PPP (Palmoplantar Pustulosis)

[CalamityJane]

Hi all, but those w/PA in particular.

Just received an email from the National Psoriasis Foundation regarding a newly approved drug, Stelera.

Here is the link - well worth reading. I posted the full content on the Psoriasis Board, but it is worth repeating.

https://www.psoriasis.org/netcommunity/news_stelara_approved

Caresse - perhaps this is something your rheumatologist knows about?
Jane

[zeb]

Hi all

Calamity that drug does look really interesting. I will have a look and see if it is approved for use in the UK.

I am still ploughing on with the dovonex. It has certainly improved my skin. I don't seem to be getting individual pustules as such - more sort of a general leakage of fluid on a small area of my foot that does go crusty and then peel off. However quite a large area of skin appears to be pretty clear although it is still very pink and scaly. Even though the pustules are not appearing on that area I can't seem to get the skin back to normal. It is much better than it was though.

The only thing is that I am getting pain in my other foot from putting so much weight on it for months on end. I can't win!

[CalamityJane]

The only thing is that I am getting pain in my other foot from putting so much weight on it for months on end. I can't win!

Aaaah, yes, the one-footed hobble walk. I remember it! Glad you feel the Dovonex has kicked in. It often takes quite a long time to see a difference.

Will be interested to hear if that drug is approved in UK. Usually UK is ahead of us.

Jane

[CaresseD]

Hi All,
That is good news. The Rheumatologist is putting me on Enbrel, and the Authorization went through, I am just waiting on a call back from the pharmacy in order to set up a delivery. Woohoo! Especially since I saw the dermatologist on Monday and they took me off of the cyclo because my BP was 145/110. So since I had to stop treatment cold turkey I am just waiting on my skin to flare up with the worst flare ever. Fun! So hopefully I can get this new medicine soon and start taking it so that it will combat my skin problem as well.
I will have to talk to the Rheum and Derm about this new medicine. I will also have to suggest it to Jenny.
Anyway thats all for now. My skin feels super dry and itchy today! The weather has finally cooled off. Last weeked was 100 F, today its 76 F. Ahhhh, love the fall.
Take Care,
Caresse 

[CalamityJane]

Hi Caresse and All,

Happy you will be off the Cyclo, and that your weather has cooled. Ours has as well, right down to 12C or so...about 54-56F. 76F would be just about right for me all year round! Historically, my PPP has been a nightmare in the heat, but this summer albeit warm and glorious, I was able to manage it. Ha, been sore today at 12C, and is sore right now. Perhaps it doesn't like shoes after 4 months in sandals and bare feet.

I think Enbrel is pretty much a new one for this thread, so look very forward to hearing about your experience with it. Is it a pill, injection, or infusion?

I do hope you begin it soon. You might be correct in stopping the Cyclo so suddenly might cause a flare.   I hope not, but at least you are prepared for it, and the weather is cooler.

How is Jenny doing now? I know all our hearts go out to her, along with our prayers.

Jane

[CaresseD]

Hi All,

Well lets just say I am not a happy camper at the moment. My right foot and hands are flaring up really bad. I am supposed to be getting my medicine today. So hopefully the Enbrel will help, and they put me on the right dosage to help both my joints and my skin. My left foot has a couple of bumps, but my right foot has exploded. And today my hands hurt so bad that I don't want to do anything. I can tell you I have not missed this feeling of tightness, pain and itching. The Enbrel is an injection, which I get to do twice a week for 6 weeks, then once a week for 6 weeks. But its an easy injector pen, and I have read all the directions. Plus I found a program from the manufacturer and I don't pay anything for it! Thats a good thing!
I have also started working toward my goal of losing weight. My goal is five pounds this month. Since I can't really work out because of my joints I am just walking on my lunch break, and watching what I eat. Plus I am eating 5 times a day but very small meals, so we will see if that works. I am going to work up to the actual workouts and more walking, but I don't want to jump into it too fast and hurt myself and basically just kabosh the whole thing right off the bat.
Zeb, so glad that your skin is doing better. It does take quite a while to get the skin back to "normal" I figure as long as it doesn't hurt and it doesn't itch I am on the winning side so i'm not going to complain. I've been slathering on the Taclonex and Coal Tar foam in hopes of heading off the flare, but no luck. I am going to wet wrap my foot tonight, so hopefully that will help.
Jane- Sorry your foot isn't happy with you, it will get used to being confined again soon I hope!

