PPP (Palmoplantar Pustulosis)

[over70]

Anyone with PPP,

I've never been on a forum or chat room or anything but email, so I want to be on the forum (or whatever you call it) that CalamityJane started.  I've been battling PPP for 8 years and have stuff to say.

Am I there?

Liz (over70)

[Uncle Matt]

You are indeed there (or should that be here?)

Welcome to Skincell!!

This thing right here is known as a "Thread".

Each "Board" has a number of threads, and the forum contains all the boards.

Have a look around, there are plenty more places to look at

If you want a bit more information, click on the "help" button on the top toolbar.

Matt.

[barbaraann_38]

Hello all, and welcome to skincell Liz   

This would be the right place for you to be if you have anything to say about PPP.  We're all glad you found us.

Barb

[over70]

Thank you Matt and Barb.

I checked out several places in the SkinCell Forum and this was the most current and interesting.  People here seem more interested in sharing information than just complaining.  Heaven only knows everyone with this condition has a right to complain, quite loudly and often.

Please forgive my not reading every post from the beginning, only those in July, so I may be asking questions that may have been brought up earlier.  I may be retired, but very busy with 2 daughters, 3 sons, 6 grandsons, 3 granddaughters, 2 cats and one wonderful husband of almost 50 years (lots of birthdays).

A brief PPP background: 8 yrs ago blisters, 6 mos.later U.C.San Francisco lab said "autoimmune disease", Dermatologist treating for carcinoma let feet get away from him, went to Stanford, got Kenalog shots, went back to MD (200 miles to Palo Alto every couple months was bad), researched autoimmune then started health regimin of organic food lots of vitamins & herbs, MD gave me everything in his sample closet to put on, but only Kenelog shots helped.  My wonderful Dermatologist retired and now I'm starting over and highly frustrated.

Has anyone had Kenelog shots?  The new MD is telling me that the shots are going to cripple me even though I have friends who have been having cortisteriods for years for other problems, to say nothing of our Governor!  I get the shots every 4 to 6 months, before the left foot starts to break out again.

Thanks for reading, have to run.
Liz

[CalamityJane]

Hi Liz and a big welcome to SkinCell, and for finding the right thread. Good for you. Jump in to the thread wherever you like! You sound like a busy person.

I've only had Kenalog once, when I had raw areas in my mouth. It was marvellous and helped no-end. I've not heard of shots (I just had a paste of it to apply). I'm assuming it is a shot of steroid perhaps like prednisone?

I'm sure we all will appreciate hearing more about it. PPP is a miserable thing to have. There is worse, but for those w/severe cases it can be crippling.

Again, welcome!

Jane

[Sheri]

Good Morning everyone, Hi Sheri,

What I did for wet wraps was to put my medication on my feet first (or cream, or Vaseline.. depending on how bad they were at the time) Take a pair of cotton socks, get them wet, wring them out so they aren't dripping, put them on carefully as to not remove the medication from where its needed, then put plastic wrap, or plastic grocery bags on (tie the bags at the ankles to the outside).  The bags will keep the moisture in.  I did this for about a week straight, and the difference in my feet always amazed me.  Seems when there is moisture involved the medication or what ever you've put on your feet goes in deeper.

1. Medication
2. Damp socks
3. Plastic wrap or bags

Good luck Sheri!!

Take care all, gotta run... have a great day!

Barb

hi, Barb, all--

coooool, thanks! doesn't sound as messy as anything else, really just one more question, please? how long do you keep yours on? and do you do it once or twice a day?

thanks again!

[CaresseD]

Hi All,
Sorry I have been away for a while. I have been busy working and crafting. Lots of fun.
Just thought I would give everyone an update. The medications the derm has me on haven't changed, but aren't really helping any more. I see him again on the 30th. The cyclosporine isn't helping me any more, and I don't want to try MTX or Enbrel or anything. Sigh...
My right foot just seems to get progressively worse, it hurts to walk again, whether I am wearing shoes or not.
I have an appointment on the 6th to see a rheumatologist. My PC had an appointment with me last week and was concerned slightly with my SED rate, which measures inflamation. He said it is slightly elevated, but thats abnormal for a person my age, so he ran another test and it went up from 48 to 67. So I get to see another dr, we will see what happens with that. Yay!
Anyway hope everyone is doing well!

Welcome Liz. 

