The heartbreak of psoriasis

June 21, 2010 8:29 AM

I have psoriasis. I am among the 2-3% of the world population has it. It is a skin condition with a genetic component (thanks mom and dad). It means that I have white plaques on my skin that itch and shed flakes. I shed so much that I have to sweep my floors daily. I have plaques mainly on my arms and legs, but they can appear anywhere (some locations linked from this page are NSFW. I'm lucky, I don't have psoriatic arthritis which affects about a third of all people with psoriasis. People stare at me or pretend not to stare at me in public. I wish they would just ask me what it is. It isn't contagious. Sometimes people ask if I have a bad sunburn or a regular burn. Little kids ask about my boo boos. Dogs lick my legs. There are several different ways to treat psoriasis including steroids, light treatment, injectable antibodies, and shampoos but it is a chronic condition. One treatment was recently withdrawn from the market because of lethal side effects. There are groups for people who have psoriasis. As with many medical conditions, you sometimes get unwelcome suggestions on how to cure it. When I used to work in a hospital environment, the pathologists showed me what it looks like under a microscope.
posted by sciencegeek (113 comments total)

I'm posting this because I'm reaching the point of making a t-shirt that says, "It is psoriasis. It isn't contagious" so the people giving me dirty looks on the subway will stop. It is either that or the t-shirt that says "Yep, definitely leprosy."

Also, LeAnn Rimes would like us to stop hiding.
posted by sciencegeek at 8:43 AM on June 21, 2010 [22 favorites]

Heartbreaking.
posted by kittyprecious at 8:43 AM on June 21, 2010 [5 favorites]

Me too.

A controlled diet amazingly well and really helped my skin condition. Following the diet was time-consuming and expensive where I live so I kind of faded out of it. Still, made me realize how incredibly important it is to eat well.

I'm in UVB treatment now, and it works very well - smooth skin and a light tan. PUVA really did the trick too, but it's a little aggressive and you need followup examinations for skin tumors.

A local olive-oil-and-herb ointment, Húðgaldur / Skin Magic, also works incredibly well. The stuff contains nettle, chickweed and calendula. (Calendula seems to be pretty good.)

Western-medicine Daivonex / Dovonex cream worked OK but had some side effects, including rashy spots in teh face.
posted by krilli at 8:44 AM on June 21, 2010 [2 favorites]

Christ, you don't know the meaning of heartbreak.
posted by mattdidthat at 8:45 AM on June 21, 2010 [5 favorites]

Don't forget about doctor fish. =(
posted by grobstein at 8:46 AM on June 21, 2010

I'm lucky, I don't have psoriatic arthritis which affects about a third of all people with psoriasis.

I have psoriatic arthritis, but almost no visible psoriasis. Does that make me lucky or unlucky?
posted by The Bellman at 8:49 AM on June 21, 2010 [2 favorites]

Christ, you don't know the meaning of heartbreak.

Have a heart, dude. Knowing that you have an incurable, stigmatizing disease is just a little bit of a bummer, okay?
posted by grobstein at 8:49 AM on June 21, 2010 [26 favorites]

I also have fairly bad psoriasis, and in fact do have psoriatic arthritis in most of my joints. The severity and mechanism of the arthritis is almost identical to rheumatoid arthritis, and the treatments are the same. I am 26, and at least one of my knees will need to be replaced, probably somewhere in middle age. I've had the psoriasis since as long as I can remember, and the arthritis since I was 16.

And that said: heartbreaking? No, certainly not. Not for me. The only way I can imagine it being heartbreaking would be if I were athletic. The arthritis has made any athleticism impossible since. Fortunately, I am not athletic. Has it seriously effected my life any other way? Nope.

I was asked about it a lot when I was a child, usually upon meeting someone new. They were curious, and the topic rarely came up again after I explained it to them. Now, I am not asked at all. I can't remember the last time it was brought up, actually. I gather people sometimes assume I have a bad sunburn that is flaking. If not, they probably assume I have one of any number of common skin conditions.

Anyway, thanks for the informative post! Maybe "heartbreak" was a little dramatic, though? There are larger parts of the population with much more debilitating diseases than us. :)
posted by gilrain at 8:51 AM on June 21, 2010

sciencegeek: "I'm posting this because I'm reaching the point of making a t-shirt that says, "It is psoriasis. It isn't contagious" so the people giving me dirty looks on the subway will stop.