Thats it for now! Take care all!
Caresse

[CalamityJane]

Hi all, quick note - please look at the general Psoriasis Board for new information regarding the Influenza Vaccines. Important information for us w/ Psoriasis, and more so for those taking immune suppressant meds.

Please also look at the stickied topic addendum to this NPF post, located here:

http://www.skincell.org/community/index.php/topic,24806.new.html#new

This is important info for anybody taking biologics or meds to suppress the immune system.

Jane

[CaresseD]

Its good that they caught the mistake. Hopefully noone got a vaccine and was on one of these meds. I never get the flu shot. I just take my chances. I haven't been sick with the flu for 7 years, (knock on wood).
Thanks for the info though!

[CaresseD]

Hi Everyone!

My hands and feet have been soooooo bad. I haven't missed this at all. I am doing the one foot shuffle again. I am supposed to see the derm tomorrow. Reason being, I took two injections of the Enbrel, and did them in my thigh. Almost a week later I was getting Injection Site reactions. The area around the injection site was swollen, red, hot, and itchy. So I called the Drs office and she called me back. She told me to skip that weeks dose, and if it cleared up to take the next dose. The PA at the Derm wants me to come in to the office and watch me do an injection to give me pointers. Fun Fun.....
They have me on 50mg once a week, which I have been told helps with joints, but not with skin. I should take it twice a week for the skin, but the drs were too lazy to get the auth changed and more medicine for me to take, so meanwhile I have been miserable.
Anyway, been super busy. I am in training for work right now. Yay!
Anyway thats all for now. Hope everyone is doing well!

Caresse

[zeb]

Hi all

I hope it settles down, Caresse. I completely know what you mean  about the one foot shuffle!

I have had quite a flare on my foot although it does seem to be settling down a bit now. The palm of my left hand is also pretty bad although I don't get pustules there - just very peeling skin and soreness.

It is getting cold in the UK and I am not sure how all this is going to respond to being covered up all the time. I went out in my Ugg boots for the afternoon the other day and after a short while my heel was starting to itch and irritate like mad. Will just have to take it as it comes I suppose.

[CalamityJane]

Hi all, I've been AWOL, due to life in general and trying to get all the 'flu stuff sorted in my mind before I see the Doc on Friday.

Caresses, what a darn shame you have the site inflammation. Hopefully there will be another part of you that's suitable for injection. How many mg's do you need to have to control the PPP? I know you said you never get the 'flu shot, but it might be a good idea to double check that now, as you are on this suppresant drug?

I also know about the one foot shuffle, or shuffling the 'bad' foot along on an ice pack. Glad you are enjoying work, and I love your upbeat attitude, despite your hands and feet!

Zeb - I remember when mine was very bad, I was out in sandals to keep my feet cool - actually it was freezing cold. For me, cold feet are excellent for my feet, but also keep the rest of me cold as well. Can get mightily uncomfortable. I've been blessed in that my PPP does not, and never has, itched.

I seem to have been able to keep my active R. foot under control throughout our glorious summer, and now that it is (sadly) cooler, I don't have to be concerned about my "tough bandaids" as my feet are enclosed.

I hope you can get some major relief Carasse. And Zeb, perhaps try experimenting a bit w/shoes, creams, anti-itch (I've heard that Preparation H can really help w/that in the short term, and topically). Sounds daft, but we've all tried daft things and sometimes they help!

Jane

[CaresseD]

Hello All,

I saw the derm yesterday and she is voting for me to go on 50mg twice a week, instead of once a week. But I have to wait until I see the rheumatologist on the 17th. I get to give myself another shot today. The Dr's aren't too concerned about the injection site reactions, just gave me more anti-itch creams. Yay, just what I needed, Clobetasol. I have 2 tubes of that stuff. Anyway, the one foot shuffle continues. Don't know how much more my joints are going to take before they give up. So two more weeks of torture before I see the Rheum. I might have to try the Prep H. The darn itchiness, and my skin is SOOOOOOOOOO dry. I am definately doing wet wraps tonight. Can't take it any more. My finger tips are so raw and sore it hurts to taouch anything, even my hair. Oh and I also now have psoriasis on my elbows, legs, face and scalp. It just gets better and better. Sigh......
Hope everyone is doing well!

