Palmoplantar Pustular Psoriasis journey
2
Posted Sun 29 Oct 2023 22.39 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Whilst I've had a few minor skin issues over the years and a confirmed diagnosis of lichen planus they've not had a big impact on my life.
Following a bout of COVID in December '22 I started developing what turned out to be plaque psoriasis on my natal cleft and lower back - I'd put this in the "moderately annoying" category. That was eventually managed/resolved by Lotriderm and Enstillar.
Then in August I developed a hard patch of skin on my right foot on the outside opposite the arch. I thought it was just a callus from summer shoes and a lot of walking. Oh how wrong I was! Eventually this spread to the entire weight-bearing surfaces of both feet, with the left foot symptoms being about 4 weeks behind the right. All the skin went yellow and hard and eventually cracked with deep fissures across both insteps.
I was told to treat the hard skin with Cetraben, Flexitol, and Betnovate by my GP. Over the course of a couple of weeks it became agonising to walk as the hard yellow skin softened and cracked. Through the cracks I could see pink and grey blotchy "new" skin so I was sent to podiatry for careful debriding of any dead hard skin. In hindsight I'm not sure this was the best option now that we know it's Palmoplantar Pustular Psoriasis. Essentially there have been three or four layers to this on my feet:
Hard yellow original soles.
Sheets of sterile pus buildup
A dark purple layer or a yellow and brown crusty layer
A pink new skin layer which genuinely looks like baby skin.
It's taken about 8 weeks to go through those layers to the new skin. I'm hoping that the new skin stays clear but don't know because this is my first flare. What tended to happen was the hard yellow skin detached from whatever was underneath - it felt like there was a gap between layers. In the case of one of my heelpads this ended up detaching whole! Below was pink/grey skin with a small amount of bleeding in localised areas. Over the course of a couple of days this area crusted over with a sort of cornflake or craquelure texture. Each cornflake slowly lifted and eventually fell off (tip: don't be tempted to pick these off, the part where they're still attached is awfully painful if you do). Left behind was babysoft pink skin with no signs of pustules or plaque.
My feet were so bad I stumped up for a private appointment where I was prescribed Dermovate under occlusion twice per day. I did that for two weeks and it definitely accelerated the layer shedding process but I got quite worried about it as my feet were excruciatingly painful even on Nuromol and heavy padding/dressing.
Fortunately I got prioritised under the NHS - I did the DLQI survey and was constantly scoring over 20 and they also reviewed photos sent by email which I think piqued their interest. It was mentioned that it was the worst case they've seen for many years. I also had no risk factors for it - don't smoke or drink, not a woman, etc.
I finally got to see them in late October where they prescribed Acitretin and Diprosalic. I'm also on the list for PUVA because I have pustular psoriasis in my hands and my nails are affected too.
One week into the treatment and I'm seeing a massive improvement with few side effects. On day 3 on Acitretin I got massive sunburn-style peeling on my legs (front and back, thighs and calves). My feet have accelerated peeling too with more and more pink skin showing through and the "dried egg yolk" crusts slowly detaching. They're very tender still but I'm positive.. They look and feel healthy so hopefully it's just a question of breaking them in like a new pair of shoes.
I'm under no illusions that this is a permanent cure but I hope I'll spot the signs earlier next time and know what to expect. It's a pain and situation I wouldn't wish on anyone. I'm happy to talk further about my experiences with palmoplantar pustular psoriasis in the hope I can help others coming to terms with it.
1
Posted Sat 4 Nov 2023 10.43 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
So I left the house for the first time in a couple of months yesterday (other than to go to docs/hospital) and it was... OK.
Being on crutches does give a sense of security as people tend to give you a wide berth! Although I've turned into my late father doing the pointing and directing thing with my crutches 😄
Went to the theatre on a couple of heavy painkillers and got through the performance, luckily I had an aisle seat which meant I could stretch a little. Very tired on return home.
Left foot looks like it's accelerated healing with lots of new skin and very little old sole left. I've swapped from dressing and padding it to just wearing a thick sock. I might get adventurous and wear nothing on it in bed tonight.
Right foot had much more damage and is still padded and sore with a couple of raw areas where crusts got knocked off prematurely.
Palms of hands are almost completely clear with just the dark pink blotches you get when plaque psoriasis has gone into remission. Nails still a problem and quite sore, particularly both thumbs.
