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#16184 - 12/27/06 09:16 AM icthyosis
trish5 Offline
Member

Registered: 12/27/06
Posts: 5
Loc: sherwood park AB
Hi, i havnt been on since 1999,have found soriataine, miracle drug for me and my family.FIRST has changed alot since then.Have had Icthy since i was born as well as my son and mother.We have been soriataine since 1999 with great results, almost forgot that i had it.Would love to talk to anyone who can relate or remembers me from then.Im not totally cured ,but life is sooo much better now,i can hardly remember how i ever endured it before. Hope to hear from anyone thanks,trish

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#16185 - 01/12/07 09:44 PM Re: icthyosis
kaiello10384 Offline
Member

Registered: 01/10/07
Posts: 37
Loc: elcajon ca usa
what did you take ? my son also has it and i am looking for some thing to help him
kristina and jeffrey

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#16186 - 02/05/07 05:03 AM Re: icthyosis
trish5 Offline
Member

Registered: 12/27/06
Posts: 5
Loc: sherwood park AB
We have been taking 25mg's of Soriatane for the last 6 years.After 11 days there was a noticable difference and 3 months it was relatively gone.Amazing to actually see veins in our hands and have soft touchable skin.It has to be the best thing that ever happened to us,a real miracle! I cant believe how it has changed our lives.There are a few side effects,most of them pass, the worst that seems to hang on is dry lips, which i use vaseline on, and doesnt bother me at all anymore.Please feel free to ask me any questions, would love to help.Trish
Quote:
Originally posted by kaiello10384:
what did you take ? my son also has it and i am looking for some thing to help him
kristina and jeffrey

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#16187 - 04/05/07 05:52 PM Re: icthyosis
Danielle Offline
Junior Member

Registered: 04/05/07
Posts: 1
Loc: Doncaster,Yorkshire,England
Hi, i'm sorry that this isn't the right place to post but unfortunatly i can't see where to start a new topic.

I was wondering if it needs to be both parents for a child to have ichthyosis, or does there need to just be one parent?

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An eye for an eye leaves the whole world blind.
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An eye for an eye leaves the whole world blind.

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#16188 - 04/14/07 11:07 PM Re: icthyosis
R Offline
Member

Registered: 02/20/03
Posts: 226
Why don't they prescribe these drugs to people with lesser forms of Ichthyosis like X-link or vulgaris?

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#16189 - 07/11/07 05:01 AM Re: icthyosis
trish5 Offline
Member

Registered: 12/27/06
Posts: 5
Loc: sherwood park AB
Jusr one can have it.Chances of both are pretty slim.
Quote:
Originally posted by Danielle:
Hi, i'm sorry that this isn't the right place to post but unfortunatly i can't see where to start a new topic.

I was wondering if it needs to be both parents for a child to have ichthyosis, or does there need to just be one parent?


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#16190 - 07/27/07 06:30 AM Re: icthyosis
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
My son (4 yrs old) started on Acitretin (which I guess is made from Soriataine) about a month ago. It truly is a miracle drug! He has moderate LI, scales all over his body and now he is completely clear. Soft, beautiful skin! I am so thrilled - I never thought it would be this effective. I am so happy for him.

Susie
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

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#16191 - 07/27/07 02:58 PM Re: icthyosis
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Quote:
Originally posted by R:
Why don't they prescribe these drugs to people with lesser forms of Ichthyosis like X-link or vulgaris?


Hi R,
I'm not sure but perhaps the docs feel that the high incidence of side effects (some can be serious) are not worth the risk for more moderate forms of ich.
Mind you, I'm just speculating. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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