Good idea, I'd buy one.
posted by nicolin at 8:52 AM on June 21, 2010

The use of the phrase "The heartbreak of psoriasis" comes from an advertising campaign. It is a phrase I've heard frequently and thought was part of popular culture. I don't think that psoriasis is heartbreaking. The psoriasis I have is a cosmetic problem. People who have psoriatic arthritis have pain and loss of movement.
posted by sciencegeek at 8:54 AM on June 21, 2010 [10 favorites]

Mattdidthat was quoting Tom Waits, himself a famous sufferer of psoriasis (scroll down).
posted by Astro Zombie at 8:55 AM on June 21, 2010 [11 favorites]

The "heartbreak of psoriasis" is a reference to an ad campaign for, I believe, Tegrin shampoo. People who aren't old enough to have been latchkey kids with a television for a babysitter may not have made this connection.
posted by padraigin at 8:55 AM on June 21, 2010 [6 favorites]

Me three!

I've always been extremely fortunate to have a way-mild case (scalp/forehead, nails, ear canals, the occasional elbow or knee patches, a few other unobtrusive spots) + DIP arthritis. The treatments have hugely improved since I was diagnosed 37 years ago.

You know those "shot guns" (sort of like staple guns) used for giving mass inoculations? When I was 12-13, my childhood dermatologist shot cortisone into all my nail beds with one of those every couple of months. I slept every night with Saran Wrap and scotch tape around the ointment on my nails.

I do kind of miss the coal tar and paraffin, though -- inconvenient, but effective. I remember someone posting an AskMe recently about how to mask the after-smell of tar shampoo, but I still find it pleasant and comforting.

I hope education efforts like the Lee Ann Rimes thing work -- I have no problem anymore telling people why my fingers are semi-twisted or what that red patch is, but the teenage years, back when the "heartbreak of psoriasis" commercials were still on the air, when high school life is already filled with casual viciousness and idiocy? It was a secret you guarded exactly as fiercely as you would Hansen's disease.
posted by FelliniBlank at 8:59 AM on June 21, 2010

'the heartbreak of psoriasis' is within my growing-up advertising lexicon, in between 'gee, your hair smells terrific' and 'i've fallen and i can't get up'.
posted by fallacy of the beard at 8:59 AM on June 21, 2010 [3 favorites]

Heartbreak
posted by stbalbach at 9:00 AM on June 21, 2010 [1 favorite]

see also At War With My Skin by John Updike, from his autobiography, Self Consciousness.
posted by puny human at 9:01 AM on June 21, 2010 [3 favorites]

"The use of the phrase "The heartbreak of psoriasis" comes from an advertising campaign. It is a phrase I've heard frequently and thought was part of popular culture."

Ah, okay. I'm sorry for reacting too strongly, then; I wasn't aware of the usage. :)

In the end, psoriasis is just another of those genetic things... like having bad teeth. It's not a curse, but it might be an inconvenience sometimes and cost you a little money if you want to fight it somehow.

The arthritis is worse, sure, but the treatments are becoming fairly effective for many of us. Humira, Enbrel, and that general class of injectable have been a miracle cure for my mother. They were doing well on me, too, although it wasn't as dramatic. The past tense is because I am unemployed now and can't afford insurance. Without insurance, the injectables are about $1500 per month. :P
posted by gilrain at 9:03 AM on June 21, 2010

Never heard of "the heartbreak of psoriasis" but I'm intimately familiar with both ring around the collar and the method by which one gets out protein. It turns out to be really quite simple: with protein!
posted by DU at 9:05 AM on June 21, 2010

Btw, some time ago, in an askme thread, I suggested that psorasis had a fairly important psychological part. What struck me then was that people really didn't buy it. I mean, in France, most specialists i've seen have told me that I definitely needed to lead a quieter life and to get rid of my worries. They seemed to say that a psychological treatment could be very helpful. Of course, it's rather difficult to reach peace of mind when a skin disease is growing on your body, but that's a part of the challenge.
There were some strange times when all of a sudden, I was feeling okay, sort of balanced in a unusual way, and my psioriasis, which had grown for years, disappeared instantaneously (the effect was similar to a shot of cortisone).
Unfortunately, I don't even know why I was feeling so good... and the psoriasis came back. But i'm convinced now that there's a huge unconscious factor in the disease.
posted by nicolin at 9:08 AM on June 21, 2010

You don't know the meaning of heartbreak

I have a dear friend with such terrible psoriasis that his arms and legs are almost constantly, completely covered in plaques, as are parts of his face and neck. Plaques like this, covering at least 60-70% of his skin at any moment. Whatever parts of his skin that aren't currently covered in plaques are scarred and discoloured. He is 32 and has never had a girlfriend or even been on a date. Complete strangers (usually teenagers) laugh and point at him on the street and shout at him to use some lotion. The steroidal treatment that actually started to work for a little while had to be discontinued due to serious side effects, right when he was starting to think he might get better and live a normal life.