I'm quite surprised by the improvement given I'm only 12 days into Acitretin but I'll take all the wins I can get!
1
Posted Tue 7 Nov 2023 20.10 by Angela j
Hi
I’m new to this but reading other people’s experiences, I know feel like I’m not the only person suffering.
I have suffered with plaque psoriasis on my elbows, knees from the age of 18 & learned to live with it for the past 36 years.
7 years ago my daughter went into premature labour with twins & twin 1 was delivered at 22 weeks followed 5 days later by twin 2.
That week my feet got extremely itchy…… psoriasis on the soles of my feet. Again I’ve learnt to live with it.
I get puss filled blisters that cover the whole sole of my feet.
The past 6 months have been horrendous.
I can’t even get shoes on.
I’ve been using DOVONEX ointment which has always been quite good.
Was referred to dermatologist couple of months for emergency appointment. Was told I need biopsy, the reason being I also get these symptoms on my hands.
Had biopsy a week ago. Since the biopsy I’ve had a bad flare up.
Finding I can hardly walk, feel like I’m standing on broken glass, can’t even get slippers on.
Want to soak my feet, just don’t know what to soak them in.
1
Posted Tue 7 Nov 2023 20.46 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Sorry to hear you're suffering with this, it certainly sounds like what I've got. I'm surprised they've bothered doing a biopsy given your history as it's not likely to be anything other than PPP. Do you have any nail involvement?
My issue was that I had pustular buildup under years of hard skin. Since that's been softened and broken down first by Flexitol, then Dermovate under cling film and now Diprosalic it's much less painful. I've got lots of clear pink skin and walking has gone from agony to prickly and sort of manageable. Most of the pain is coming from remnants of old skin and some particularly persistent scabs left over from when it was really bad.
To help that process I just soaked in warm water.. Initially I couldn't do that for long because I got an intense dull ache in my feet, like they were in a pair of too tight shoes. Now I'm able to stand I put a foot spa in the shower with epsom salts in the bottom. But that's mainly to do with getting rid of the remnants of old skin.
If you don't have steroid creams you could try vaseline under cling film overnight.
If you do have hard skin this might provide some relief like it has for me but given this is my first flare I don't know whether it's just gone into remission and is about to start the process all over again! My feet are getting better day by day but it feels like it's too quick for it to be due to Acitretin (I'm on day 15) so I'm a bit wary.
Posted Thu 23 Nov 2023 21.43 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Brief update from me - I have two almost baby skin new feet which aren't showing any signs of pustulosis. Just a couple of raw patches which are no worse than when you rub your heels in a new pair of shoes. And of course being psoriatic means they're healing (well, scaling) rapidly.
It's not all plain sailing though - the new skin is very very dry and needs moisturising to prevent plaques from building. It's like a snake shedding its skin. On the right foot (which was always the worst) its yellowing slightly. Moisturising as much as I can with Cetraben - 4 times a day on the left foot and less frequently on the right because that's still dressed due to raw patches.
My consultant has dropped my Acitretin dose to 10mg/day because it looks like I've had a reaction to it - nothing too painful, just a dotty scaly rash on thighs and forearms. This appears to be follicular and I'm growing a lot of hair in those areas where I've not had it previously. Not an issue being a bloke and already very hirsute but certainly an odd reaction to look out for given Acitretin usually makes hair fall out.
Currently feeling much more positive about outlook. Waiting on hand and foot PUVA (hands/nails aren't great) but at least I can get a normal sock on my left foot and walk in a normal shoe. Not far - it's a prickly hot sensation - but far enough to get something like a normal life experience back.
Posted Sun 26 Nov 2023 14.36 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
I'll ask my dermatologist about this tomorrow but wondering what I should do to treat "normal" plaque psoriasis on my feet? The pustules have cleared but the new skin is forming thin silvery plaques. I'm moisturizing four times per day with Cetraben and I'm on Acitretin 10mg. Should I use one of my plaque psoriasis treatments on the feet? I've got Enstillar or various steroid creams (Dermovate, Audovate, Betnovate)
Posted Fri 1 Dec 2023 20.23 by kiloran (edited Fri 1 Dec 2023 20.23 by kiloran)
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Just as a followup the answer was Enstillar once per day to feet and hands for 6 weeks or until clear. Seems to be very fast acting, I have a couple of clear areas the size of a 50p piece already. I guess the challenge is to blast through the scale to get to the skin underneath
Posted Wed 6 Dec 2023 13.09 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Bit of a setback this week - cellulitis in my right calf. And I thought foot psoriasis was bad - this is like the leg being crushed slowly in a vice when I try to weight-bear. Yet another round of antibiotics - my 4th in four months. Back to bed rest it is.
