Palmoplantar pustulosis-any tips for daily life?

Hi, so sorry you have this, I too have been diagnosed with this and am waiting to see a dermatologist in June. My GP has prescribed Zeroderm for the flakey skin and I am rubbing in Dermovate at night for the blisters. It has got me down at times as I have never suffered with skin problems before but joining this forum has helped. Lynne

Hi Lynne, Went to see nurse yesterday who called in my gp, was in tears throughout, gp was quite shocked at the deterioration since I came off dovubet, now on betnovate, fingers crossed. Gp also going to write to hospital as when I rang to make apt they deferred me to another dr surgery....which would mean I would see the other dermatologist gp from my surgery at another surgery! Apparently the hospital keep cancelling their referrals. This tipped me over the edge yesterday as hospital was my light at the end of the tunnel, so to find out I'd been fobbed off with another gp surgery was so disappointing. Also discovered that the emollient I'd been using in the shower is also a moisturiser! They weren't able to offer any practical advice. Sorry to hear you have it too Lynne, least we both know what the other is going through. Gets somewhat frustrating as everything takes longer! Wondering if I will have to change jobs as I escort visitors to our site, don't want to shake hands with people! McJu

I know how you feel, I was going to the Doctors at least once a week up to about 3 weeks ago as nothing was working. That is awful that you keep getting referred to different surgeries, I was lucky I have managed to get an appointment at the hospital within 8 weeks, the recommendation was to be seen within 18 weeks! but my GP marked it as urgent. I am sorry that you are going through this, it is horrible. I hope you don't have to change your job, have you made your firm aware of it. Lynne

Hi I was diagnosed (by biopsy) with palmar-plantar pustular psoriasis a couple of weeks ago . I'd had ugly lesions on my left sole for over 2 years but no doctor would put a name to it. One told me it was rubbing shoes causing hard skin on my feet. Then it started on my hands. As the others say, it is very ugly and makes me not even want to put my hand out for change when I go shopping. Although I'm English, I live in Germany. The dermatologist here has suggested that it's a side effect of Plaquenil which I take for autoimmune hair thinning. He gave me a strong cortisone cream which causes a lot of burning and says that I should start UVA box light treatment twice a week for 4 weeks and if that doesn't work then he will give me acitretin. I read about Acetretin and the list of side effects sounds horrible and so am not keen. I am thinking of flying over to England in September to see a dermatologist privately. I'd love to know if anyone has any tips on keeping the palms soft, mine split and are very painful, the area affected covers nearly the whole palm. I use Aveeno, Bio-Oil and various urea based creams but they only work for about 10 mins. It's interesting that the other two who write here were also only recently diagnosed. Is there anyone who has had this longer? And does anyone have any experience with using a bluelight lamp at home? Many thanks, Kate

Hi I know how you feel I've got it really bad on both feet and hands. It took 5 months before my gp referred me to hospital. I've had all the creams and steroid creams them light treatment which none never really made a difference. Then was put on Acitren which I've been on for over 4 months can't say it made a massive difference. Then yesterday at hospital was told to stop that then to start taking methotrexate next week, which I can't say I'm looking forward to taking. It just seems to be a no win situation I thought being diagnosed with MS was bad enough, but this PPP is never ending. I hope you get sorted soon and have better results than I have .x

Hi, Recently been seen by another dermatologist who has turned this condition around for me. I'm now in cetraben ointment which can also be added to Bath, it looks like big pot of lard but melts with body temperature. Also steroid changed to mometasone furdate brand name elocon and within one week all my scabby blisters have peeled, skin no longer red raw & I can walk again without limping! I wear cotton gloves all the time as stops me leaving a greasy trail, prevents the horror of holding a manly hand out for change & provides cushioning enabling me to touchtype still. I have found Skechers go walk trainers a god send as they have thick memory foam sole and are seemless, machine washable too! Hope this helps? McJu

Hi, I've had PPP for 9 yrs now. I have tried every lotion, potion and cream. Methotrexate, Actitritin, blue light and the only product that gives any comfort is plain Parafin. Soft white parafin. Keeps skin soft so you can at least walk. Buy it in the Chemist lasts months. Apply twice a day. Nothing else worked for me! I was so disillusioned by the lack of useful help from specialists that I stopped seeing any for 3-4 years. Last week I went back. I am now on a new product called "Cyclosporin" Google it! They have made huge advances medically. Now the docs need to get up to speed with them. It seems to be working!!!! But Im not getting too excited until I see long term results!! If this dosnt work, apparently next step is some drug introveniously administered. Apparently will stop my body sttacking itself, as is yours. Seriously Google Cyclosporin amazing! Light at the end of the tunnel!! Woohooo.