You really need to think before you speak.
posted by Wroksie at 9:09 AM on June 21, 2010 [41 favorites]

My wife has psoriasis; hers seems to react to diet - refined sugar and a lot of bread make it go berserk.
posted by Mister_A at 9:11 AM on June 21, 2010

I have heard from medical professionals that stress can be a factor in how severe the psoriasis is, yeah. I've also noticed odd things, like if I get a bad cut, rash, sunburn, or abrasion, that area is very likely to be a new psoriasis patch when it heals.

When younger, I would joke that psoriasis was almost like a mutant healing factor. My immune system was "so strong" that it produced more skin cells than I needed. And that is, very basically, how it works. Wolverine's version was more practical, but hey, most people don't have any mutant healing factor at all! ;P
posted by gilrain at 9:12 AM on June 21, 2010 [1 favorite]

I have it too. It was awful as a kid, seemed to all but disappear for a few years as an adult, and is now back to being fairly bad again. Scalp and torso, mostly, and very bad on my elbows lately.

There doesn't seem to be much rhyme or reason for when it flares up or where it gets bad. For a few years it was terrible on my inner forearms, then it moved to my back. It's been bad on my face and around my hairline at some times in my life, other times its all but disappeared.

The one upside for me is that it doesn't itch at all and really never has (except sometimes on my scalp). I've had good luck treating it with topical steroids but generally don't bother because that stuff is gross and gooey and it stains clothing and sheets and is generally more of a hassle than just having bad skin.
posted by notmydesk at 9:12 AM on June 21, 2010

My mother had psoriasis - a particularly bad case, from what I understand. She had it on her elbows, knees, the backs of her hands and fingers, the tops of her feet and toes, scalp, ears, and from what I understand, she may have also had it "downstairs."

Strangely enough, although she had one of the worst cases of psoriasis her dermatologist had ever treated, she went into spontaneous remission sometime in her late 40s/early 50s.
posted by deadmessenger at 9:13 AM on June 21, 2010

Btw, some time ago, in an askme thread, I suggested that psorasis had a fairly important psychological part. What struck me then was that people really didn't buy it.

Psoriasis is autoimmune, and I think autoimmune diseases are frequently exacerbated by psychological stress. My brother has a pretty bad case of psoriasis and psoriatic arthritis, and he's definitely decided that part of his plan to manage it is cutting down on stress as much as possible. It's not anything like a cure, though.
posted by craichead at 9:14 AM on June 21, 2010

"You really need to think before you speak."

Yes, true... some rarer cases are a lot more severe than most. I can see something like you describe being genuinely heartbreaking. I and others here are only speaking of the more common area under the bell curve, so to speak.
posted by gilrain at 9:14 AM on June 21, 2010

Eli Roth has said that the flesh eating disease in Cabin Fever was based on his own experience with psoriasis and his skin feeling like it was coming off.

So there's that.
posted by Tesseractive at 9:15 AM on June 21, 2010

Oh manalive, I love this post.

Fellow psoriasis person here. I've had it ever since I was young - no arthritis yet, knock on wood. When I was young I used to have big patches on knees, elbows and ankles. Now it's mostly migrated to my hands and fingers. I'm so embarrassed by the looks of my hands, because it's not something you can hide under clothes. (Plus, I use my hands a lot at work, and I know I'm getting lots of "leprosy wtf?" looks, or questions about if I've burned myself.) The location also makes it hard for me to use the prescription creams regularly, since the only time I can put them on is right before bed (and pray I don't rub it on my face as I sleep). Plus, my fingernails are all jacked up as a result, which is lots of fun, and half the time I walk around with bandaids on from where my fingers crack and bleed.

(The good news is that I must be immune to MRSA and all kinds of fun bugs, what with all the exposure I've gotten.)