The Enstillar treatment to the foot plaques seems to be working well with many more clear areas. Some sore patches but it really does to seem to "eat through" plaques rapidly. Every day after showering/soaking I have more areas float off. I think the idea is to get the plaques off and then switch off the process which causes the new skin to form plaques.
A further plus is that I've got my assessment appointment for hand and foot PUVA and will start treatment before Christmas. Twice a week for up to 15 weeks.
2
Posted Sun 10 Dec 2023 15.46 by Paula
So interested to read your story. I, too, was diagnosed with PPP this year, after two and a half years of GP telling me I had a fungal infection! Dermatologist wanted to start me on light treatment, but I was just about to move house and area, so I've had to start all over again. I've been using Flexitol, as it's one of the only things that soothes my skin. I wondered if you'd tried UVB light at all, as I see you can buy these to use at home (not cheap though). I'm just so ashamed of my feet now. Don't feel I can wear sandals or nice shoes any more, which I know is a girl thing, but makes you feel down all the same. Any hints, tips and advice gratefully received
1
Posted Sun 10 Dec 2023 18.21 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
It must be difficult - my feet look terrifying, I think I've probably traumatized my son for life after he saw them at their worst. Most of the time they're bandaged so it's not an issue (other than being agony to walk on!). Once I am back on my feet they'll mostly be in walking boots.
As I understand it I don't think UVB will help because it's the wrong wavelength. In fact it might even do more harm than good. We've got a UV (Vitamin D lamp) which my partner uses in the winter months but I haven't tried it.
Posted Wed 13 Dec 2023 08.53 by Mel
Hi. I've just joined. Thank you for all of the information I'm gleaning about these skin conditions. I'm just reading to learn rather than contributing at the moment but hope that'll change in time. I have contact dermatitis on the palm side of palms and finger tips and sides but after 25 years or more one specialist recently said it is probably Psoriarsis. I'm supposed to be starting a course of Alitretinoin in the near future and hope that this treatment is ok for both conditions as I'm fearful about any side effects or if the treatment isn't beneficial if the diagnosis is wrong.
I'm relieved that some of you here have taken systemic treatments without too many or too severe side effects.
Thanks again.
1
Posted Wed 13 Dec 2023 09.14 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Welcome.
Alitretinoin is supposedly a milder and better tolerated version of Acitretin so it's a good place to start if topical creams aren't working. I've been using Enstillar on my hands at the advice of my specialist and it seems to be working well. By no means clear but definitely different/improved.
Best of luck. Just remember that treatments can take a while to work and sometimes make things worse before they get better.
Posted Wed 13 Dec 2023 13.33 by ravikrishnamoorthy
I have several questions to the research scientist.
Why psoriasis do not effect people live with nature? Why no psoriasis in animals?? Did
Please continue with your systematic treatments that you are undergoing. Psoriasis effected have their own experiences. I observed that Psoriasis in my scalp and legs is decreasing whenever I discharge static current accumulated in my body. I take bath in beach twice a day and sometimes in swimming pool, so that static current is released out of my body. This is my everyday practice. The Psoriasis was spread all over my body before this practice and now its left over in my legs right now.
Posted Wed 13 Dec 2023 16.46 by Paula
Kiloran, I was prescribed Enstillar, but it did nothing at all. Can I ask whether you used it with your clingfilm method? I hadn't thought of that until I saw one of your earlier posts
1
Posted Wed 13 Dec 2023 19.27 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
No. Not under clingfilm but I do apply it under cotton gloves and socks on direction of my dermatologist. You have to be very careful using it under occlusion because it's powerful stuff.
My regime is as follows;
Soak feet/hands in Epsom salts. I stand in the shower in a foot spa
Gently towel dry feet
Apply Cetraben or similar moisturiser
Wait 15-30 minutes
Apply Enstillar
The idea here is that my skin is clean - important for feet with open wounds - with open pores, and well moisturised to soften any plaques. That way the treatment has the best chance to penetrate deep into the skin. You need to deliver the active ingredients to the right layer to switch off the cells causing the plaques and inflammation.
