70% recognize psoriasis as a complex condition but managed it as a skin problem

[Celia]

Exactly Caroline and jiml, they have us where they want us - dependent on the drug companies.

I guess I'm kind of being a bit rebellious, I've stopped all of the prescription treatments. For one thing, they only seem to help for a bit, then it either comes back the same or worse, or the skin starts to thin so badly it bleeds, then gets infected which is a whole nother set of problems.

[Caroline]

I like that rebellion attitude. I am myself like that, therefore perhaps my nickname on the forum.

There is a set of doctors that really want to do their best to solve our problem, but they are limited by government protocols and pharmacy.
And unfortunately there are a lot that hardly have any knowledge about our condition.

[jiml]

I like that rebellion attitude.     I am myself like that, therefore perhaps my nickname on the forum.

There is a set of doctors that really want to do their best to solve our problem, but they are limited by government protocols and pharmacy.
And unfortunately there are a lot that hardly have any knowledge about our condition.

Indeed TIGER we love rebellious members
Let's hope a study like this will help stimulate discussion and eventually there may be a cure stumbled upon

[Brighteyes]

Not even going to bother reiterating how I feel about the medical approach.
Still fighting to be seen as a PERSON not a hospital number.
Quality of life whilst living with this is soooooo important. And then there's the psychological impact which (in my case) has been totally ignored by the Consultant.
And yet the Dermatology and District nurses have been amazing (even down to actually hugging me when I broke down in pain).
Anyway.....I digress.
I'm also distrustful of the drug companies. I would like to believe that they are striving for a cure but, let's be honest, where's the profit in that? Big business doesn't do altruism.
Hope I'm wrong.

[jiml]

Not even going to bother reiterating how I feel about the medical approach.  
Still fighting to be seen as a PERSON not a hospital number.
Quality of life whilst living with this is soooooo important. And then there's the psychological impact which (in my case) has been totally ignored by the Consultant.
And yet the Dermatology and District nurses have been amazing (even down to actually hugging me when I broke down in pain).
Anyway.....I digress.
I'm also distrustful of the drug companies. I would like to believe that they are striving for a cure but, let's be honest, where's the profit in that? Big business doesn't do altruism.
Hope I'm wrong.

Difficult one that getting a hospital to see you as a person........ Don't let them treat you like a second class citizen or just a number ..... Make them listen to the psychological impact it has on you particularly when you reach out to them for help and get a negative response ,

[Celia]

Exactly Brighteyes, unfortunately big business pharma wants to keep us grasping at the new next big thing. It's all about the payoffs (oh what a mess).
It seems as though hospitals need a wake-up, if it weren't for the patients what would be their purpose? They really ought to treat the patients with dignity,  respect and compassion.  It seems though that there are a lot of incompetents in the medical field.

[Fred]

Poll: How satisfied are you with your Psoriasis Physician?

[Celia]

Poll: How satisfied are you with your Psoriasis Physician?

I am pretty happy with my Dermatologist, as a person and overall office/staff, they are compassionate and matter -of-fact.
I however, don't have insurance, and cannot afford any of the ridiculously expensive treatments - UVB works the best for me -
I have a large drawer full of partially used creams, lotions, potions and sprays that worked for a time, and then most of them would just make my skin thin out so much it bled at the slightest touch, which is really aggravating!!!!
So now I'm muddling along, trying not to scratch, and slopping on the coconut oil

[Caroline]

Poll: How satisfied are you with your Psoriasis Physician?

I am pretty happy with my Dermatologist, as a person and overall office/staff, they are compassionate and matter -of-fact.
I however, don't have insurance, and cannot afford any of the ridiculously expensive treatments - UVB works the best for me -
I have a large drawer full of partially used creams, lotions, potions and sprays that worked for a time, and then most of them would just make my skin thin out so much it bled at the slightest touch, which is really aggravating!!!!
So now I'm muddling along, trying not to scratch, and slopping on the coconut oil

Oh! But then you should contact Bill !
Our professor.
He uses a medication that costs him only a few cents per pill and works really good !

[Bill]

Less than 40 cents a week in fact, Caroline, but I dont take it for fun sadly. On the theme of dodgy pharmas, Biogen Idec got a "Please explain?" for it's submission to the TGA for Tecfidera approval. Apparently the "49% relapse free after two years" relates to their statistical methods, as by a layman's understanding of the term only 29% meet the condition. Hopefully the approval will get withdrawn, then I can happily start my importation business again. Oh, and the cysteine does nix for the p and psa (missed a dmf dose for a much needed break and to check), although it does clear my nose. Hopefully it will make the dmf less unpleasant and more effective. I will find out soon and let you know.

Cheers,

Bill