Psoriasis Support's topics - tribe.net

16 years of suffering with Psoriasis until now

2008-04-27T04:02:07Z

Thanks for the info, as i am only new to forums i am always interested in what people are trying. Over the years i have tried almost everything including all types of lotions and creams, diets, serious potent medications including methotrexate however side effects outweighed the benifits and full blood counts and the effect on the liver and kidneys.
In the last 12 months i have purchased many so called remedies off the net and have spent 1000's of dollars trying to find something that would give me relief.
3 months ago a friend put me onto a web site who again claims a natural remedy, sceptical i gave it ago. I purchased the bare minimum as it was quite pricey with no money back guarantees.
Within 4 days the scalyness and itching started to disappear and within 2 weeks my skin is on the way to a full recovery.
Its been 3 months and i want to share my discovery with the world.
Please bare in mind I don’t know if it will work for everyone but after 16 years of trying almost everything, I definitely worth a shot.
I am not linked to this company as I am in Australia and this company I believe is in Hong Kong.
I am just excited and I know how much everyone is suffering with this disease.
Best regards.
N. Anderson
www.nobletreatment.com

posted in Psoriasis Support - 1 reply

Celebrate with me, I've found a trigger!

2008-04-27T04:00:07Z

Hi!
I think I might have found a major P trigger for me. Turns out I'm gluten intolerant. I'm not a full blown celiac and I had no symptoms but a friend pointed out that even the National Psoriasis Foundation seems to recognize that some people benefit from going gluten free.

I've been GF for two months and I'm seeing improvement. Not 'does this look less red to you' kind of improvement either, but the 'wow, there used to be a lesion there, didn't there?' kind. Spots seem to be disappearing from the center out.

Don't get me wrong, gluten free sucks in some ways. No wheat, barley, rye, oatmeal even because most of it is contaminated. No bread that tastes like bread. Found a good kind of rice pasta. But now that I'm seeing improvement, it's making me want to stick to it!

Woo hoo! *dances*

posted in Psoriasis Support - 0 replies

time for another update

2008-01-08T00:15:50Z

well, I've been on the Enbrel for almost 8 months now, down to one shot about every 10 days. 50mg/ml. so far no reappearance of plaques. Stopped the light treatments a couple months ago. Been feeling pretty good.

How's everyone else doing?

posted in Psoriasis Support - 1 reply

Enbrel

2007-08-18T07:44:58Z

Anybody else tried this?

I did 6 months and then quit.

I was getting sick easily and got nervous about taking an immunosuppresent.

Psoriasis improved to a limited degree, but nothing dramatic.

Any other stories?

posted in Psoriasis Support - 11 replies

Major progress

2007-06-27T16:55:00Z

Well, the combination of the Enbrel and UVB therapy is making incredible progress for me. No more plaque, anywhere. All I have now is some pink patchy skin where the plaques used to be. So far I'm 8 weeks into the Enbrel shots (50mg/ml 2x/week), and about 12 weeks into phototherapy. I'm down to twice a week now for the lightbox, and we've decided to keep the treatments now at 3.1 joules per session (about 9.5 minutes). I'll post some new pics soon, just have to get my wife to take some.

An interesting side note, my doctor mentioned to me a new psoriasis drug that's in phase 3 clinical trials, apparently it's so effective that one shot can last up to 6 months, and people seem to get around 90% clearance with it. He's going to try to get me in the phase 4 trials as soon as they are available.

posted in Psoriasis Support - 4 replies

reptiva

2007-06-13T19:33:16Z

I have start using perscription drug of reptiva for psoriasis. Has anybody else on this tribe use this drug?

posted in Psoriasis Support - 5 replies

Arthritis

2007-05-23T07:47:21Z

Anyone here have psoriatic arthritis? Dealing with it for about 10 years meself. Affects a bunch of joints, including four fingers - which has totally destroyed my guitar god potential!

posted in Psoriasis Support - 15 replies

Well, I guess it's time I posted again

2007-04-18T15:42:58Z

HI folks, sorry I haven't been around much. My real life has taken some odd turns, and I find myself in a bad way lately.

My psoriasis has progressed beyond plaque and has turned into erthyrodermic, quite literally overnight.

I woke up one morning about a month ago, in severe pain all over my body, and the silvery scales turned brownish, and started peeling off like lizard skin. I have been in constant pain for a month now, 24 hours a day, like my skin is on fire. I haven't had a good night sleep since, because it hurts so much to even lay down on the bed. So, I finally broke down after 6 years (I have no insurance mind you) and contacted a dermatologist yesterday. Today I went to see him.

I am currently on the following:
Clobetasol solution - for my scalp
Clobex spray - for most of my body
Cloderm cream - for my face and groin (yes, it ended up on the penis too :`( )
Atavax - a sedating antihistamine to make me sleep and stop the itch at night

And some good news, it seems I qualified to get Enbrel for free for a year direct from Amgen. So, as soon as the paperwork goes through, I'll be on that in about a month from now.

Wish me luck.

posted in Psoriasis Support - 3 replies

Psoriasis on YouTube- check it out and get involved

2007-03-30T02:58:54Z

http://www.youtube.com/watch?v=jxyBi61Wlbk

If you are interested in learning more about what you can do to help support the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007, please e-mail advocacy@psoriasis.org.

posted in Psoriasis Support - 0 replies

My personal blog and progress

2007-03-26T17:04:45Z

Hi again folks. I've started a blog chronicling my progress with pictures taken weekly. you can find it at http://www.spiritfiresrealm.com

also, I got word today that my Enbrel has been approved for one year through the ENcourage foundation. I should have the first shipment in about a week. if this works, it'll mean the first time of real relief in 9 years.

posted in Psoriasis Support - 1 reply

Lyprinol

2007-03-24T05:45:16Z

I take this supplement for its general anti inflammatory qualities. It is a leuketriene inhibitor.

Anyways, the websites I researched indicated that there is possibly some success with using the product and psoriasis.

Anyone hear about this or have any experience with it?

I'm a couple of months out yet for expecting any changes.

