Page 2 of 3 < 1 2 3 >
Topic Options
#15423 - 07/02/07 08:51 PM Re: used acutane in the past about to start soriatane
pauline5 Offline
Member

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

Double Yaaay now...since writing much pinker all over...amazing stuff...

and yes, funny about toes...I have dropped a shoe size too...smallest adult crocs you can get...

the only worry i have is my feet, they are getting very tender now lifting, and off balance a bit, can't walk far at all...

Dan went mad last night, and told me to stop drug...NO WAY, i just have to figure out how to artificially pad the soles again...I find the bottom of the crocs a bit hard for me...

Any suggestions?
Pauline [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Top
#15424 - 07/03/07 03:25 PM Re: used acutane in the past about to start soriatane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Pauline,
when I started the S. I was 17 and I don't have palmoplantar, as you do, so this might not apply.
I remember when the calusses on my feet peeled and it was extremely uncomfortable to walk or to wear shoes. I was in a school uniform at the time and you can imagine what the oxfords did to my feet!!!
My Mum went to a local First Nations person that she was friends with and they made me a custom pair of moccasins with very little stitching. What stitching there was was on the outside of the shoe. They also lined the sole with some type of underfur (I think it was rabbit). This may sound a little inhumane but they were the most comfortable pair of footwear I have ever had. I cried the day I wore through them. The leather and the padding acted as the sole of my foot and allowed me to build up proper calusses once I had my dosage correct.
I don't know if this helps but it couldn't hurt.
Good Luck!

Sarah [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"

Top
#15425 - 07/03/07 04:26 PM Re: used acutane in the past about to start soriatane
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
Dear pauline

I dont get it - since youve started on this drug you have been " THIS close to offing yourself several times as far as im informed. How can some pink skin and a smaller shoesize ever make up for that ???
As long as anybody can see we have a skin disease then any drug is never going to be enough and documented sideeffects is always going to be a problem. We need a cure not a remedy with devestating sideeffects and the minute we settle for temporary improvement we are NOT going to get a cure.
Please help me understand...

------------------
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------
_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

Top
#15426 - 07/03/07 05:17 PM Re: used acutane in the past about to start soriatane
PsychGal Offline

Member

Registered: 04/10/07
Posts: 70
Loc: By a large mountain
I just want to make a quick point of distinction here. Several studies have shown Accutane is potentially linked with clinical depression. Followup case reports revealed that there existed cases in which the clinical depression led to suicidal ideation and in some cases, suicide attempts. However, the aforementioned studies and their methods have been the topic of contentious dispute for years. There has not been ONE study which conclusively shows a CAUSAL RELATIONSHIP between Accutane and clinical depression. Clearly, further research is needed and we could go 'round and 'round all day with arguments for both sides. There simply is no clearcut answer.

That said, this is NOT the same drug as Acitretin/Neotegison/Soriatane. While, both are retinoids, Acitretin is a form of etritinate, while Accutane is an isotretinoin. For someone who is taking retinoids, regardless of their personal reasons, this is an important distinction to make.

Top
#15427 - 07/03/07 08:00 PM Re: used acutane in the past about to start soriatane
snackboy Offline
Member

Registered: 04/24/07
Posts: 9
Quote:
Originally posted by luckelizard:
Hello all.. as i said a few months ago.. my new dr is wanting to start me on soriatane.. im fearful of it because i remember all the side effects of accutane when i was a teen.. can anyone offer any suggestions?? My skin is the most sensitive i have ever seen.. i break out just using baby oil.. alot of the lotions make me scream (i have had two kids i can handle some burning) but the burning with lotions kills me. my skin on accutane became paper thin.. i felt just looking at it would tear me somewhere.. is soriatane the same way or is it better?? please offer some kind of advice.. it will be greatly appreciated.. thank you.. Crystal Rose
Hi Crystal,
I too took Accutane as a teen and had fair results. After a while though, it seemed to have lost its effectiveness, so I gave it up. My skin never returned to the rough condition it was prior to the Accutane, but after a period of years it was time to start something else. So I started on Soriatane.

I take 25 mg per day (I weigh about 190 lbs) and have had wonderful results. My skin has never been better although I do get the big patches of irritation that tend to peel and leave raw skin. Fortunately things heal rather quickly.

As far as lotions, I stay away from anything that says "lotion". Most of the them have alcohol and are water based and tend to dry me out even more. Baby oil - same difference.

As far as daily maintenance, I use some type of moisturizing soap, currently Soft Soap Nutra Oil and / or Oil of Olay hydrating Sea Salt soap and I use a poofer instead of a wash cloth.

After showering, I will use Vaseline on my hands, face and neck. Since I work in a business environment, its not really practical to use Vaseline anywhere else. You could probably use Aquaphor as well, but I prefer Vaseline.

If you are looking for a moisturizer, I highly suggest tanning oil (not lotion). Its a little pricey, but it does soften the skin a bit.

My skin is not really all that aesthetically appealing. My dermatologist suggested I increase my Soriatane to 75mg every two days. If I can ever afford to, I may give it try. Until then, my skin is tolerable.


------------------
It's only temporary.

[This message has been edited by snackboy (edited July 03, 2007).]
_________________________
It's only temporary.

snackboy (EHK - NPS ?)

Top
#15428 - 07/03/07 09:32 PM Re: used acutane in the past about to start soriatane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Niels, to help you understand...

My overdose had nothing to do with either of these drugs...I was already OFF ACCUTANE...and i hadn't yet commenced Soriatane...(although i know they stay in system for a while, I believe that Acctuane leaves the body pretty quick compared to the other types (etretinates).