Caresse

[CalamityJane]

Hi everybody,

 - Sheri, Barb's recipe is overnight I believe, but she'll be along to confirm that. I used the wet wraps last year when my R.foot (always previously clear) started w/PPP. They were very helpful, but you have to be careful not of fungus infections in that damp, warm atmosphere. Not a great idea for 24 hours. You can also do them if you have a couple of free hours or so during the day.

Caresse: I am so very sorry to hear that you are doing no better at all, although not surprised in a way as the Cyclo should have kicked in with a huge punch once it got going. At this point it might be good for you to see another doc. I know it's a drag and draining, but at your age, would be good to have all your bases covered.

I regretfully admit I can't recall if you have tried an antibiotic? I'm beginning to think that timing might be everything for some people re a.b. use. I know you live in a hot climate, but that heat doesn't bother your PPP, whereas it drives mine crazy. It's hot here for us and my PPP has ramped up somewhat, but it is not all-consuming as in 2006 (yet, anyway). My R.foot has not followed the road my L. did. I thought it would.......

Argghhh, this is such a stupid, insideous miserable thing, with no rhyme or reason, or particular pattern and seems almost each person reacts differently.

Thanks for checking in, and I'm hoping that something will come of your tests. The good thing is that you have good, attentive medical care. A huge plus.

Take care all,

Jane

[CaresseD]

Hi Everyone!

Unfortunately too the stupid pharmacy took forever to get me my medicine so I was completely without it for several days. The PA didn't put the dosage on the script, and then when they finally got it the pharmacy never called me to say they had it. It took my husband calling them to find out what the status was, then they didn't have enough for a 30 day supply so they gave me enough for a 15 day supply and are supposed to contact me about the other. They didn't charge me for it, but still, I DIDN'T HAVE MY MEDICINE!!!
I did try the Doxy, and it cleared everything up right away, I only did a 2 week course, but the results didn't last. I don't know though if thats because I am still taking the cyclo. The heat and cold don't seem to effect it. But lord how it itches! Drives me crazy!!!!!
Anyway I will stop ranting for now.
Hope everyone is doing well, I may try a wet wrap on my right foot tonight!

Caresse

[barbaraann_38]

Hi Everyone...
 
GRRRRRRRRRRRRRRR  I just wrote a response, and yes.. you got it, before I got it posted I LOST IT!!!!

It was a bit lengthy, so I'll make it brief this time *sigh*

Sheri, yes as Jane said, just over night, in the mornings I would wash my feet in the shower, then slather the lotion on and put socks on immediately.

Caresse, I so feel for you, I do remember the pain I experienced with every step I took when my feet were at their worst...  As Jane said:

Argghhh, this is such a stupid, insideous miserable thing, with no rhyme or reason, or particular pattern and seems almost each person reacts differently.

Take care all, I wish you all the best, and hope that you/we/us all find some sort of relief!

Barb

[CalamityJane]

Hi all,

I am sizzling here, in 30C+ weather, and my foot doesn't like it. What else is new? I'm managing to maintain a level of comfort with a combination of tar, moisturizer, and steroid. That's for today anyway. I've been sitting here w/my feet on cold packs......ahhh, helps. Another is helping the rest of me on my neck.

Caresse - it's perfectly OK to rant!! Probably a good thing in fact. Damned annoying when prescriptions get mixed up, not done, or whatever they tell us the problem is.

Last year, I took Doxy for 6 weeks, although I don't recommend it in the summer, especially in the heat you experience where you live. The Doxy didn't clear the new presentation on the other foot, but it most certainly contained it. Ha, like a boom around an oil spill or something. I'm assuming you do have your script now? This is for the cyclo?

Barb - my friendly contortionist -- ugh, socks right after a shower. I'm so hot at the mo, I even washed my hair in a tepid shower earlier. Got one sock on my bad foot, just in case it has splits or something I can't contort my body into seeing.

It's heavenly here, and there's nothing I'd like more to than walk barefoot, or better yet, stand in the sea.........all we need is a trade wind so we are not baking.

I know both of you itch like mad. Strange that I have the same thing, but without any hard skin, or any itching. I'm thankful for that actually.......

Take care all, great to hear from you both.

