Palmoplantar pustulosis-any tips for daily life?

Posted Tue 30 May 2017 12.19pm by McJu

Hi,

I've recently been diagnosed with this horrid condition & could do with some practical advice on how to cope with normal activities.

This condition starts with small blisters (pustules) that feel like shards of glass, they dry up & peel which results in very flaky skin that gets caught on everything. Then it all repeats resulting in very sore hands & feet.

Never realized how much you use hands for until this, don't like asking people to undo stuff for me, or hubby doing all cooking etc.

Any help gratefully received as it is getting me down.

Thanks

Posted Tue 30 May 2017 8.19pm by Lynne

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

Posted Wed 31 May 2017 7.38am by McJu

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

Posted Wed 31 May 2017 5.24pm by Lynne

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

Posted Mon 24 Jul 2017 11.26am by Kate

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

Posted Thu 27 Jul 2017 11.55pm by Janw

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

Posted Fri 28 Jul 2017 10.24am by McJu

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

Posted Sun 30 Jul 2017 2.16pm by Debinbris (edited Sun 30 Jul 2017 2.27pm by Debinbris)

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.

Posted Mon 9 Oct 2017 8.44am by Sue P

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.

Posted Mon 23 Oct 2017 3.10pm by Helen Evans

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.

Posted Tue 24 Oct 2017 8.29am by Jane p

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

Posted Fri 10 Nov 2017 8.19pm by Charlene841
Hi, I’ve been a sufferer of PPP for 10 years.

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.

Posted Fri 5 Jan 2018 7.46pm by Malin

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!

Posted Sat 13 Jan 2018 10.06pm by Sue P

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

Posted Tue 23 Jan 2018 2.48pm by amanda_Dev

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.

Posted Sun 27 May 2018 10.56am by Tflake

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 .

Posted Sun 27 May 2018 6.41pm by McJu

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

Posted Sat 9 Jun 2018 7.31pm by Connie

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.

Posted Mon 11 Jun 2018 1.22pm by Lorna

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.

Posted Mon 11 Jun 2018 9pm by SheilaM

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?

Posted Wed 20 Jun 2018 9.10pm by Amandae

Hi. I agree this is an awful condition to have. I have had psoriasis on my hands now for a year. I was referred to a specialist in august last year for uvb treatment but the waiting list was so long that during the wait my psoriasis got so bad that I couldn't stretch my hands out. I eventually ended up with cellulitis. After a couple of courses of antibiotics this was cured but my hands were still bad. I got an earlier appointment at the specialists who recommended accetretin. I started taking this in January. It helped a little. Shortly after I started the uvb treatment which was working OK. I could stretch my hands out for the first time in months. When I got to treatment times of 4 minutes though my hands couldn't take it. The accetretin was blamed for this as it is light sensitive. My hands are now worse than ever. I am probably going to take mexodrate now. Appointment next week. Fingers crossed!

Posted Wed 20 Jun 2018 10.09pm by SheilaM

Hope something works for you at moment my hands are peeling beautifully gone back onto do obey as fucibide seemed to make worse see what go says may start coal tar again as that worked for me years ago . Cotton glove certainly seems to help protect!!

Posted Thu 21 Jun 2018 1.57am by Connie

I found a wonderful cream that helps the layers of skin peal. It’s non perscription and you can find it anywhere online. Amazon, Walmart, lots of places. Dermarest Psoriasis Medicated Moisturer. It contains 2% Salicylic acid and Zinc. It calms the insane itching, reduces the redness (nice surprise) and moisturizes. You can apply it 4X a day. On my feet after 2 days the thick skin began to peal off. My hands overnight looked so much better. Cuts were healing. When you first apply it it stings hard for a few minutes then the relief starts. The sting is only initially and stings mostly on my feet. Apply only a thin coat. It spreads easily. I also applied it to the spots and scales on my legs. By morning they were less red and healing. Best of all the insane itching was soothed. For $10 it was a great find!! Hope you can find it online. I feel hopeful at last. :D

Posted Thu 21 Jun 2018 5.05pm by SheilaM

I will have a look for this not sure if we can get in uk sm

Posted Fri 22 Jun 2018 5.50pm by Joe woods

All I have psoriasis on my hands and feet I have seen a dermatologist for three years now and tried everything from Methatraxate pills to injections creams and more pills nothing they have given me worked. I am in constant pain and feels like I am walking on broken glass most days when the cuts dry up I am in pain with a dull ache almost like someone crushing my feet. My mental health is suffering and I feel constantly depressed with the pain. Anyone any hints or advice to help I am in agony

Posted Wed 27 Jun 2018 10.21pm by Sue P

Hi Joe, sorry it’s taken so long to respond to your post but I had problems with my password.