Mike S.

posted in Psoriasis Support - 1 reply

First-ever psoriasis legislation introduced in Congress

2007-03-17T17:19:13Z

http://www.psoriasis.org/news/press/2007/20070216_pparcca.php
-------------------------------------

National Psoriasis Foundation to ask for support of bill on Capitol Hill Day

PORTLAND, Ore. (Feb. 16, 2007)—U.S. Reps. David Wu, D-Ore.-1st, and Jim Gerlach, R-Pa.-6th, have introduced the first-ever comprehensive psoriasis legislation in the U.S. House of Representatives—just as the National Psoriasis Foundation prepares to head to Washington, D.C., for its fourth-annual Capitol Hill Day, Feb. 25-26.

The Psoriasis and Psoriatic Arthritis Research, Care and Cure Act (PPARCCA) of 2007, is also supported by Reps. Debbie Wasserman Schultz, D-Fla.-20th, and Stephen Lynch, D-Ma.-9th, as they joined with Reps. Wu and Gerlach in introducing the measure. The National Psoriasis Foundation appreciates the leadership and commitment of all four of these representatives in supporting this unprecedented legislation.

The legislation was spearheaded by the National Psoriasis Foundation, which has been advocating in the nation's capital for greater federal investment in psoriasis, on behalf of as many as 7.5 million Americans with the disease.

"I believe it's important to recognize the pain caused by psoriasis and psoriatic arthritis, and we have put forward this legislation to make treatments more accessible and find a cure for those living with these diseases," said Rep. Wu, lead author of the bill and congressman in Portland, Ore., where the Psoriasis Foundation is headquartered. "It is my hope that this bill will serve the needs of those afflicted and the community that supports them."

The legislation specifically calls on the federal government to:

* Expand psoriasis research conducted by the National Institutes of Health;
* Strengthen patient data collection on psoriasis and psoriatic arthritis by establishing a national psoriasis and psoriatic arthritis patient registry through the Centers for Disease Control;
* Convene a federal summit on psoriasis and psoriatic arthritis to discuss issues and opportunities in psoriasis research;
* Direct the Institute of Medicine to create a report to evaluate and make recommendations on issues around access to care for psoriasis and psoriatic arthritis patients.

More than 100 National Psoriasis Foundation volunteers from 29 states will visit their elected officials in Washington, D.C., on Feb. 26, and ask them to support the PPARCCA legislation. Advocates also will call upon Congress to increase funding for psoriasis research for the coming federal fiscal year.

"This is the first time psoriasis will be recognized through legislation," said Sheila Rittenberg, director of advocacy for the Psoriasis Foundation. "Psoriasis research is lagging, and treatment options are improving but still often do not meet patients' needs. This bill lays out a plan which will pave the way to a cure."

Recent studies have shown that psoriasis is a serious disease affecting the immune system and is associated with other chronic conditions such as heart disease and diabetes.

"We are honored that Rep. Wu has introduced this essential legislation and is leading the charge," said Rittenberg.

The National Psoriasis Foundation invites people to join the psoriasis community in the movement to boost research funding toward a cure. The Foundation will be promoting ways in which the general public can help build support for this historic bill at www.psoriasis.org.
About Psoriasis
Psoriasis is a noncontagious, genetic disease that results when faulty signals in the immune system prompt skin cells to regenerate too quickly, causing red, scaly lesions that can crack and bleed. It often affects the elbows, knees, scalp and torso but can appear anywhere on the body. As many as 7.5 million Americans have psoriasis, according to the National Institutes of Health. Ten percent to 30 percent of people with psoriasis also develop psoriatic arthritis, an inflammatory disease which causes pain, stiffness and swelling in and around the joints. Psoriasis can affect anyone at any age, including children. There is no cure yet for this lifelong disease.
About the National Psoriasis Foundation
The National Psoriasis Foundation is the leading patient-driven, nonprofit organization dedicated to improving the quality of life millions of Americans with psoriasis and/or psoriatic arthritis, and their families. The Psoriasis Foundation focuses on education, advocacy and research toward better treatments and a cure. For more information, please call the National Psoriasis Foundation, headquartered in Portland, Ore., at 800.723.9166, or visit www.psoriasis.org.

Media inquiries:
Sheila Rittenberg
Director of Advocacy
National Psoriasis Foundation
503.546.8365
Cell: 503.381.5950
srittenberg@psoriasis.org

posted in Psoriasis Support - 2 replies

progress

2007-03-06T18:47:14Z

well, it's been 3 days since I started the Clobex and stuff. so far, I've seen a big decrease in the redness

today I had my first light treatment, only about 3 minutes. I smell like a pencil eraser now. Fortunately I didn't burn, but I do feel rather toasty at the moment.

posted in Psoriasis Support - 3 replies

:(

2006-11-29T00:37:16Z

I just joined this tribe because I have psoriasis. I was diagnosed back in 1999 because I had a mild case on my scalp and nothing on my body. It went away two years later and over the past few months it came back and now I'm getting in parts of my body. Its so embarassing and I just dont know what to do at this point. I guess I need support more than anything.

I just wanted to say "hi".

posted in Psoriasis Support - 18 replies

Acupuncture and Psorasis

2006-11-29T00:22:48Z

Hello All.

Has anyone every heard of acupunture helping to cure psorasis. I have acupuncture benefits through my company and I thought if it works why not try it. But I want to research and talk to people to see if it works

posted in Psoriasis Support - 1 reply

Greetings from your moderator

2006-10-13T17:31:26Z

Well, ok, I've been neglecting all of tribe.net lately for the past several months. I have been trying to take care of stuff out there in that place we call the "real world" (scary I know), and it's made me forget about a lot of stuff.

My psoriasis is about the same as ever, irritating to say the least. At least it's no worse than it usually is though.

I'll try to get online more often.

posted in Psoriasis Support - 5 replies

Gluten intolerance?

2006-09-20T05:53:25Z

Ever since I cut gluten out of my diet back in November, I havent had any new outbreaks and my skin has cleared up. Does anyone know of a gluten link to psoriasis?

posted in Psoriasis Support - 6 replies

psoriasis and me

2006-07-07T13:51:50Z

Most of us knows what are the ways to manage Psoriasis and share our experiences, these rich information had help many of us to overcome the stress and gain support in one way or another. Many of us lived on another day in hope of modern science finding another means of managing the disease better.