Jane

[CaresseD]

Hi All,
The weather has been cooler here lately. HAHA! Like 90 F is cool! Pshaw! I hate the heat!
Anyway I saw the Derm yesterday, well actually the PA, who I like better because she seems to take and active interest in my condition, how I am doing and she appreciates that I am educated on my condition.
She gave me some coal tar foam samples to try. Which I seriously appreciate, because who wants to pay for a medication and then have it not work, or make things worse, and then have it just sit there. So I will be trying it. I put some on as soon as I got home last night, and this morning my right foot seems like it dried out the active pustules, and the scabby ones seemed ready to be peeled off. So that seems promising! I will keep you up to date. Its called Scytera and its a foam so its in a little can like a moose (hair product) can. It doesn't smell too bad. I did notice that it seems to be more tarry smelling after it has dried for a while. But I could only smell it when I put my hand right up to my nose. It did seem a little sticky though. Yuck, hate stickiness, but if it works, I can bear it.
She kept me on the same dosage of the Cyclo, she thought about changing me back up to 3 times a day, but doesn't want my blood pressure to skyrocket again. And I don't want to have to take a bloodpressure medicine on top of every thing else. She wants me to keep using the Taclonex, which seems to help with the itching, but not the flare itself.

Anyway thats it for now. Hope everyone is doing well and has a super-fantastic weekend!

Caresse

[CalamityJane]

Hi Caresse and everybody,

Good to get an update.

Hi All,

She kept me on the same dosage of the Cyclo, she thought about changing me back up to 3 times a day, but doesn't want my blood pressure to skyrocket again.

What affect do you think the Cyclo is having for you? Moderate, any, waste of time? Did she say anything about a gradual reduction? You've been on it quite a while now so you have a good handle on what it is doing, or not doing by now.

Yeah! 90F is very hot and we have had that this week, even higher on a couple of days. My feet don't like the heat, but I've managed to keep my 'bad' foot on track I hope. Even my other foot that's completely clear of PPP doesn't react well to dilated blood vessels.

Tar can pack quite a punch, or at least it did for me. And I've been using it twice a day lately. My, it feels good, it's very cooling for me, and it has stopped apparently a new crop of pustules. I find it quite drying, and there's peeling from it on my sore spots. But I am managing it, for now anyway. Tomorrow is another day and can be totally different as we PPP'ers know all too well. The tar I use is Targel Oden, and it does smell. It's a very thick ointment that immediately cools and soothes my foot. It is somewhat messy and I have to walk on tip-toe till it dries. It's worth it though. When it was initially prescribed I also used Dovenex in combination w/the tar, and the two seem to set me on the road to remission. However, it might have been that the PPP was waning anyway. It's soooo hard to tell, and everybody seems to have a different reaction and time-frame.

Long weekend here forecast to be sunny and warm, but not into the 30's again.

Enjoy your weekend all.

[zeb]

Hi all

I have been recently diagnosed with PPP. It all started in March and has gone steadily downhill from then. I have it on my left foot - all on the heel mostly but also extending under the back of my heel to the sole of my foot.

It has been a bit of a nightmare so far and a real shock to suddenly get something like this in your late forties.

I have not read all the posts on this thread but I have read through the more recent ones so I am sure I have missed some good advice.

At the moment I am only using steriod cream. I have seen a dermatologist who just seemed to want to prescribe me retinoid drugs which I didn't want to try until everything else proved hopeless - but to be honest that is all he really offered. I am not really controlling it but it doesn't seem to be actually spreading any more so I suppose that is something. It has proved helpful to pierce the pustules with a sterile needle so that my skin doesn't seem to tear so much but really I am still just trying to come to terms with it all.

I feel like I am babbling on so I will finish for now. Just to add that I am 47 and I live in England and it is lovely to read everyone's posts and helpful advice 

[barbaraann_38]

Hi Zeb, and welcome to the skinCell 

If you have been diagnosed with PPP you have come to the right place.

I too was diagnosed with it in my late 40's... actually around the same age you are now.  That was a couple of years ago. 

It's been up and down since then.  It first presented itself on my hands, once that cleared up it headed right to my feet with a vengeance.  For quite some time now I've pretty much been in remission.  Occasionally there are a few tiny pustules that pop up on the palms of my hands, but they seem to dry out before they can develop into anything much.  Its odd that my hands and feet still itch like crazy once in a while.  I find myself unconsciously scratching them...

My feet at the moment are still very dry and flaky, I've come to "sanding" them about once a week... and putting tons of lotion on them daily.

