Author Topic: PPP (Palmoplantar Pustulosis)  (Read 423440 times)

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bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #20 on: Wednesday March 05, 2008, 11:57:19 AM »
Just lost my post!
Dear dear barbaraann that looks so painful! With regard to the "lines" you are seeing BA, I would say they are probably creasing lines. Whenever there is severe inflammation, in places such as the arch of a foot, behind knees, elbows, neck, top of thighs, wrists, the skin creases and it looks like red lines. The skin is so swollen that it creases at joints of course, or where there are grooves like the arch of a foot. If the lines are running more vertical it will be blood vessels at the surface, swelling, which of course is in part the cause of the inflammation. Sometimes they can be seen due to excessive swelling.
regards Bunnie

bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #21 on: Wednesday March 05, 2008, 12:23:48 PM »
Hello Marty,
basically  marty, an allergy will cause a "hive like" reaction, but if indeed you DO have an allergy, it will be seen in your blood or biopsy. You could also have a patch test done on certain things which you think you may be allergic to. This however has nothing at all to do with ppp. Psoriasis and its phenotypes such as ppp is a genetic fault in your genes, and food cannot put that right ever, neither can drugs! All that can be done is to control the symptoms of the pathogenic result (being the ppp in you) (Liga, EbA in me) of the abnormal (autoimmune) response. I am not saying that an allergy cannot trigger an autoimmune response , in some people it can certainly, but the offending agent will be there in the blood and biopsy.
You not only have faulty genes giving you a predisposition to autoimmunity, you and others on this thread also carry a faulty hereditary gene to the specific disease itself, making the predisposition specific. You can still have another entirely different autoimmune disease, going on at the same time, but manifesting very differently, such as Gluten enteropathy, which is an autoimmune disease of the gut.
However if this were the case, you would have severe symptoms, and certainly there will be evidence of it, in fact there will be evidence of any deficiency in essential nutrients in the blood. If there are deficiencies then your doctor will prescribe these supplement nutrients.
If you feel you are allergic to certain foods , get it checked out, because naturally, if you do get a reaction to anything (whether or not it is an allergy) it will exascerbate the manifesting disease that you have and always will, unfortunately. Psoriasis,or PPP, or my disease, is part of our individual DNA, and no food can alter that, not even drugs as yet, but they will I think in the next 5-10 years be able to make a drug that can alter or regulate the behaviour of some of the genes involved. It is a combination of gene factors mainly which are the cause of these autoimmune diseases. If you need to discuss it further please pm me. Hope this helps! regards Bunnie

Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #22 on: Wednesday March 05, 2008, 05:01:56 PM »
Hi girls:

Interesting posts.........Barb, what a testimonial those photos are. I'd 'forgotten' just how bad you foot looked. There's no comparison! Looks like a different foot. I remember thinking that of mine. I have one question though -- how on earth do you get your foot onto a countertop (in the first place) and then photograph it (in the second place) :-\

I used to ask DS who would blanche at the mere idea, then say that's totally disgusting ::)

Your explanation of swelling very informative Bunnie, I didn't know that.

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ppp is a genetic fault in your genes, and food cannot put that right ever, neither can drugs! All that can be done is to control the symptoms

I remember examining my diet and keeping a food journal in the hope of finding something. There wasn't anything, and nothing taken away, or added to my diet made a darn bit of difference. That's because is it autoimmune. And control of it is what we are after.

I always say that mine is in remission. It's not "gone". I'm so very thankful for the remission -- each time I walk I feel so blessed........and truly hope the same thing for all of you.

 :bighug:
Jane
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #23 on: Wednesday March 05, 2008, 06:57:20 PM »
Hi again:

After looking at Barb's pics, I thought I'd post a couple of mine.......before and after.....
I'll do them one at a time I think:

Today:




« Last Edit: Wednesday March 05, 2008, 07:05:12 PM by CalamityJane »
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #24 on: Wednesday March 05, 2008, 07:02:31 PM »
What it used to look like..........