Ideally you want to give it time to soak in before putting on gloves and socks but the treatments are quite oily so they tend to stick to the skin quite well.
As always everyone is different so this might not work for you and please always follow your specialists advice.
Posted Thu 14 Dec 2023 07.55 by Mel
Kiloran, thank you, I've decided to go ahead with an initial pulse of 3 mths; what is reassuring is that with any severe side-effects I can come off the medication immediately and things will settle down quickly. Under occlusion my treatment worked very well but the backlash effect of this was that I have had the nastiest outbreak visually, for a long time on my fingers although strangely not as painful - I'm guessing because this method is intense like you say.
The psychological affects are huge though.
Ravi - It is probable that some of my skin problems started by contact with certain chemicals and I guess in nature animals don't come into contact with chemicals so much, although that's debatable with domestic animals but even in nature animals do get skin problems e.g. foxes with mange..and vice versa, humans are sometimes genetically allergic to natural substances like colophony in tree bark. I think we have become so distant from our natural environment though that we should rebalance things.
Posted Thu 14 Dec 2023 08.38 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Yeah, you really have to watch the rebound..I started with plaques on my back which cleared with Enstillar which I then stopped dead without tapering. I initially thought that was what caused the pustular psoriasis on my hands and feet because that started a couple of weeks after. But then going back through photos I spotted the first signs of it on my feet and hands in June which was when I was just on an antifungal and Betnovate.
Psychologically it's really tough. I've barely got through it and it's put working and personal relationships under strain - which of course doesn't help because there's a stress element to psoriasis! I'm also quite phobic about my feet now and the anticipation of pain is almost as bad as the pain itself. Meditation and positive mindset techniques helping with that.
Posted Sun 31 Dec 2023 23.10 by Yolanda
I’m new to the group, I also have parmaplanter pustular psoriasis. I’m taking apremilast twice daily but it takes time to kick in. I’m under a dermatologist and have endless different creams and ointments which don’t really help that much. I seem to have a flare up every month and this in turn puts me in hospital as it is so painful and I’m unable to put my feet to the ground. This has been going on now for 12 months and it is so debilitating and completely changes your way of life. I honestly can’t remember the last time I had a pain free day.
Are any of you having the same experience
Yolanda
Posted Mon 1 Jan 2024 05.28 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Hi Yolanda, sorry to hear you're suffering with this. It sounds very similar to me, I've had a major flare for the past four months where I've barely left my bedroom (it's about ten steps to the bathroom). Every step agony and my hands are bad too. It's my first onset of psoriasis at 53. If it wasn't for my partner I think I would have been in hospital too, I've needed her to dress my feet twice a day and do wound care etc. Both feet have gone through a very thick peel with many cracks and fissures and sores and I'm also in the process of losing all my toenails. At its worst it's been like walking on red hot razor blades.
I'm slowly improving I think on Acitretin and PUVA, although I've had adverse reactions to both. I've read good research on Apremilast, please do keep us updated. As you say it takes a while to kick in and improve things.
No disrespect to other psoriasis sufferers but I'm not sure people understand quite how debilitating this version is. I have plaque psoriasis in multiple areas elsewhere and other than being slightly itchy and messy with all the flakes it's nothing compared to PPP, I wouldn't wish it on my worst enemy. At my worst I was exploring whether getting my feet amputated was an option, that's how bad it was.
Posted Mon 1 Jan 2024 09.27 by Yolanda
Hi,
I’ve also lost 4 toenails and the others are so thick and nearly ready to come off. My fingers nails seem to break off half way down the nail, yet my thumb nails aren’t too bad.
I too have contemplated asking for feet amputation as I’ve gone from life and soul of the party to almost being a recluse as nearly my whole body 80% was covered in PPP, luckily it’s now more focused on my feet as I have my hands and the rest of my body under control.
Unfortunately my husband can’t help me physically as he’s had 4 strokes but he does support me mentally. I now use a zimmer frame in the house and to get me out (when I’m able) I have a mobility scooter.
To be fair although I’m new to the group and new to this PPP at 64 I’m already realizing that I’m not on my own and it’s great to be able to talk to people with the same or similar issues.
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