New to Forum...

[electriccafe]

Hi,

I'm new to this disease and have found this forum really helpful. I've been recently diagnosed with pustular psoriasis (palmoplantar) and have found great information here that I'm sure is going to help me as I move forward... Thanks to all of you who participate here.

I do have a question. I've had a full blown eruption on both my feet and hands. My derm started me on topical creams/ointments. How long will it be before I start to see an improvement? I work with clients and my hands are so awful, I'm afraid to leave the house! I forgot to ask the doc and want an idea of when I should start bugging him if things don't get better.

thanks

Linda

[sergecosta]

Hi Linda

There are a number of people on these boards, as you might have already surmised, with experience with this particularly difficult variant of psoriasis. I am sure you will get a lot of feedback from them.

As for bugging the doctor, anytime you feel you need to speak with the doctor, do so. That is what they are there for. I "fired" two dermatologists because they gave me (one in particular) attitude. I used to tolerate it, now I don't and that is the way it should be. You need to feel better - and having your questions answered and anxiety allayed is a big part of that process.

Good luck and my best to you
Serge

[bratsareus]

Hi Linda,
Welcome to the boards. I have pustular psoriasis also on my hands and feet. We refer to it as ppp or pppp on here. There are pretty many of us on here with it. Its hard to say when you might see a improvement with what you're using. It varies from person to person what helps make it better. I would like to tell you that some people with this kind of psoriasis have responded great to a long dose of antibiotics. Mostly Keflex. Heres a link to Grannyfanny's thread who has had great success with Keflex.
http://www.psoriasis.org/forum/showthread.php?t=16816&highlight=keflex+ppp
There are many different things to use out there that does help at least make it feel better.Just post what problems you're having and someone will give you some ideas to try out.
Patty

[RichJ]

hi linda,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[kkellogg]

Hi Linda:

Welcome to the boards. I have p on my feet and hands too (plaque, not pustular)... makes every little thing a big chore...not to mention the pain. I agree with Serge that you should feel comfortable going to your derm with any questions/concerns and especially if you are in pain. I find that writing my questions down before appointments helps keep me focus in the "heat of the moment."

Some things that help me when my hands and feet are bad include:

Neosporin with pain relief (the ointment, not the cream) got me through the worst of times. It's the only thing that relieves the pain for me. Use only as directed though and don't overdo it.

Ice cold milk wraps for hands and feet - really helps me when my hands and feet are really "angry". Here's a link with more detail (it's the last post):

http://www.psoriasis.org/forum/showthread.php?t=17271&highlight=wraps

Over the counter pain relievers (tylenol, etc.) on a regular basis (if you can tolerate them and they don't interfere with anything else you may be taking). Keep on a good schedule to get a handle on the pain.

Fragrance free, dye free products (all your toiletries and detergents should be "free"). I also use baby wash for my entire body and hair b/c other things are just too harsh on my hands and feet - being in the water is bad enough.

I have recently had great success with my home light unit. Perhaps you could ask your doc about this option at your next visit.

Please be good to yourself - we all know how hard it can be. Also, have you thought about wearing cotton gloves to protect your hands - I know it is such a bummer having to meet with clients when you are so self conscious about your hands... I get mine a CVS (Capital Brand).

Hang in there and keep us posted. Glad you found us.

Krista

[PJ Leary]

Hi Linda,

Welcome to the boards! I have bouts with pppp as well, and know too well the potential for embarrassment associated with visible pppp on the hands, as well as the pain.

One highly effective form of treatment for many with hand & foot pp is PUVA treatment with oxpsoralen " paint " instead of the oral medication. That is the medication that makes you sesitive to the UVA light, but it is "painted " on the skin instead of injested. The up side to this method is that the side effects are minimal ( many people experience nausea ), and the only part of the body exposed to the UV radiation is the affected areas.

Some derms offer this treatment in their offices. The machines are commonly refered to as "hand and foot " machines. You might want to inquire about the availability of that treatment. It can be safely used in combination with most topicals. It would speed up the healing process for you if it is a possibility for you.

Regards,

[rockstoneUS]

I think pustular psoriasis may have no real connection with plaque type p.

