Palmoplantar pustulosis-any tips for daily life?

Hi all! It’s been one month since I stopped the beta blocker. No NSAIDs. So, do you want to know?? I’m so pleased with the progress. I am feeling happy again. I honestly was deeply depressed over being hopeless and disabled in my feet and hands. It was impossibly painful to walk because it felt like razor blades in my feet. I couldn’t touch anything, not even water because my hands felt like shards of glass in them and the skin tore so easily. I couldn’t do anything without gloves. So stopping the beta blocker was the right thing to do. It took 3-1/2 years to become toxic so it’s going take some time to detox. But my hands and feet do not hurt, My feet are no longer swollen. Water doesn’t hurt! I can walk around and touch anything. You’d have to look to see the pinker spots on my hands. That’s the inflammation. So what I’ve been doing is having acupuncture once a week, drinking detox tea, and in the morning I put 2 tablespoons of apple cider vinegar with the mother in a glass of mineral water with Honey. Sorta tastes like spicy ginger ale. All that is to detox. Then for the inflammation I take Curcumin. You can find in a health food store. Read about it. The science behind studies supports that it reduces inflammation. That’s the biggest part of this darn condition. All the symptoms are a result of inflammation. It took me months to know that. So the cure is stop what’s causing it, detox and reduce the inflammation. The cream that helps me survive is Aquaphor. I had to put it on about 25 times a day to reduce the pain and soften the cracks. Now three times a day is enough. I was feeling so hopeless and now I feel so happy and hopeful. Honestly the loss of hope is as bad as the condition. You just gotta believe there’s an answer for you and you can beat this! Big hugs to all of you! XO

Hi Connie, it’s interesting what you’ve discussed re beta blockers and I’m so glad you have mentioned this in this forum. I was taking beta blockers around the same this condition started on one foot. However, I was probably only taking them 2-3 times a week. The last time I took some were a month or so ago. Do you know how long they take to leave your system? I’m having PUVA treatment atm but it’s not helping and the immense itching phase has started again. I’m guessing my next hope is medication but I’ll be reluctant to take it for fear of having YET more side effects! I just wonder if when the beta blockers are out of my systems i May have a better chance of knocking this condition on the head. Also just wondering if anyone has had it and have gotten rid of it and their skin has gone back to normal, even if it’s only for a few years?? I can’t see the skin on my feet ever getting back to normal and it’s making me feel very depressed. Thanks in advance.

PussOff, I’ve been off beta blockers for almost a week now. I haven’t seen any changes yet with my hand, but I’m also going for allergy testing this week to see if something might be triggering my condition. Need to be off beta blockers for proper allergy testing. My symptoms are possibly eczema/psoriasis on my hand, joint pain, and tongue sores. I plan to keep this board updated with my progress.

Cattango, thanks for your reply. It’d be great to hear how others progress. I will not be taking beta blockers again and my PUVA treatment is due to end in a couple of weeks and it’s only until after this that I can see the dermatologist again, which could be in 4 months!! I can’t wait that long :(

Hi PussOff, I’ve been off the beta blocker for 6 weeks. But I am actively trying to detox. I’m getting Acupuncture twice a week to detox. Also daily take 2 tablespoons of apple cider vinegar with the mother and honey in mineral water. I’m only drinking mineral water since it corrects your body’s Ph to be more alkaline. My constant dry mouth ended. My skin is feeling more moist. Drinking one cup coffee in am then detox tea at other times. I was tested for all allergies and nothing turned up. Drinking plenty of water is important to detox. Plenty of sleep. Very important is not to let this discourage you and lead you to feel hopeless and depressed. It’s horrible and painful and I went down that dark path. Stay hopeful. This is reversing. It’s slow. Inflammation does damage you see and damage you can’t see. It takes time.. I’m seeing the inflammation reduced. I’m taking Curcumin for the inflammation. Also eating foods that help like pineapple and blueberries. Note changes with your phone camera, make notes. It’s hard to measure changes from memory. Photos are a great way to document your changes.

Thanks, Connie It’s when the cycle starts all over again after having thought it was getting better that makes this condition so hard to deal with. The itching / soreness has begun again and I just feel at my wits end now! As I’m sure you understand. I do however need to drink more water. My diet is not bad, but making little adjustments can only help I’m sure. I’ve never heard of Curcumin so will check it out. Thanks for help. I’ll update any improvements. All the best with your ongoing fight to get rid :)

PussOff Yes, you said it exactly! It’s the day to day management that wears on your spirit. That’s when we have to have an outlet like this forum to express what we are dealing with without having to look at the faces of friends that need an explanation from the beginning every time they ask. We here all get it. As far as day to day management we all find things that work. I bought lots of pairs of these thick cushions house slippers that eased the pain which I can best describe as feeling like razor blades in my feet. And this cream that I would apply about 30 times a day during my worse times. Aquaphor. Here’s a link to it. https://www.ebay.com/p/Aquaphor-Advanced-Therapy-Healing-Ointment-Skin-Protectant-14-Ounce-Jar/2144994658?iid=273406020708&_trkparms=gclientid%3DSpoRpX_ryNbQdzjY55OQS9xZWTBAA4ADcxo5_P0KWmVGM7I7mVVyXUnYSl-yLKEy&_trksid=p2489528.m4324.l9588 I apply it to my hands and feet. I buy boxes of nitrile latex free gloves and change them often. I put some in plastic bags and keep in my car, handbag, etc. Making good choices in food and avoiding things we know aren’t beneficial. And some kind of exercise. At my worst I couldn’t walk or touch anything. But just moving to music you love is enough to make you feel wonderful. When you can, dance. Sounds nuts but feeding your spirit is equally important as feeding your body. Find your joy. It will sustain you though this and keep believing that you will overcome it.