I had recently found a self therapy instrument , that uses the concept of magnetic field energy and acupuncture treatment. "Itchiness goes away" the scaling reduced to almost nil, the skin does not look "angry red" anymore within two weeks.
I need only to spare a few mins per problem areas per day (while you are watching TV or before bedtime) and that's it,I am totally free from having to scratch the irritable spots until its turn bloodly. My sleeping resume to "having a good night sleep" waking up in good spirit. The skin will turn to normal in two weeks when i stop the therapy.

See pictures in the following blog:
http//:mybuz.livejournal.com/
http//:what-psoriasis.blogspot.com/

posted in Psoriasis Support - 0 replies

Suffering from The Itch?

2006-04-02T12:27:32Z

Hi, I just created a tribe called "The Itch." It's a place for people with mind-boggling itchiness to share information, resources, and moral support. Eczema, hives, psoriasis and all other tortures of the skin.

Won't you join us?

Thanks,

Ladi

posted in Psoriasis Support - 0 replies

Panacea for Psoriasis!?!

2006-03-16T03:16:20Z

Dose anyone know the best thing to use to clean up Psoriasis? It seems like everyone is different but the only two things that are working for me are, shea butter and a class one steroid from the doctor. Two problems, shea butter is fricking expensive after awhile and steroids, do I have to say more? So what works for you guys?

posted in Psoriasis Support - 4 replies

Tattoos on psoriasis dots?

2006-03-10T22:30:11Z

I am looking at getting a tattoo on my arm. I do not have a break out of psoriasis, but little dots of it. Do you think it is safe to get one there? I don't get break outs if I get cuts or bites.

posted in Psoriasis Support - 1 reply

humidity factor

2006-03-08T03:34:27Z

i just went to the coast for a week and my skin was pretty relaxed. i live in a very dry mountain town. do ya all notice any difference with humidity? do you live in dry areas?
just curious
j

posted in Psoriasis Support - 8 replies

emotional scars

2005-12-21T07:44:48Z

I've talked to a few people (therapist and a traditional chinese doc) who say p can be the physical manifistation of burried, deep emotional pain.

In the course of these conversations I meantioned the most likely cause for any emotional scarring, that I was sexualy abused as a child (and hadn't really delt with it much). They both seemed to think that could be a very likely cause, but I don't belive they really knew what they were talking about as far as p goes.

Also, I know a few of you have talked about being very angery. My anger is deep below the surface, but it is very intense, and it scares me when I get in touch with it. Maybe something to that as well.

posted in Psoriasis Support - 16 replies

Salicylic Acid

2005-12-14T17:14:04Z

Has anyone tried products with salicylic acid in it (such as, a facial wash) to reduce outbreaks? Or, at least the severity of them?
I want to start shaving again and was looking at a product the contains the acid. Seems like it makes sense.
Thoughts anyone?
Scott

posted in Psoriasis Support - 20 replies

Nail problems...

2005-12-02T03:32:28Z

Anyone have any suggestions or remedies? My finger nails are in some pretty bad shape and only getting worse. Discolored, splitting, and wouldn't be suprised if I lost a couple of them very soon judging by the condition they are in...

posted in Psoriasis Support - 4 replies

the stomach connection...

2005-10-28T21:33:52Z

hi
good to have some support with this isolating condition!
my skin has just resently started to go kinda crazy and i'm feeling kinda sacred.
i have 2 questions for ya all.
1. do any of you have digestive problems? what kind?

2. have any of you tried the Dr. Bernard Jenson Clense?- he claims to cure psoriasis with his extreme clense.
any info would feel good.
om
jenna

posted in Psoriasis Support - 7 replies

relieves flakes on the skin temporarliy

2005-10-28T17:56:53Z

what i do every other day before bed is cover the flaky area with duct tape, (in the morning the area is really hydrated), then i take the tape off slowly, cuz it can hurt sometimes fast.
then I rub the loose scales off with my finger tips, firmly in a back and forth motion, and watch the go down the shower drain. You will be actually rubbing the excess skin right off. This helps with the flakes, but not the redness, but it hydrates the skin enough until the next time you do it, so you won't have those sore dried out cracks. Next i follow up with cortizone cream 10 (the kind with the 10 extra moisturizers in it) it seems to lighten the appearance of the redness a little and helps with dryness and itching.
Not a cure but it helps with some of the milder cases, it makes them a little more bearable.

posted in Psoriasis Support - 9 replies

Psorasis..Anybody had puva?

2005-09-30T19:21:45Z

Today i have been to the hospital with regard to my psorasis,once again i came away feeling like a leper.The doctor agreed that upto now none of the treatments had ad any effect,so his final offer is puva,i think i have to have a bath and then light therapy,as anyone had this and can enlighten me on their success or familiar?

posted in Psoriasis Support - 3 replies

tattoos and outbreaks

2005-09-06T16:36:56Z

anyone had a problem with this?

posted in Psoriasis Support - 5 replies

Soriatane & NBUVB

2005-08-23T22:06:36Z

My old doctor prescribed me soriatane about a month ago and it is pretty awesome. The scalies mostly dried up and fell off after a couple of weeks. It was still red underneath but not raised or shiny at all.

Soriatane has drawbacks: insanely expensive, like $1000/month if not covered by insurance AND it is a seriously fucked-up teratogen, i.e. if you're female don't even think about kids for years and years. And if you're female and have ONE beer, basically forget about EVER having kids.

And my lips cracked and my hands were peeling. I cut my hand pretty badly and took two weeks off from soriatane so it could heal unimpeded. So my progress slowed, but I'm back on it now and that brings me to the second half of my rant.

I just joined Kaiser in Oakland and they are very cool. The Dermatology Dept just got a shiny new Narrow-Band Ultraviolet B science-fiction-looking chamber and I'm going three times a week with no co-pay! I always responded well to sunlight so I am optimistic as hell even though I've only had two treatments so far (42 seconds each).

Will report on any progress as it happens.

posted in Psoriasis Support - 9 replies

crazy psoriasis habits?

2005-08-19T06:03:11Z

Xander mentioned the jar of vaseline next to the computer and it got me thinking about crazy things I do...