Michelle Good morning & thanks for taking the time to write about your experience. I describe my experience as my journey, it’s developing as I go along. Like you I won’t be beaten, Diet & looking after myself are my priorities. now. I am in a better place now after leaving my career of nearly 40 years. I haven’t forgotten that awful place I was last year & that’s what drives me forward. Love to you all & try & find a light to focus on & take little steps to move towards it.

Hello I was diagnosed with PPP at Easter by a dermatologist who I saw privately as didn't want to wait AT LEAST seven months on NHS. Of course, the person I saw privately (24 hours to wait for appointment) was same person I would have waited at least seven months to see :-) I have "it" on my palms, thumbs, side of heels and underneath heels. Now got small patches starting on sideS of big toes. I've also seen a chiropodist and spoken with a vet. GP prescribed me with every ointment you've ever heard of. Vet said that none of these will ever cure PPP all they do is slow down skin thickening so that emollient creams work more effectively. Vet suggested getting a cream containing cold tar and hoping to collect a GP prescription this evening. Chiropodist said much the same, although feet felt so much better after she'd removed all the hard, scaly skin. She suggested buying a large, good quality foot file and using as often as needed. It's also good for dealing with itches!! She suggested that you can over-moisturise (who knew!) and can use any good quality cream of your choice. Such a shame that we can't see an NHS chiropodist. My daily regimen for the last three weeks has been:- for feet - morning: quick soak in warm water with salt and blob of hair shampoo with coal-tar (I use T-Gel); dry feet and add moisturising cream; cover as much of PPP as I can with dressings (or cotton socks). Moisturise hands. Moisturise hands again at lunchtime. Evening: remove dressings (cotton socks) and any excess moisturiser remaining; get to work with the foot file (carefully, of course) and be pleasantly surprised (or worried!) by about how much dead skin comes off. Quick soak in warm water, salt and shampoo and moisturise. Socks til bed-time. If you use an prescribed ointment, I imagine that this would be the best time to apply it as warm skin will absorb better. Treat palms with foot file and moisturise. If I wake in the night for a pee, then moisturise hands and feet and back off to sleep. For me, any product containing lanolin is fatal - well no, it won't kill me but you'll know what I mean :-) Although it is time-consuming, my hands and feet feel less sore and look less shocking. I too have lived in Skechers Go Walk trainers since Easter but am determined to be back in boots by the end of October.

I have had this condition for 4 years now have tried every cream going light therapy acetertin methetotrexate I have now been given ciclosporin but after reading the side affects (only after experiencing severe headaches and blood shot eyes ) I have stopped taking this after a week as I am now to scared to take it !! Has anyone suffered bad side effects with this drug I am going to guys hospital in November to see a specialist so will leave any medication till I have seen them

Hi all, I’m new to the site and have had PPP for 10 years. Tired everything to no avail, like everyone seems to find. Not so long ago I was prescribed Fucibet, which is a tropical corticosteroid cream with antibiotics. I was advised to use this for 2 weeks. While I followed the advise, I found that all the horrible flaking, pustules and itchy went, my hands looked ‘normal’. I stopped using this 2 weeks ago and have found its back with a vengeance and made the fingertips crack, so much so that it’s very painful to write, per my animals to eating difficult. I’ve seen a dermatologist who I found to just fobbed me off. While im not taking anything to help this or applying any prescribed creams, I’m just using Palmer’s cocoa solid butter to keep moisturised and this is helping to keep the flaky supple to not hurt when they come off, as well as keeping the skin moisturised. I do hope you can find something that works for you. We all know how this can be debilitating. We stand strong together.

