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#17130 - 03/28/08 01:14 AM starting accutane
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
Ok- well I just picked up my accutane this evening and will be starting tomorrow. I am actually a bit nervous. Even though I took it years ago, before I new of this board and read everyone's experiences, this time is different. I also think it has to do with my doc never treating anyone with EHK before. Another thing is that I am still unsure of the dose. When I was on accutane from age 17-20 (off and on) I started out with 20mg 3x per day and the last time I was on it, it was up to 40mg 3x per day. After reading all the posts on retinoids - it seems like I took a very high dose compared to others on this board-luckily with hardly any side effects. This time around my doc has prescribed me to take 40mg 2x per day and then said we would lower the dose to "keep it under control"

So here is my question to all of you taking these meds currently - what doses do you take that keeps you comfortable with minimal side effects? Sarah & Pauline, I think you are the only two that I am pretty sure are currently taking these types of meds, I have read all of your posts on the subject, but Sarah - I have not been able to find what dose you take and I know you have been taking them for many years,I know you dont use accutane, but I would just like to know what dose you take and how often. Pauline, same for you - I think you are still on the neotigason - what dose do you take. And anyone else that is taking these meds, please let me know what doses you take - I would really appreciate the feedback, a lot of times I trust people on this board more so than what my derm says. I posted this in the EHK section, since that is what I have and I want to know what doses other people with EHK are on. Thanks!!!!

Angela
_________________________
Angela

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#17131 - 03/28/08 10:49 AM Re: starting accutane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Angela, yes I am still taking neotigason.

My 'comfortable' dose is as follows

Mon, Wed, Fri & Sat I take 1 x 10mg capsule in the morning, and 1 x 10mg capsule in the evening.

Tues, Thurs & Sunday, I take just 1 x 10mg capsule each morning alone...

I only just recently cut out the evening capsule on Sunday nights...that is all I have cut down, 1 lowsy capsule, and it has made a huge difference...

I am not as tender on the soles of my feet anymore.

I am not as red/inflamed and feverish anymore
I am not getting little infected blisters anymore.
and I am not as peely as I was, although still heaps by anyone's standards...

The only draw back is that the scale is regrowing slightly, but the drug gets rid of it pretty quickly...

My lower legs are not so great...but rest is good.

GOOD LUCK AND PLEASE DON'T BE NERVOUS...I think all these nasty side effects we experience are very much dose related...

If we can accept 'no miracles' and satisfaction with 'some' improvement from these drugs then I don't see what harm they will do to us, with safer levels in our systems...

Love Pauline

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#17132 - 03/28/08 06:56 PM Re: starting accutane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Angela,
you're right, I've been on Soriatane for about 18 years now (Gosh! I'm old!!!). I've been maintaining a comfortable level with 30 mg a day.

I also have to admit that I'm very aware of the cycles of my skin and, sometimes, I'll take a break from the Soriatane. I use as little as possible to keep myself comfy and don't care, too much, about how it looks.

Hey - if you are really nervous about it we could meet and have some java some time. I would love to share my experiences with you. It's too bad Pauline is so far away [img]http://www.ichthyosis.com/ubb/frown.gif[/img]

------------------
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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#17133 - 03/29/08 01:41 AM Re: starting accutane
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
Thanks for the encouragement - im sure ill be fine once I get used to it again after all these years. did either of you start off on a higher dose like I am and then go down to find the "comfort" zone? One last queston (for now) what tests do you get done to make sure things are going ok - I know I will be getting the blood tests once per month, but is there more I should request be done?

Sarah, yes - lets for sure get together soon. I am going out of town tomorrow for a week or so for a death in the family, but when I get back I will touch base and see when we can get together for coffee or lunch or something, maybe in Maple Grove...

Pauline, sure wish you lived on this side of the pond!

Angela
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Angela

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#17134 - 03/29/08 02:32 AM Re: starting accutane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
yeah so do I Angela,

To answer your question NO, I started off very slowly and gradually increased my doses on both drugs...because of very horrific experiences back in the 1980s...so low then up, then back down again for me, and staying down...

