PPP (Palmoplantar Pustulosis)

[CalamityJane]

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

When the Dr first put me on it I had huge lakes on the bottoms of my feet and could hardly walk.

Hi all - I've read about 'lakes' on feet and it just makes me cringe. I'm so glad that has gone for you. I think your foam tar may not be as good as the thick smelly stuff that I have. It's worth the wait for it to dry and also worth the smell Eau de Tar parfum!!

At least the Cyclo is containing it for you. Maybe the Doxy would contain it just as well, but much more innocuously? Course, it's hot where you are and Doxy doesn't get on w/sunshine very well.

Zeb - ouch - PPP can move very quickly from one state to another, usually bad to worse it seems. I didn't have PPP on my heel at all, but it was starting to creep up the sides. My sole would split, often in more than one place. Walking was horrid.

Don't know where you live, seems like UK........Caresse is correct, many of us here have had excellent success w/Doxycycline, taken as she says. Another antibiotic w/success is Keflex. At one point I got an 18 month remission from 2 weeks of Doxy. However, I'd had PPP on that foot a well over a year, and it had calmed down somewhat. However, the Doxy did not clear the new presentation last year on my R. foot. It did however contain it. And for now that's good enough. I'm managing between the steroid, tar, Dovoenex and sometimes a large "tough" plaster if there's a bad spot.

Barb is our resident wet-wrap specialist! She also earns the title of best remover of calloused skin. Her DNA is all over the place!  A year ago I took her wet-wrap advice and it was worth the trouble. Perhaps during the day you could try some antibiotic cream and large plasters/bandaids to try & protect it a bit.

BTW Tar is an OTC product. However as you seem to be in a flare, there's no harm in asking for a month of Doxycyline. Just a thought anyway.

Take care all,

Jane

[zeb]

Thanks everyone for the suggestions.

I have actually had to go and see my normal doc today and I talked to her about some of the suggestions I have read on this forum. She seems quite happy to give anything ago but points out it is better to try one thing at a time so I can see what has the most effect.

She  has given me Dovonex today which I will try in a day or so when my foot is not quite so raw and painful. I could not bear for it to break out badly again while the skin is so painful. I talked to her about the doxy stuff and she is quite happy to give that a try to see if it makes any difference. She did however say that my GP surgery do not tend to prescribe any Coal Tar preparations these days so I am not sure about trying that.

I really do seem to have had the worst breakout ever in the last few days and it is still pretty bad. I am struggling to sleep and snappy! I also have some other health problems at the moment so that might be making things worse.

I really appreciate the advice on here - at least it gives me  some other things to try out instead of just being desperate 

[CaresseD]

Hi All!

Zeb, I am so glad that you have an open minded Dr. Those are the best. My dermatologist is pretty open minded, and the PA seems to appreciate the fact that I am educated on my condition. She is right though, its probably best to try one thing at a time to determine what is helping and what isn't. Hopefully you can get some relief from the Dovonex.

I saw a rheumatologist yesterday and she confirmed that I do have Psoriatic Arthritis. Bummer!  But at least I now have a confirmed diagnosis, instead of a guess and a might be. Like, it might be tendonitis, or bursitis. She was super nice and very thourough, she spent 45 minutes with me! She checked every joint did an extensive background and asked a lot of questions. She was very respectful of what I was willing to take and do to get relief from the pain. Like the fact that I don't want to take the methotrexate because of wanting to start a family. But she is concerned that because PA is so damaging to the joint that we control it before it does a lot of damage to my joints. So she is putting me on an NSAID and I go back to see her in 6 weeks to determine if the NSAID is helping and change medications if its not helping.

Anyway hope everyone is well!

Caresse

[CalamityJane]

Hi all:

Zeb, I'm also glad to hear you have a cooperative doctor. Makes a huge difference.

So sorry to hear you feet are so bad. If you haven't already done so, please try Barb's wet wraps. A goodly layer of steroid cream, topped with a good layer of something like aquaphor (keeps the steroid in place & moisturizes), then a damp sock, or one of those spa bootees, all topped off w/a plastic bag, or grocery bag with the handles tied. It is quite soothing. We PPP'ers make a fashion statement with them!

