palmoplantar pustulosis psoriasis

hi i dont no if im on the right web site.
i have had palmoplantar pustulosis psoriasis on my feet hands scalp and nails from 11 and it took 2-3 year to get told what it was. i am now 20 and still trying to keep it under control. i have had uv treatment but i got burned from it so not allowed it any more. i have tryed every cream and i dont seem to get any where. i dont no what to do about my scalp i did lose some hair a few years a go which did slowly grow back. i really want to know if anyone has this and if you know any thing that is good to use xx

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Some members on this site sand off w/ sandpaper the thick skin on the feet,
so that creams can absorb. I don't know if this is safe, but a
Podiatrist may be able to do this for you.

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Many here have it. Here is a good thread for helpful hints to make your life easier.

http://www.inspire.com/groups/talk-psoriasis/discussion/palmoplantar-pustul osis-psoriasis-1/

I use a v shaped cuticle cutter to keep the dead skin cut off my feet and hands. People use sandpaper when they have not been cutting it off and it builds up very thick.

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Hi, I developed this about 2 years ago, I don't have it on my scalp, I know what has helped me, I no longer have blisters and I have slight dry skins still but not bad. My doctor prescribed me low does predisone 4 miligrams now I started with 5, sulfer anti-biotic, and Lamisil pill for nails. My nails have improved a lot. I have not had blisters since last October when I started this treatment. I am 44 years old so I'm not sure if that matters or not. What I use for moisture is plain old Vaseline. I don't use steroid creams anymore. Also what helps are gel socks at night. Good luck, I know your pain. I tried Humira and Embral without success also before starting this treatment.

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Long ago, I was given prednisone. Be VERY careful if and when the doc weans you off of it! I had the worst, longest lasting "rebound," even after slowly coming off of it. Also, I am assuming you are a woman (but this goes for men also), long term use of prednisone can cause osteoporosis, among other problems. Personally, I will never take prednisone again!

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Samantha,

I developed this form of psoriasis at the age of 35. Later I also developed psoriatic arthritis. I was misdiagnosed for over 2 years, then started on steroids, gout meds and others. I began the biological treatments when they became available. First: Amevive which I had good results with. Next I was put on Enbrel which did nothing for me either good or bad. Next, I was put on biological infusions called Remicade - but my immune system got so knocked down by it I came down with the worst case of shingles my doctor from Baylor had EVER seen. After that I was put on a combination of Humira and Methotrexate, but alas it has stopped working. A couple of weeks ago they changed my medication to 17.5 mg of Soriatane. I haven't seen any results yet, and my psoriatic arthritis is flaring again but they say sometimes it gets worse before it gets better with this medication. They do NOT recommend this drug if you are planning on having children, but at 48, children are no longer a consideration for me. It can be done, but I think you have to be off the medication for at least 3 years before conceiving. (goes for both men and women).
If I were you, I would research the biological medications and talk to your doctor. This form of psoriasis is pretty stubborn but it CAN be controlled. I am going gluten free to see if that helps, and so far I haven't noticed a difference, but again it has only been a couple of weeks. I have learned to be patient with new treatments. Hang in there. I know how hard it is to deal with. And good luck to you.
Donna

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Oh, one more thing that is super helpful in making you more comfortable. My doctor prescribes a steroid cream (but even Vaseline helps alot!_) Put it on your hands and feet at night, wrap them in plastic wrap and put some socks over that to keep the plastic wrap on. It will help keep your skin pliable and soft.

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Samantha, I took soriatane for about a year. It helped my skin a lot, but the side effects became unbearable and I was losing too much hair. I was told it does NOTHING for psoriatic arthritis. I was just diagnosed with a serious case of Psa in my thoracic spine and my sternum, after going through MRI's and a bone scan. I am now taking Humira and it has done wonders for my arthritis, and my skin is better also. I would call it manageable now, after 4 injections.

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hello samanthaj

welcome to the plantar/palmar society of the npf. first, i don't have any scalp involvement, but my feet and hands (hoof and mouth) are a nightmare. i've had this for 5 years now. i have been in the past been prescribed raptiva, methotrexate, stelara and now soriatane. these medications only stopped the itching, blistering. but nothing changed as far as appearence. so now i go low tech. location location location...moisture moisture moisture...regardless if it's prescribed or over the counter you need moisture. if i'm doing good i sleep with gloves on my hands at night and wear thick socks to bed. vaseline is a place to start. i use aquaphor, a&d ointment, which ever. and then, and i know this sounds gross, but i manually remove all of the skin that i can. rewrap let it cook for awhile then start all over again. when the soles of my feet of really thick i use a razor blade to slice off all that i can. i have recently started using sandpaper to grind down some of the thick areas. when i go out in public i wear gloves with the fingertips cut off. i bought fingerless gloves on the internet, in different colors because a girl has got to be fly. when i'm at home i wash my hands as good as i can, drop a dollop of aquaphor on my hands, cover with a white cotton glove, no fingertips, and then use rubber gloves that i cut the tips off of. it's the only way i'm functional even to this day. a couple of weeks back i had gotten the thick skin on my hands off and ended up with hands the were as red as a monkeys butt. that was a good day.