Caresse

[CalamityJane]

Hi Caresse and all,

I might have to try the Prep H. The darn itchiness, and my skin is SOOOOOOOOOO dry. I am definately doing wet wraps tonight. Can't take it any more. My finger tips are so raw and sore it hurts to taouch anything, even my hair. Oh and I also now have psoriasis on my elbows, legs, face and scalp. It just gets better and better. Sigh......

Dear heavens girl, it sounds like things have gone downhill for you. Darn shame you have to wait though to see the Rheumatologist *before* you can start it when you feel so miserable. Clobetasol has it's place, but as my PPP doesn't itch, I don't know how effective it is for itchiness. Sounds like you need some sort of anesthetic component as well as an anti-inflammatory, to numb your skin a bit so you can have a bit of a break.

The wet wraps were a god-send to me when I needed them.

This psoriasis you speak of, elbows, etc., seems that it is new? Or did you have some of that before the injections? I hope your Rheumatologist can give you some answers.  I'm so sorry that you have this, especially at your age.

0h I recall the one-foot shuffle as will most people on this thread.

Thank you so much for your continued posting despite your discomfort. It is much appreciated by everybody on this thread! I think I can speak for us all in that!

Look forward to a hopefully better report after the 17th. Can you call the Rheum's office and have your appointment brought forward a bit, or maybe take a cancellation if there is one?
 


Jane

[CaresseD]

Hello All,

Well as for an update. My hands and feet are still horrible, but I'm not doing the shuffle any more, yet. I am still getting pustules, and I am getting them where I didn't have them before, on the side of my feet, on the ball, on my toes, heels, etc, not fun. Same thing with my hands, between my fingers, backs of my fingers, etc.
Anyway, I have found a new way to occlude my feet, rather than put my foot in a whole bag and have tons of plastic everywhere. I cut off the seam of the bag at the bottom, and then the handles at the top so I have a big tube, I then cut partway through the tube in strips leaving part of it intact, and then cut across the uncut part diagonally so that I have one big long strip, which I use like a bandage and wrap around my foot. Its easier than plastic wrap because its smaller and easier to work with because it doesn't stick to itself. Its hard to explain exactly how its done, but I will try to take some pictures of the process so you can see.
The psoriasis on my elbows, and legs is pustular, and the derm said to just spot treat it with the Taclonex, which works. She gave me some Taclonex scalp too, because I have like a combination of pustules, and plaques. Lots of fun. Then my face is plaques on my forehead, eyebrows, and nose. I never had this before. Its just since the PPP really started to flare up, and I never connected the two. The scalp, arms and legs is just since I have been off of the Cyclo.

Hope everyone is doing well! Yay for November! Christmas is coming!
Take care!
Caresse

[zeb]

Caresse that sounds absolutely awful 

I hope the treatment kicks in and you feel better soon. I use cling film on my foot which I find is lightweight and easy to wrap round.

My foot is flaring like mad - I am plodding on with treating it but I am fed up. Mind you it is nothing compared to what you are putting up with.

I am thinking of you and hope things improve quickly.

[CalamityJane]

Hi all,

Caresse, so sorry you are in such a state! My PPP did start to crawl up the side of my affected foot at one point.

I wonder though if the Enbrel is in fact causing some of the new presentations. If you are not getting enough to suppress it, your immune system may be fighting against it (and winning at the mo' by the sound of things).

I wish the 17th would hurry up for you!

Your wrapping technique is quite complicated but as long as it works for you that's what counts. Cling wrap is a great alternative as long as it is applied over a damp sock, or cotton/spa like footee. Actually wrapping instead of bags would keep the steroid/moisterizer closer to the skin which is probably a good thing. Keep the feet aired out -- don't wrap 24 hrs.

Zeb, are you still plodding on with the Dovonex? Are you using anything else along with it? If the Dovonex is helping you should have seen at least some minor improvement by now. You've been at it for a long time.

I too am thinking of Caresse and hope for huge improvement starting on the 17th. I can only imagine how miserable you both feel, but when I think back, your misery becomes so real to me. It was only one foot involved but it was very close to be incapacitating. 0h boy, do I know what it is like to be fed-up with it all!