Your Dovonex. If you feet are split open I would wait to them to heal over. This sounds silly in a way, but if you can get some Doxycycline now while they are so painful, it should help heal them, then you can try the Dovonex later. One thing at a time is best, and the Doxy usually packs the more powerful punch.

Caresse - well at least you know I suppose. Was hoping like you that PA was not there, and it was bursitis or something similar. Knowing though you can get on with the treatment, and I hope you do well on the NSAIDS. It will be interesting to see if that medication has any effect on your PPP since it treats inflammation.

Hope some of this makes sense.

Take care all,

Jane

[zeb]

Hi all

Happy to report that the flare has subsided a bit but my foot is still very tender and sore. I have started with the Dovonex but have only tried it for a few days so far so it is early days.

My daughter has psoriatic arthritis. She was diagnosed at the age of 7 and is now 20. We have been through trials and tribulations as you can imagine and we have tried lots of different drugs etc over the years. She is mainly affected in both ankle joints, some toes, both knees, several fingers and one side of her jaw.

She is now on Naproxen (Nsaid) and  Methotrexate which she injects herself once a week.

If we can be of any help or make any suggestions, Caresse, we would of course be glad to do so.

[CalamityJane]

Hi Zeb, glad to hear your flare is subsiding. Tends to do that but sometimes take its time about it.

I wonder if there's any relationship between your PPP and her PA?

I'm sorry your daughter is having to deal with PA at such a young age. I don't know what the remission rate (if any) is for PA, but I bet your daughter is a lovely person, in part, because of what she lives with.

Best regards,
Jane

[CaresseD]

Hello All,

Been a while since I have been here. Been really busy with work and life.
I was taking an NSAID called Indomethacin, but started getting really bad, almost Migraine like headaches. That started in the evenings, and each day came on earlier and earlier, and were worse and worse. They were so bad I couldn't function, all I would do is lay on the couch. I couldn't read, watch tv, knit/crochet/sew, do chores, anything. I finally called my Dr and she switched me to Naproxen twice a day, but it doesn't seem to be helping that much. It takes a little of the edge off of the pain, but I still have a lot of swelling and stiffness. I go back to see the Dr on the 17th of September. We talked about the MTX but decided at the time that we didn't want to start it since we are ready to start trying for a family. She did say though that if it comes down to it I can start the MTX and then if I do get pregnant then I can stop it right away. I just don't know that I want to risk it, especially since I just read up on it. I don't want to go down that road.
Otherwise just chugging along. My hands and feet are doing really well. No itching, I had one tiny little pustule on one hand the other day and it went away within several hours. My hands still peel like there was a pustule there, but my skin isn't nearly as dry. Just keeping up with the moisturizer, and the coal tar and of course taking my medicine every day.
Hope everyone is doing well!

Happy Friday!
Caresse

[zeb]

Sorry to hear you are not feeling great, Caresse.

I totally agree with you about not starting on MTX if you are trying for a family. We have always been told that Sophie (my daughter) would need to be completely clear of the drug for at least 4 months before conceiving.

What dose of Naproxen are you on? Sophie is on 500 mg twice a day when she is really bad but sometimes she doesn't take it at all. It all depends on how bad she is feeling.

When she is feeling awful we find that warm baths and massage of the affected joints with olive oil does give some relief.

My flare has subsided a bit but I am still getting small clusters of putstules all over the back of my heel and it seems to be creeping further and further under my heel onto the sole of my foot. It is very difficult to walk any distance much of the time and I am getting pains in my knee on the same leg where I am obviously starting to feel the affect of walking on the ball of my foot only. I am still using the dovenex - hard to tell whether it is helping or if it just a minor remission of the PPP before it breaks out badly again. Time will tell I suppose.

[CaresseD]

Hi All! 