I think it is a production of immune cells (neutrophils/white cells) whch goes over and above the normal levels during an infection like the common cold. Do a Google search for 'neutrophilia symptoms' and look for 'blisters on hands and feet' etc.

Lot's of things can cause this -

Fungus spores - Breathing in fungus spores from Damp, or rotten foods etc.
Reaction to metals - ingesting metals which you body can't handle
Other diseases - Random infections, SARS and Lukaemia also produce this reaction.
Drug withdrawls - Prescription drugs...especially steroids from use on plaque p can also cause these reactions.

These episode can also cause things like mouth/digestive ulcers as the imune cells attack these soft tissues.

It might be an idea to try and rule out the possible causes...obviusly apart from the SARS and Lukaemia as I doubt you have those!!....and look at supporting your system with proteins and vitamins/minerals and plenty of fresh water.

If you feel you may have been exposed to an ingestion of metals you may also find some benefit from 'electrolytic footbaths' or speaking to a doctor/alternative practicioner.

I am not a doctor or specialist, so these are just my opinions.

Best of luck :)

[MikeK]

Hi Linda,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear about your diagnosis. :( You've gotten some really great advice. Here's a couple of other suggestions that hopefully will be helpful to you.

Several people have posted here that they've gotten relief from pustular psoriasis by using an over the counter ointment called MG217 (www.mg217.com). MG217 comes in two formulas -- one with salicylic acid and one with coal tar. Salicylic acid is one of the few doctor approved methods for removing scales and coal tar has been used for treating psoriasis for many, many years.

Here in New Jersey, the salicylic acid version of MG217 only seems to be available at Walgreen's. You also have to be careful when you use any salicylic acid product because it can cause burns if you use it for too many days in a row. (There is NOTHING worse then a burn on top of psoriasis in my opinion.)

Coal tar has a very disctinctive odor. (Some people complain that it makes them smell like a road paving crew.) It can also cause stains and the stains can be very hard to get out. Unfortunately, coal tar is also a suspected carcinogen. Coal tar products may not be available in California.

As I mentioned, several people have posted here that they've gotten relief by treating their pustular psoriasis with MG217. Here are the links to some of those discussions:

http://www.psoriasis.org/forum/showthread.php?t=15186.

The other discussions about MG217 and pustular psoriasis are fairly old. Unfortunately, none of the people who participated in those discussions post here any more so we have no idea how well they are doing. Here's the links:

http://www.psoriasis.org/forum/showthread.php?threadid=2801&highlight=pustular+psoriasis;

http://www.psoriasis.org/forum/showthread.php?threadid=2799&highlight=pustular+psoriasis;

http://www.psoriasis.org/forum/showthread.php?threadid=2813&highlight=pustular+psoriasis.

A woman named Teresa (her screen name is Tree) posted that she got relief from pustular psorisis by using a combination of a drug called Enbrel (www.enbrel.com or http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/enb1159.shtml) and and a drug called Neoral (Cyclosporine) (http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/san1393.shtml). (More about both medications in a minute.) Sadly, Tree only posted here a couple of times. Fortunately, she included a link to her personal home page in one of her posts. I just checked, her home page current as of December 16, 2005 and it sounds like she's still doing well. Here's a link to the post where she included that link to her home page: http://www.psoriasis.org/forum/showthread.php?threadid=3409&highlight=pustular+psoriasis.

GrannyFranny has been battling pustular psoriasis for over 40 years. She can tell her story better then me. The bad news is that she's tried and failed just about every treatment that she's ever tired. The good news (which started out as bad news) is that she had to go on antibiotics when wound up in the hospital with a staph infection last summer. Those antibiotics helped psoriasis get better. Here's a link to one of the threads where she discusses her improvement: http://www.psoriasis.org/forum/showthread.php?t=16816.

GrannyFranny uses an electric jar opener to protect the psoriasis on her hands from the stress that comes along with opening a jar. Here's a link to the thread where she discusses it: http://www.psoriasis.org/forum/showthread.php?p=162088&highlight=Decker+jar+opener#post162088.