I unconsciously mess with my scalp. I used to pick but have gotten better at not hurting myself, now I just gently scratch. The only problem is that this brings a storm of flakes if my scalp hasn't been properly taken care of, so you can imagine what it looks like when I stand up. It's a great incentive to get me to do another oil treatment. :) I try pretty hard not to do it, but often I do it without really being aware. I've contemplated getting one of those cordless vacuums and keeping it by the computer, maybe it would help hide the evidence. :D

So, what's your perfectly reasonable habit that others might find a little strange?

posted in Psoriasis Support - 9 replies

Hey Spiritfire

2005-08-08T09:27:23Z

...did you delete all the threads for the last month? I'm not seeing anything posted here since 6/15.

posted in Psoriasis Support - 5 replies

Tender Head

2005-06-16T04:24:43Z

Guys I need advice. Last night I noticed that my scalp was unusually tender. I mean, tender like you'd get if you had your hair up in a weird updo all night. (Do guys get this, I really don't know.) And it didn't go away after a night sleep. Sometimes it does, sometimes it doesn't. I've washed with my regular shampoo, been nice to my hair, but it's not really getting better.

Can anyone think of any (preferably non-prescription) ways of dealing with this? I feel like I can't even move my head too much.

Thanks!

~s

posted in Psoriasis Support - 9 replies

What's your experience with other people noticing your Psoriasis?

2005-06-16T01:22:56Z

I am so fricking tired of people staring or saying "Dude, what happened to your (hands, elbows, forehead, whatever happens to be flaring at the time).

I would NEVER call attention to something like that in ANYbody, in that way, unless I knew them and could ask them knowing it would be cool and comfortable to do so.

posted in Psoriasis Support - 16 replies

Long hair Journal

2005-05-27T22:11:43Z

I know, I know, always starting new threads.

I started a long hair journal at this long hair site, and linked this tribe so I thought I'd link back. Here's the URL:

http://forums.longhaircommunity.com/showthread.php?t=23293

Some psoriasis experimenting going on, send me a message with any questions.

~serena

posted in Psoriasis Support - 0 replies

Hey, all, haven't been here in months.

2005-05-25T02:57:26Z

Thought I'd drop back in...how is everyone?

I'm doing alright, but have been having a really bad flareup over the past month or so. A friend of mine knows a Chinese doctor who he claims "cured" him of psoriasis about 6 years ago, so I'm going to visit him when he's back in the States. What the hell, right? Modern medicine can't do much for us, so might as well try some other options.

Do you any of you have any problems dating, by the way? I never really have, but it's ALWAYS a concern for me, and I try to break it gently to the person before things get passionate. It has curbed my desire to be more free-spirited, if you know what I mean. And, I still feel like, "Gads, she must think this is disgusting." It's the only part of me that I don't feel comfortable and confident with. Hmph.

posted in Psoriasis Support - 7 replies

offspring

2005-05-21T02:54:44Z

This is a really sensitive subject I know, but I'm really curious. Does any one here have biological kids or plan to have them? Are you worried about the possibility of hereditary psoriasis? Think I'd like to have kids some time myself, but am kind of worried.

posted in Psoriasis Support - 10 replies

Salt and Jelly treatment - before bed soothing remedy

2005-05-05T13:28:39Z

Happy thursday all~

I've been meaning to get back here and post about a soothing home-remedy for bedtime I do about once a week.

Take a bath adding quite a bit (3/4 - 1 cup) epsom salts to the water (hot/warm/lukewarm doesn't seem to matter to my skin). Soak about .5 hour or so. If you have outbreak area which aren't submerged you can repeatedly apply a wash cloth soaked in the bath water to those areas. Use a gentle brush while you are in the tub - if you don't have a brush you can use a washcloth but be gentle!

Get out, gently dry off, put a thin-mnedium layer of petroleum jelly on the outbreak areas - dress in light un-dyed cotton clothes.

This is not only good for the skin, but for the flesh, muscles and all parts of you :)

I generally use this remedy on a weekend evening. Closest I'll get to the dead sea treatment!

Have a wonderful evening!

Cc

posted in Psoriasis Support - 1 reply

traveling advice?

2005-05-04T21:59:48Z

Hi guys. Who else should I turn but to this crown when I have a question!

Here's the thing. I'm going to spend a month in Europe with a documentary film crew this summer and I'm really nervous about how my skin's going to react. I can't guarantee where I'll be or whether I'll have a bathroom available for my usual routine. I'll be able to carry my stuff with me but not too much of it. My plan was to stick with my regular routine as much as I can and know that my skin will get worse, just from the stress of the trip. But, I"m open to any suggestions you fine people might have for me.

So, any advice?

~s

posted in Psoriasis Support - 3 replies

spring!

2005-05-04T21:57:58Z

So, is everyone's skin a little better now that the spring has sprung? I myself never noticed the change at the time, but it is there. I've been trying to get a little more sun in hopes of everything improving. :)

posted in Psoriasis Support - 7 replies

Tonsils out

2005-04-24T21:46:04Z

I had three bouts of strep this year in four months! it triggered my guttate psoriasis and I just got my tonsils out three days ago. I'll keep you updated on if it helps.

Anyone else have their tonsils removed and see an improvement? I hear it may or may not help psoriasis.

posted in Psoriasis Support - 1 reply

new and itchy

2005-04-23T18:19:33Z

Hi People,

CC here. I've had p for umm. . . 30 year (what the?!?!). Anyway, I am new here and thought I'd make my introduction ~ I'll be back :)

posted in Psoriasis Support - 4 replies

arthritis recommendation?

2005-04-11T20:15:13Z

What do you guys do when your arthritis flares up? I find that after the flu and my foot injury and everything, my shoulder has been inflamed. It's getting to me a little bit, the constant pain. I just started taking fish oil regularly again (that's helped before) and I take my vitamins, but I don't know what to do beyond that. What do you guys recommend?

~s

posted in Psoriasis Support - 2 replies

Broke Down...

2005-04-08T21:53:06Z

And went to the derm.

I got Clobotesol cream .05% for my hands, elbows and legs.

I got Luxiq for my scalp.

I got another thing for my face eyes and ears that had to be ordered.

I remember someone saying they had great success with Luxiq.

Please give me an idea of how long it took for you to show improvement and share any other anecdotes about it.

That is open to all. I liek to know what to expect.

X

posted in Psoriasis Support - 7 replies

forbidden tattoo

2005-04-08T21:36:54Z

I got a new tattoo on Friday! As usual I had to sign a form swearing I didn't have a bunch of things, but I kinda skipped over the psoriasis part... is that bad?

