Hello everyone
I’m new here and not sure what I was hoping from this post. Maybe to hear some others experiences and to (hopefully) feel there’s some light at the end of the tunnel?
I don’t have an ‘official’ pustular psoriasis diagnosis yet but looks very much like It and the GP indicated it could be. I have had psoriatic arthritis for around 3 years now.
For just over a month now I have developed pustules all over my hands, then feet and now several dotted on other areas of body. Over the last month when the pustules
started, it’s been really tricky, the pustules start small, get larger, merge together, eventually burst and then crack and peel. I have new skin on nearly the entire palm of my hands from when they’ve peeled and now the pustules are appearing more again on top and mixed in with the sore skin. My feet are a little more behind the process than my hands, think, as I have more pustules on them at the moment. My hands are sore. However my feet are currently so sore/tight/itchy/burning and I’m finding it hard to walk. It seems to be getting worse, not better.
I’ve been on adilumabab for around 5 months and have been asked
To stop this for 4 weeks so the rheumatologist can review things. I have used Enstilar for almost 2 weeks and not much is happening. Hydromol being used and absorbs so quickly.
I keep thinking I need to just get on with things but it’s hard as feeling a bit rubbish and worrying how I’m going to walk/drive if this carries on.
Posted Wed 6 Nov 2024 08.18 by Clarey
Hi I was diagnosed with GP last year for this on my feet, I waited almost a year for a dermatologist appointment (I don’t have the arthritis part) now it’s started on my hands. I use epiderm which works far better in my opinion.and betnovate ointment. I also have Salic acid to use for skin build up.
It’s been a horrific experience, the pain is excruciating at times and honesty disabling. I’ve went from a fair active person to someone who hardly goes out. I am waiting on light therapy treatment now. You need to see a dermatologist for proper treatment. I also applied for Scottish Disability payment however this was knocked back I am in the process of redetermination now
Posted Wed 6 Nov 2024 08.20 by Clarey
Sadly it is life changing, I’m still in the early stages of treatment but from what I have experienced so far it’s making the most of when you don’t have flare ips and managing things when you are
Posted Wed 6 Nov 2024 14.02 by Vix82
Thanks for your replies. It does seem life changing. It’s really horrible isn’t it. The dr has now refereed me to the dermatologist and rheumatologist are going to try me on a different medication for the psa.
Posted Fri 8 Nov 2024 19.21 by Slarti
Hi,
First of all I feel for you. I know exactly how this is impacting your life due to it's debilitating effects, but, there is light at the end of the tunnel (in my
experience) I suffer with palmoplantar pustulosis and documented it by way of photographs, which I'm glad I did.
In Oct 22, I noticed small whiteheads on my palms, which gradually turned into blisters. They then joined up until practically both of my palms were covered. Then the peeling...I had also been told that new pustules could appear before the skin had healed, and indeed they did. On top of this, my lymph nodes had swollen and I had a stiff neck...I cried so much. Dermatology prescribed me steroid cream and trips to the hospital to pop the blisters. I bought so many pairs of special gloves because I wore them constantly.
I was told that there is no cure. This freaked me right out initially, but was out of my control so I was powerless.
So that's my experience. Do take some photographs...I find it reassuring that when a small flare up occurs, it will never be as bad as the initial one.
I hope yours goes into remission soon.
Posted Fri 8 Nov 2024 19.33 by Vix82
Thanks for sharing this. Mine sounds exactly like this! After my hands started joining together and bursting, the whole process started on my feet. I think feet may be slightly worse as walking is so painful. It’s really helpful to hear you’ve had some light at the end of the tunnel. I’m pleased for you. I’ve been taking photos and can see it’s getting better but worrying as I can also see new pustules on my raw skin.
Dr referred me to dermatology not sure how long the wait is though. Rheumatologist is going to put me on new meds. I’ll get there hopefully.
And I know what you mean about the amount of gloves!
Still finding this all really hard and I think people don’t really understand what it’s like. Which they wouldn’t I suppose as it’s so unusual.
Thank you.
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