01 10:07 PM Re: Removing Scaling
Fodus Offline
Junior Member

Registered: 03/09/01
Posts: 2
Dry climates are just about the worst regions for Ichthyosis people. From everything that I've heard, you didn't "acquire" ichthyosis. You were born with it and it may just be showing itself now. I live in New England where the winters last about 5 months out of the year and the air is very dry.

Reducing scaling all depends on what kind of Ich you have. Do you know?

I have a few suggestions, but only for the vulgaris variety ichthyosis.

Let me know.

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#19862 - 03/14/01 08:43 AM Re: Removing Scaling
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Well, FWIW, it is possible to "acquire" ichthyosis later in life, though that's pretty rare (as though ichthyosis itself weren't rare enough!). As far as I know, acquired ichthyosis is usually associated with certain types of cancer and AIDS.

My guess would be the same as Fodus though--it's possible that you've had a mild form of ichthyosis all your life and just not noticed until you went from a very favorable climate (tropical) as far as ichthyosis goes to a very hard climate (dry).

If PDS isn't making any difference at all in the scaling, hmmmm, that surprises me. Are there any dermatologists near you that you could see, to confirm the ichthyosis diagnosis? Any chance it could be something else?

L

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#19863 - 03/15/01 06:28 AM Re: Removing Scaling
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Tfern thank you for posting what it is like living in a cold climate like Reno. When I go there in the winter for my luck at the tables, I have to pack the lachydrin.What type of ichthyosis do you have?On the west coast, we have two great research hospitols in Stanford and Univ. of California San Francisco.They can do a skin biopsy and blood test to determine the best medical avenue to go.They might even give you a recomendation of a good dermotologist in your area.There are good acid creams like Aqua glycollic, Amlactin, Eucerin Plus, or you could have your dermotologist prescribe something.I have spoken to so many people who have moved from warm and humid climates to one like yours and experienced the same reactions.Good luck to you Tfern.
_________________________
Les Avakian

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#19864 - 03/17/01 12:04 AM Re: Removing Scaling
tfern1 Offline
Member

Registered: 03/09/01
Posts: 6
Loc: Reno, NV, USA
I was diagnosed with Ichtyosis by a doctor at the University of Nevada, Reno Medical Center approximtely 10 years ago but did not say which type. I can't remember if the doctor was a GP, FP, or IM, I can't really remember. But I do have an appointment with a dermatologist on April 12th concerning it. Unfortunately that is the earliest he can give me but I have heard great things about him. His name is Dr. Gardner. I'll let you all know what he finds. As far as my use of PDS, there is a part on my lower back that seem to have real dark skin but recently seem to have not been as dark. I really appreciate your comments, suggestions, and support. It is so great to have a support group like this to keep you hoping and believing that there are things that will alleviate the symptons and effects of this rare skin disorder. Thanks everyone.
Quote:
Originally posted by Les Avakian:
Hello Tfern thank you for posting what it is like living in a cold climate like Reno. When I go there in the winter for my luck at the tables, I have to pack the lachydrin.What type of ichthyosis do you have?On the west coast, we have two great research hospitols in Stanford and Univ. of California San Francisco.They can do a skin biopsy and blood test to determine the best medical avenue to go.They might even give you a recomendation of a good dermotologist in your area.There are good acid creams like Aqua glycollic, Amlactin, Eucerin Plus, or you could have your dermotologist prescribe something.I have spoken to so many people who have moved from warm and humid climates to one like yours and experienced the same reactions.Good luck to you Tfern.


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#19865 - 05/10/01 11:18 PM Re: Removing Scaling
tfern1 Offline
Member

Registered: 03/09/01
Posts: 6
Loc: Reno, NV, USA
Just got from the dermatologist this afternoon. According to my dermatologist, I have X-linked Ichthyosis. Received a prescription for LacHydrin. Will see how this goes.

Quote:
Originally posted by Les Avakian:
Hello Tfern thank you for posting what it is like living in a cold climate like Reno. When I go there in the winter for my luck at the tables, I have to pack the lachydrin.What type of ichthyosis do you have?On the west coast, we have two great research hospitols in Stanford and Univ. of California San Francisco.They can do a skin biopsy and blood test to determine the best medical avenue to go.They might even give you a recomendation of a good dermotologist in your area.There are good acid creams like Aqua glycollic, Amlactin, Eucerin Plus, or you could have your dermotologist prescribe something.I have spoken to so many people who have moved from warm and humid climates to one like yours and experienced the same reactions.Good luck to you Tfern.


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#19866 - 05/11/01 02:27 AM Re: Removing Scaling
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Good evening Tfern,so happy you posted what your doctor prescribed and also he diagnosed what type of ichthyosis you have.So far I have been so happy with my lachydrin, I hope you have the same results .Please tell us how you feel about Lachydrin and its effects. Bye for now Tfern.
_________________________
Les Avakian

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#19867 - 06/07/01 01:03 AM Re: Removing Scaling
tfern1 Offline
Member

Registered: 03/09/01
Posts: 6
Loc: Reno, NV, USA
Les,

How long does it take to see the effects of using lachydrin as far as scaling? I know, it has only been 3 weeks as far as constant use of this product. Maybe I am not noticing it because I see myself everyday. But anyway, I'll be seeing my dermatologist again next week. Although I have heard great things about this dermatologist, he never really gave me a skin test or biopsy. He merely looked at it and diagnosed it as X-linked.

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#19868 - 06/07/01 10:16 PM Re: Removing Scaling
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Tfern1 I am happy you have found a doctor in your area who can help you.I have used Lachydrin 12% lactic acid since 1983 when it was prescribed for my X linked. I immediately noticed a change because it help to exfoliate my leg scales and helped with itching.As for the testing for X linked it is very easy. When I was at the ichthyosis national conference in Philadelphia, the Ichthyosis Registry drew blood samples.They sent me the results in a few months and here is what it said. A normal person`s cholesterol sulphate level is 80-300 ug/dl. An x-linked person has a level of 2000-9000 ug/gl. My level of cholesterol sulphate is 5276 ug/dl.Tfern the National Registry telephone number is 1-800-595-1265 or email at info@skinregistry.org.Also you can have your doctor send a sample up to the registry and they can test it. In X linked people, we lack the steroid sulphatase enzyme, and somehow this correlates with an elevated cholesterol sulphate level.On research tests at Stanford, I have read where the doctors applied cholesterol sulphate to lab mice, and they began to scale.Someday, through gene cell therapy, doctors will be able to give X linked people the steroid sulphatase enzyme. I hope this helps Tfern, take care and by for now. Your X linked friend, Les
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Les Avakian

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#19869 - 06/03/05 09:45 PM Re: Removing Scaling
richard 007 Offline
Member

Registered: 05/14/05
Posts: 21
Loc: UK
Hi Les,

Its been nearly 4 yrs since you last posted but how long do you think this sulphatase enzyme is available to Xl sufferers? I would do anything to get rid of my scales, my skin has damaged my confidence so much! Thanks

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