Destiny (her screen name is Destiny_AK) a college student from Alaska. She also has palmer planter pustuar psoriasis. She doesn't post very often. The last time that she posted she mentioned that she was having good results following the diet recommendations of chiropractor named John Pagano. He wrote a book called Healing Psoriasis. (He also wrote a cookbook.) I haven't read it, but I understand that, among other things, Dr. Pagano recommends that people with psoriasis should avoid foods from the nightshade family. Nightshades include potatoes, tomatoes, eggplant and peppers. (Tabacoo is also a nightshade.) To say that Dr. Pagano's views are kind of controversial around here would be an understatement. If you do a search for "pagano", you'll find a number of heated arguments, whoops -- I mean debates, whoops -- I mean discussions about Dr. Pagano and his recommendations. Here's a link to the thread where Destiny discusses her improvement: http://www.psoriasis.org/forum/showthread.php?t=16749.

I'm sorry that this turned into such a novel. You're probably suffering from information overload. :rolleyes: I hope that it helps in some small way. Good luck. Keep us posted. Feel better and please don't be a stranger.

Mike

[electriccafe]

Thanks to all of you, your replies are full of great information.

I've been using clobetasol for about a week, and my hands seem to be responding. I don't have any new pustules, but the hands are still covered in red spots (burst pustules) and are quite red. My feet are still developing new pustules, but I think the rate is slowed quite a bit.

I posted some pics of my hands in another thread, and will try to take some shots of my feet.

Right now, my derm just has me doing clobetasol cream every 2 hours during the day, and an ointment form under gloves/baggies at night. I see him again in another 2 weeks.

I haven't changed any of my hair care products, but I did go out and by some new hand soap for the kitchen and bathroom. I'm not sure how much of a difference this will make, but I can't live without my anti frizz hair goo!!!!

I do have a question about this disease. My first bout with it happened about 10 years ago - i got a small patch on my foot. I never got it properly treated and it went away on it's own after about 6 months. Then, about a year ago, the foot problem came back, and spread to the other foot. I tried some things with my doctor, that didn't really work, and gave up. I decided it was allergies to a new carpet... Eventually, it seemed to calm down, although it never really went away.

Right before christmas this year, I got a bad case of tonsillitis (one of my tonsils actually abscessed). I went on strong antibiotics. The tonisillits cleared up, but about a week later, my feet went into full blown eruption. The eruption seemed to pick up where it left off - the entire areas originally affected were covered, and it started spreading. The next day, my hands went into full eruption - the entire palm side of my hands and fingers turned bright red and I had pustules all over my palms and the lower part of my fingers.

If/when I get this current outbreak resolved, shoud I expect the next out break to pick up where this one left off? In other words, if I get another outbreak, will it immediately cover my hands and feet, or could it start small....

[grannyfranny]

Hi Linda,
No one knows when another flare will happen. My worst ones happened after trying some medications for p. They simply do not work for me. I kept trying all these years with ever new med that came out. The very worst was after Enbrel. This one put me in a wheelchair for about 4 months and I got a scooter for shopping,etc. One day, I said "ENOUGH" and quit walking. Now, my walking is limited,,,,,I refuse to walk enough to make my feet hurt. I hired someone to clean house every 2 weeks,,,,,with that DH and I manage to keep it fairly clean.

Since the infection in my finger, I have been taking an antibiotic(Keflex) and am still doing better.
I had a very active Christmas with the 3 grandchildren here for 2 weeks and was on my feet more than usual. Now, I have a cold and am taking it easy and my feet are getting better again.
I do believe that the stress of walking makes it worse. I bought some Croc shoes about 2 months ago and love them. They are not pretty but sooooooo soft and comfy.

The ointment and creams do not do much for me. I ran out of Clobetasol and am almost out of Dovonex. I have the spray,,,Clobet,,, but can't tell that it does anything. So, I gave them a chance and after 5 years, I am not going to get any more. I use Aquaphor Ointment for a moisturizer. And I wear socks all the time.

I try to eat a healthy diet, take some supplements including the Slippery Elm and Saffron teas. I stay off my feet as much as possible. Being in retirement helps but, my hobbies are craft and reading so,,,,while this does nothing for my hips,,,it helps my feet!

I know that people that work and have small children can not stay off their feet, but I have almost no pain since I started doing that. I have not had any cracked places on my skin in 3 years.

