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#15948 - 05/22/08 11:38 PM NEOTIGASON
LiLpinkEyE Offline
Junior Member

Registered: 05/22/08
Posts: 4
Loc: Mechelen, Belgium
I'm a 20 year old girl from Belgium who is very very very happy with the medecine NEOTIGASON. I would like to know if there are any other people who are taking this medecine too or if there's anyone with a question..

Greetz

xxx

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#15949 - 05/23/08 02:16 AM Re: NEOTIGASON
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
Why are you very happy with it? What type of Ich do you have? When did you start taking it? Is it a cream or an oral medication? And the best question of all is where can you get it???

Thanks Tara
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#15950 - 05/23/08 02:27 AM Re: NEOTIGASON
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Pinkeyes
First of all, welcome to our ichthyosis bulletin board and happy you found us. If you look in the retinoids section of the board, you will see many posts from people around the world using neotigason, soriatain, and accutane. Also, I hope we can put you in communication with people in Belgium who have ichthyosis. Take care Pinkeyes and by for now.
Sincerely,
Les
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#15951 - 05/23/08 11:24 AM Re: NEOTIGASON
LiLpinkEyE Offline
Junior Member

Registered: 05/22/08
Posts: 4
Loc: Mechelen, Belgium
Hi Tara,
First of all i have lamellar ichthyosis and i started taking neotigason when i was 12. Neotigason is an oral medication (pills)with several degrees to choose from (depends on how sensitive you are) and mostly you start testing it with a doctor to find your perfect degree. You need a perscription from your doctor to get it in a pharmacie (normally they don't have it in a pharmacie but they can order it). I am sooo happy with this medecine because it makes my skin rather normal. Visiually i have a "normal" skin (except on feet and hands who are still rather dry) but now i can were a bathing suite without everyone staring at me. Now i can also sweat like a normal person, warmth doesn't bother me anymore and i don't get all red like in the past. My skin is also a lot less irritated then it used to.
One downside of the medication is that you can't get pregnant during and two years after you're taking this pills. (not that you CAN'T but it can harm your baby).
If you have any other questions i'm happy to answer them!

xxxx

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#15952 - 07/07/08 03:24 PM Re: NEOTIGASON
JKGR Offline
New member

Registered: 07/04/08
Posts: 4
Loc: Athens, Greece
Hello to everyone. I am 33 years old, I have CIE, I am living in Greece and I am new here.
Dear Greetz, due to the fact that I was taking the Noetigason from the age of 5 up to the age of 28 on a daily basis, I would like to say that you must be very carefull about the dosage you take, because this drug has an impact on the liver. You should do blood examinations quite often (I used to do every six months) and especially you should look at the tests that have to do with the liver (alcalic phosphatase, transaminanses, e.t.c.).

Best regards,


John


Quote:
Originally posted by LiLpinkEyE:
I'm a 20 year old girl from Belgium who is very very very happy with the medecine NEOTIGASON. I would like to know if there are any other people who are taking this medecine too or if there's anyone with a question..

Greetz

xxx

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#15953 - 07/07/08 04:29 PM Re: NEOTIGASON
LiLpinkEyE Offline
Junior Member

Registered: 05/22/08
Posts: 4
Loc: Mechelen, Belgium
Dear Jhon,

thank you for your warning but I am very well aware of the possible actions of neotigason.
The first 5 years that I took it I had to do blood examinations every 3 months but because everything was going fine I now take blood examinations every 6 months, just like you. My doctor also adviced me to watch what i eat, like not too much eggs or chocolate or alcohol, because of the possible liver problems.
I also have my bones checked every 6 months(röntgen foto's, i don't know the name in english) because i'm still growing and to check if their aren't any problems.
I am however very glad to receive your message because I never met anyone who takes neotigason for such a long time and doctors told me they didn't know the effects of neotigason after taking it so many years.

Greets,

Nathalie.

Quote:
Originally posted by JKGR:
Hello to everyone. I am 33 years old, I have CIE, I am living in Greece and I am new here.
Dear Greetz, due to the fact that I was taking the Noetigason from the age of 5 up to the age of 28 on a daily basis, I would like to say that you must be very carefull about the dosage you take, because this drug has an impact on the liver. You should do blood examinations quite often (I used to do every six months) and especially you should look at the tests that have to do with the liver (alcalic phosphatase, transaminanses, e.t.c.).