I hope you find some info here that is helpful to you..  I can honestly say that this site literally saved my life... I was seriously at wits end with my PPP when I found it!

Take care, and once again, welcome!

Barb

[CalamityJane]

Hi Zeb, welcome to SkinCell.

I was given the steroid treatment also when first diagnosed. It's the standard thing it seems. It won't "cure" PPP, but control is what we're after so to speak. PPP will wax and wane at will, but is easier to cope with if you can get it under control.

Don't dismiss the retinoids....by that I mean the topical ones. I use Dovonex and it has been helpful along with the tar and steroid. My foot seems to take a big chunk of time each day, and gets more attention than my face many times.

I was older than both you and Barb at first diagnosis. There's much support and information on this thread and hopefully you will find something to help. We are always here......and pleased to have you on the thread, but sorry for the diagnosis. It's a nuisance to put it mildly.

Babbling causes no worries! Guilty I am of that on occasion......

Jane

[CaresseD]

Hi All!
Welcome Zeb! I second what Barb said, this site saved me.

Babbling causes no worries! Guilty I am of that on occasion......

HAHAHAHAHAHA! Aren't we all guilty of that?

Anyway update!!!! The Coal Tar foam has pretty much dried out my feet, I didn't notice any cooling effects when I put it on, but that may be because its a foam, and not a cream/ointment. It dries pretty quick, no help with the itching, but I have the Taclonex for that.
As for the Cyclosporine, it helped a lot at first. When the Dr first put me on it I had huge lakes on the bottoms of my feet and could hardly walk. It cleared up my hands and feet right away it seemed like. Then it stopped working. Well I won't say that, it kept everything from being really bad, I am not having such bad flareups. I still get the pustules on my hands and feet, but they are bareable. They itch at times, so I put on the Taclonex, and that stops the itching. So I wouldn't say that the Cyclo has stopped working, I would just say that it is containing it somewhat.
All in all I am doing pretty good. Its supposed to be 87 today! Woohoo, yesterday was really nice too, we had the windows and doors open all day, and didn't have to run the AC. Weeeee!!!
I hurt my back on Saturday though. I bought 2 big boxes of records for my record purses on Saturday and was trying to lift one to take upstairs, and pull my lower back really bad, so needless to say the box didn't make it upstairs and I spent the rest of the day Saturday laying down and cringeing at every little movement. I had to sleep in the guest room Saturday night because I could actually get into the bed. Our bed is really high off the floor, so that wasn't happening. Its feeling better today, but that could just be the drugs talking!

Zeb- Feel free to come and vent, ask questions, etc. We have all been in your shoes before. I was diagnosed in February, I have had it on my hands since May 2006, and my feet since last July. I am 27 years old now, so it can come on at any age! Just feel lucky that you got it when you were older!

Jane- Have you tried the Banana Peel? Try it and see if it works! I am interested to hear what it does.

Take care all!
Caresse

[zeb]

Thank you for the lovely welcome

Foot has broken out badly today and just to cap it all the skin has split for about half an inch just on the edge of my heel

I am slapping on cream but it is so sore - will cover it in a waterproof sock tonight and hope it feels a bit better tomorrow.

[barbaraann_38]

Hi everyone

Hi Zeb, sorry to hear about your foot, we all feel your pain.  I used to get horrible splits on my heals too, there were times they'd become so deep that I'd have to try to sand down the edges (OMG did that hurt) to get past the dead skin just so it would heal.  I'd also get those "butterfly" bandaids from the pharmacy, the ones that docs sometimes use on somewhat deep cuts rather then using stitches.  They would hold the skin together quite well.  Seems the deep cracks would add insult to injury... like your feet aren't hurting bad enough as it is!

Good luck with the wet socks, lotion and bags!!

Take care all,
Barb

[CaresseD]

Hi Zeb,

Sheesh, just not letting up huh? Darn it!
When you were diagnosed were you prescribed anything besides the creams? A lot of the sufferers here have tried and been pretty successful with Doxycycline. I was given a prescription for 100mg twice a day for 30 days, and was just kind of told to take it however I wanted. So the first dose I took 2 pills of 100mg each and then each day took one twice a day. I only took it for 2 weeks, but it cleared everything right up. I didn't have anything real deep or bad like you have, but I would look into it.
Hope things get better!

Caresse