diagnosed in 1981: Hi all, I've had... - Beyond Psoriasis

Beyond Psoriasis

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diagnosed in 1981

p_cee profile image
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Hi all, I've had psoriasis most of my life. It started with a couple of patches on my scalp, then my fingernails and the pretty much the rest of my body. I've tried everything except biologics which my PCT had refused to prescribe because I'm not 'depressed enough.'

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p_cee
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BonnieSue profile image
BonnieSue

Not depressed enough? How depressed do you have to be? How good of an actor are you? Just kidding. How did depression become the qualifying factor??

p_cee profile image
p_cee in reply to BonnieSue

Since hospitals use the DLQI to decide if you can have treatment. My PCT says you have to have a score of 10 or more to be eligible for biologics and I always scored 2 or 3 because I've had to learn to live with p or would have gone totally doolally years ago!

BonnieSue profile image
BonnieSue in reply to p_cee

I wonder if this is a matter of point of view. What would it take for you to be a 10? Would you have to be ready to jump off of a bridge? I suspect your idea of a 10 and the next guy's isn't the same, nor is yours and the hospital's idea of a 10. Because everybody who rates a 10 already IS living with the psoriasis just as you are. Based on that criteria you are a 10 also.

p_cee profile image
p_cee in reply to BonnieSue

Everyone gets asked the same questions with the same score ratings. Not sure what the max score possible is just know that 10 is the minimum requirement for biologics. I shouldn't have to lie to receive treatment it should be based on how severe my skin is. I know that and anyone with a modicum of common sense knows that but the NHS / PCT has to follow guidelines and stick to ever-diminishing budgets so end up with silly excuses not to treat on occasion.

in reply to p_cee

Hi p_cee

I've had psoriasis for about the same amount of time as you. I've had light treatment, creams, and various tablets. I'm now on Stelara a biologic. I have done the DLQI test several times and off the record a specialist told me not to reply "not at all" to any questions. Better to say "a little" then that as it scores 0. It's not lying it's just helping you get the treatment you deserve. My psoriasis was classed as moderate/severe and now my arms are clear. My legs have a few small patches and body only a few patches here and there.

I had many low points over the years at one point before the treatment I didn't wear a t-shirt for 10 years....

Now I feel like a normal person again.

I hope you can get on biologists and they will work for you too

Mike 😊

p_cee profile image
p_cee

sites.cardiff.ac.uk/dermato...

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