TESTS: I have a full blood count test, Liver Function test, and cholesterol check.

Others I know, strongly recommend having skeletal scans, to make sure there are no changes happening to our bone structure...like spine and hips...

but I have never kind of bothered with that for that specific reason, as I already have periodic bone scans because of my osteoporosis, and I have some minor concave curvature of the spine.

A QUESTION FOR YOU NOW? You are not prone to depression are you? Because Accutane has been controversially associated with Suicides in young people...espeically teenagers...

I actually took an overdose last year, and my Derm is attributing it to Accutane which I was on for a very short while...they instantly took me off it after the overdose in April last year...

However there were other circumstances at the time, along with my deep depression.

Make sure you have a baseline blood test before starting, to get an initial idea of your cholesterol levels, and liver function...

Love Pauline

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#17135 - 03/31/08 08:04 PM Re: starting accutane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hey!
I'm totally in with coffee in Maple Grove. Sorry for the loss in your family though.

I started out at a very low dose and worked my way up. At first I had weekly (yes, weekly) blood tests then monthly and now quarterly.
They test for pretty much everything and I have bone density tests done occasionally.

I'm really looking forward to meeting you, give me an email or a post when you get back.

------------------
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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#17136 - 04/09/08 04:00 AM Re: starting accutane
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
Well, I am back in town & have been on the Accutane for about 2 weeks, not much change yet - face really smoothed completely out - but you could never tell anything on my face anyway, it has always been very clear. But I am starting to peel a bit now and have these pink areas all over where I am peeling and I am a bit sore and extra dry... but if I remember right, that will go away in a few weeks, but cant really remember.

Pauline, to answer your question - depression does actually "run in the family" but so far, I have not had issues with it. Aslo, when I was on Accutane as a teen (on high doses 120 mg per day) I never had any depression so I am not too worried about that - I am more worried about what blood tests and others that I need. I think the only one I get is the triglicerides (sp?) once per month. do you think I should be asking for something to test my liver - I have no idea what triglicerides are.... my doc does not have any experience with EHK so thats why I am "extra" nervous this time around.

Angela
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Angela

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#17137 - 06/18/08 02:46 AM Re: starting accutane
robinlynn9901 Offline
Member

Registered: 12/30/04
Posts: 40
Loc: Scotia, NY, USA
If I may- what is the difference in sorritane and accutain.

Also is it worth it?

Is everyone on these drug out of child bearing years? It sure would be nice to not have all this scaling, but I worry about the side effects. Any thoughts?

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#17138 - 06/18/08 06:46 PM Re: starting accutane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello!
There are many difference between Accutane and Soriatane (also called Acitretin). I know that Jennifer is able to tell you all about the science but in layman's terms...

Soriatane is a very strong derivative of vit A and, like Accutane, has many possible side effects. The drug Soriatane lasts much, much longer in the body than Accutane.

While I am of child-bearing age and want to be a Mum, we have chosen to adopt in our case.
This may makes things murkier or clearer for you - I hope it is the latter. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

------------------
Sarah
36 years of EHK and counting
Also Mom to Monroe and Morrison - the four legged, K9 wonders
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#17139 - 06/20/08 03:58 AM Re: starting accutane
Lperez520 Offline
Member

Registered: 05/10/07
Posts: 72
Loc: Brooklyn, NY, NYC
I wanted to know a little more about neotigason, and sorritane, because i would like to mention them to my doctor, years ago and i mean years ago when i was about 14 i was on accutaine, my parents took me off it because of the side effects, i would like to know the side effects of neotigason and sorritane and how much does it help your skin. and if the flaking is reduced i use over the counter creams now but that isnt helping much, and its kinda driving me nuts especially during the summer months..I have EHK, the reason i ask is because i have a daughter and i do want to have more kids but i first want to know what are the side effects of these two medications.

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