Posted Sun 24 Dec 2023 12.52 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
I've just started hand and foot PUVA (oral route) and had my second session. Tops and bottoms of both hands and feet. It was a two minute dose. Followed guidance for protecting skin and eyes from sun - no great problem this time of year!
My first session was fine with no side effects but session two seems to have created new blisters (I have pustular psoriasis) and noticeable redness/swelling in my feet. They're much more tender than usual too. Is this to be expected? I can put up with it if it's just the treatment doing its thing but am worried about it getting worse over Christmas. Next session is Friday 29th and I'd imagine the team won't be back in until Wednesday.
Welcome any thoughts from people who've had this treatment. I get that it's effectively a suntan but I wasn't expecting it to feel like I'd sat on the beach in Benidorm all day!
Posted Sun 24 Dec 2023 14.04 by SheilaM
I had this about three years ago with like paper cuts all over my feet, anyway stick it out as it really helps and had been clear up till now.
My psoriasis has come back, have had it since a child, with a vengeance gp very good and advise from dermatology but no appointments until 2025 hopefully will get on top of this just do not want to take tablets too many side affects and I’m already diabetic 🤗 best of luck to you x
Posted Sun 24 Dec 2023 16.58 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Thanks, plenty of aloe vera and rest seems to have taken the sting out of it. Apparently it's a burn which comes from the inside out unlike sunburn. At it's worst 2-3 days after treatment so hopefully subsiding just in time for the King's speech tomorrow! Christmas lunch should hopefully help anaesthesitise it!
Best of luck with getting the treatment you need sooner rather than later
Posted Tue 26 Dec 2023 12.44 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Well, it's got much worse over the past two days. I can see a new pustular flare and can barely walk. And to make matters worse two toenails dropped off this morning. Hopefully will get to speak to the team tomorrow morning for advice. Patient information leaflet says I can apply a topical steroid and water-based moisturizer - will Cetraben do for that? I've also got Epimax ointment but that's very oily.
Posted Wed 27 Dec 2023 18.02 by kiloran (edited Wed 27 Dec 2023 18.04 by kiloran) From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
A little better today. Team very responsive and helpful and sympathetic. To add to the joy I've also likely got an infection so back on the antibiotics I go. Once daily application of a topical steroid to hands and feet (using Betnovate as I have it to hand and really don't fancy hitting it with Dermovate) and regular moisturising. Unfortunately I've developed some small fissures but hopefully not too deep and will heel quickly. Feel like tiny papercuts, my favourite!
Due to bank holidays I won't see the team until a week tomorrow when they'll assess and decide whether to continue.
Posted Wed 27 Dec 2023 19.34 by SheilaM
Good luck with that, I used to get dressings for feet that they used in theatre but really helped with fissures heeling and keeping air out so that they heeled a weren’t so painful, good luck
Posted Wed 27 Dec 2023 19.53 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Thanks. Bit sad about it really, if I'd known it could be this bad I'd have held off until after Christmas, it was only treatment two so I thought I'd be fine. I did tell them I was really fair skinned and burnt easily but they started on a very low dose and the first treatment was fine. Nurse who did my assessment was very experienced (30+ years) so I guess it's just one of those things. Funny thing is I didn't think to listen to myself - I always advise others not to start anything medical/dental-wise too close to Christmas/Easter if possible - having no access to expert opinion for four days was worrying.
Posted Wed 27 Dec 2023 20.00 by SheilaM
When I had it it was twice a week and started at about 1 minute and then very gradually built up, no problems like you have had, sounds as though it was too strong to start with
Posted Wed 27 Dec 2023 20.21 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Yeah, I'm very fair skinned (ginger as a child, with plenty of freckles). I'm an SPF50 plus a hat person in summer. I do tan eventually but have to be really careful. As a kid I'd get blistered ears, nose and lips back in the bad old days of the '70s when we didn't pay attention to the risks of sunburn. I remember getting sunstroke after half an hour on the top deck of the Isle of Wight ferry one year!
Posted Sat 30 Dec 2023 11.27 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Update one week on.
Feet are still sore but less so
Several loose toenails, two of which that have now departed entirely (surprisingly not that painful)
Soaking in Epsom salts and moisturising regularly with either Epimax ointment or Cetraben.
Thin surface peel of clear skin on feet happening, like a first sunburn of the season. Clear pink skin underneath. Some shallow cracks which are sore like a papercut but heal rapidly.
No evidence of new scale appearing which is very positive, I'd cross my fingers if they weren't so blistered and sore!
I’m moisturising hands and feet all the time still useimg flexitol 10% on my feet after filing and then using hemp foot balm and hand cream, get the. From body shop a nurse recommended to me and certainly seem to help keep it down. It was lovely being able to wear open sandals this year. Before that podiatrist recommended using fully covered sandals on my heels to give that support. Anything that helps. Beat of luck for the new year.
Posted Sat 6 Jan 2024 15.54 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Had a review with the PUVA team yesterday.
Going to restart treatment next week starting on half the usual initial dose and then go up much more slowly than previously.
Now that the burn has healed and swelling gone down my feet are probably the best they've been since my PPP started four months ago so I'm hopeful we're on the right track despite the burn.
Posted Wed 10 Jan 2024 13.43 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Decided to pause treatment pending consultant review in early Feb given how severe the adverse reaction was. In the meantime it feels like feet are getting better each and every day, other than the fact that nails are continuing to depart
Posted Fri 19 Jan 2024 17.02 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Well, this is very interesting. No PUVA since December 22nd and now I'm in the middle of an identical flare - the exact same daily progression. No change in meds or emollients 🤔
Feet and hands are currently at the paper cuts stage so I expect by Monday we'll be in the paper thin peel like sunburn phase.
Two weeks three days until my next consultant review which if the cycle repeats will have me almost clear and about to relapse 🤦♂️
The first few doses of light treatment normally last only 10-20 seconds max! Not 2 minutes.
Posted Fri 19 Jan 2024 22.44 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Interesting, thanks. I was having top and bottom done of both hands and feet. There were four lines on the countdown screen with different timers running. I wasn't patch tested and I wonder if they assumed I had normal adult skin, particularly on my feet - I don't, because both fully debrided themselves over the three months from September to November.
Posted Sat 20 Jan 2024 10.44 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Very grateful to have an urgent appointment on Monday morning now so will update after that. Hands are covered in fissures and fingers thick and stiff.
Posted Sat 20 Jan 2024 14.04 by SheilaM
Good luck with your appointment I’m just creaming all the time to stop getting any worse
Posted Mon 22 Jan 2024 14.42 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Not going to attempt PUVA again. What I've got at the moment is likely an amplified rebound reaction to the burn I got. Can't start any lower than they did on the PUVA dose and due to liver/kidney numbers being borderline I'm getting moved straight on to a biologic.
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Posted Sun 24 Dec 2023 12.52 by kiloran