Many thanks to you both for staying with us. Valuable info is being typed on these pages.

Jane

[CalamityJane]

Hi all, just checking in to say Hi, and to Caresse, not long now to wait. I hope you have been managing. I have thought of you often with fingers crossed.

My feet are pretty much the same - left is clear, right has an area of about a half inch square.

I'm hoping against hope that I'll be able to get some warm footwear for the first time in 4 years. I've walked w/icy feet since then as it kept my feet comfortable. (4 years, except for the time I was in remission, and that was a mild winter). Last year it was a horrid, very cold, snowy & icy winter. Time will tell the story.

I think often of the good friends and exchange of information this thread has brought. It is so important that our experiences be written down, both positive and negative. Sometimes, just a couple of sentences can really help another person. Truly worthwhile and truly global - that's so wonderful to me! So heartfelt thanks to you all!

Jane

[sandiw711]

Hi Jane and all
Just to fill you in on my last derm visit.....He said the only thing to try next is methotrexate so I have done all the bloodwork and  will see him again Jan 20 to start the mtx.
Both feet are the worse they have ever been......all around the outside up to my ankle and including both soles from heels to toes....Not quite reaching the toes thank goodness....It is unbearable wearing shoes as afterward I literally have to peal the socks off my feet where by walking I have broken all the pustules.    I am looking into getting a scooter so I can keep off my feet more when I do get out.....Sure hope the mtx can help....my choice to start it in the new year.... hoping I may clear before that but the way it is going I think I need a miracle.  Hope evry1 is doing better and tho I don't chat much I do read all the posts and appreciate been able to vent with those that understand what we are all going through.    Thanks for listening.................Sandi

[craigy38]

hi every one,im craig,i have just been diagnosed with ppp :(its nice to see there are others in my predicament.im a bit bewildered by it all at the mo,caused me to be off work for the last 6 months and now my employers are looking at medical severence,as it is a chronic skin disorder with no cure and is undoubtedly going to cause me more time off in the future.for the last week my symptons have been quite mild in comparison to how it has been(bright red palms with a few pustules appearing here and there with some peeling/flaking)i live in the uk and am looking at an uncertain future now,has any one in the uk been in a similar situation,is this condition classed as a disability ,hows other peoples experiences been with their employers or future employers,sorry to sound a drag just a little unsettled at the mo and not sure which way to turn,any help or guidance would be greatly recieved,thanks in advance.

[CalamityJane]

Hi craig, and welcome to SC and the PPP thread.

There are a number of members on the Forum who live in UK and have waded through the mire of application for Government disability. (Perhaps do a search for disability).

It it my understanding that a chronic condition can be classed as a disability. PPP is disabling depending upon severity. The severity can change within days, hours sometimes as we all know. That makes working life very tenuous at best, depending upon your occupation, transportation mode etc. I do know that others here w/PPP have been, or are,  on disability because of it. Others on the forum are on disability due to their own chronic conditions.

sorry to sound a drag just a little unsettled at the mo and not sure which way to turn,any help or guidance would be greatly recieved,thanks in advance.

Please be assured you do not sounds like a drag at all. Feeling unsettled is a natural reaction to what is happening to you. When we don't have control of our lives particularly with regard to our employment and all that brings, feeling unsettled or very anxious is natural. Heck, many times many of us don't need to have all those things happening to feel anxious and upset. You'd be in the minority if you didn't feel anxious!

for the last week my symptons have been quite mild in comparison to how it has been(bright red palms with a few pustules appearing here and there with some peeling/flaking)

What you describe is very typical behaviour of PPP. Because it is an auto-immune condition, it does what it likes. Comes and goes at it's own will. That's what makes it so very hard to predict. After an utterly miserable and painful 18 months, I had an 18 month remission thanks to Doxycyline which was prescribed for something else. My foot presented again w/very mild PPP for a year, and then started to eat up my other foot scaring me to bits. Everybody is different with how it presents, what helps, etc.

I hope your diagnosis was made through swabs of your pustules, sent off to the lab? For disability you will need to have statements from your doc, derm, or whoever has diagnosed the PPP.

Please let us know what you have been/are using to control your PPP, and also please read about the success of Doxycycline, and Cephalexin (Keflex), both antibiotics.

I hope this helps.

Jane