What's the prognosis?

Posted Wed 2 Nov 2022 20.53 by GinaG

I've had scalp psoriasis for a number of years - it was always manageable with a bit of t-gel and Betnovate lotion from time to time. A few months ago I very suddenly developed guttate psoriasis all over my body. It has developed into significant plaques, it is so sore and flaky and itchy. Every day it feels like there is a new area that develops or get worse. It's in my ears, on my face, it's progressing onto the tops of my arms, my legs and torso are a mess and it's even in my groin. Alongside this and over the space of 6-7 weeks I have developed debilitating psoriatic arthritis. It went from one knee to two, then a foot, then my neck, then a couple of fingers... Now I am starting to feel it in an ankle and an elbow. I can barely get up and downstairs, am in tears most days and today for the first time I am finding it uncomfortable to cut with my knife and fork. I'm moving through a range of painkillers, lotions, potions of varying levels of disgusting and smelly. I am waiting for my dermatology and rheumatology referrals to come through but in the meantime I guess I am just wondering: at what point is this going to stop? Is it when every single bit of skin is cracked and bleeding and I can no longer get out of bed? Because at the moment it is getting worse almost daily. It has come so out of the blue I am a bit shell-shocked by it in all honesty. What is the prognosis for this like with treatment? Will I ever get back to some sort of normality? I know everyone is different but I feel so in the dark about what life is going to look like for me and it's really getting me down. If it means anything to anyone, my inflammatory markers which should be 12 were 76 as of a couple of weeks ago. I'm sorry this is long and a self-pitying post (I am trying to stay positive but today is definitely a down day!), I am just really struggling and would welcome any experiences and knowledge from people who have been through all this as I am totally in the dark! My one ray of hope is, that my GP has managed to get me a last minute cancellation for a steroid injection which I hope will ease the joint pain until I see rheumatology - has anyone else had this and able to share their experiences? Thank you so much to anyone who can share any insight ❤️

Posted Wed 2 Nov 2022 22.41 by Mark

Hi Gina, I am new to this forum but can feel your pain. I started with a small dry patch on the back of one hand a year ago and within a few months it was everywhere and affecting my confidence terribly. Now my left wrist is killing me and my main source of fun, motorcycling is gone as I can't bear the pain most times I go out for a ride. Two things have made an improvement for me: I went on holiday and sat in the sun for possibly too long. I'm sure it was a massive help to my skin, like a miracle, although it did return a few weeks later. I also have been taking a long hot bath every day (they say relaxation is key) and then putting cream on (at the moment Dovonet, but they give me what ever is in stock at the surgery). It looks dreadful at first but the next morning it is definitely fading a bit. I think stress is a major factor, try to relax despite everything and try to avoid the vicious circle of it getting worse and you stressing more. Easy to say I know but try to stay calm. I hope you feel better soon and the injections work when you have them!

Posted Thu 3 Nov 2022 17.38 by GinaG

Thanks Mark - even though I know I'm not alone, it's always good to get that confirmation and hear about others' experiences. I'm glad you are finding things that work for you - agree the sun seems to help, I don't know about baths though as I'm not sure I could get up and out of one 😂 I'm really sorry you've had to give up a holiday though - that must be hard. Is there anything else you can try to get back in the driving seat? I had my steroid jab today - so had to come off Naproxen yesterday in preparation. It was actually scary how bad the pain and lack of mobility is without painkillers masking it - struggled to get dressed, kept getting "stuck" in bed as I couldn't turn over etc. But the jab is done and now I guess I wait to see if it works! I also have a massive pile of new prescriptions to try on my skin so here's hoping that works. The battle is endless! I hope you're managing OK though 😊

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