Palmoplantar Pustular Psoriasis journey

Hi Kiloran I’m seeing my dermatologist on 11 January and will definitely be asking about the score chart. Hopefully there is something out there that will give some relief if even just for a day, I’d be so happy to have one day pain free. Thank you for the info

Hi guys Could any of you tell me what pain relief works for PPP please. Morphine and 2 paracetamol aren’t having any affect on me other than making me itch more. I’m at my wits end with constant pain and itching TIA.

Where in the world are you Yolanda? I just take paracetamol or paracetamol and ibuprofen combined, although I've had to stop ibuprofen due to my PUVA treatment. If you're in a part of the world where cannabis is now legal possibly some of those CBD preparations might help. I found even just using a hemp-based shampoo stopped my scalp itching.

I’m in Kettering northamptonshire little town in England. Not sure if cannabis is legal here. I will look into CBD preps on line see what I can find, thank you

Yet another flare up this time my arms and legs, I’m coping with thii ou se but my feet are excruciatingly painful so that’s another night I haven’t slept. Argh!!!!

So sorry to hear that. When mine were at their worst I found elevating them helped - I slept with them for a few nights on a beanbag. A heavy moisturizing ointment (40% paraffin+) like Epimax or Doublebase under socks helped too

Thank you for your reply kiloran I will definitely try that too

This condition is brutal at times. I'm flaring from being barely able to walk along with swollen and split hands to being almost totally clear on about an 18 day cycle. 23rd December full flare 10th January almost clear 12th January full flare 29th January almost clear 30th January full flare Today it's gone from being able to walk pain free down the garden at 7am to visit the chickens for the first time in months to agony at 11am. At least I know the worst symptoms will pass given time. I think I might noe truly understand what women with menstrual problems put up with!

Five days on and my hands are the worst they've ever been - deep fissures across both palms following the major lines and also split fingers. On the plus side, I've been approved for biologics and start in a couple of weeks just as soon as the home visit can be arranged.

It really is a rapidly evolving cycle. My hands have been so painful but now it's like I've got a brand new pair. Thick dead skin covering full palm and all fingers down to the knuckle which is cracking and peeling off revealing clear pink skin underneath. It's like I've dipped my hands in plaster of Paris or glue and it's slowly cracking and falling off. If I moisturise it's absorbed within about ten minutes - even 40℅ paraffin ointment. Just a day ago I couldn't flex my thumbs and forefingers, they were too swollen. Also couldn't feel my fingertips due to the thick scale which I could push in like bubble wrap.

It’s awful isn’t it. I get this on my hands and feet and whilst my hands cleared reasonably well my feet after 12mths have still not healed. I have to wear gloves all the time as the air makes my skin crack and peel within minutes. I wore sneakers today the first time in 12 months instead of my bedroom slippers, my feet are paying the price now but I shall persevere with it. Sounds strange but I use to be a size 3 uk shoe size but now need a 5 uk, it must be the thickness of my toenails and slightly swollen feet. Hope your skin clears quickly Kiloran

prince.songsong@gstt.nhs.uk DermatologyTrials@gstt.nhs.uk For anyone interested, I've just received an email to say there's an open clinical trial for plaque psoriasis about to begin at the St John's Institute of Dermatology, Guys & St Thomas Hospital, London. The first email address is for Neil Songsong, senior clinical research practioner. It might be worth trying

Hello everyone, My name is Ana, I am from Serbia (Europe). Sorry for my english. :) I am diagnosed with palmoplantar pustulosis two months ago. My symptoms start back in November 2023, but to be honest, I have a small spots during winters from 2017. I would use some emoliens and thos spots disapeard very quick. Last year it wasn't a case. Before I ask some questions, I would like to point some facts about my self and possible triggers: 1. I am a female 2. 43 years old 3. Smoker 4. Gave birth 5 years ago 5. Used to take various recreative drugs during my youth (weed, xtc, speed, cocaine and lsd) but I am clean for more then 8 years now 6. I like to drink beer, and even if I am not a clinical alcoholic, and alcohol didn't ruin my life, I consider my self to be an alcoholic since I have a syndrom of the first glass. I have cut my drinking but had several beers last weekend and my pustules gone crazy after 7. I had my gallbladder removed in 2023 and I didn't follow a healthy diet after and that maybe affected my liver function. 8. 2022 was extremly stressfull for me because of my job. Extremly. I gained weight from 2021, like 7-8kg and I am one step to be overweight (according to BMI). So it is not catastrophic, still I have a lot of viscelar fat. 9. I had a miscarriage in August 2023. 10. In summer 2023 I have started to feel a bad smell in my nose when I sneezed (maybe a leaky gut have smothing with this funny thing). Sorry for the long list, but I was trying to figure out what can be my main trigger and maybe some of you will find simillar thing on your list. I will continue a little bit later.

