PASI Score - outdated?

Posted Tue 21 Jul 2020 13.52 by VonTinka

Why does the NHS use the PASI score if it is something they use for clinical trials? I've suffered with psoriasis on my face for years now and it's severe i covers my forehead to my eyebrows and all my ears and scalp it's pretty bad. I can't get past the pasi score though they always say it's not bad enough on my body too (i have it on my body). It's ruined all my nails on my hands and feet and i just feel awfull but this PASI score stands in my way of trying new things that could give me my life back. I have 0 friends, 0 confidence and i'm gaining weight cause i wont leave my house. Why do they do this? Why do they not class large visible patches of psoriasis as a step towards at least trying a more aggressive treatment? This is a giant conjoined patch from ear to ear across my forehead it's depressing. I've cried to the dermatologist and they still wont budge even though my quality of life doesn't exist. So is this PASI score ever going to change? It's wrong it should be based on how it effects someone emotionally and if it's on high visible areas too. I've tried methotrexate (hair fell out really bad and i felt like a zombie), ciclosporin (high blood pressure both times i was on it) and diethyl fumarate (had to come off my whole body went red and i felt like i had severe sunburn all over) Everything i tried to tell my dermatologist just was ignored even the fact i was super depressed and didn't want to bother anymore. I'm just at a loss, at the moment i'm waiting to see my dermatologist still i've heard no word since the covid issue but i don't want to mither for a appointment as i know they are struggling with covid related issues. Sorry for my rant, i'm just so fed up with it. I have a few large patches on my body too that are painful but i can cover them up so nobody can see them it's just the pain i feel. Do any of you guys feel this PASI score is wrong to measure psoriasis? I'm tempted to get tracing paper around all my patches and take them in a box as it's well over 3 palms worth! My head is 2 atleast lol!!

Posted Thu 23 Jul 2020 15.11 by PsoAdminMod

Hi VonTinka, I am sorry to hear you are having such a hard time with your psoriasis at the moment and that you have been unable to access the next step in treatment due to your PASI score. In some centres in the UK dermatologists can now prescribe a biologic to a patient whose psoriasis is in high impact sites such as the face, genitals, scalp, and soles of the feet or palms of the hands. So it may be worth asking your dermatologist to consider this in deciding your treatment plan, particularly as your psoriasis is having a detrimental impact on your psychological and emotional wellbeing. It may help you to also take a look at the British Association of Dermatologists Guidelines for Biological Therapy for Psoriasis and show these to your dermatologist to help make your case. In section R4 under ‘Criteria for Biologic Therapy’ the guidelines state that a dermatologist should offer biologic therapy to people who are candidates for systemic treatment where methotrexate and ciclosporin have not worked or have been unable to be tolerated, and the psoriasis is having a large impact on a person’s physical, psychological and social functioning. Importantly this includes people where ‘the psoriasis is severe at localized sites and associated with significant functional impairment and/or high levels of distress (for example nail disease or involvement of high-impact and difficult-to-treat sites such as the face, scalp, palms, soles, flexures and genitals).’ You can access the guidelines here: https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjd.19039 I very much hope this helps you to make your case with your dermatologist and if you require any further guidance please feel free to get in touch with our confidential helpline where one of our friendly staff members will be happy to advise. You can contact us by phone on 01604 251 620, email at mail@psoriasis-association.org.uk or WhatsApp on 07387 716 439. Best Wishes, Amber, Psoriasis Association

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