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#15454 - 10/09/07 07:51 AM Another Update and Seeking Advice/Info
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Guys,

Can anyone tell me what the highest dosage of Neotigason/Acitretin they have been able to tolerate and how it affected their skin?

As you are aware I started off very very slowly, on a little dose of 10 mg 2 days a week, and eventually 10mg every day, then 10 mg every day, except two days 20mg...Now I have re-tried to tolerate 10mg daily, and 20mg 3 days per week alternating.

There is no scale, but scalp is a little yellow at present, and the palms have a covering on them again.

My main worry now, is losing heaps and heaps of hair, and feet still very tender to walk on, have to use my scooter most times now.

Dermatology are wondering if i am giving up on the extra doses too soon, to see if the skin will normalise...as i reduce it the minute i find the peeling and fragility/blistering occuring again...

Maybe if i stuck those times out (by the way, no where near as painful and disabling as when i was on Accutane earlier this year)...then the skin will have a chance to normalise...and be less red and fragile AND PEELY...

The shedding of skin is astronomical...FAIRDINKUM, NO EXAGGERATION HERE...the carpets are vacuumed in morning, and don't look like they have even been done 6 hours later...

ANY THOUGHTS ON THIS THEORY ABOVE?
WHAT DOSAGE CAN YOU TOLERATE FOR BEST RESULTS?
DOES IT MAKE YOUR FEET TOO PAINFUL TO WALK?
DOES YOUR HAIR FALL OUT PROFUSELY?

And Niels, not a word from you....I know how you feel about all this...but i have to do what i feel is right, and live with a room full of Uni students in lecture theatres...I always clear the front rows...but not as much now on Neotigason...So that is a significant bonus for me...

KEITH is your damage to your bones ONLY FROM ACCUTANE...or do you suspect other Vit A derivative drugs also?

Pauline

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#15455 - 10/09/07 12:10 PM Re: Another Update and Seeking Advice/Info
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Pauline,
Sorry I have no advice and I am watching to see how things go for you, hoping for the best. I just wanted to say good luck and God bless.

Karen

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#15456 - 10/11/07 12:10 PM Re: Another Update and Seeking Advice/Info
Unknown Offline
Junior Member

Registered: 10/11/07
Posts: 1
Loc: Melbourne, Australia
i started taking Neotigason at the age 5 (now 19),

Highest dosage i went to was 75mg a day, but after being on it for a 2 months it felt weird and i felt more dry around my face than usual. So i went back to the dosage im currently doing, which is 25mg one day and 50 the next.

Dermatologist said to try experimenting with my dosage, cuz different doses can affect different people. So after trying 25mg a day for a few years, i tried 50mg a day for around 6 months than found my sanctuary at 25mg one day and 50mg the next.

My feet sometimes gets cracks and blisters but its not to the extent where i can't walk...

My hair is fine, i dont seem to loose it but instead grow it back faster than normal.

But im a guy and my hair isn't as important as to women. Currently ive gone for the military look. =]

Hope i could hav been helpful towards your questions.



[This message has been edited by Unknown (edited October 11, 2007).]

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#15457 - 10/29/07 05:30 PM Re: Another Update and Seeking Advice/Info
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Thanks guys

Karen you are very kind, thank you...not that you are sorry, but that you have an interest in how the drug is going...that is really cute... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]


Unknown thanks for that dosage imput...I can't believe doctors would put a 5 year old on these very strong drugs...but never mind that...

My discussion about, talked about Derms wanting me to increase it to help normalise my skin...

WELL I HAVE DONE IT...with much success, my skin seems to be peeling a little less, the thick callous on sections of my palms has lifted off totally, and palm looks normal... Mum said she hasn't seen that in years...
AND I CAN MAKE A CLAPPING NOISE AGAIN....I TESTED IT OUT TONIGHT, AND IT SCARED THE BOYS (MY CATS), THEY NEVER HEARD ME CLAP BEFORE...hehehe

Current dosage... 20mg on Mon, WEd, Fri & Sat
10mg on Tues, Thurs & Sunday...I seem to be happy with that, so i will most likely increase the 10mg days within a couple of weeks

hair loss is very bad now...BUT WHO CARES...would rather skin be clear and not prickly and uncomfortable...and smelly...

Sp Inknown, your playing around with dose yourself, is exactly what my Derms are advising me.

Pauline
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