Hi everyone dealing with this horrible condition Palmoplantar pustulosis! For about six years ago I got my first blisters in my palms, and then I went to see a doctor and she diagnosed me with Palmoplantar pustulosis. She gave me antibiotics and cortison. That was the worst thing I could give my body. I collapsed inside, the antibiotics killed all my good bacteria in my stomach and my health went down and my hands and feets were misrable. Sometimes I couldn’t walk on my feets and my hands were so sore. After four years I started on a diet, candida diet. And my health came back, I felt strong and all my palmoplantar pustulosis were completely gone for 2 years. In autumn 2017 it came back... because I had started to fail my diet, I ate gluten, dairy products and so on. And I realized I had to go back to where I was before with my diet. I stopped eating the bad stuff and it took 1 week and all the blisters had dried and underneath them was healthy skin!!! I’m so happy, because it works! :) My diet is easy but hard on the same time: I don’t eat gluten, dairy products, sugar, arthificial sugar, E-substances, fast food. I eat food made from scratch, vegetables, clean food, fruits and so on. A woman named Åsa Kärrman has written a book about her way to recovery: ”How To Treat PPP Naturally: Put Your Palmoplantar Pustular Psoriasis In Remission And Get Your Life Back In 90 days”. I’m an living example for that ”wrong” food can make the condition worse but also that ”right” food can heal Palmoplantar pustulosis! I feel for you all and I wish you all good luck!

I’ve just finished reading the book that Malin mentions. I’ve read several books on the subject but the main thread seems to be the same. Whilst reading it it made sense to me so I’m giving it a go. What’s 90 Days, I’ve just spent 104 weeks visiting the Dermatologist & got nowhere so what have I got to lose !!! Will keep you posted

Hi All I have had PPP for just over 16 years now on both feet and both hands. There have been years of remission but for whatever reason it comes back and when it does it comes back with a vengeance. I definitely agree with those who say diet plays a huge part as the longest i have been symptom free is 6 years and during this time i stuck to a very restricted diet. Which involved no protein, carbs, gluten and most definitely alcohol however I had other side effects to the diet i.e losing my hair which made me go back to eating normally. I still restrict myself to a certain extent by limiting certain foods and alcohol as this plays a part in exacerbating the symptoms but sometimes for no rhyme or reason it just explodes. At its worse I couldn't walk and couldn't touch anything without wearing the cotton gloves and was restricted to being home all the time, as someone else has said Sketchers are great as they provide a good support for the soles and you can wash them as i have to moisturise my feet constantly throughout the day. During the night I apply cream and apply latex gloves to my feet to keep them soft so I don't itch or catch on the bed. It looks ridiculous but it makes a difference I swear ! I also wear rubber gloves when doing any kind of washing/cleaning as chemicals can make it worse and dry out the skin and if there is one thing which really gets to me about this condition its the itching !!! No one who doesn't suffer this can possibly understand just how bad this can be but i wouldn't wish it on my worst enemy ! Anyway, the things which have helped me over the years are not the prescripted drugs but clean living, sunshine (not PUVA as that does nothing) , the sea and no stress.

Hi everyone , Iv had PPP for five months now and its been hell ! So i take my hat off to the people who have had it much longer. Iv used every steroid cream / ointments offerd to no affect . Iv had to go private as the NHS has been awful so far . I got more information and compassion in one hour with the private dermatologist then i have with four Gps and two NHS dermatologist in 5 months. A month ago i decided to change my diet as i thought it may make a difference and it did . Just cutting out white bread , potatoes, dairy and red meat and i noticed a real difference , specially the itching and pain ! . I also use virgin coconut oil in the bath which gives much relief to the dryness and flaking. At work i use dermavate ointment . Slap loads on then cotton gloves and then vinyl gloves on top , My feet are not improving as much as my hands but like a few have said sketchers are the way to go !! They have been a god send as im on my feet all day . Just wanted to ask if anyone has any thyriod problems ? as im boardline and i was told it could be linked .

