PPP and Strange Progess on Soriatane

[SuzanneT]

I can't believe that I just found this forum and I've been fighting PPP for 11 years now. It started with a few blisters on my hand that developed after a trip to the Caribbean. My GP thought it resulted from a scrape on a piece of coral when I was scuba diving. Several docs later, many, many tests and RX's later (I know you've all been thru the same drill), diagnosed by a wonderful derm who prescribed low dosage of Tetracycline combined with a compounded Triamcin/Methotrexate ointment to be occluded at night. Within a few days I was MUCH better, but eventually it took over again and covered most of the palm of my right hand, some days so painful I had to do EVERYTHING left handed. I went through a period of having it mostly under control for a long while, and then miraculously one day it disappeared! I forgot about it totally for a couple of years, and then voila! One day the same darned blisters appeared on my foot. By now I had moved cross country, my old derm had retired, but finally I found out what the RX was and found a dr. and a compounding pharmacy to give me this. Again, a period of a couple of years (can't quite remember now), where it would get worse (at times I thought it was going to totally eat away my heel!) and get better. When it got better, I would forget to take the meds, and then about a week later it would get worse. Again, one day it went away. Until............ two years ago it came back again, same heel, with a vengeance. Since I've tried many things over the years and nothing worked as well as the Tetracycline combined with a compounded Triamcin/Methotrexate ointment, I just had my GP prescribe. Finally a few weeks ago, after fighting this for 2 years (again), I gave in and saw a new Derm. She gave me a Rx for Soriatane and sent me for blood work first. I researched the Soriatane and it scared the daylights out of me! I called her and told her that I didn't want to take it, and she told me that she wouldn't prescribe it anyway, since my cholesterol and triglycerides were too high. So.... after getting the bloodwork under control, I stared the Soriatane 4 weeks ago. Within 10 days the skin on my heel started coming off in sheets! I haven't had one single blister. I'm trying to post a picture showing what bizarre things the skin is doing on the bottom of my foot! (If the pic doesn't work, I'll figure out a link). Anyway, I've spent the last several hours reading every post here I could find that related, and I'm hoping one of you who have been through this (Henri maybe?) can tell me if this is normal? I'm crossing my fingers that I'm one of the lucky ones to see the dramatic and total improvement that I've heard about. And to also ask you about the side effects........ started at 25mg/day for 3 weeks, dropped down to 25mg every other day, and tomorrow I will start 10mg. / day. I can deal with most of the side effects ... peeling, dry nose, sore skin, but my hands are so cold and clammy and my fingertips so sore that I can barely type! I hope you can tell me that this will get better - it's very hard to work!
<okay, I couldn't figure out how to insert the picture, what am I doing wrong?>

[bratsareus]

Hi, welcome to the boards. I'm sorry you're having a hard time with ppp. I have had ppp for 21 years. I have never taken Soriatane though, so I'm not sure whats normal while you're taking it. I do hope it works for you.

Heres a link to a discussion on it.
http://www.psoriasis.org/forum/showthread.php?t=15890&highlight=Soriatane+ppp

another
http://www.psoriasis.org/forum/showthread.php?t=15596&highlight=Soriatane+ppp

http://www.psoriasis.org/forum/showthread.php?t=13968&highlight=Soriatane+ppp

http://www.psoriasis.org/forum/showthread.php?t=12079&highlight=Soriatane+ppp

http://www.psoriasis.org/forum/showthread.php?t=11344&highlight=Soriatane+ppp

There is a search feature on the top right above this. Type in soriatane and ppp it will give you threads that pertain to it.
I also want to mention that some folks with ppp seem to respond very well to using the antibiotic, Keflex for a extended period of time. I have been very lucky that by changing my eating habits and adding some supplements has seem to truley made a difference. You can find some helpful ideas in the alts and complementary forum on here. Its really trial and error with this stuff. Good luck.
Patty