I count myself lucky that the amount I have is relatively small in terms of body acreage. It just sucks sometimes that it's in such a visible place. I've kind of resigned myself to looking gross, and to hell with what other people think.
posted by Salieri at 9:17 AM on June 21, 2010 [4 favorites]

Oh, and sea water helps. A lot. If I lived near an ocean I'd swim in it every day.
posted by notmydesk at 9:17 AM on June 21, 2010

Oh word on the "Unwelcome suggestions on how to cure it".

The last asthma related AskMe I responded to, someone not so helpfully left a one link suggestion of... *drumroll*... getting infected with hookworms! Yep, some quack sells hookworm infected bandaids for people with asthma. And no the OP was not asking the question "Got any quackery for Asthma?", which I believe would be the only acceptable time to offer that suggestion.

Clearly, un-diseased person is better at not being diseased, therefore "helpfully" makes suggestions. Uggh.
posted by fontophilic at 9:20 AM on June 21, 2010 [2 favorites]

Salieri — Don't worry about the appearance. I have psoriasis on my hands and fingers and have dated incredibly attractive women who didn't give a shit about my psoriasis. Peroid. :)
posted by krilli at 9:21 AM on June 21, 2010 [1 favorite]

psoriasis and eczema. When skin hates itself. Such a pain in the ass. Thanks for the views!
posted by cavalier at 9:21 AM on June 21, 2010 [1 favorite]

nicolin: "Btw, some time ago, in an askme thread, I suggested that psorasis had a fairly important psychological part. What struck me then was that people really didn't buy it."

Strange, ever after watching The Singing Detective (written by Dennis Potter, himself a sufferer from psoriasis) I was kind of convinced that the psychological factors were considered important, especially considering the possible vicious cycle of strong outbreak -> depression -> even stronger symptoms.
posted by PontifexPrimus at 9:22 AM on June 21, 2010

My father has it on his scalp, legs and arms. Almond oil in a lotion form (like Evelyn & Crabtree to his embaressment) was found to work very well
posted by infini at 9:29 AM on June 21, 2010

"having this disability, which was really quite shaming, forced me to be more adventurous and daring than I ordinarily would have been. I'm at heart a kind of cautious, conservative person, and without the skin ailment I might not have left New York, but just stayed and grown old in New Yorker harness. It was the need to get to the sun, get to the beach, that forced me to leave the city and my job, and of course to earn my living as a freelance writer."
posted by availablelight at 9:31 AM on June 21, 2010

My husband has it. I've always wondered if there is a dietary component to it, but it hadn't occured to me that stress might be a factor as well. I'll need to pass that on to him. He had a lot of success with UV treatments, but had to stop because the out of pocket costs were too high.

He manages to keep it covered up for the most part - the only visible spots are his elbows and ears. He also has it on his torso, which is always covered, and his legs, which is why he never wears shorts.

And maybe this isn't heartbreaking to some, but it sure was to me: once at an outdoor festival that was quite packed with people, I saw a woman suddenly and visibly jump back after coming too close to his elbow and seeing the patch of psoriasis he has there. The look of revulsion on her face killed me. She looked at her boyfriend, asked if it was contagious, and they both spent a minute leaning in and inspecting it, determining that :"it was probably eczema, and not contagious". Thank God that his back was to them and he was completely unaware of the exchange.
posted by DrGirlfriend at 9:33 AM on June 21, 2010 [2 favorites]

When younger, I would joke that psoriasis was almost like a mutant healing factor. My immune system was "so strong" that it produced more skin cells than I needed. And that is, very basically, how it works.

Yeah, being in a perpetual state of inflammation and your immune system going bonkers on your own body parts is tiring, but I really do suspect in a total-science-moron and anecdotal fashion that the mutant healing factor thing is the consolation prize. Psoriasis runs in both sides of my family, and I don't know of a blood relative who has had any form of cancer. Since age 12, I have never had the flu or food poisoning -- and I routinely eat gas station hotdogs and don't wash produce. Even when I smoked, I generally had far fewer and less severe colds than my coworkers.

I take Plaquenil for my arthritis, but unless the pain gets unbearable, I am god-damned if I'll let the docs suppress my immune system any more than that because on balance, overactive is better than underactive.
posted by FelliniBlank at 9:35 AM on June 21, 2010 [2 favorites]

Astro Zombie nailed the initial reference to heartbreak:

never needs winding
Never needs winding
never needs winding
Gets rid of blackheads, the heartbreak of psoriasis
Christ, you don't know the meaning of heartbreak, buddy
C'mon, c'mon, c'mon, c'mon

which I'm am 99.99% sure is a reference itself to the ad campaign.