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bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #25 on: Wednesday March 05, 2008, 07:17:35 PM »
Oh dear Jane! Awful, I'm so glad you got that episode over with. I was reading loads on different autoimmune diseases (all have the same underlying problem) and this was from this link. I think Doxy can be added to that now!!
http://www.merck.com/mmpe/sec10/ch116/ch116b.html#CACHEBAG
Quote
Pustular psoriasis of the palms and soles
 Gradual onset deep pustules on palms and soles.
 Flare-ups may be painful and disabling. Typical psoriatic lesions may be absent
 Treatment: Systemic retinoids
Prognosis: Waxes and wanes
 

bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #26 on: Wednesday March 05, 2008, 07:34:38 PM »
Hi bunnie, that's a good link.

I find it disturbing that this systemic retinoids are being offered (they were to me), before something as innocuous as Doxy or Keflex is even tried. The side effects from these can be really really horrible. The difference in my photos is like night and day and so obvious.......it's a shame that so many people benefit from Doxy for their skin 'by mistake' so to speak, because it was prescribed for a different thing, but fixed their feet as well.........THEN the docs/derms see the proof!!

Thanks bunnie

Jane
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bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #27 on: Wednesday March 05, 2008, 10:51:27 PM »
Hi Jane, indeed they can be horrible, but if one is so very bad then there is no choice, because the level of severity can be different from one person to another.
For eg. take a person with any form of autoimmune disease, ppp, lichen planus, Liga any of them.
They all wax and wane in severity, but the severity part may differ from one person to another with the same condition, and also the waning factor may not occur as often from one person to another with the same condition.
So what you have then, is a group of people with say ppp, but 2 or more have their ppp waxing very severely and stubborn to treatment, and added to that, it tends not to wane for many months on end, leaving these few to cope with very severe symptoms and over a very long period of time. This results in general debilitation and ill health, and can cause further complications with infection and constant pain; not to mention situations like my own which was so severe it resulted in total blindness very rapidly, and which despite all efforts, using a list of chemo drugs  IV steroids, and suppressants ,as long as my arm, could not be brought under control, it was just too rapid and severe. I would have tried anything to stop going blind , but that process I know now could not have been arrested, it was affecting too delicate a place. If you look at my pics in the liga album, you will see that I had an allergic reaction to a cefusporin, but because I also have the disease I have, my skin just slid off. Those pictures were taken after 8 days of burn treatment, but too ill to be air lifted home in a helicopter. It was 11 days after the first part of my OOKP surgery, the necrolysis occurring on the 2nd day post op.
fondly bunnie

Offline barbaraann_38

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Re: PPP (Palmoplantar Pustulosis)
« Reply #28 on: Wednesday March 05, 2008, 11:18:13 PM »
Hi everyone,

Wow bunnie, thank you so much for the input.  Great info!  Then site you posted was very interesting, and as Jane said;

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I find it disturbing that this systemic retinoids are being offered
They were offered to me as well, I did take the soriatane for two months and did see improvement on my hands, however thats when my feet started breaking out.

When I talked to my derm about taking the doxy, he said "We use it for people with acne all the time", so derms know about them, they just don't seem to be making the link between ppp and doxy yet.

Great pics Jane...  yes, like looking at my own feet.  I'm so happy they look totally normal today!!  :bounce:

About the taking pics of my foot... LOL, didn't I tell you I worked at the circus as a contortionist??   :crazy:  Just kidding of course!  Um, I don't know, I just put my leg up on the countertop (in the bathroom, so not as high as the kitchen) Then I'd put the camera on the edge/corner of the counter and snap away... hoping for one to turn out!!  As you can tell with my first pic, I hadn't discovered that technique yet.  It's hard to take a clear picture of ones foot!!  I did ask for help once, I stood, with my knee bent, foot back, and the pic was taken from behind me.. I felt as if I was a horse being hoofed!!  I was laughing so hard the pics didn't turn out at all!

Marty, I have to say, when it comes to diet, I went that route.  I was searching for a cure.. or way to totally clear this up with diet.  That lasted for about a month.. when I came to the sad realization that ppp was a part of me, and always would be.
   
We have a glutton free store near us, they fix entire meals for you!!  I couldn't afford the meals, but I did try much of the glutton free items for baking.  The woman that owned the store was so kind and very sympathetic to my condition (my hands at the time) she had tons of suggestions for me, and assured me that freeing my body of glutton would clear everything up.  It didn't seem to help me at all...  I'm not saying that you or anyone else should not try this as you may have a totally different response.  But I agree with bunnie, this is an autoimmune disease, and diet will not change it. 