[RichJ]

hi suzannet,
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. but i wish i could

have a good weekend all

richard

[wildflowerAnn]

Thanks for the links, Patty. I went to the soriatane.com website this a.m. and was excited about the medications efficacy. Then I read these threads and I can see that as with the other medications, success isn't guaranteed or is sometimes only temporary. I still want to try soriatane. I'm past my childbearing years and I don't consider the potential side effects to be any worse than enbrel's potential side effects. At least blindness and muscular dystrophy are not listed as potential side effects with soriatane. What to do, what to do......hmmmmm.
Ann

[SuzanneT]

Thanks Patty! I checked out all the links and there were two threads that I hadn't seen yet. I wish that I had read Henri's suggestion about 'ramping up' before I started - now I'm finding that I need to 'ramp down'. Although I think it takes a few weeks for the side effects to really kick in.

Ann - do you have ppp on hands and feet also?

Can anyone tell me how to post a picture? Or maybe nobody wants to see a pic of my 'science experiment' that used to be my foot? :)

[wildflowerAnn]

LOL! Show us your foot, Suzanne! (I don't know how to post the pictures either.) I have generalized p, and e-dermic. Since October 17 2005, I've had two clear weeks in Nov. 2005 and 2 clear weeks this month. Today, I'm e-dermic again. Getting desperate, being on fire almost every week of my life. Trying to stay positive, but its getting tough. Have a dermatology appt on the 31st, and something has to change. I've been reading for hours trying to decide whether to take soriatane or enbrel. This is a very difficult decision. I'm going to do as Henri suggests and slowly increase the soriatane dosage if my derm will allow it.
Ann

[bratsareus]

Suzanne i'll try to help you out.
1. when you go to reply,scroll down to Additional Options and click on manage Attachments.
2.Then on the box that pops up click on browse.
3.A box will pop up that has places on your computer. Find where you have stored your picture(desk top,pictures,documents ect...). Click on the picture you want, and then click on the open button.
4.Then click upload, and after it uploads, click close this widow.
5. Then just click on submit reply.

Hope this helps.
Patty

[MikeK]

Suzanne,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that you're having a rough time with pppp.

Here's a link to one of my posts, where I gave some links and suggestions to another new member who was having issues with pppp: http://www.psoriasis.org/forum/showthread.php?p=213463&highlight=mg217#post213463. The rest of that thread (and the discussions that my links will take you too) should hopefully be helpful to you.

You asked:Can anyone tell me how to post a picture? Or maybe nobody wants to see a pic of my 'science experiment' that used to be my foot? :)Barbara W. explains how to post a picture in this thread:

http://www.psoriasis.org/forum/showthread.php?p=207632#post207632. (Her instructions apply for people who want to post pictures that they would like to have included in the Photo Gallery (which Barbara does a wonderful job by maintaining for us), but they'll also work for this thread. If you have any questions and/or problems, send Barbara an e-mail. She'll be more then happy to help you post the pics to this thread.)

I hope this helps.

Good luck. Keep us posted. Let us know if you have any other questions and please don't be a stranger.

Mike

[MikeK]

LOL! Show us your foot, Suzanne! (I don't know how to post the pictures either.) I have generalized p, and e-dermic. Since October 17 2005, I've had two clear weeks in Nov. 2005 and 2 clear weeks this month. Today, I'm e-dermic again. Getting desperate, being on fire almost every week of my life. Trying to stay positive, but its getting tough. Have a dermatology appt on the 31st, and something has to change. I've been reading for hours trying to decide whether to take soriatane or enbrel. This is a very difficult decision. I'm going to do as Henri suggests and slowly increase the soriatane dosage if my derm will allow it.
AnnAnn,

I'm so sorry to hear that you're e-dermic again! Do you still have PJ's, Rose's or Dave's contact information? Please get in touch with one of them a.s.a.p. If you don't have their contact information that please send them a way to get in touch with you. Dave's e-mail address can be found in this post: http://www.psoriasis.org/forum/showthread.php?p=226216#post226216. PJ's e-mail address can be found in this post: http://www.psoriasis.org/forum/showthread.php?p=226180#post226180. Rose's contact information can be found here: http://support.psoriasis.org/charlotte/. If you don't feel comfortable contacting them directly then please send me your contact information in a PM. (Do not post it on the Board.) I have all three of their cell phone numbers and I'll be very happy to relay them your information. All three of them have been e-dermic. Like you, Rose has had to deal with von Zumbusch flares.