With this kind of p, one almost has to take matters into their own hands and do what you can to help yourself.

Good luck to you and I hope you find something that helps.

[PJ Leary]

Hi Linda,

Clobetasol, as you know, is a very potent class 1 steroid. Using it every two hours is a lot of medication, and should only be done under the supervision of a doc, as you are. If you are also occluding it at night, even with limited BSA involvement, you may be at risk for side effects.

There are two that come to mind right away. The first is the potential for thinning of the skin. In my experience with pp, if the skin is thinning especially on the palms and soles while having an active flare, it can become even more painful. Watch for thinning.

The second possibility is that exclusive use of a class 1 steroid can make you less responsive to lower class medications in the future. Mike can post some links as to possible methods of rotating classes of topicals in order to avaoid this problem.

All psoriatics know from experience that what works for one person may or may not work for another. We also know our bodies arer traitors that can not respond to a previously successful treatment or medication at any time. That is one reason why the rotational therapies are to frequently used.

I have done well with class 1-3-5 rotations overthe years when in extreme situation. Please keep us posted, and I hope that you get some more relief very soon.

Regards,

[JillyBean]

Welcome to the boards! I also have pppp, it started 1 1/2 years ago. I, too started with a steroid cream and it helped my hand some but not my feet at all. This is a very fickle and frustrating disease, and you will probably have to do a fair bit of experimenting over time to find what helps you. As hard as it is, I would advise being patient and taking it one day at a time. When I first was diagnosed, I wanted to try everything right away and it wore me out. Now I am trying one new thing at a time, systemically, and waiting for changes. the other bummer is that it takes 2-8 weeks to know if something is helping.

I have had some improvement with Dovonex, the ointment, used daily. It is not a steroid. It has really minimized the painful pustules, now I just get lots of red raised dots when I flare but very few pustules. Steroids scare me so I use them very rarely and they don't help that much. I am now trying PUVA light treatment which is supposed to be effective for pppp.

Good luck to you and I am glad that you found us!

Jill

[MikeK]

Hi Linda,

You mentioned:Right before christmas this year, I got a bad case of tonsillitis (one of my tonsils actually abscessed). I went on strong antibiotics. The tonisillits cleared up, but about a week later, my feet went into full blown eruption. The eruption seemed to pick up where it left off - the entire areas originally affected were covered, and it started spreading. The next day, my hands went into full eruption - the entire palm side of my hands and fingers turned bright red and I had pustules all over my palms and the lower part of my fingers.I'm not a doctor, but it appears that your psoriasis was triggered by the same infection to you had in your tonsils. As mentioned in my previous post, and as GrannyFranny mentioned in her response in this thread, some people with pustular psoriasis are helped by taking antibiotics. That's certaintly something that you should explore with your derm.

I always remember things about I post. I just remembered that I forgot to mention that Jean (who doesn't post here very often -- her screen name is luckyducky) posted, that she finds using Johnson and Johnson's Advanced Healing adhesive pads to be very helpful in dealing with her pustular psoriasis. Here's a link to the thread where she discusses them: http://www.psoriasis.org/forum/showthread.php?t=7429&highlight=Cordran+Tape.

PJ Leary expressed concern with the amount of Clobetasol you are using. Unfortunately, Clobetasol is one of the few medications that pustular psoriasis seems to respond to. Unfortunately, as PJ also mentioned, Clobetasol is also a very powerful Class 1 or Super Potent steroid. Steroids are grouped -- by strength -- into 7 different groups or classes. Each class is assigned a number. The lower the number the stronger the steroid. Most derms limit the use of any Class 1 or Class 2 steroid to twice a day to two weeks max (or the weekends only) followed by a break of at least a couple of weeks. That's to prevent potential side effects such as skin thinning.