Continuation. ;))) I have PPP on my left palm and left sole. First I was treated with dermovate, but in that moment they were not sure if this is eczema or PPP. Then, when PPP was diagnosed dr. Presribed a very strange cream which is something like a local chemotherapy and it requiered a lot caution when it was applied. I have gone through this forum and didn't found anyone with that perscription. Name of the cream is Cignolin and the active substance is Ditranole. I was not feeling comfartable using this therapy and I visited a different dermatolgyst, a very old guy with a very good reputation here in Belgrade. But he done nothing except giving me another steroid therapy, which helped first two weeks, and then nothing. So I am currently in the middle of flare up, and my foot start cracking last Tuesday, so I am stressed up and afraid. Going to visit the old guy on Moday again. And additionally I am on antibiotic therapy for over a month, I am taking Dovicin. I would like to start a diet. I just read Asa Karmman's book. Still I am confused about how to start since AIP protocol is very strickt. Since this is the only live chat on PPP I would suggest if each of us can post regulary, so we can support and advice each others. :) <3 I will get back to you Monday evening CEST with a new info and possibly a new therapy.

I'm spamming a bit now, but I hope that's okay with you. A month and a half ago, I started drinking a teaspoon of turmeric with black pepper in lemonade, every morning. I also drink ginger root tea, I started taking special probiotics for skin problems called Latopic, and I take vitamin D3 2000IU one. daily. I exercised regularly, strength training with weights, but I took a break for 5 days because of the bad condition of my feet. Asa Karman recommends a bunch of supplements, so I'm interested in what you think about supplementation and whether you've thought about using CBD oil orally, which I saw in one of the topics on this forum. If you are interested in the list of supplements, I can copy it from the book and post it. @kiloran have you started with biologics and if so, what were your experiences?

Hi Ana, Dithranol is quite an old treatment. Effective but very messy so it doesn't get used much now there are better options. I think I'm slowly recovering - my feet started getting better in early March and are almost clear. Still can't walk very far and need to be careful as I lost all my toenails. This was before I started biologics. My regime was Diprosalic to break down the plaques and Dermovate for any clear areas. Once per day every day initially and then every other day. I was also put on low dose antibiotics (penicillin) to stop the regular leg infections (cellulitis) that I was getting. Initially I was using Epimax 40% paraffin ointment which did a great job of loosening the plaques but eventually it was too thick and strong and started causing swelling and irritation. Now using Doublebase gel which is working wonders particularly on my hands. My feet were already getting better when I started on my biologic (Adalimumab). I'm now five doses into that and I think I'm seeing improvement on my body plaques (knees and elbows and shoulders particularly). But I don't think it's making any difference to my feet because they were already almost recovered when I started. My hands are still my biggest problem but I'm cautiously optimistic about them. Plaques almost clear, no open wounds and I've been able to break the itch/pick/swell/split cycle. I'm putting that down to the biologic because I'm only using Doublebase gel on them. I've cleaned up my diet a little, adding plenty of nuts and fresh berries, live yoghurt, and more vegetables. Cut out citrus and alcohol and reduced tomato and potato intake. I think it helps, certainly my gut is healthier and more predictable. I've lost 7kgs since September but I think most of this is muscle wasting from losing my cyclist's legs. I take garlic, wild oregano, omega oils, turmeric, vitamin D3 8and glucosamine every day and I'm also using Amitriptyline to help with itching overnight. Tried some CBD cream but it didn't seem to do anything. So sorry to hear about your job struggles and miscarriage, these things can be stress triggers for a first onset or flare. Best of luck with your appointment. If you're not intending to get pregnant then see if he will prescribe Acitretin - it's cheap and works well for a lot of people. The best biologics for PPP are interleukin blockers but are still in patent and therefore very expensive. I'm only on Adalimumab because my consultant needs to try it and have it fail before he can prescribe a better option.