I am feeling a bit better. I am also on the 500mg of Naprozen twice a day. It doesn't seem to be helping that much, it seems like it just takes a bit of the edge off of the pain. My problem when I am really hurting and stiff is that I have a hard time getting in and out of the bath tub. And being independent I hate having to ask my hubby to help me.
My skin is feeling and doing pretty good. Its pretty dry though, so I am just trying to keep it moisturized. I totally feel the whole unable to walk and walking on the ball of your foot. Have you tried the wet wraps on your feet? They do wonderful things! Keep up with the Dovonex, it may not seem like it is working at the moment, but it might take a while to take full effect.
Keep us up to date on how you are doing!

Take care everyone!
Caresse

[CalamityJane]

Hi all,

Not much to report from my end at all, but pleased to hear that you are improving Caresse. I seems that it is more the PA now, rather than the PPP which is bothering you.

Zeb - give the Dovenex some more time. I use it in conjunction with tar. If you can't get tar where you live, you could get it off the net. Mine is Targel-Oden and I believe it's made in Germany. It sounds silly but it's been worth it's weight in gold. It's thick, smelly but oh-so-cooling and soothing.

My R. foot is weathering our glorious summer quite well so with all my witches brews I seem to be managing it.

Take care all,

Jane

[CaresseD]

HI,

Glad your foot is doing good Jane!

I use the tar too, but I get it in prescrption form. Scytera foam, its awesome because its not thick, it sinks right into the skin, yet its still soothing and healing. It doesn't smell bad at all, so I can put it on let it dry a couple minutes, and then get on with my day.

My skin is much better, except a small patch on my right hand that popped up yesterday because my pharmacy is horrible and made me go without my medication for 2 days. Grrrr!
Anyway, now my dermatologist wants to change my appointment time for next week to an earlier time, but I can't get ahold of them. Double GRRR! Any my joints are killing me.
The naproxen is just not doing enough. I'm still inflamed, stiff, and in pain, so why am I taking this medication that is slowly killing my Kidneys?

Venting is helpful!
Love ya guys! Have a wonderful weekend!

Caresse

[Taycheedah]

Hi - I've been having good results treating my plantar pustulosis with fresh aloe vera juice, the kind that comes in big bottles for around £7.95 that you keep in the fridge; it's the kind you're supposed to drink, and maybe that would help too, but I haven't tried it.  I've found it very soothing, especially cold from the fridge, and by applying it to my feet every day using a piece of cotton wadding, my PPP has gone seriously into remission: no itching, very few new pustules, and only one fissure which is now healing.  I then apply some Burt's Bees ReQ (comfrey ointment - smells lovely, and often available on ebay very inexpensively), and finally whatever cream I'm currently using - I try to use different ones, and otherwise they will work for a while and then stop working.  at the moment, I'm using Avon's Planet Spa foot cream, which keeps my feet nicely lubricated.  I've had it for ten years or so, and this is the best my feet have felt in all that time.

[CaresseD]

Hi Taycheedah!

Thanks for the info. I tried using fresh Aloe Vera from the plan, and while it did seem to moisturize the skin, I didn't have the same healing results you had. I may have to try it again now that I am on the medications and in good shape.

Hope everyone is doing well!

Caresse

[CalamityJane]

Hi all, and welcome to the new comers, Taycheedah and Arctic!

Caresse, I'm sorry you are still in pain and the Naproxen not helping. Can you change to something else. The cyclo is really helping it seems.

Good to hear though that your skin is doing better. I have an aloe vera plant, but never used it on my pustules.

Arctic, There is a whole thread dedicated to PPP and it's associated problems, located here:

http://www.skincell.org/community/index.php/topic,23555.0.html

I'd never be so brave to be so very far from medical help. I admire you for that. OTOH, my feet always feel and look better when cold, so that would be good for them. I don't suppose you know if heat/cold affect your PPP? You live in a very interesting landscape! How long have you been there?

Two particular meds have helped with the PPP - Doxycycline, and Cephalexin (Keflex) if you can get your hands on it. The Doxy helps somewhat w/the joint pain because of its anti-inflammatory properties. I have pain in my fingers, but I think it's unrelated to the PPP.