I can totally appreciate the pain you are going through & the situation you are now in.

I myself have been through the same, with no answers, I have lost my job of nearly 40 years & was rock bottom.

My turning point was when I said no more & took control of my treatments. I refused further meds. stopped the steroids & everything else they tried to get me to take. None of it worked !!! My Dermatologist who was great said that ‘ hands & feet are the hardest to treat & sometimes don’t respond to the treatments.

I accepted the condition & was determined to look at alternative options.

I looked at diet, read loads of books & tried to become healthier all round. I make & drink goats milk Kefir daily & have implemented dietary changes. There have been ups & downs, my feet are better than they were but they still crack & bleed daily & can be very painful. My hands are a lot better at present. Each night & sometimes at lunchtime I soak my feet for 30 mins in foot spa, then cover in Aveeno moisturiser which I get on prescription & then wrap in clingfilm & leave on all night. They’re great in the morning but start deteriorating by the afternoon. This enables me to do as much as I can earlier on & be thankful of the improvement. My spirits have lifted so much.

I don’t know you’re situation, age etc but please don’t give up.

I hope this has helped a bit, I wish I could do more.

Take care

Posted Fri 6 Jul 2018 3.30pm by Joe woods

Sue

Many thanks for your response, I am 43 keep very fit and healthy I am a member of our local mountain rescue team and do lots of cycling so really enjoy being fit.

I have had an appointment with my dermatologist who says that she now wants to test me again to see if I am elegiac to anything even though she has done this before and results are negative. I have pretty much gave up with them now anyway as they don’t help. I read about changing my diet but was told that it was nothing to do with my diet from my dermatologist.

I am depressed fed up and so down and se to be searching and getting nowhere.

Any way thanks for your advice

Posted Sat 7 Jul 2018 10.07am by Amandae

Hi all. I went to my specialist appointment last week expecting to be put on methatraxate but one of my blood test hadn't come back. My doctor then called another doctor in who specialised in hand psoriasis. She advised that ciclosporin was the best option as it works quickly. My hands were so bad that they took photos to use for medical studies. I have now been on the ciclosporin for a weekand my psoriasis has cleared up. They are still dry and look a bit plastic but I can do normal things and my hands look nearly normal. I soak my hands in oilatum when they get too dry and follow with cetraban. The only problem is this tablet can't be taken long term so I hope it stays away when I stop taking it. So far only side effect is really swollen ankles but that could be the heat! Hope everyone can get a bit of respite from this awful condition but I would recommend the ciclosporin.

Posted Sat 7 Jul 2018 7.16pm by Connie

Hello all,

I am grateful for your postings. I come here and read so I don’t feel so alone and freakish with this condition. My skin has been perfectly clear and soft all my life. I never experienced teenage acne. So this horrific condition was the last thing I expected to deal with.

I’ve been keeping up with the Aquaphor cream, and it has prevented cracking. I generously apply it multi times a day, wear socks and gloves if I cook or wash.. or when watching TV or using the keyboard. I think massaging my feet and hands has helped them feel better.

I decided to try a new approach since I’m allergic to most medications. Acupuncture. I’m a real sceptic but had nothing to lose. I arrived Extremely nervous, got dry mouth, then overheated and needed her to lower the AC and a fan. The needles weren’t such a big deal. 30 min later I woke to hear a soft alarm outside the exam room. Yes! Woke! I fell asleep! I’ve had 2 treatments so far. I paid in advance for 10. Reduced rate and I wanted a reason to commit to this. Today I woke to no pain in feet and hands, no new cuts, light pink instead of red fiery skin. Applied my Aquaphor and gloves and have renewed hope. Let’s see where this goes.