Connie, Was the Beta Blocker, atenolol giving you any sort of joint pain? This is something accompanied with my PPP along with tongue sores. Went to an ENT for the tongue and was told it’s inflammation. My PPP seems to only slightly get better, but the joint pain and tongue sores come and go.

Hey everyone, thanks for sharing your experiences on this forum. I was diagnosed with PPP about 5yrs ago, it was pretty severe, I had to be hospitalized. It was unmasked by humira that I was given to try and treat a rheumatoid arthritis flare up. I ended up getting 3 types of psoriasis all over my body, apart from my face, until I was put on weekly 50mg Enbrel shots, alongside diet changes, no drinking, no smoking.. Eventually everything chilled out and I would only get occasional flares that would be tempered with topical steroid ointments. This was in Australia, now I live in the U.S. with a significantly less compassionate health care system. My hands and feet have been flaring up again, my diet is not so clean as before, stress is higher, I don’t see as much sunlight, and I’m currently working as a baker that has moved over into artisan bread 🙄 ...I know. My hands are constantly in contact with water and flour. And I have not been in contact with a dermatologist since moving here. But, I wanted to share my experience as I randomly found a over the counter topical treatment that helps. I still was regularly applying the steroid ointment 2-3 times a day, but I had the 3 day cycle of calming skin to blisters under the surface. Until while I was on vacation with a friend and my feet were so bad I was in pain and having trouble walking, I desperately grabbed this cream at a big supermarket/department store. I had relief in days. The cream is called ‘ Psoriasin - problem skin formula - cream with botanicals & vitamin D3.’ In combination with regular moisturizing and application of a barrier cream ‘gloves in a bottle’ plus wearing actual gloves while working, I have found signicant relief! I recommend checking it out. I have an upcoming appointment with a dermatologist but until then I’m very grateful this is helping.

So true, Connie! Good to know I’m not the only one at least. And reading other people’s experiences and remedies help.

Thank you to everyone on this forum. I was diagnosed last week after 5 month of struggling to walk. Thank you for advice and the knowledge that I'm not alone.

Hello PA forum team, I am a podiatrist, I only joined this group today as next week is international psoriasis awareness week and I wanted to see if could help spread awareness by writing about it on my social media channels and website. I thought what better place to get inspiration from but a forum specifically for it? And you definitely have inspired me! Im utterly stunned to see so much on PPP, I have seen it in my career (I wont say rarely, but it is fairly uncommon in a standard clinic setting). So to come on hear and read all your stories is amazing and great to see how you help each other. One of my colleagues, Ivan Bristow is a specialist podiatrist in skin disorders and he wrote this blog on PPP which you might find a helpful read. :- https://www.foot.expert/single-post/2018/03/02/Palmo-plantar-Pustulosis---a-different-disease-to-psoriasis hope you find it helpful thank you Dianne

Hi lovely people, I've had ppp since my menopause started (yay! As if menopause wasn't enough to cope with!) It started in a fairly minor way and just affects my palms and the arch of my feet. The pustules often seem to appear in patterns. They're quite minor on my hands, mostly, and worse on my left foot. I found that putting plasters on the pustules allows them to become massive and that bursting mine when they're still 'active' doesn't help. Also that exfoliating leaves painful craters in my skin, although of course,I still do it because there's no other option. Sea swims, though gorgeous and therapeutic, didn't help mine much. I self diagnosed as first doc didn't know what it was, but just offered cortisone, which I'd had to use for skin allergies in my teens, so didn't want again, now I have doc who recognises it but again prescribed coal tar (leaflet in box said under no circumstances use with ppp) cortisone (leaflet said may cause ppp) and parafin moisturiser. I used moisturiser only but it didn't seem to do much. I've found that organic Aloe Vera gel really really helps lately, very soothing if kept in the fridge, it takes away all the redness although I think I'll start using organic coconut oil too as I still need a moisturiser. I'm a stupid smoker but haven't managed to address that yet. I found a research paper which was difficult to understand but did suggest thyroid issues - parathyroid hormone? And disturbed calcium homeostasis? None of this means much to me so I'm intending to ask my doc about it, I'll tell you what I find out. In the meantime I've recently cut out gluten, which has improved how I feel generally but no change in ppp yet. I'm hoping to see a dermatologist who will have an holistic approach as surely this isn't just skin related.. I've recently seen a great response from applying turmeric locally to an inflamed wound so wonder if I apply it to the ppp would it help? If I can cope with having bright yellow skin along with the ppp! I also drink kefir daily. My gut feeling is that I must be able to affect this disease with how I live my daily life, and with the constant barrage about the impact our daily demands are having on the people and environment worldwide, I've decided to just eat locally, minimum processed food etc. I've read that scientists speculate that ppp isn't related to psoriasis. Who knows. Loads of love to you fellow sufferers, thanks to you all for commenting too, We're not alone in this., if we pool our findings maybe we can find a way out of it. Thanks again x