There is nothing we can do to cure this, as most of us know, but to keep it under control, and as Jane says to put it in remission it our main goal. 

I'm so excited about all the posts/info we're getting here.  I hate the thought of others suffering with this condition.  But I gotta tell you, it makes me feel so good to know that I'm not the only one who has it!!

Take care all... time to fix dinner :D
Barb

Just before I was going to post this I noticed a new post had come in.. My God Bunnie, you have been through hell!!  I'm going to go and try to find  your pics and read up on your journal a bit...  You have been a wealth of information, and I thank you.
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #29 on: Thursday March 06, 2008, 12:02:01 AM »
Hi there:

Quote
leaving these few to cope with very severe symptoms and over a very long period of time. This results in general debilitation and ill health, and can cause further complications with infection and constant pain; not to mention situations like my own which was so severe it resulted in total blindness very rapidly, and which despite all efforts, using a list of chemo drugs  IV steroids, and suppressants ,as long as my arm, could not be brought under control, it was just too rapid and severe.

Bunnie, yes you are correct there, and I should have added that. I do believe there are times when the "big guns" as I call those drugs need to be brought out.

Quote
didn't I tell you I worked at the circus as a contortionist??   

Got a laugh from that Barb indeed! ;D Tis hard for one to take pics, I put my camera on timer this morning, it was almost easier than listening to son moan and groan about my disgusting feet!

Yes good posting here, and good results thus far with our small group. I wish wishiwere would check in and let us know what happened w/her.

Jane
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bunnie

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Re: PPP (Palmoplantar Pustulosis)
« Reply #30 on: Thursday March 06, 2008, 02:35:58 PM »
Hi ladies, I was looking for this when I last posted and couldn't find it at the the time, It explains part of the underlying problem in all of us with autoimmune disease, and confirms what I said in my previous post, and basically the point I am always trying to make! If I may just make bold the bits which are particulary relevent, and are notable. (please note this is solely to make the notable bits stand out, and not to appear as shouting)

Quote
The type of autoimmune disorder or disease that occurs, and the amount of destruction done to the body depends on which systems or organs are targeted by the autoantibodies, and how strongly.
Disorders caused by organ specific autoantibodies, those that primarily target a single organ, such as the thyroid in Graves' disease and Hashimoto's thyroiditis, are often the easiest to diagnose as they frequently present with organ related symptoms.
Disorders due to systemic autoantibodies  (not to a specific organ) can be much more elusive. Although the associated autoimmune disorders are rare, the signs and symptoms they cause are relatively common.
Symptoms may include: arthritis-type joint pain, fatigue, fever, rashes, cold or allergy-type symptoms, weight loss, and muscular weakness. Associated conditions include vasculitis (inflammation of blood vessels) and anemia.
Even if the symptoms are due to a particular systemic autoimmune condition, the symptoms will vary from person to person, vary over time, vary with organ involvement, and they may taper off or flare unexpectedly.
Add to this the fact that a person may have more than one autoantibody, have more than one autoimmune disorder, and/or have an autoimmune disorder without a detectable level of an autoantibody and you have a complex maze  that your doctor must often take you through to arrive at a diagnosis.
Bunnie
« Last Edit: Thursday March 06, 2008, 02:46:24 PM by bunnie »

Offline sierrabear

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Re: PPP (Palmoplantar Pustulosis)
« Reply #31 on: Saturday March 08, 2008, 04:49:04 AM »
Here are a couple of pics of my hands the first was taken 3/06 and the second was taken 8/07. I will take another of my hands tomarrow and post it here. Even a bigger difference than the second. It was all done with diet. I have not taken antibiotics or immune lowering drugs.
Debbie



Offline barbaraann_38

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Re: PPP (Palmoplantar Pustulosis)
« Reply #32 on: Saturday March 08, 2008, 10:42:48 AM »
Good Morning Debbie,

Great pics!!  Is this PPP that you've been diagnosed with?  I'm assuming it is.