Lookin' good so far, wish me luck!

posted in Psoriasis Support - 5 replies

it happened again (rant-mode)

2005-04-08T14:42:55Z

I hurt my foot again. (I had a torn tendon in this food not even three months ago). I went hiking with a friend today, good new shoes but pretty new. Not even real hiking, since the MKT is this flat surface... hard packed. Went about... 4 miles. My foot was kind of achey when I got back in the car, but when I got home, I couldn't put my weight on it at all. Adults aren't supposed to crawl all around their houses! And it's my right foot and my husband's out of town. Driving's going to be a bitch.

In any case, thanks for letting me vent. I'm going to my chiropractor tomorrow. I hope she can do some chiropractor magic cause conventional docs only prescribe these 800mg horse ibuprophen pills that I refused to take.

This will probably push my flareup into full force. And I'm having arthritis symptoms in my left shoulder (how's that for symmetry). Waaaah! I think tomorrow may be one of those three bath days. The good thing is - I went to the library today and got three (count 'em! three!) books to read.

I hope all you guys are having a better couple days than me.

~s

posted in Psoriasis Support - 1 reply

flare up coming

2005-04-06T21:54:10Z

I had the flu recently and I got back into hiking and I just know that any change usually affects me in a negative way in short term. I plan to be extra-nice to my skin and take some vitamins and fish oil. Also, I'm going to try and drink enough water, and get a massage if I get a chance.

What do you guys do when you know that a flareup is coming?

posted in Psoriasis Support - 6 replies

introductions etc.

2005-04-05T16:36:34Z

Hi all, just joined the tribe and thought I'd introduce myself. I'm a veteran psoriatic, been oh (counts up) 14 years now. I'm a 'moderate' case, and for about a year now I've been refusing to see my derm. <hee hee> I'm tired of the never ending 'use steroids - run out - flare up - get new prescription' cycle. I also suspect that this might have contributed to other health issues (or the other way around, hm). So, I'm in the gentle remedy mode, I don't use tar or salalicylic acid preparations any more (after being dependent on them for most of my life), I try to live a healthier life, spend a little more time in the sun and in the bathtub with my soft brush. Sure, I have bad days (just had the flu, ugh flared up badly) but I also have good days. All in all, doing pretty good.

I'm always open to 'exchange of ideas' type of stuff, and I look forward to reading the archives.

~s

posted in Psoriasis Support - 12 replies

Coconut Creme?

2005-04-05T14:36:16Z

My scalp has gone crazy lately so, after I showered, I just put on a bunch of coconut creme (the Miss Helena's kind).

Any body know of a coconut creme/psoriasis connection as far as treating?

or am i just being stupid (as usual)

;-)

posted in Psoriasis Support - 2 replies

serena's routine (sloppy rhyme, no?)

2005-04-05T13:49:23Z

Ok, I've been kind of questioned on my routine, so I thought I'd share it in (semi) detail here and see if that spurs a whole new thread. :p

First thing I should tell you is that over the past three years or so, I've become a complete and total health-nut. I don't even take tylenol anymore, even when I have fevers (they usually get better on their own). It would take a serious infection to have me take anti-biotics (every time I remember having to take them, I had a bad flare up). Pain-relievers are out, as well as any sort of hormonal-affecting thing. I take good care of myself, eat a varied diet. I eat on the raw side, but I do have meat (fish most often), eggs and dairy. I try to get those organic or free range when I can. I dabble in the energy healing arts (jin shin jyutsu in particular) and have been able to help myself on several occasions. I see a chiropractor about once every 5 weeks (I had two car accidents with severe whip lash which left my neck and upper back very sensitive, I'm hoping that once I retrain my muscles, the chiropractor visits won't be necessary). I take my vitamins daily, and fish oil as often as I can remember (only pharmaceutical grade or micro-distilled). I don't drink, smoke and have coffee only occasionally. I do drink a cup of tea daily (usually black, but that varies). I try to spend some time outside every day, even if it is cloudy. I feel that helps me feel better, even if it is indirectly. I can't think of having left anything out, but if I have, ask!

About once a week I spend some time soaking in a epson salt or baking soda and table salt bath. While I'm in the bath I remove as much of the dead peelling skin off my spots. Once they get soft it's usually pretty easy. And since I do it regularly, they never get a chance to get really thick. My spots are all about the dollar coin size (a few the size of three dollar coins, arranged in a triangle), arranged around my waist, front, back and sides. A few coming down my legs. I also rub my scalp (didn't I tell you I lay down in the bath?) and that one helps loosen any stuff that comes out while shampooing. Once I drain the bath, I just regular shower.

I only use castille (olive oil) soaps (I just got some at the local middle eastern market) and the shampoos I use are the 'health food store' kind: Burt's Bees Feelin' Flaky and Aubrey Organics Calaguala Fern. Others make it into my roation as I find them, as well as some homemade concoctions (Did you know you can wash your head with herbs? I only learned that a little while ago.) My criteria for a shampoo include no sulfates, no petro-chemicals and no animal by-products and some sort of a treatment promise (usually herbal extracts or essential oils). I like the shampoos that include willow bark extract because that one has acids similar to salicylic which help keep the head clear but never in very strong doses. There are several other herbs that fall into that category (horsetail comes to mind) but I don't know them all. I don't use conditioner (and I have long hair) but instead apply a hair oil to my damp hair and braid. I also put some to my scalp, to places that feel like they need it. The hair oils that I've used include coconut (watch out for acne), walnut (might go rancid), jojoba (a little on the light side), tea or camellia oil (just ordered some of this, it sounds very good), olive oil, etc. I often add some sort of essential oil, I enjoy the good smells. I have also been fortunate to have some indian hair oil given to me at one point, smells really good! I tend to only use a wide tooth comb and I'm really gentle with my hair since my scalp is tender. I'm positive this is because of the psoriasis and I look forward to a day when it goes away.

I moisturize all the new pink skin with something soothing (shea butter, golden shea, olive oil with some essential oils, any number of quality lotions or creams, aloe vera gel, any sort of salve or ointment whose ingredients seems good - BB's Hand Salve comes to mind). Since I only wash what needs to be washed, I don't need to moisturize (like I used to) all over. I only really treat what needs to be and my skin's been happy with it.