Mike

[kerry2392]

Hi Suzanne,

I, too, am on Soriatane. I did too try the keflex (orally) and antibiotic shots (painful). These worked temporarily and very short-term, so my derm put me on Soriatane. I have p on my palms and feet. I started it March 6, and am still feeling the side effects--peeling skin and very chapped lips. Yes, as you put it, "whole sheets" of skin peel off. It is rather unnerving and I am going to ask my derm how much longer this will last. I go back April 6.

[wildflowerAnn]

Hi Mike,
I tried the link for Rose but it didn't work. Could be my computer??? Will pm for the contact #'s. Thanks.
Ann

[MikeK]

Hi Ann,

Sorry about that. It seems to work o.k. for me. Oh, the joys and frustrations of cyberspace!

I just e-mailed PJ, Rose and Dave.

I also sent you a PM.

Feel better!

Mike

[cakp12]

Hi Suzanne,
I also have PPP but now it is just on my hands- I have taken Soriataine, it worked for a while but I had to keep uping the dose to the point where the side effects got too bad. I tried many things but am now on Enbrel- Hope you find what works for you.

[SuzanneT]

Ann, I didn't know what e-dermic was, so I did a search on it. OMG, this is WAY serious!!!! Life threatening! It makes my little problem seem much more trivial. I guess everything is relative, isn't it? I hope you take care of yourself! Actually I wanted to post the pic, to show the success that I am having on Soriatane - it's pretty darned impressive! I'll figure out in a minute how to do the pic............. but where's the Gallery, Mike? I can't find a Gallery anywhere?
Sue

[MikeK]

Hi Sue,

You asked:but where's the Gallery, Mike? I can't find a Gallery anywhere?

Here's a link to it: http://www.psoriasis.org/forum/showthread.php?t=7909.

I hope this helps.

Mike

[bratsareus]

Ann, I didn't know what e-dermic was, so I did a search on it. OMG, this is WAY serious!!!! Life threatening! It makes my little problem seem much more trivial. I guess everything is relative, isn't it? I hope you take care of yourself! Actually I wanted to post the pic, to show the success that I am having on Soriatane - it's pretty darned impressive! I'll figure out in a minute how to do the pic............. but where's the Gallery, Mike? I can't find a Gallery anywhere?
Sue

Sue you can do it right on here. Infact since you started this thread, it would be great to post it on here.
Patty

[SuzanneT]

Okay, I think I figured it out and I'll try again. This pic was taken March 23, just a month after I started the Soriatane (which was Feb 24th). Somewhere I know I have a before picture, showing all of the blistering, but if you've read this far, and you have PPP, I'm sure you know what that looks like :(. I read somwhere that is takes between 28 and 50 days for the skin to completely recycle itself. It seems to have shed the outer, thicker layer first - just a few days after starting, and then brand new pink skin underneath, like a baby's bottom! Then, in the past three weeks a thinner layer has peeled again twice - but this is not like the constant flaking, peeling with P. It just comes off in sheets. And no blisters! Just bright red skin. And the line that you see keeps going farther on the bottom of my foot - slowly now, but at first it was like an inch each day.

[SuzanneT]

Yikes, my foot is larger than life, LOL! I wasn't expecting that, I thought I made it a teeny little picture.

[wildflowerAnn]

Wow Suzanne. Those blisters are gone! I can see where the skin above has healed. That is really good in just one month. (The large picture is good. We can see the details better.)