Please please prove us all wrong!! :D  How did you do it with diet alone?  What did you avoid or add to your diet to make this go away??  You have no idea how interested we all are here!

I believe when each of us started breaking out with ppp we all tried to modify our diets to some extent, I for one had absolutely no success with it.  But then again, at the time I had no idea what I was dealing with.  I avoided gluten, dairy, I tried vitamins, I tried supplements.... nothing worked for me.  It just continued to get worse, until I finally had to see a derm for it, at that point my fingers and hands were like second degree burns.  With the derm, before I tried any harsh drugs, he had me use the uvb light and topical steroid creams, they didn't work either...  Then on to the harsh drugs, they helped, but I didn't want to pay the price with my body, and I didn't have anything as serious as bunnie who wound up losing her eye sight.

Debbie, if you would be so kind as to pass on your secrets, I know many here would be very interested!

Thanks!!
Barb
P.S.  Good luck with the weight loss, I love  your "ticker"
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #33 on: Saturday March 08, 2008, 05:00:08 PM »
Hi folks

Quote
I believe when each of us started breaking out with ppp we all tried to modify our diets to some extent, I for one had absolutely no success with it.  But then again, at the time I had no idea what I was dealing with.  I avoided gluten, dairy, I tried vitamins, I tried supplements.... nothing worked for me.

I did pretty much the same sort of thing as well, to no avail. The fact that Doxy put it into remission was a fluke for me, as it was prescribed for something else, but my skin reaped the benefit also.

I also think that some people can go into a sort of 'spontaneous' remission without anything at all. These autoimmune diseases do wax and wane, and some are more severe than others. Feet can clear completely for instance and the disease will then manifest itself in hands. Like it's teasing us!

I'm a great believer in a healthy diet and always have been.

Jane
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Offline sallyann

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Re: PPP (Palmoplantar Pustulosis)
« Reply #34 on: Tuesday March 11, 2008, 01:24:32 AM »

Debbie, if you would be so kind as to pass on your secrets, I know many here would be very interested!


Yes Debbie, please do share!

Hi guys-I've been away from the computer for a while.  Warmer temps have hit, so I was off buying new pots for the pond and bulbs for the garden.  Wow, you have had some great discussion's.  I took Jane's advise and started taking the doxy last week.  I can't say I have had overwhelming results yet.  It does appear that the new cops of pusties are slowing down on my hands.  The derm gave me a drying agent to put on the new eruptions so it's hard to tell which one is working.  At least my hands are not raw and bloody like they were two weeks ago.


You would think, if  ppp is rare there must be something we all have in common.  I've checked with family members and no one except my aunt has had psoriasis and that was on her scalp. If it's DNA, maybe we are all related (LOL) A more common factor in my family is a bum gallbladder.  Both sides of the family have had gallstones.  I had mine removed when I was 16.  January was my 30th year living with out one. Anyone else have gallstones or a gallbladder removed?  Just a shot in the dark.

I guess I have more questions than useful information to share for now.  I'll keep you posted with respect to the Doxy.  It's been 5 days now.  I'm still taking the biotin as well.

I'm really glad I found this board.

Think Spring! 



Sally

Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #35 on: Tuesday March 11, 2008, 01:48:57 AM »
Hi Sallyann

Good to hear from you. What doseage of Doxy are you taking?

We've had good results for our few folk w/Doxy and about the same w/Keflex. It's hard to tell right now, but I hope you'll have the success I had (by accident) and Barb is having. Keflex has had a good result as well, if no sensitivity to Penicillin.

Give it a while, 14 days anyway, then compare. If you can take pics, do that for reference.

I'm chatting w/you, so will finish this for now........

Give it it's course if you can.

Jane
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Offline barbaraann_38

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Re: PPP (Palmoplantar Pustulosis)
« Reply #36 on: Tuesday March 11, 2008, 02:44:01 AM »
Hello all...
Jane I just missed you in chat.  I had just finished the spell check on my journal, saw your name and went right to chat.. thought I'd lost my post, but.. whew, I hadn't!

Sally.. like Jane said, keep with the doxy, give it a few more days... I so hope it helps you like it did Jane and I!!!!!!