And that's about it. Honestly though, this routine developed slowly over the past year. And I'm still changing the way I do things. I had to start switching shampoo and moisturizers because it would seem that my skin would start to react badly to it after some time. I had to find what things work for me and I'm still looking. I have this dream of a one step body care routine, but I don't think that's going to happen anytime soon. Maybe though....

Have a wonderful evening,

~s

posted in Psoriasis Support - 2 replies

Leaky Gut Syndrome

2005-04-04T16:46:28Z

Many alternative medicine sites list this as a huge cause of psoriaisis.

Anybody else looked into this?

posted in Psoriasis Support - 7 replies

CRAP!

2005-03-30T02:36:06Z

Soooo, I had strep throat on Jan 1 and didin't take care of it for like a week because I kept thinking it would get better (I didn't know it was strep) then two weeks later I had the worst case of guttate psoriasis EVER. It covered most of me.

After narrow band light therapy, dovonex, claebatesol (sp?) and time...it is almost gone...except my legs, but it doesn't itch. I still have white splotches and my skin is uneven tones, but at least it's not scaly or itchy anymore.

However.....

I woke up this morning with flu like aches and chills, and a sore throat....before I had time to debate with myself I went to my urgent care clinic and demanded a throat culture. They didn't feel my symptoms were strep ...but alas, my culture came back positive. I am on anitbiotics again.

QUESTION: is it guaranteed that psoriasis will attacck me again? or is it possible to "catch" the strep early, so that the psoriasis won't form. I'm PETRIFIED of going through what I went through a few months ago...

posted in Psoriasis Support - 10 replies

alcohol and smoking

2005-03-13T17:42:59Z

OKAY - I still got the guttate...it's going away - then coming back - then going away....but I've noticed that it comes back after I've had a night of drinking and smoking (I only smoke when I drink).

I went cold turkey for 6 weeks of no drinking or smoking and it was getting better pretty fast, then BAM! spring fever and I'm out partying again.....and now it's back and itchy.

Does anyone notice this? (about drinking/smoking)

posted in Psoriasis Support - 2 replies

Guttate anyone?

2005-03-11T19:28:38Z

Wow - my outbreak of guttate psoriasis is fuckin' with my head big time. It's all over me....I hear that this type is self-limiting and 70% of the time goes away by itself. (I had it when I was 16 and it did indeed go away, but it took a few months).

Anyone else get this? I hear it only affects 10% of all psoriasis cases.

(scratch)

Where's my oatmeal bath?

Oh - I'm taking slippery elm. I read on psoriasis.org that it can help considerably. I'll let you know if it does.

:(

posted in Psoriasis Support - 13 replies

Sigh.. More Alternative Therapies

2005-03-04T22:44:04Z

I've been researching.

There is tons of crud on curing the crud on us holistically.

There are a few that make sense.

I have made a little pact with myself to try everything I find reasonable in alternative meds before going back to my dermatologist.

Has anybody else looked into this realm and maybe we could swap notes if you have?

posted in Psoriasis Support - 4 replies

hypnotherapy - stunning success

2005-03-03T21:46:50Z

Has anyone explored this? Can anyone recommend a hypnotherapist? Check this link, the pics are AMAZING.

http://www.hypnos.co.uk/hypnomag/howard.htm

posted in Psoriasis Support - 11 replies

Questionaire.

2005-02-17T05:58:37Z

How long have you had psoriasis?

Did its appearance correspond with a particular trauma?

Do you have a tendency to be overweight?

Do you have digestive issues? (IBS, Acid reflux, Excessive flatulence after a particular food, anything...)

Do particular foods and/or habits aggravate your skin?

Where do you have the darn stuff?

Why have you all been so damn quiet?

X

posted in Psoriasis Support - 9 replies

First off my heart goes out to the folks suffering from Psoriasis

2005-02-12T23:49:54Z

If you've tried everything and you're as frustrated as my friend was then you might just be open to trying a very simple approach to solving your problem - simply take a bath with this incredible product and see what it does for you - check it out at
http://www.revealed.themastersmiracle.com

E-mail me if you have more questions about getting these products delivered to your home, at the lowest possible price or even free!
JaysVentures@yahoo.com

posted in Psoriasis Support - 3 replies

Kefir

2005-02-02T18:31:24Z

Drinking kefir is supposed to be good for psoriasis.

Some people suggest putting the whey directly on the affected areas.

google kefir AND psoriasis for more info.

I've been making the stuff for almost a month now and have just started drinking it regularly a week ago.

I'm seeing a little improvement.

We'll see.

Either this crust goes, or I do!!

(I guess the problem would be solved either way.)

;-)

posted in Psoriasis Support - 2 replies

Never ending pimple

2005-01-12T04:18:04Z

Perhaps just a rant, but what starts as a pimple turns into this big skin care nightmare! I lotion daily, but nothing is working. Help, I've had it for 3 months!

posted in Psoriasis Support - 4 replies

Blood Type?

2004-12-24T20:22:18Z

Whats your blood type, psoriasis sufferers?

(Just curious)

posted in Psoriasis Support - 10 replies

IMPORTANT!!! GOOD NEWS!!!

2004-12-16T07:24:50Z

http://story.news.yahoo.com/news?tmpl=story&ncid=751&e=1&u=/nm/20041212/hl_nm/health_psoriasis_dc

Three cheers for the scientists....

And three more for the scaly mice!!!

;-)

posted in Psoriasis Support - 2 replies

Cab driver

2004-11-29T16:50:32Z

My helpful cab driver, who had just graduated with a degree in Holistic Nutrition sent me this:

PSORIASIS
Psoriasis is a chronic skin rash characterized by scaling, patchy, silvery-looking skin. It can affect just knees, elbows, or scalp or can spread over most of the body. It often occurs at the site of a previous injury. Psoriasis often runs in families and usually develops gradually. It’s believed that the thick scaling of psoriasis is due to overproduction of new skin and rapid rate of skin breakdown. Psoriasis flares up due to stress, severe sunburn, irritation, skin creams, antimalarial therapy, or from withdrawal from cortisone, or it can be brought on by other triggers. Then it goes into remission. Arachadonic acid and leukotrienes are elevated in the urine of people with active psoriasis, which indicates that omega-3 fatty acid may be benefit. Psoriasis affects about 1 percent of the American population as a whole, but 2 to 4 percent of Caucasians.