PPP has a mind of it's own and like most autoimmune diseases, it waxes and wanes at will, although different things can aggravate it in each person. (Heat is one for me).

My R. foot is pretty stable despite our fabulous hot summer, however, it has spread from last year's small area, to most of the insole, here and there, so to speak. There hasn't been any splitting, just peeling, and I find the tar really helps to shed the skin. Dovonex also helps I think to retard the growth of prolific skin cells. I feel very fortunate that mine does not itch.

Had one large one on my R. hand yesterday. Now just the reddish brown dot.

Take care all,

Jane

[zeb]

Hey everyone 

I am ploughing on with the Donvonex - it does seem to be helping a bit but the peeling and cracking continues and makes my foot pretty sore. It has improved though so I will keep going with the same regime for the time being.

I had thought of trying some sort of Aloe Vera on my foot but I have never got round to investigating it.

Welcome to the newcomers   

[CaresseD]

Hi everyone,

Just wanted to give you a brief update. My skin is doing much better, but my joints still ache like the dickens. I see the rheumatologist on Thursday, so we will see what she says.
Also I have mentioned before that I teach knitting and crochet at our local craft store. One of the other teachers there has a daughter that was diagnosed with PPP and PA. I guess the Dermo she was seeing was trying all different medications on her and nothing was working, well I guess now it has spread to her whole body, plus her "lady" Dr said that she now has it internally. She is a really stressed out lady. She has three young boys, a husband who doesn't support her in this trying time, she is going to school, and I think she is working too. I am going to be calling her very soon just to lend her a sympathetic ear and talk with her, but I would really appreciate it if you all could pray for her! I don't even know her name yet, but I know she needs help. The drs want to send her to UC San Francisco hospital and possibly start Chemo on her! Keep her in your thoughts and prayers!

Thanks all! 
Caresse

[CaresseD]

Hi All,

Quick update. I talked with the other teacher yesterday and got more information. I haven't talked with her daughter yet. Yesterday was a painful day and I took a nap when I got home.
Anyway, the girls name is Jenny, and she has now Pustular Psoriasis von Zumbusch, so she is pretty bad off. Her dermatologist pretty much washed his hands of her. But she now has the pustules all over her body, in her lady parts, in her ears, in her hair. Everywhere! She was giving herself shots of Enbrel and had a reaction to it, so she had to spend 12 hours in the ER last week. Poor thing. And she is going to a Dr at UCSF next week. So keep her in your thoughts and prayers.

Take care,
Caresse

[CalamityJane]

Hi Caresse and everyone,

I'm very sorry for Jenny. Her situation is very serious, as well as quite rare. What kind of Derm washes their hands of a patient who is so ill? Dreadful thing to do.

I hope the hospital is taking good care of her. It's horrible to imagine our bodies covered in these pustules. Let's hope they can get it under control quickly.

In my prayers and thoughts........

Jane

[zeb]

Hi all

That sounds a terrible situation for Jenny. I simply can't imagine living with pustules all over the place like that. I just have the one relatively small area on my foot and that is pretty disabling and very painful at times. My thoughts and good wishes are truly with her 

I am not too bad - foot is still very itchy and sore on and off but better than it was a while ago so I am not complaining. Still using the donvonex pretty much on its own apart from an occasional moisturiser.

[CaresseD]

Hi All!
Thanks for your well wishes! I will pass them on to Jenny when I talk to her!

I saw the rheumatologist yesterday. After reviewing our options we decided that I am going to try the Enbrel. She ordered a bunch of tests to make sure that I am okay to start using it. Including a TB test, that I am supposed to have my Primary Care Dr read in 48 hours. But 48 hours is Saturday! They don't work on Saturday! So I am supposed to go in and talk to them today when I get home. We will see what they say. Hopefully I will get some relief from this pain! Its getting worse, or I am just not able to tune it out like I used to. So..... we shall see. Plus she feels that it will be okay to take it while still trying to get pregnant. She just wants me to be aware that I should stop treatment as soon as I know that I am pregnant, since we don't want to risk any health issues with the baby.
Well thats my update. Skin still doing good!

Caresse