Hi all, I started this thread about a year ago & thought I would share what I've discovered so far. I can only speak for what has worked for me and am not medically trained. Dr's whether NHS or private have been pretty much useless. My friend who has had lifelong eczema and AS has offered lots more practical advice! Mometasone is the only steroid cream to touch it, but use sparingly, no more than fingertip amount for each foot & share for on hands. Only use for a few days when blisters appear then stop. Don't bother with emollients, as I discovered from this sites newsletter there is such a thing as over moisturing! Avoid all chemicals, so long bubble baths! I had to get a cleaner in to do housework....every cloud & all that! 😜 Dead Sea salt in the bath did help, until the psoriasis got under my toenails then it just killed! Have just been referred to podiatry as my nails are thick & horrific! I no longer wear gloves. Blisters are only occasional, yet last October I was debating getting a mobility scooter as could only stand for brief periods & walk no more than 5 mins max! Don't bother applying for PIP, apparently not being able to stand/walk/grip/cut/chop is not reason enough! However according to my Occ Health is does qualify as disability. Don't be a martyr, fight for reasonable adjustments & take time off if you need to. In short, now I largely neglect my condition (apart from trimming dead skin....cos it catches on everything!), when I get a blister flare up (last one triggered by alcohol), then I apply small amounts of steroids for a few days & hope that's all it will take! Drs can't tell me how long it will remain like this (in the main I go straight to peel stage & largely miss out the blister stage of the blister/peel/repeat cycle). Without the blister stage & without the excess steroid treatment I feel I have some semblance of my life back! Yes my flip flop & nail polish days are over as my feet (& hands) look like they've been dipped in acid & my nails are grim, BUT that's nothing compared to where I was about 7 months ago! Good luck ladies (lets face it, it's another thing that mainly affects us females) & invest heavily in Skechers! McJu Xxx

I am grateful to read your experiences. I have PPP for 4 months. Dermatologist, ER doctor, Allergist then Rheumatologist who did DNA markers in blood work. Meanwhile I searched the web and compared photos and learned what it was before the tests confirmed it. I have Alopecia totalis for 35 years, it’s is an auto immune condition that causes total hair loss, PPP is another auto immune condition. When you have one auto immune condition, a second one is more likely to appear later. I experienced the painful cuts in my feet that felt like stepping in razor blades with every step. I tried every cream available and found one that worked. Aquaphor. It’s over the counter so available anywhere. I buy big containers and then a tube for my handbag.. It takes a week for the cuts to heal by applying the cream multi times a day. When it stops feeling like razor blades and more like stepping on nails you know it’s improving. Very thick cushion slippers help with walking. I applied Aloe leaf to the cuts by removing the skin of the leaf and making slices in the aloe so it released its gel. Putting my feet on frozen gel packs helped with the pain and inflammation. Then apply the Aquaphor and cotton socks. You must spend time daily tending to your feet. Just have to do it. Can’t let it get out of hand. I do long lukewarm feet soaks with Epsom salts. Love the ones with scents. Dry and cream my feet the loose cotton low socks. Cut the band in a V so not tight. The next day, the thick skin will be ready to come off. Go gentle. Do this every other day till you remove all the thick overgrowth of skin. 3X a day cream your feet. Your hands multi times a day. Keep cotton socks on them . For dress shoes use cotton liners. Once you remove the thick skin it’s easier to manage your skin with the Aquaphor cream. Stress seems to be a trigger. I’m going to try the diet suggested. Makes sense to me. So glad not to feel alone in managing this. By the way, I’m allergic to most all medication and NSAIDs so I only have the option to try natural stuff. Reading how the medication hasn’t worked reassures me that I didn’t lose out on some medical breakthrough solution. The Rheumatologist was honest and said there is no medicine only management of symptoms.

Hi everyone, I had palm psoriasis for about fifteen years & told by specialists that it is a life long condition, that the skin on my hands grew 10 times faster than anywhere else & just keep using all these creams !! Well about a year ago my hands were split & bleeding so I got an emery board & worked on the thickened skin to remove it then used sorbolene cream. I kept doing this when my hands started to thicken or crack about every week at first then less often. Now my hands are absolutely normal!! I ALWAYS wear gloves when cooking, washing up, gardening, cleaning etc etc just in case. It has worked for me so I hope I can help someone else with such an easy remedy.

Does anyone else have burning of their feet and hands with this condition, hands are really itchy at the moment not sure if I'm over moisturising. Really not sure what to use on hands, waiting to see gp again just had uvb on feet and then hands flared up. No follow up with dermatologist is this normal?