Added Tumeric to my diet. Also ginger and pineapple for their anti inflammatory properties. Drinking my 2 large cups of coffee still but added green tea decaf with pomegranate the rest of the day. Green tea is also anti inflammatory. Please share what things you are trying.

Posted Thu 12 Jul 2018 1.37am by Connie

I am hoping this post will be the first day to freedom from PPP. A physician friend has been researching on my behalf and learned something that could explain how and why I got this. First, I never fit what is described as the profile for PPP. Researchers say that 95% of persons who get this are heavy smokers and heavy drinkers. I do neither and never have. So I just figured I’m in the 5%. Another profile is obese. I need to lose a few pounds but I’m not obese. So again, I said, either way, I have this horrid painful affection. Now the news. The on Rx medication I take for 3 years is a beta blocker for heart A-fib and high blood pressure. My pressure is controlled with a very small dose of Atenolol, 25mg am and pm.

So yesterday my physician friend discovered there is a link between beta blockers and PPP. The allergic reaction shows between 4 to 48 months. It takes a while for your body to react to being allergic or toxic to the beta blocker and what the beta blocker does. My cardiologist put me on a channel blocker, Ditiazem, generic, been around a long long time and proved safe.

Let’s see if this is the explanation for how I got this. Now that I know I googled Atenolol and beta blocker with the words Palmar Plantar Psoriasis and find all kinds of related reading. Also, on the drug side effects listed as a minor side effect is rashes and effects similar to

PPP. In addition to beta blockers, NSAIDs, non perscription pain meds Aspirin, Ibuprofen and Naproxen ( Advil and Alere) will bring this on. Here is from the Journal of Clinical Dermatology explaining drug induced PPP.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921739/

If this truly is an allergic reaction to the beta blocker then that means once it goes away then it will not return once. I am full of hope.

Do your research of any medications you take.

Connie

Posted Thu 12 Jul 2018 4.46pm by SheilaM

Shall also check this out as I have been on naproxen for many years, will talk to my gp never considered any of this as I have always had psoriasis and thought it was all linked!!

Sheila sm

Posted Fri 13 Jul 2018 3.36am by Connie

1 Posted Sat 28 Jul 2018 5.44pm by Connie

Update on previous posting 2 weeks ago:

Since my doctor took me off the beta blocker Atenolol and switched me to a calcium channel blocker for A-fib, my skin has improved incredibly! No more cracks, no more pain, thickening skin growth has significantly slowed. The inflammation in my feet has reduced so much that my sneakers and slippers are way too big, they flop, unwearable! My hands feel normal but still have areas bright pink. At this rate of improvement I can predict that in 2 more weeks this horrible and painful condition will be gone! Bold statement for sure. I’m going to try to post some pictures. Truly horrific and embarrassing pictures of what I’ve been dealing with on my feet and hands. Emotional and physically it’s been difficult. I’m so grateful not to feel alone in this. Your posts have inspired me to keep searching for an cause. Thank you for your posts!

Posted Sat 28 Jul 2018 7.46pm by Sue P

Thanks Connie,

I’m in the bath at the moment feeling sorry for myself. This bloody condition is always there & impacts on my daily schedule. Never mind it has been worse, feet now easing, candles lit & listening to Ed Sheeran.

Thanks for your input & I will look at your link, great to hear your positivity.

I’ll keep smiling x

Posted Sun 29 Jul 2018 8.14pm by Cattango

Connie,

I just read your past two messages and need to know more. I’ve been on Atenelol since I was 21... now 34. About a year and a half ago, I developed what looks like little sores on the tip of my tongue. I had a biopsy done, and all that came back were inflammation markers. With the ongoing sores, my right hand would produce small blisters, forming in a cluster, eventually breaking and peeling my skin away. I now have this a raw patch that extends from the left side to the middle of my right hand. I’m currently on 25 mg of atenolol and 40 mg of Diovan. Please let me know dropping atenolol has helped you further. I want to believe this could be the answer I’m possibly looking for.