[RichJ]

hi Suzanne,
they look great. no blisters :D :D :D

have a good day all

richard

[grannyfranny]

Make sure you watch your cholesterol and BP while taking Soriatane. Don't let your doc forget!
At 6 months,,,,,,I got very severe back and muscle/joint pain. So severe that one morning, I could barely get out of bed,,,,DH had to help me get moving.

That is one of the side affects listed.

[jdeldrid]

I have pustular on my hands and feet. My derm in CA was not afraid of soriatane, and put me on 50mgs a day. My derms up here in WA seem to hate it and are constantly after me to reduce me dose. The problem is that if I go below 25mg 2/3 days, I start getting blisters again. I'm taking enbrel, which is working great for my arthritis, but seems to do jack for my skin. I'll be talking to my derm at my appointment next week about upping the enbrel to see if that helps at all.

[cakp12]

jdeldrid, What dose of Enbrel are you on now?

[MikeK]

I have pustular on my hands and feet. My derm in CA was not afraid of soriatane, and put me on 50mgs a day. My derms up here in WA seem to hate it and are constantly after me to reduce me dose. The problem is that if I go below 25mg 2/3 days, I start getting blisters again. I'm taking enbrel, which is working great for my arthritis, but seems to do jack for my skin. I'll be talking to my derm at my appointment next week about upping the enbrel to see if that helps at all.
Hi Jdeldrid,

I'm sorry to hear that you're having problems weaning off Soritane. Nancy (nla) has also posted that she's been unable to come off of Soritane. Like you, she has pustular on her hands and feet and PA. She's also on Enbrel. She reports that the Enbrel is doing wonders for her PA, but that her pustular comes back when she starts tapering off of the Soritane. Sadly, Nancy's mother passed away on Friday after a brief hospitalization. (Her husband has also been in the hospital for some unrelated medical problems.) So there's a pretty good chance that Nancy won't see your post. I'll try to find the posts where she discusses the problems that she experienced when she tried to come off of Soriatane. I'll post the links to those discussions when I find them.

I hope this helps.

Mike


Edit: Found them! Here's the links to some of the posts where Nancy discussed the problems that she experienced when she tried to come off of Soritane:

http://www.psoriasis.org/forum/showthread.php?p=157598&highlight=soriatane+enbrel#post157598;

http://www.psoriasis.org/forum/showthread.php?p=99491&highlight=Soriatane+Enbrel#post99491.

[MikeK]

Okay, I think I figured it out and I'll try again. This pic was taken March 23, just a month after I started the Soriatane (which was Feb 24th). Somewhere I know I have a before picture, showing all of the blistering, but if you've read this far, and you have PPP, I'm sure you know what that looks like :(. Oh, Suzanne! I'm so sorry. That looks so very, very painful! :(

I hope and pray that you find something that gives you some relief.

Mike

[SuzanneT]

Patty and Mike, thanks for all your help - I've been spending LOTS of time reading all these great posts, and I think I've learned far more here than I have from any docs! Now I know where to come with questions.

kerry2392 - it looks like we're going through this together! I started Soriatane Feb 24th - just a little before you did. What dosage are you on? Today the bottoms of my toes (the raised area where they curl up!) started to peel, very weird! Every day is a new day, I guess.

cakp12......... when you started taking Soriatane, did it start working right away? Or did you have to keep upping the dosage?

Grannyfranny........ yes, thanks, I'm having bloodwork done every three weeks. I'm also on Lipitor as I had to get the levels down before they would let me take the Soriatane. I also am seeing my derm every 3 wks. now. It was 2 wks at first. Can I ask you.......... was it lower back problems? Upper back? Did you have back problems before?

jdeldrid........... 50mg? Wow! I can't even imagine. 25 is too much for me. I haven't had any in three days. Couldn't stand the sticky, clammy hands, and besides I'm just getting over 2 weeks of the flu, and I just couldn't take it. I went yesterday to pick up my Rx for 10mg, and the pharmacy didn't have it, so today I took apart a 25mg capsule and downed half of it with some yogurt. Yum. I wonder how long it takes the body to adjust to a lower dosage? Even without any in my system for 3 days, I'm still seeing new peeling today....