Psoriasis can also occur with joint inflammation as psoriatic arthritis and is found in 5 to 7 percent of people with psoriasis. It isn’t clear whether psoriasis and psoriatic arthritis are the same disease or two almost identical diseases.

Michael Murray, N.D., and Joe Pizzorno, N.D., have documented a number of factors that influence the progression of psoriasis, including incomplete digestion of protein, bowel toxemia, food sensitivities, poor liver function, reaction to alcoholic beverages, and eating high amounts of animal fats. Let’s look at each of these factors.

FACTOR # 1. INCOMPLETE DIGESTION OF PROTEIN
When protein digestion is incomplete or proteins are poorly absorbed, bacteria can break down the proteins and produce toxic substances. One group of these toxins is called polyamines, which have been found to be higher in people with psoriasis than in the average population. Polyamines contribute to psoriasis by blocking production of cyclic AMP. Vitamin A and an herb called goldenseal inhibit the formation of polyamines. Since protein digestion begins in the stomach, low level of hydrochloric acid there can also cause incomplete protein digestion. Digestive enzymes and/or hydrochloric acid supplementation aid protein digestion.

FACTOR # 2. BOWEL TOXEMIA
Bowel toxemia plays an important role in psoriasis. A poor balance of intestinal flora due to stress, diet, medications or other factors often lead to bacterial and fungal infection. In fact, many people with psoriasis have colonization of fungus in their digestive system and on their skin. In a recent study, 21 out of 34 people with psoriasis were found to have Candida albicans in the spaces between their fingers or toes, and the majority were also affected by fungi from the Tinea family. Other research found a 56 percent increase in nail fungus in people with psoriasis and other skin disorders. Researchers found a high number of disease-producing microbes, predominantly yeast’s, in the colon. This may not be the cause of psoriasis, but rather an indication of poor gut ecology. Treatment for yeast infection corresponded with a decrease in skin inflammation.

FACTOR # 3. FOOD SENSITIVITIES
Elimination diets and hypersensitivity testing have also produced profound results. People with psoriasis have high levels of IgE antibodies, which indicate an allergic component. Intestinal dysbiosis predisposes people to food and environmental sensitivities, so people with hypersensitivities need to heal the intestinal lining by taking the appropriate bacterial supplements.

FACTOR # 4. POOR LIVER FUNCTION
Poor liver function may contribute as well. Liver function profile tests and metabolic screening questionnaire can help you determine liver function, and the metabolic screening questionnaire can also be used to follow your progress. Incorporate a detoxification program with an elimination/provocation diet to determine which food may trigger your psoriasis.

FACTOR # 5. REACTION TO ALCOHOLIC BEVERAGES
Alcohol consumption contributes to psoriasis, since alcohol contains many toxic substances, which stress an overburdened liver. Candida albicans (yeast) thrive when beer and wine are consumed. Even one glass can provoke symptoms. Alcohol also increases intestinal permeability.

The causes and treatment of psoriasis are complex. Successful treatment must encompass several approaches reflecting its complexity. Look for underlying causes and develop a personal program based on your needs.

FUNCTIONAL LABORATORY TESTING
1. Food and environmental sensitivity testing, IgE and IgG4 testing.
2. Candida testing (either blood or stool).
3. Liver function profile.
4. Intestinal permeability testing
5. Blood testing for vitamin and mineral status.

I have just started my flax seed regimen: 4 heaping tablespoons a day.

posted in Psoriasis Support - 2 replies

new here

2004-11-22T18:40:56Z

Hi. I'm Leah. I have psoriasis. I'm having a pretty bad time of it lately. I've tried scores of things over the years, which I'll share in time. Right now, I'm just overwhelmed and feeling shitty. And what do ya know... there's a tribe of ya. Thanks for existing.

posted in Psoriasis Support - 21 replies

Experiment

2004-10-18T13:56:33Z

I'm gonna give it two weeks and see what happens...

All right, after pouring over the sites, I have compiled a list of things I'm gonna do...

1) Change Diet - Green , leafy and cruciform veggies with eggs or fish as protein.

2) Slow smoking and drinking down

3) oil "sucking" - Okay, this is the weirdest one, but its free and easy so I'm gonna try it. Put a spoonful of olive or whatever oil you like in your mouth and kinda let it swish around for 15-20 minutesa. The oil shoul dbe milky white. The theory is that the toxins are absorbed by the oil. I know.. weird!! But rubbing steroids on my skin is weird too.

I know this is not very scientific due to the multiple variables, but I'll report in a week!

Starting.............................now!!

X

posted in Psoriasis Support - 19 replies

Embryonic Stem Cell Research

2004-10-15T23:22:03Z

Last week, I read an interesting article in my newspaper (you remember, those big sheets of paper with black print that we used for news before the internet?). I don't remember all the specifics on where or who, nor did I save the paper that day, so don't ask me specifics on the article.

It seems that some scientists have finally proven that embryonic stem cells (ESC) do indeed work, and better than adult stem cells (ASC). They used ESC to repair damaged tissue. The basic mechanism is that the ESC would actually become the tissue that they are placed next to, and would fix the tissue as well. IF they can reproduce this behavior in the human body and make it work repeatedly, this has the potential for curing many diseases, especially heart disease, cancer, diabetes, etc. My first thought though was PSORIASIS.

If in fact the ESC can repair the t-cells that are causing the skin to reproduce uncontrollably, then maybe there is indeed a cure.

Thoughts anyone? Think it may work?

Oh, and let's not get into any morality discussions on why ESC research is "evil". I've heard that wayyyyyy too much in the news and elsewhere. I'm just interested in thoughts on ESC and psoriasis.

posted in Psoriasis Support - 2 replies

new here

2004-10-15T04:08:17Z

howdy y'all. glad to have found this tribe - P is getting to me and I need to talk it out with people.

I was diagnosed just last year. Understand the average age of diagnosis is 28.. yup, right on the money. Couple of random spots around the body including, horrifyingly, "down there". Also a spot on the chest, one on the inner thigh, little bit on the nose, a spot or two on the scalp. Doc got me started with desonide ointment and a few samples of another medication in creme form (ointment was too greasy and shiney for the nose). Shampooing with T Gel pretty much since then.

went back a few months ago and "upgraded" to (Clobetasol?) for the problem spots and desonide cream for the nose.