Thank you,

Rob

Posted Fri 10 Aug 2018 1.58pm by Jo

Hi everyone,

I have had PPP for about two years now and it was triggered by taking Humira for Crohn’s disease. I came off the drug 9 months after I started it as the PPP on my hands and feet was so bad. After about a further 5 months the PPP calmed but I was still applying diprosalic 0.05% everyday but at least could walk and wear normal footwear but I still had plasters on my hands covering the cuts. I was then diagnosed with Ankylosing Spondylitis and put on infliximab for this which has given me psoriasis all over my body now as well as the PPP which is disabling me. I have been having phototherapy for 3 months which has helped the psoriasis on upper body but nowhere else and have been taken off infliximab. I also have just had a months course of coal tar with steroid which has made my feet so sore and painful I can’t stand for longer than 10 mins. Has anyone else experienced this?

It has also now spread to 6 nails on my fingers all my nails on my toes. I soak my feet twice a day and moisturise with diprobase cream and wrap them in cling film at night after applying diprobase ointment and also still use diprosalic 0.05% when the blisters appear.

However after all this my feet and hands are just not improving. The itching, redness and scaling just will not improve and I have no idea where to go from here as my life is consumed by this condition. Has anyone out there had a biologic called Secukinumab? And did it help

Any advice would be greatly received as I don’t know where to go from here to treat what I have.

Jo

Posted Fri 10 Aug 2018 2.55pm by McJu

Jo,

Please scroll up & read my post of 27 May 18.

I too have PPP in one fingernail & toenails,

Do not apply steroid daily as it thins the skin and when you are in cycle of bluster peel repeat...well like you say can't stand or walk for long.

Buy Skechers memory foam shoes or trainers they do help a lot!

I now don't use moisturizer emollients or steroids & my condition is so much more manageable, can go on long hikes, stand as long as I want. Doing this has by and large stopped the blistering, I just go straight to peel stage, but feel I have my life back!

I feel your pain sweetie & no how down this shitty condition can make you, but try stopping "treatment" lets face how much worse can it get? So glad I did!

Hope it improves soon.

McJu

Xxx

Posted Fri 10 Aug 2018 2.58pm by McJu

P.S.

Do you know you are only allowed phototherapy 5 times in your lifetime?

Posted Fri 10 Aug 2018 3.18pm by Jo

Hi McJu,

Thank you for your advice about stopping everything, funny as that is exactly what my fiancé said earlier today.

Can I ask you what normal moisturiser you use if you don’t use emollients? I have been using Aveeno on my body but doesn’t seem to work so well on the feet.

And no I didn’t know about the amount of phototherapy you could have. Interesting!

I think it’s a vicious circle as I am stressing about the condition which is probably making it worse.

It’s nice to know that I am not alone and looking on this forum just makes it that little bit easier and everyone understands.

Thank you

Jo

Posted Fri 10 Aug 2018 4.38pm by SheilaM

Hi I also use the avens on my hands and feet but I use the daily moisturising lotion, rather than cream I find it better. But also use diprosalic 0.5 at night and flexitime 10 percent in mornings have found derma silk gloves, I was buying cotton, really useful at night after ointments my GP prescribed after I told him I was buying Cotten gloves. Much more under control and not getting the awful splits at the moment. Have also had one lot of uva but had another years ago when my ordinary psoriasis was really bad, but that not bad at the moment, good luck.

Posted Sun 12 Aug 2018 4.54am by Connie

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

Posted Sat 18 Aug 2018 7.44pm by PussOff

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.

Posted Sat 18 Aug 2018 8pm by Cattango

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.

Posted Sat 18 Aug 2018 8.07pm by PussOff

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 :(

Posted Sun 19 Aug 2018 3.17am by Connie

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.

Posted Sun 19 Aug 2018 2.47pm by PussOff

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 :)

Posted Sun 19 Aug 2018 4.54pm by Connie

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.

Posted Sun 19 Aug 2018 5.01pm by Cattango

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.

Posted Sun 19 Aug 2018 8.19pm by Jed

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.

Posted Sun 19 Aug 2018 10.06pm by PussOff

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

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