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#15284 - 10/21/03 05:58 PM Being on Soriatane for the long haul
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I have been diagnosed at different times and in different countries of having CIE and Epidermolitic Hyperkeratosis. I am told they are the same thing.
I was first diagnosed at age 17 and I started Soriatane then. It has changed my life for the better and made me able to funtion properly at work and in life. The side effects have been minimal so far for me but I am married now and starting to regret not being able to have kids.
Is anybody in the same boat I am?
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#15285 - 11/11/03 09:20 AM Re: Being on Soriatane for the long haul
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Dear Sarah Helen

I guess my story is similar to yours: I have Lamellar Ichthyosis and I use Soriatane since I am 17 years old. At that time I was told that I have to wait 2 months before getting pregnant - a whole different perspective. Now I am married, I will be 30 soon and I am still taking the medicine, with generally good results and minimal side effects (which does not mean that it is the same for others!). However, children are not really an option for me. Mainly because of the Soriatane. Of course now, that my biological clock, as we call it, is ticking, I start thinking more about children and whether I should have stopped taking the medicine and have children. But I am guessing that most women at my age are asking themselves the same question: should I have children or not. What 'bothers' me is the feeling, that by now I don't really have a choice anymore.

Best regards,
Sofie

[This message has been edited by Sofie (edited November 11, 2003).]

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#15286 - 11/11/03 09:11 PM Re: Being on Soriatane for the long haul
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Please check with FIRST and your doctors but I believe you two can still have children. You may need to go off the medication for 2-3 years before you should conceive a child, but you are certainly still young enough to have children!

Sofie, I can understand how you feel about your biological clock ticking. Mine is doing so and the alarm has now rung! There are some days that all I can think about is having a baby. And no, you are not old! You are younger than I am, even and I am not too old to have a child yet.

Sarah Helen, don't write off being a parent. It could still happen. We have had several of these disucussions lately about how long you need to be off the medication and the general consensus is 2-3 years.
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I am female, and was born in 1972 with Lamellar Ichthyosis.

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#15287 - 01/30/05 09:48 PM Re: Being on Soriatane for the long haul
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I have recently been tested to see how long the Soriatane half life is for me. Because the drug has had a cathartic effect it has been stored in my fat cells (I have way too many...ha ha). I would have to be off the drug for almost 5 years and even then I stand the chance of passing along the mutation.
My husband and I have decided to adopt and we are looking forward to bringing a child into our family. I don't think I could be off the drug for even two years. It would hamper my career and my health as my movement would be very restricted again.
Let's just say...we're making scrambled eggs with the basket of eggs we've been given. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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