Hi all! I’m a fellow ppp sufferer and have been since Feb/March time this year. Both my hands and feet are affected and have both been in a constant flare of pustules since then. I’m under an NHS dermatologist who’s just referred me for light treatment after prescribing Enstillsar as a last steroid resort. My next at home try is the AIP protocol diet... though it’ll be hard with being a single mum on low income. I’ve given up smoking, though I do still have a few social ones that I need to give up! I’m on a ppp group on Facebook (the worldwide one with 1600 members) which is good for tips & tricks to help ease symptoms. (I’ve found daily 30 min ACV & Epsom salt soaks to help) I’ve also read, in a lot of places, that they’re not sure whether to class it as a disease in its own right. As characteristics aren’t the same as psoriasis. I hope you all find a treatment that works for you and that your symptoms ease soon. I know how hard day to day life can be with this. But we’ll all get there. Have a look at the APRICOT & PlUM trials if you can. It’s an NHS funded research project into ppp and gpp. With clinics nationwide. I hope to maybe see some of you in the support group if you’re not already there. There’s lots of information. Thanks Sara x

Hi everyone! I was just diagnosed so I'm in the denial/ research stage. I'm so glad I found this site but I'm not going to lie...I'm pretty freaked out now. I was hoping to find the secret to making this all go away. I have a little on my feet but my hands are bad. I am a hairdresser who has had to quit working because of this. My life has taken a complete 180. I'm a 54 year old women who thankfully has an amazing supportive husband and family so in that way I'm blessed. I just have so so many questions! I want to go about the healing of this as naturally as I can. My Dr. is pushing Humira. I'm researching that now but everything I've read doesn't sound very promising. My Dr. said it would calm it down but not make it go away? She also said that when I stop giving myself shots it will come back? Does that mean I'll have to be on it for the next 30 years? UGH... Here are some of my questions: Are mostly women affected? I also have ulcerative colitis. Do most of you also have it? I've only had 2 flare ups in 20 years and I'm not on medication for it. I'm starting menopause, could that be a reason i have it? Has diet helped? I've been gluten free for 8 years, eat healthy and exercise regularly. I also have a rash all over my body, mostly my trunk, thats itchy. Is that normal? Has anyones psoriasis ever gone away? Even for a short time? I have a million more questions but I will keep researching. Thank you in advance! Good luck to all of you out there! Nancy

Also, thank you sillytilly I've just joined the facebook page!

Hi Nancy, apparently most sufferers are female, lucky us!! I'll go look up the fb group too, thanks to the lady who told us. I'm only doing natural remedies too, thankfully just my left foot is bad, my right, and palms are quite calm just now. I've booked in at docs on Monday to check my thyroid and calcium levels, will post the results here. I've found aloe Vera gel to be very soothing, I'm also freaked out by this, I believe mine came on around start of menopause but then I'd just had a triple miscarriage and so followed some years of high stress and depression. I'm 48 now and the depression has lately gone so I'm wondering if the ppp will calm down. Good luck to us all xx

Hi everyone, I have suffered from PPP for 18 months on both hands and the right foot, ts horrendous at the moment I have the deepest split on my heel and several pustules on both palms. The itch and pain is unbearable with flare ups. I am under a Dermatology clinic and have had every Hydrocortisone cream on the market, but nothing has worked. Yesterday I spoke to a pharmacist who recommended trying an ointment called Cocois, it's coal tar, salicylic acid, and sulpher in coconut oil, Its normally used for scalp psoriasis and I applied it three times yesterday and I have to say there is a slight improvement at the moment, definitely eases the itching and seems to be exfoliating the ugly thick skin flakes. It's not cheap at £11.00 a tube, but I will pay anything at the moment to get some relief I will enquire if it is on prescription. This condition is awful and I am so relieved to know that I'm not alone with the condition, thanks to all of you for your advise and expertise, so glad I have joined this forum Nana Sue

Hi Everyone, I was diagnosed a year ago. after trying several topical creams, I have been on a monthly 2 injections of Cosentyx taken together 300mg. Cosentyz is an injectable pen similar to an epi pen. After 3 months, I was 90% cleared, and I had a very bad case of PPP on my right palm and both feet. Mid December, I believe the cold weather is a trigger I noticed blisters reappearing for the first time. I have an appointment with my dermatologist next week. I was so hopeful the injections would stabilize this disease, and now I'm not so sure. Luckily, I don't see the blisters multiplying as before when they first developed a year ago. Just wondering how many of you have tried injections?? Karla