I've a mild to medium case of psoriasis myself that comes and goes, top of left foot and scalp. Been trying to go bere foot a bunch this year to see if that helps as I know sticking my feet in socks and then boots can make it itch something fierce when I take them out.

Incidentally this bit of news was in the last Science News:

People with one version of a protein called HLA-B*5701 have immune cells that never fully learn this task. A new study published online May 5 in Nature shows how these uneducated cells help keep HIV down...

That can be a problem because these undereducated T cells sometimes mistake normal body proteins for invaders and attack, causing autoimmune diseases such as psoriasis and creating hypersensitivity to some drugs. But these aggressive, undereducated T cells are also better at attacking HIV.

So if you have psoriasis, you might have a greater resistance to HIV
posted by edgeways at 9:35 AM on June 21, 2010 [1 favorite]

Oh word on the "Unwelcome suggestions on how to cure it".

The last asthma related AskMe I responded to, someone not so helpfully left a one link suggestion of... *drumroll*... getting infected with hookworms! Yep, some quack sells hookworm infected bandaids for people with asthma. And no the OP was not asking the question "Got any quackery for Asthma?", which I believe would be the only acceptable time to offer that suggestion.

Clearly, un-diseased person is better at not being diseased, therefore "helpfully" makes suggestions. Uggh.

This is an interesting experimental treatment, not necessarily crazy. It hasn't worked yet, I gather, but I remain open to the possibility.
posted by grobstein at 9:35 AM on June 21, 2010 [2 favorites]

>You don't know the meaning of heartbreak
...
You really need to think before you speak.

You really need to become more familiar with pop culture, or at least read threads more thoroughly before commenting.
posted by anazgnos at 9:35 AM on June 21, 2010 [1 favorite]

The heartbreak of remoras.
posted by Who_Am_I at 9:36 AM on June 21, 2010

The last asthma related AskMe I responded to, someone not so helpfully left a one link suggestion of... *drumroll*... getting infected with hookworms!

I know not much of helminthic therapy beyond this article, but "quackery" is a bit strong. Research continues into this; I suffer from allergies, and the article made me believe there could be a future in this someplace. Maybe the poster passed it on in good faith.
posted by hydatius at 9:37 AM on June 21, 2010 [2 favorites]

Treatment suggestions I've heard (not saying that any of these work or don't work, psoriasis is complicated): eating lots of pickled herring, washing with red wine vinegar, various interesting vitamin supplements (Zinc is a favorite), get more sun, get less sun (a very emphatic older Chinese woman), various creams and lotions, bathing in water from a well in someone's home in Morocco (I should have taken this guy's invitation, it would have certainly been an adventure), bathing in the Dead Sea, bathing in dilute bleach, and so on.

Also, thank you all so much for your stories and additional links. I've been feeling crappy about this and as always, Metafilter to the rescue.
posted by sciencegeek at 9:38 AM on June 21, 2010

The last asthma related AskMe I responded to, someone not so helpfully left a one link suggestion of... *drumroll*... getting infected with hookworms! Yep, some quack sells hookworm infected bandaids for people with asthma. And no the OP was not asking the question "Got any quackery for Asthma?", which I believe would be the only acceptable time to offer that suggestion.

That someone had probably heard this Radiolab episode or seen this kind of press. The first study was not so promising.
posted by availablelight at 9:41 AM on June 21, 2010

Couple things ...

Taurine may exacerbate or even cause psoriasis.

I have/had psoriasis. One of the causes was the well water where I was living. Another was taurine. Caffeine and sugar don't help, either. But what kept it in check was natural soap, which I made myself from scratch from vegetable oils, lye and goat milk - far better than most soap you can buy in the store, and cheap if you make it yourself.
posted by krinklyfig at 9:44 AM on June 21, 2010

Oh, also, more sun helped me. Winter was always the worst, with the dry air and less sun. Now it's mostly gone since I moved from my old place and no longer drink anything with added taurine, and almost never do caffeine or sugar. Mine was mild but getting worse when I started dealing with it.
posted by krinklyfig at 9:46 AM on June 21, 2010

FelliniBlank: "I take Plaquenil for my arthritis"

what is your plaquenil/ methotrexate/ sulfasalazine ratio? I've been playing a bit with mine because I've been feeling flu-ey for a long while, and I think it's the immunosuppresant aspect of my drugs kicking in.
posted by boo_radley at 9:51 AM on June 21, 2010

A local olive-oil-and-herb ointment, Húðgaldur / Skin Magic, also works incredibly well. The stuff contains nettle, chickweed and calendula. (Calendula seems to be pretty good.)