Gall bladders.. hmmm, yeah had mine out a couple of years ago.  Honestly I have never been so sick in my life!!!  Sooo sick in fact that I actually walked into the emergency room.. and laid down on the nasty, gross, stained, smelly, yucky, germ infested sofa right by the door... AACCKK.. I was really sick!  Was admitted that evening, and had it taken out that night.  I would have preferred to die at that point.. but being I was at the hospital, they wouldn't let me.  After the surgery, the doc asked me if I'd been jostled around unusually lately... hmmm, had to think for a split second... and said YES... the road I drive on going to work is sooo bumpy (it was during the spring thaw), that I darn near hit the ceiling sometimes when I go over them.  He told me that's probably why this happened??!!  Sounded good to me :).

Sally, keep asking questions.. we have to, we may not find the answers, but sometimes it very interesting finding info while in search.

Take care everyone.. it's way past my bed time.  I should be in rare form tomorrow!!

G'night,
Barb
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #37 on: Tuesday March 11, 2008, 04:12:54 AM »
Hi Barb -- sorry I missed you in chat........ :( we should arrange a date!! ;D No gallatrone history for moi.

Sally -- it seems that you are having some result from the Doxy. Your hands sounded very, very raw & painful before.

Jane
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Offline CalamityJane

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Re: PPP (Palmoplantar Pustulosis)
« Reply #38 on: Wednesday March 12, 2008, 01:26:10 AM »
Hi Barb -- just read your journal and re the Doxy -- have you lowered the doseage?

This is only my opinion -- after my course that put the PPP into remission, I'd look at my foot, and think........hhhuumm, now if I'd had another week or 2, I think this redness would be gone.

My advice would be to take the proper doseage (200 mg p/day), till your feet look really really good. My theory behind this thinking, is that if you can have it completely gone, it will take much longer to get going again, whereas if you stop, and you still have some flaking or pustules, it's sort of like winding it up, so to speak. If you can stop the Doxy when you have a 'clean foot', so much the better. The more healthy looking & more improved feeling of the foot, indicated to me that the improvement had gone deeper than the surface. I fully admit that this may be total twaddle! :laugh:

This is just my own opinion, from my experience, and each person is different.

One member of the forum took fairly large doses of Keflex for about 2 years I think, even though she was completely clear. But she'd lived w/PPP for 40 years. She eventually stopped the Keflex, hasn't been around, so I'm assuming she's OK. It was such a joy to her to be able to go out and about! As it is to me.
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Offline barbaraann_38

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Re: PPP (Palmoplantar Pustulosis)
« Reply #39 on: Wednesday March 12, 2008, 09:28:29 AM »
Hi Jane,
 
I think you're right, and I do agree with you...the doxy shouldn't have been lowered at this point.  I think the doc should have kept me on the full 200mg per day rather than knocking me down to 100mg per day... which is what he did the  last time I saw him.  I just finished the second course of doxy.  I've now been on it for four weeks.  The first two weeks were the 200mg per day and then this last two weeks the 100mg per day.  Right now I'm feeling a bit of the itching coming back and there is that spot near my heal that won't seem to go away. 
I think I'm going to call the doc today and tell him what's going on, I'm pretty sure he'll agree with me and raise the dosage.

Quote
I fully admit that this may be total twaddle!

Not at all Jane, you know I really appreciate all the in put you have given me thus far!! :hug:

Okay, here's another shot in the dark, does anyone else have restless leg syndrome??  It's something I've had since I was a kid.  Doesn't bother me every night, sometimes it doesn't bother me for months... but once in a while my legs just won't go to sleep and I have to get up and walk around a bit.  It's nothing serious.. and honestly I never knew anyone else ever had this problem until one night about 10 years ago when I was up because my legs wouldn't sleep.  I went to the computer and typed in "legs won't sleep" under search..  low and behold I was bombarded with a TON of information...Once I got to the part that said something about it being a neurological disorder I stopped reading..  Didn't need to add that to my life's woes at the time! 

We all have to stick together on this.. you guys are all so wonderful, you've given me more strength and hope than you'll ever know! :bighug:


I hope everyone is doing well.. Jane I hope you're feeling better soon!!  Take care all, and have an incredible day!!
Barb
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