I had an examination today and I have to admit that I am disappointed with the approach of a dermatologist who is reputed to be one of the best in the city. In the meantime, my foot calmed down and apart from the redness and peeling skin, only a very thin skin remained. But that's why my palm has gone wild since Saturday. I have some deep pustules coming out, Those are red and itchy, worst flare up so far. The dermatologist asked me what I was doing and whether I had stopped using the corticosteroid he had prescribed. My job is not physically demanding, I sit at my laptop most of the time, and I work mostly from home. He asked me about housework, I said that I do it in nitrile gloves, as I was told at the state clinic, and he personally didn't tell me anything last time, he was shocked!!?? Really didn't know that I have to wear only cotton gloves, I am new with PPP. For everything that the doctors do not say, it seems that we ourselves bear the responsibility. The examination and the creams were expensive, both times. Long story short, he prescribed me another cortico steroid, this time an ointment and banned a bunch of other things like exercise and walking. He recommended that I possibly visit a psychiatrist, so that I could get some axiolytic. And that's it. I've started a gluten-free, sugar-free, low-carb diet and all my supplements arrive on Wednesday. @kiloran Hope you are doing good these days. I just cant imagine life without nails. :(

Hi folks, Glad to have found this forum - I was diagnosed last week and the advice and stories here are invaluable already. My PPP came on back in January, so about four months ago. I had just moved to a new rental and soon noticed and felt the painful scaling on my feet and hands - I presumed I had caught something environmental from the previous tenant from the carpet and surfaces and since it looked like what was described as athletes foot on a Google image search, I self medicated for a month with over the counter antifungal cream and spray. After nearly a month of no improvement and some days where I couldn't walk without pain, I asked for and luckily got an emergency GP appointment. The first doctor prescribed me more antifungal cream for another month which didn't work. The second GP prescribed a stronger antifungal cream but was not convinced that it was a fungal infection at all - he thought it was PPP and requested an urgent appointment with the dermatologist - my appointment came through for six weeks later and in the meantime I still had to keep taking the stronger antifungal cream (containing the steroid clobetasone at a fairly strong dose) - the week prior to my dermatologist appointment six weeks later I was crippled with the pain from the scaling and deep fissures that had developed on my feet (to a lesser degree on my hands but still painful enough for me to keep dropping things). Throughout this period, it's somewhat fortunate that I have taken a career break for unrelated personal reasons as I don't believe I would have been able to sustain a work life in the condition I got to prior to meeting with the dermatologist - I am very fortunate that my husband was around to do all the shopping, dog-walking, cleaning etc. and help me to the toilet and to bathe. The dermatologist confirmed PPP immediately via a visual assessment only. She talked me through a few medication options which included oral ciclosprorin, but was hopeful that I would see immediate improvement with application of Dermovate cream daily for the next 6 weeks at which point I have another appointment with her. She asked my family history of skin conditions and arthritis - I confirmed no skin conditions that I'm aware of but yes, my mother had very bad arthritis (among other comorbidities), and father had a relentless history of cardiovascular disease and treatment including a heart bypass. She could see my medical records showed that a few months prior to the PPP developing, I had undergone an extended treatment of tetracycline for an aggressive breast abscess and had been diagnosed with extremely high blood pressure during this process too so I'm now taking an ace inhibitor (not a beta blocker), and she insisted that there is nothing I could have done to prevent this happening (since I had been so worried for so long that I had a fungal infection). Prior to the breast abscess, I had undergone significant psychological stress over a number of years and so at first, I put all my medical issues down to stress as the trigger, including the PPP. However, on reading the scientific literature and forums like this over the past week, I'm now postulating if the trigger was the high doses of tetracycline and blood pressure tablets shocking my immune system and subsequent inflammatory response. Incidentally, after the breast abscess, I went cold turkey on smoking cigarettes having been a fairly heavy smoker for over 25 years, so there could also be a link there in that the sweat glands on my palms and soles had been saturated with nicotine having immediately stopped smoking at the same time I was put on the tetracycline and blood pressure tablets. These are presumptions of course but I do have a science background so am surmising this from the patterns I see in both my PPP journey, the scientific papers and forum posts describing people's own experiences I have read, and do believe there is some strength to these conclusions. I have also had referred pain to my right hip joint due to my gait changing to compensate for the pain when walking which has exacerbated an old injury where I tore a ligament at the base of my spine five years ago. Within two days, the once daily application of the clobetasol cream (clobetasol not clobetasone, clobetasol is a stronger steroid) has already started to work as the dermatologist said it would and I've been able to walk my dog for the first time in two weeks. I am combining this with use of prescribed Zerobase emollient a few times a day and have reflected on increasing the amount of antiinflammatory foods I consume. Psychologically, I'm already feeling much better and hopeful that this will last. When I see the dermatologist again in six weeks time, I will be asking her opinion regarding the tetracycline and blood pressure tablets as a causal factor and will report back here then. In the meantime, I hope my journey has been useful information for others who are out there suffering this terribly debilitating auto immune disease - I for one am very grateful to have found this forum so early. All the best for now.xxx