Today: "down there" nearly gone, thank god. most every other place on the body significantly improved (pinkish, but little to no flaking). However, it has slowly spread across the nose. I suspect that's because I have been more concerned with covering it up than treating it. My routine is an exfoliation in the shower and a little coverup, I only medicate it when I think about it at nighttime (rarely). The worst, however, is the EXPLOSION of it on my scalp. Used to have two little spots up in the hairline. Now I would estimate ~30 small areas throughout my hair. Itching and flaking is major, and very embarassing. Can't let my GF run her fingers through my hair. Getting a haircut is awkward.

Supposed to start light treatments soon, although I don't know what good that will do with a thick covering of hair blocking the most problematic spots. Now I hear about this new drug (Enbrel?). Wondering if it's overkill for someone with such a small percentage of their body affected, or if it's a wise choice. I also see advantages in that it wouldn't require as much effort as topical creams, and wouldn't cost as much as light treatments (with co-pays and insurance not covering everything).

Any advice or insight you can lend? Anyone have experience with this drug? Understand it's got some potential side effects...

posted in Psoriasis Support - 4 replies

Awareness Month

2004-10-15T03:56:20Z

October is National Psoriasis Awareness Month.

The thing that I am most aware of is that my psoriasis is getting better. I've had less flaking and itching for a few weeks now. (hooray)

What has helped me a lot is that I re-discovered some 10% salicytic acid gel that I used back in 2000. I don't think it was perscription, but I did get it from a pharmacy. No brand name, the pharmacist had to make it and I remember that took a few days.

Here is a pep talk from the National Psoriasis Foundation

http://www.psoriasis.org/news/press/2004/20040731_natconf.php

I'm most interested in the "new method of administering ultraviolet light that uses a narrower range of light to maximize effectiveness." I haven't heard about that, but it sounds smart.

posted in Psoriasis Support - 0 replies

Why is Xander Unsubscribed?

2004-10-12T09:35:06Z

Why is Xander Unsubscribed?

What is going on around here? People are dropping like flies.

posted in Psoriasis Support - 8 replies

Light Therapy?

2004-10-08T19:07:55Z

God, it was hot here yesterday, and I was sick of hiding my skin, so I wore shorts to a group picnic. (My knees always look like I just fell off a motorcycle plus other smaller spots all over my legs)

I got some funny looks and some questions about it but it really went pretty well. I try to speak openly about it and educate friends as for as much as they want to hear. (I'm not always so good went strangers ask about it)

Anyways, one other guy at the picnic also had psoriasis (i could not tell at all by looking at him) He said he has been doing light box treatments 3 times a week for about 5 months and is seeing a lot of improvment. Has any one else tried this?

posted in Psoriasis Support - 2 replies

Sandpaper?

2004-09-10T16:02:49Z

I'm getting very frustrated wiht the worsening of my skin as weekends appraoch.

Come monday...loks fine... about thursday... jumping jeesus jehosophat!! I look like a leper!!!

I've adopted a roman soldier haircut instead of my long standing pompadour because of the progression on my scalp.

I'm considering using a power sander on it.

Any suggestions on what grit paper?

posted in Psoriasis Support - 2 replies

Hallo, all.

2004-08-19T15:17:11Z

Just found this tribe...nice to see.

I've had P for about 10 years now...Xander, I noticed you asked someone in they were Type 1 Diabetic - I am, since I was 18. No problems with that...actually, I think I'd rather be cured of P than D. My doc thinks thinks they might be related.

Glad to meet you all.

posted in Psoriasis Support - 6 replies

Sweating...

2004-08-04T16:26:27Z

Hi all...

I was reading about alternative treatments for psoriasis and came across the theory that ps was caused by toxin build up in the body that is insufficiently processed and must be expelled through the skin.

Well, I was wondering... Are any of you other psoratics not really big sweaters?

I don't sweat unless it is VERY hot and I am working VERY hard.

That being said, this last weekend, I was moving to a new house and sweated like gangbusters while working on the move.

By day two, the psoroiasis on my hands had improved incredibly!!!

I'm thinking of building a sauna in my backyard.

Any of you who have memberships to gyms with saunas, try it out and let me know what results you get.

posted in Psoriasis Support - 4 replies

Psoratics Anon

2004-07-29T15:35:47Z

Hi, my name's Xander...

And I'm flaky.

posted in Psoriasis Support - 14 replies

Flaking out!

2004-07-21T18:46:39Z

Anybody tried olive oil to tone down the "dried paint" look?

posted in Psoriasis Support - 8 replies

Psoriasis Hall of PShame

2004-07-15T18:29:35Z

A site that points out a lot of the BS out there, and even gives away the secrets of many "secret" treatments.

http://www.pinch.com/skin/pshame.html

posted in Psoriasis Support - 3 replies

What makes your psoriasis worse?

2004-07-09T21:31:37Z

For me:

Drinking... for sure!!!

posted in Psoriasis Support - 5 replies

What works for you?

2004-07-09T20:25:37Z

What clears up your psoriasis best?

posted in Psoriasis Support - 2 replies

Newbie to tribe, veteran psoriasis sufferer

2004-07-09T02:03:43Z

Hi, saw this tribe on anothers profile.

Thought about making one myself. Glad I saw this one first.

Have had psoriasis since age of 2.

Tends to get better in summer, worse in winter.

Anyway. Look forward to discussing treatment methods and coping mechanisms.

posted in Psoriasis Support - 8 replies

Edgar Cayce Psoriasis Diet

2004-06-24T16:06:36Z

Anybody ever tried this diet for psoriasis?

http://www.svpvril.com/psoriasis.html

posted in Psoriasis Support - 0 replies

flakehq.com

2004-06-22T21:07:31Z

http://www.flakehq.com/

Very humorous

posted in Psoriasis Support - 2 replies

Greetings Tribe

2004-06-22T19:23:21Z

Hi there,

Glad to see this tribe, it is nice to be reminded that there are others out there.

posted in Psoriasis Support - 3 replies

Welcome!

2004-02-29T01:54:24Z

If you have psoriasis, know anyone with psoriasis, or just want to know more about this skin condition, please feel free to join!

I hope to get a lot of information flowing about current treatments, future treatments, and things that help you in the hopes it can help others. Tell us about yourself and don't be ashamed of your condition.

posted in Psoriasis Support - 0 replies