PJ also mentioned that she has done well with class 1-3-5 rotations overthe years when in extreme situation.You might be able to keep your psoriasis under control -- and minimize the potential side effects- by using Clobetasol for two weeks, followed by a Class 3 steroid for two weeks and then a Class 5 Steroid for two weeks then starting all over again. You might even be able to take a short break from the steroids by using Dovonex (http://www.rxlist.com/cgi/generic/calcipo.htm) or some Tazorac (http://www.rxlist.com/cgi/generic2/tazarotene.htm) (or both) for a week or two. You can certainly do this 1-3-5 rotation even if you and your doctor decide to add another treatment -- such as PUVA (http://www.psoriasis.org/treatment/psoriasis/phototherapy/puva.php) or antibiotics -- to the mix.

Here's a link to a thread that includes a post by yours truly that has a copy of the NPF's Steroid Classification Chart in it:
http://www.psoriasis.org/forum/showthread.php?t=6255 and here's a link to the actual chart: http://www.psoriasis.org/treatment/psoriasis/steroids/potency.php.

I hope this helps.

Let us know how you are doing and if you have any other questions.

Mike

[MikeK]

By the way, I just noticed that you are in Boston. Given how difficult that pustular psoriasis is to treat, you might want to consider getting a second opinion from a doctor who is affiliated with either Mass General or Brigham and Woman's. PJ Leary orginally from the Boston area and she speaks very highly of a derm named Ernesto González. You might want to consider getting a second opinion from him. Here's a link to his contact information: http://www.massgeneral.org/doctor/Medical_Professional_Detail.asp?MPR=4574&ON=13633.

Also, I'm from New Jersey, but some of us who've become friends from posting here are getting together in the Boston the weekend of January 26th. I've gone to several similar get togethers here in the New York area (and the weekend before Halloween in Salem, MA) and I can't being to tell you how it feels to get together with other people who are going through the same issues as me. It would be great if you could join us. (At least one other person who will be joining us on the 26th also has pppp.) Here's a link to the thread where we've begin discussing our plans: http://www.psoriasis.org/forum/showthread.php?t=17816.

Here's a link to a thread (including some pics) about the Halloween weekend gathering in Salem: http://www.psoriasis.org/forum/showthread.php?p=206125&highlight=Diana#post206125. And, here's a link to some pics from the one recent get together in New Jersey: http://www.psoriasis.org/forum/showthread.php?p=210887&highlight=Wake+Karen#post210887.

Mike

[PJ Leary]

Hi Linda,

I did not realize that are in Boston until Mike emailed me the information, thus this post. If you would like to get in to see Dr. Gonzales, please email me at this address:

raleigh@support.psoriais.org

I will be happy to contact Dr. G on your behalf and see to it that you can get in quickly.

Regards,

[nla]

Dear Linda,

Sorry this "welcome" is overdue! I have been lounging around with bronchitis since mid last week so I haven't logged much PC time. Anyway, I am also a fellow hand/feet PPP sufferer. I can sooooooooo relate to what you are going through. As you will discover, this is the darndest disease to treat and can be quite frustrating! What you WILL learn, though, is that what helped last year will not do a thing THIS year and vice versa. What has helped me the most so far: when my hands are really flaring I use Cordran Tape which helps a lot. At least it keeps the cracking to a minimum and is nice for a little cover up if you use your hands in public. I have good luck if I use the clobetasol on my feet but have not used it on my hands. In fact, last year I tried the Clobex lotion and had even better luck with that. Although, PLEASE, PLEASE, PLEASE take PJ's warning seriously. That stuff, while it does help, can make your P come back way worse than what you started out with, even if you wean off of it gradually. I rarely use clobetasol anymore for that one reason. What I find helps (for the moment anyway) is urea cream on my feet over which I then slap on a layer of CVS brand zinc oxide cream and wrap in saran wrap overnight. I even use it during the day and so far (knock wood!) it helps to keep my feet soft enough for walking. Also something you might want to search is Soriatane. I have been on that for a couple of years now and although it has some bad side effects it can sometimes help pustular a good deal. Henri has some GREAT posts on it that you should check. I always call Henri our "resident Soriatane expert" :) He was a wealth of info for me when I first came here, even when I had already been on it quite a while. It's only a consideration if you are NOT planning for children. I didn't actually think it was helping me all that much until I was diagnosed with PA and started Enbrel. I tried to get off the Soriatane several times, only to end up getting some new and different spots (plaque) on my legs. Ugh! What a battle! For that reason I am still on Soriatane WITH my Enbrel for the PA. I know lots of folks say that Enbrel doesn't help the pustular much but since I have been on it I have had incredible clearing with my hands! My feet have also cleared "some" although not quite as great as my hands. Since my hands are 99% clear (most of the time) now I use Elidel on my hands followed by Aveeno hand cream. It's been my charm at keeping them clear! The one big thing that does make my own P much worse is if I use my hands a lot for things (pressure).