Best regards,


John



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#15954 - 07/08/08 05:29 PM Re: NEOTIGASON
JKGR Offline
New member

Registered: 07/04/08
Posts: 4
Loc: Athens, Greece
Dear Nathalie,

Honestly I wish you, not to face any problem with the Neotigason.
Actually, it is the first time for me too that I meet someone that takes the Neotigason. Just for your information, I used to take on a daily basis the dosage of 20mgs. As far as I know it is good the dosage to be the 1/3 of the weight of the patient. I am not sure if it is a safe data and if it has to do with the age or even with the sex (male or female). Usually women are more strenght on these matters.
0)0)0)!!!
In any case you should talk about it with your doctor.
In addition, I would like to tell you that now that I have already stop taking the Neotigason for 5 years, of course there is a deterioration of the situation but it is still manageable by devoting much more time on a daily basis for taking care myself than I used to do during the Neotigason period.

Wish you the bests,

John

Quote:
Originally posted by LiLpinkEyE:
Dear Jhon,

thank you for your warning but I am very well aware of the possible actions of neotigason.
The first 5 years that I took it I had to do blood examinations every 3 months but because everything was going fine I now take blood examinations every 6 months, just like you. My doctor also adviced me to watch what i eat, like not too much eggs or chocolate or alcohol, because of the possible liver problems.
I also have my bones checked every 6 months(röntgen foto's, i don't know the name in english) because i'm still growing and to check if their aren't any problems.
I am however very glad to receive your message because I never met anyone who takes neotigason for such a long time and doctors told me they didn't know the effects of neotigason after taking it so many years.

Greets,

Nathalie.


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#22319 - 08/10/08 11:20 AM Re: NEOTIGASON [Re: LiLpinkEyE]
fieyka Offline
New member

Registered: 06/06/08
Posts: 1
Loc: Antwerpen, Belgium
hi there!

My name is Sophie, I'm 17 and live in Belgium too.

I heard about neotigason, but decided not to take it because I heard it has some bad symtoms after a few years. Don't know everything about it but anyways, I'm trying to accept myself the way I am without medicines. How hard it even is somethimes and although you see my skindesorder quite worse.

Do you accually know many people in Belgium with lamallar of thesame age as yours?

greetings,
Sophie

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#22331 - 08/10/08 07:23 PM Re: NEOTIGASON [Re: LiLpinkEyE]
MISFIT2012 Offline
Member

Registered: 08/09/08
Posts: 20
Loc: Utah
What is it?
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#26150 - 04/07/10 09:48 PM Re: NEOTIGASON [Re: MISFIT2012]
cloudlet Offline
Member

Registered: 03/18/10
Posts: 9
Loc: Latvia
when i was little baby the dr gived me this (tigason) medication and mother said that i was look like awful : the hairs fails and skin was peel more than ever.now in 23 i do all possible for avoid that dermatologist could prescribe this horrible medicament,+ in the internet are very bad comments about this

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#26207 - 04/17/10 01:29 AM Re: NEOTIGASON [Re: cloudlet]
taj Offline
Member

Registered: 02/01/10
Posts: 10
My dermatologist told me about this medication and was relieved when I told him I was aware of it, aware of the nasty side effects, and had chosen to not take it. It can cause internal injury and for what?? So we can look "normal".. purely for cosmetic reasons. I have to say that I have diabetes and Muscular Dystrophy and my eyesight is failing...I have no time to worry about smooth skin. I never lacked for boyfriends, been married twice, and have been quite happy with my life. Your outlook and personality counts for SOOOO much more than your skin. May I suggest you look inside you for a fix and not to a pharmacy?

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#26633 - 07/18/10 04:15 PM Re: NEOTIGASON [Re: cloudlet]
joetraff Offline
New member

Registered: 07/18/10
Posts: 2
Sorry to hear that.
Hopefully we will recover soon.
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#26638 - 07/20/10 04:43 AM Re: NEOTIGASON [Re: cloudlet]
JesMe Offline
New member

Registered: 07/20/10
Posts: 2
Loc: California
I have Lamellar... but that is what the Doctor diagnosed but it feels worse! It feels like I have all the category's of ichthyosis. My skin is so dry and scaly all over my body. I have not taken anything orally but just creams and lotion prescriptions. I'm just not satisfied... I have done clinical trials but don't know if it's going back a 2nd or 3rd time. Been using lac hydrin and tazorac cream but that one really drys out the skin and feel like I need to peel off the dryness ... Ughhh!!

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