Gees, Niels, I am not making this drug out to be a wonder product...I am just pleased that finally i don't have all the nasty side effects as before...and it is just nice to have smooth pink skin for a change...FOR SHEER COMFORT...I am sick of the stiffness, and prickly sensations...THAT IS ALL...

Well, NIELS YOU HAVE ONE FAN...MY HUSBAND!!! HE IS YELLING HERE, SAYING HE AGREES WITH YOU, HE IS ANTI ABOUT THESE DRUGS TOO...but he doesn't have to live in my skin and feel the discomfort...and I am working with people at Uni, and I know that when i have more scale there is more odour, and it turns people away, and I have students ask for another notetaker..

We might have discrimination laws, but we can't stop people from being bothered by us...and i want to make MYSELF feel much better and more comfortable being around others...so that I can keep doing what i love...(my notetaking job)it is not like i am sitting in an office, where i can control the situation with vaccums, and sprays...I am having to sit right next to someone in a lecture theatre, and THE ODOUR IS SO EMBARASSING, I HATE IT WITH A PASSION...it is not about how I look, but the smell and discomfort...

I am also most likely to be doing my own turoring and lecturing next year, working closely with others in research projects...AND I WANT TO GET RID OF THE ODOUR...

I TRY THESE DRUGS, AND PERSEVERE WITH IMMENSE PAIN, BECAUSE I AM SO DESPERATE TO GET RID OF THE ODOUR IN SOCIAL SITUATIONS AND TO HAVE SELF CONFIDENCE THAT IT IS NOT BOTHERING OTHERS.

And YES I AM WELL AWARE THAT THESE DRUGS ARE NOT A CURE...i am not totally stupid...but I am still allowed to be amazed at the smooth pink skin when I have never seen it before...(well on occasions) Getting rid of the odour doesn't mean i am getting rid of my ichthyosis, i know it is still there, and still is now...even with little areas of pink skin, but the less build up then the less scale...I AM NOT WANTING A CURE, AND HAVE NEVER FELT THAT WAY, EVEN AS A CHILD...I HAVE ALWAYS BEEN PROUD OF MY SKIN...JUST HATE THE ODOUR...

Also to further assist in your understand of my perceived contradictions...Don't forget that i have a 'diagnosed mood disorder' (aside from my depression) whereby my moods can change quite out of the normal graduations of mood...one minute i can be estatic, and the next pessimistic/depressed...this has no bearing on the drugs at all...

Finally Niels, I value your friendship very much, we have always had a good understanding of each other, and i would hate our altered perceptions in the usefulness or false hopes of these drugs to stand in the way...

Sorrry to the guys who hate conflict on here, but i had to justify my reasons for taking the drug and being happy to do so

OH NEARLY FORGOT...THANKS SARAH, i will look into the innersole padding...by the way, i do weare mocassins around the house, but not padded enough for outdoors, and particularly driving.
Pauline

Top
#15429 - 07/05/07 03:19 PM Re: used acutane in the past about to start soriatane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Who said anything about settling for a treatment and giving up on a cure?!?!?

To be frank with you I see very little issue with people, who have tested negative for the major side effects, who chose to live more comfortably through a drug.

I could not have the career or life that I enjoy without modifying the look and feel of my skin through Soriatane. Indeed, for me it is a wonder-drug as it allows me to pursue things that I couldn't do without it. It also helps me shed off the skin that holds the odour that was the root cause of all the social angst in my youth.

If a person is willing, has taken the time to learn and has the means to make life better with this drug why would you be angry with them?

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

Top
#15430 - 07/05/07 03:59 PM Re: used acutane in the past about to start soriatane
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
Jeez Sarah - dont get me wrong... - I have no problem with people doing all the drugs they like, but the thing is that Pauline does have a history with sideeffects (As she has also clearly stated).
Why do you get angry with me because I until now have chosen to live my life without retinoids. That is also the reason I usually dont comment in the retinoid discussion, but since I sort know Pauline, then I chimed in - sorry. I'll leave you alone now.

------------------
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------
_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

Top
#15431 - 07/06/07 07:58 AM Re: used acutane in the past about to start soriatane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Sarah, sounds like we have had very similar problems with the Odor...as you know it is a very pronounced in people who have EHK more than any other type of Ich...the definitions of EHK often say, with pungent malodor...says alot doesn't it.

Try not to let Niels bother you...He and I have had a close friendship for about 5 years now...we understand each other very well, same humour etc...I think this was just his WEIRD way of showing concern for me...He didn't see the sense in me revelling about pink skin, if i was also at side effect risk, and i agree with his rationale...But I assure him that this (different) drug is not affecting me mentally one little bit...

BTW 1/3 of my palm just peeled off today, so exciting to peel it back...I CAN ACTUALLY MAKE A CLAPPING SOUND NOW...normally a waste of time for me to clap in an audience...can't hear a thing...

Top
#15432 - 07/06/07 12:27 PM Re: used acutane in the past about to start soriatane
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hey Folk!
I would like to apologize for my reaction to what Niels wrote. Without knowing the history of Pauline and Niels I didn't understand properly and should have asked first.
Please don't ever not write because I have seemed angry about something - it's never the person that I'm angry at, just the situation.
I have had the joy of having a Soriatane peel and it is unprecedented. I am now reliving the joy and wonderment through Pauline's experience and I didn't want anyone to rain on her parade. Sorry that I came off sounding rather harsh. I'm better now. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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

Top
Page 2 of 3 < 1 2 3 >

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information