This is the place to learn a lot, Linda. You would do well to take PJ up on her suggestion. (If I get the urge to change derms I am gonna ask PJ to work some magic for me with her Dr. G :) ). Also, I see you are in the Boston area. I am not too far from that area, up in Southern NH, just over the MA border.

Well, can you tell I am sick?? LOL Just noticed I have droned on and on with no point at all - sorry!

Just know this, Linda, you are in GREAT company here, will learn so much from this site and its wonderful folks and you WILL eventually find something that helps.

Good luck and if I can answer any pustular questions for you, please feel free to ask! I will be back online more once I am over this darn bronchitis stuff!

Take care...
Nancy

[electriccafe]

Thank you all for the warm wishes... My hands are clearing up nicely and my feet finally seem to be responding. I've been really nervous from all the warnings on the clobetasol, from you all and from my own research, but I also didn't want to go against my doctors advise. I ultimately decided, however, to slow down on it and there don't seem to be any repercussions.

My hands are clearing - no new pustules for a few days now and the old ones have "scabbed over". All the skin on my hands is peeling off. While my cuticles have never looked better, it's a strange experience. I have now developed this disgusting obsession with picking skin off my hands. I'm grossing myself out, lol. Also, even though the pustules are going away, my hands are still red and swollen. I'm hoping this will eventually go away...

My feet aren't quite as far along as my hands... I'm still getting new pustules. Also, the scabbed pustules on my feet have turned to big black dots. Still lots of itching, and I have some painful cracks. Fortunately, it's limited to the arch area, so it doesn't hurt to walk too much.

I have another two weeks before I see my derm again, but I am going to call the office later this week to find out if I should still be using the clobetasol (even in my limited way) after the two weeks.

Thanks for the invite to the boston meeting - I'm interested in joining. I'll jump onto the other thread to see what's being planned....

take care all, and thanks again.

Linda

[PJ Leary]

Hi Linda,

I just read your post where you merntioned your skin peeling off of the palms of your hands. Go very gently there!!!! This is a potential lesson in pain you do not want, please believe me.

If you remove the entire epidermal layer of your palm, you will be in months of healing and extrordinary pain. Resist the urge to " peel " or in any other term, remove the skin on either the palms of your hands or the soles of your feet.

[MikeK]

Hi Linda,

I don't have psoriasis on either my palms or my feet. I'm also gulity of picking off the dead skin from the places where I do have psoriasis. That being said, I join PJ in cautioning you to try not to pick off the dead skin and to pick very, very gently if can't bring yourself to stop. (I know that stopping is easier said then done.)

In addition to potential of causing the problems that PJ described, picking at your psoriasis also causes the potential of something called the Koebner effect. The Koebner effect basicially means that any injury to an existing patch of psoriasis can cause the existing psoriasis to get worse. The Koebner effect can also mean that an injury to a previously healthy patch of skin can cause a new patch of psoriasis to develop. Not all injuries result in the Koebner effect and not all psoriasis patients experience the Koebner effect. Here's a link to a previous discussion: http://www.psoriasis.org/forum/showthread.php?t=10988.

You might want to try using the salicylic acid version of MG217 (www.mg217.com) to remove dead skin. As I mentioned in my original post in this thread:MG217 comes in two formulas -- one with salicylic acid and one with coal tar. Salicylic acid is one of the few doctor approved methods for removing scales and coal tar has been used for treating psoriasis for many, many years.

Here in New Jersey, the salicylic acid version of MG217 only seems to be available at Walgreen's. You also have to be careful when you use any salicylic acid product because it can cause burns if you use it for too many days in a row. (There is NOTHING worse then a burn on top of psoriasis in my opinion.)I hope this helps.

I hope to meet you in Boston on the 28th!

Mike