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I totally understand people's reaction when I say I take presisone, My dose is only 4 mil a day, I'm even going to try for 3 to see what happens. I am so much better with my combo of drugs than I was with out it. I talked with my doctor, I understand the long term side effects. He told me I might have problems 20 years from now. I exercise daily lift weights. I am 44 years old, self employed, I need my hands and feet for work, with out my meds I would have nothing, so I'm taking my chances. After trying biologics, Methotrexate, that did nothing, I am extremely happy with my progress. I know it is not for everyone but 4 miligrams is not a lot and I have no side effects right now. I say no blisters since last October is a success! I even been wearing high heal sandals this spring!

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Sandy, do you have psoriatic arthritis too? - Donna

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I'm not sure. When I wear certain shoes or walk long distances I get a pain in the balls of my feet. I don't know if this is related or not, I had that pain before getting blisters and still get the pain after the blisters are gone. No other problems. No pain in hands at all.

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sandy
does not sound lke PsA. U have no joint pain

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I was having pain in my heels and went to an orthopedic dr. He said it was "bone spurs" and had me get a shoe insert from a sports store. I was shocked and really did not believe him. Came home and googled it and sure enough, that was what was suggested... So I went and bought the inserts and within days no more heel pain! Now I have PPP on the bottoms, heels and sides of my feet so I cannot wear any shoes at all. It will be 3 years this July since I wore shoes and thank goodness the heel pain has not come back!

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hello mes78613

i can't wear shoes either. no let me rephrase that, i can't wear thong sandals. it's been 5 years. it's like time just stopped

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I posted this on another thread, but I've had great results with the nail dremel you can by at a beauty supply place (I got mine at Sally Beauty Supply. When the skin starts to build up I'll sand it down a little every day. I found if you go nuts with the dremel, even if you don't break the skin, it's a shock to your system. I steadily do it for about 2-3 days, just a little, and it helps so much with the dead skin starting to slough off. If you have a cut where the skin is really thick on either side (which is why my skin on my feet splits), then drill right up to the slice, but be sure not to drill into the cut, and try to avoid getting the dust in the cut. This may be impossible, so immediately afterwards, soak your feet in some olive oil and epsoms salts in warm water.

Some people get freaked out about this, but for me, it's really helped. Just be careful.

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yeah i think you did, but i just think that it is so funny that we kinda turn into mechanics. have you ever just let your skin grow thick? that right up to the crack part made me laugh because i do that to with a razor blade. whenever i get a smooth spot i just rub it. it's so soft and then i step back into reality and start working on my other foot. i just got through reading a post from someone that actually has clear skin with just methotrexate, and urea moisturizer. yeah, clear skin. no biologics. described how the skin comes off like a glove? i had to read it twice, sounded just like what i am going through. i know that not all people will have the same result with any one drug, but i have to say that i was stunned. i was on methotrexate for 2 years and the appearance of my skin never changed. it slowed down, but i still looked like i was wearing gloves and cement shoes all of the time. maybe someone out there will actually go into remission that has plantar/palmar, we'll find out where they live and go to their house, draw their blood and have it tested and we can inoculate everybody else so that they won't have to go to home depot or sally's beauty supply looking for a cure, sandpaper, drill bits you name it!!! have a good day i know i will....

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I tried Humira, didn't help. Soraitane helps. I have weaned myself to 2 days on, one off 25 mgs. I also use clobetasol. After showering I put glycerin on my spots on my feet with a cotton ball. Wipe off after 15 min. I've given up beer. Since march I've eliminated red meat & dairy. I soak my feet at night in water with salt water fish tank salt. I lather up with oatmeal soap. Then I try to remove as much dead skin as I can by rubbing with a soft towel & clipping with a nail clipper. I ways wear white or light colored cotton socks. I sit with my feet in the sun for 20 min. when I can or sue my UVB lights. Not perfect, but managable.

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oh barbara323, you are far to gentle. it sounds like you are going to a spa (lol) i'm into blood and guts and torture. i'm on soriatane too, but i'm becoming symptomatic. my skin is loose now like it was in the beginning when this all started. it's okay for right now because it allows me to peel off the dead skin like a grape. plus i love the dramatic effect when my mother acts like she's going to blow chunks. that's a joke too,

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Michelle1995

Has the Soriatane helped the PPP? My ex-derms all want to waste visit time telling me how well it would work if I could take it!
My triglycerides are wayyyyy too high so I cannot take it.... Just wondered if it is helping your ppp...??

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well mes78613

i would love to say that i am having good results with it, but anytime, especially when i went to the dernatologist, she would rejoice and say "you look good, i think we are making progress" i would look at her and tell her than any pink or normal looking skin you see, i did that. then i would tell her about using razor blades and lubing up and ripping all of the skin off of my hands and all that i could off my feet. i had to tell her this repeatedly the whole time i was going to see her. she gave me taclonex, which did not help because the skin was way to thick for it to penetrate. i was just greatful to have the suicide-provoking itch under control. but right now here today, i don't think that it's helping. i feel as if i am in a slow roll into a flare up. that's when the skin is easy to remove as the skin cells are trying to push through at a rapid rate, similar to what was happening in the beginning when this all started. as a matter of fact i just got through with a marathon picking session. i doubted the drug in the beginning because it was used for people that have severe acne. and, i have been using zyrtec again. i didn't have to use it when i was on the methotrexate. both of these drugs are hard on the liver. i have tried to be patient, but my low tech approach has the most dramatic efffect. there's a person that post with the moniker hunterz. he was having the very same thing happen to him. when he mention that his skin would come off like a glove, i had to ask what worked for him. look him up if you want. he said that he is on methotrexate and uses a urea moisturiser and he's doing great. he inspired me to give the doctor merry go round another try. he's a good guy. have a good day.....

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