Mike..... thanks! It actually looks REALLY REALLY good in that pic! I was very proud of it, ha ha! It's not that sore now - the real soreness is just before the blisters appear - yeowch!

Thanks everybody - what a great supportive group you are - I feel like I know you already (of course, it could be because YOU are the only ones who have ever seen my foot - I don't show it to ANYBODY ever :)

[grannyfranny]

Hi Suzanne,
It was lower back pain.
No, I have never had any back problems except that big joint at the end of my neck. I have osteoarthritis in that joint. All my joints were hurting, but my back was the worst. This pain came on over a period of about 6 weeks. I thought my osteo was getting worse,,,,,,I went to my rhuemy and he said that I did not have any arthritis in my back and there was nothing showing that would cause that kind of pain.
When I stopped Soriatane, all the pain went away. Now, I only hurt in the joints where I do have arthritis.

Just something to be aware of. My derm said I was the first patient that he had for this to happen to. I tend to have "unusual" side affects from p meds.

[hkowalczyk]

Suzanne,

One strange thing with Soriatane is that the side effects are dose dependent (maybe that's true with many drugs!?). I can't comment on what happens with your hands/feet while on Soriatane because when I started it my hands and feet were already coming up in sheets! So for a while they continued to do so. However, I can tell you that after a while some side effects would go away, and when I would change dose some new ones would come up and some other ones would go away.

My suggestion would be to try to get your derm to prescribe soriatane in 10 mg tablets, and then you can taylor your doseage to what you can stand. Give it a while though, before you decide to go up or down, it's not a quick acting drug. I had my derm prescribe 50 mg/day and then I just went up slowly by 10 mg increments. The slow ramping helps keep side effects down. One study showed that ramping up 10 -30 - 50 every 2 weeks cut side effects in half.

The way I decided to use Soriatane was with a long term perspective, by the time I went on it I had mentally prepared myself for being on it for the rest of my life if I had to. So I went started on 10 mg, then went up to 20, then 30, then 50. I only went up when I'd become comfortable that I could take the side effects, which meant I would change those every 2 to 4 weeks. I stayed on the 50 mg dose for a while until I was pretty much all clear and then tapered down. All told it took a little bit over a year.

Stay on top of your blood lipids, that's the biggest pain. All the other side effects were a walk in the park compared to where I started :D

One thing to try could be combining soriatane with UVB, it is a very effective combination and you can be on a lower doseage of both so you can lower your side effects.

Good luck,
Henri

[cakp12]

Suzanne,
It started working pretty much right away and then after a while it wasn't doing so well so we increased the dose. The side effects were worse with the higher dose and it just wasn't doing the trick anymore.

[kerry2392]

I'm on 25 mg everyday. I hope these side effects go away! I have very itchy skin (not the same kind of psoriasis itch, but dry skin itch), and I'm breaking out on my arm! Ugh! My scalp itches, I've got the dry and peeling lips, along with the peeling palms/fingertips and feet. Does anyone know if these side effects eventually go away or are they constant and if yes, when do they usually subside? If it keeps on going, I'm going to ask to taper down to 10 mg a day.

[hkowalczyk]

Well you probably know the answer to the question... it depends! Don't you hate that! Everyone reacts differently to it, but for the most part the side effects do seem to go away after a while. For me I had different side effects at different doses. Some went away, some didn't. The ones that stayed were dry lips, and elevated triglycerides. Just ask your doctor to prescribe you 30 mg/day and then taylor it according to your needs. I guess I was "lucky "that I started erythrodermic. None of the side effects looked very bad by comparison to what I was dealing with!

-Henri