Yes, the most effective soap I made for my condition was castile (pure olive oil for a base) infused with calendula, with goat milk, supperfatted at around 7-8%. I think maybe neem oil would make it better, but never had a lot of luck with neem, myself, and it doesn't smell all that great.
posted by krinklyfig at 9:54 AM on June 21, 2010

Thanks for posting this.

A possibly stupid question: but is non-arthritic psoriasis painful?
posted by mondaygreens at 9:55 AM on June 21, 2010

I have atopic eczema which looks similar to the pictures linked here, albeit a little less "plaque-y". I live with it, will not use steroid creams (way too many of them as a kid) and as long as I don't drink too much (scratch it like a motherfucker when I'm drunk and asleep) it's bearable.

One of the treatments I had as a kid were coal-tar bandages. I seem to remember them working, but we had to stop as the skin post-bandage was very sensitive to sunlight and would peel 4 or 5 layers deep. Like FelliniBlank, I still love the smell. Smells of childhood & safety.
posted by jontyjago at 9:55 AM on June 21, 2010

I don't want to derail this thread, so this'll be my last comment on the subject.

I want to suggest that you guys are kinda missing the whole freaking point.

Sure, there might be some promise of some kind of therapy with parasites, (despite, as you admit, a study showing otherwise). My point is, for whatever reason, there is an odd bit of psychology in effect for these situations, as if the un-diseased person has some superior knowledge or even ownership of a diseased person's body.

It's like seeing an obese person and suggesting they eat more lettuce, or a person with psoriasis and offering them some hand lotion. Yes they think they are being "helpful" maybe they read a study about lettuce being really good for you, or they use hand lotion every day and never had psoriasis so you should try it. The point is these "helpful" people should just fuck entirely off. They have no idea what they are talking about. Even if they have some idea what they are talking about, this is not some intellectual exercise with proper application of articles and news reports. It's a person's body. It's not your body. Again, entirely fucking off is the correct and polite course of action.
posted by fontophilic at 10:00 AM on June 21, 2010 [16 favorites]

That's really interesting, edgewise. My family has a ton of autoimmune disease, and I also have a relative on that side of the family who is one of those people who tested HIV+ really early and inexplicably stayed healthy for long enough to benefit from antiretrovirals. It never occurred to me that there might be a connection.

The immune system is a wacky, amazing thing.
posted by craichead at 10:03 AM on June 21, 2010

Well, fontophilic, I apologize for mentioning that my wife's psoriasis gets worse when she eats sugar and starch. Where do I get off?
posted by Mister_A at 10:03 AM on June 21, 2010 [3 favorites]

Non-arthritic psoriasis can be painful. I find that during the winter my skin gets worse, and will form cracks. It is especially painful when I apply moisturizer to it - essentially like putting it on hundreds of open wounds - so I lay there and let it hurt a while and eventually, after about five-ten minutes, it stops and I have that happy feeling of my skin not being as dry. A tiny feeling of euphoria from the pain stopping.

I used to play a lot of ultimate frisbee and anytime I fell or made a diving catch, my elbows/knees would get skinned. I bled during almost every game. I always announced this to new players so they wouldn't be shocked by my playing with bloody knees. I also would tell them that I'd been recently tested for HIV and was negative.
posted by sciencegeek at 10:09 AM on June 21, 2010 [1 favorite]

Again, entirely fucking off is the correct and polite course of action.

it is, and i don't do this kind of advice thing, but i'm also someone who gets frustrated when i can't help somebody who is suffering; i think often it comes out of that, and so the motives tend to be caring.
posted by fallacy of the beard at 10:09 AM on June 21, 2010

I wasn't sure whether I should chip in with this, but it's reminding me alot of conversations my friends with other autoimmune disorders have had, and the "Chronic Illness Bill of Rights" a friend of a friend wrote back in the day.

She used to have a website with it on it but it's not up anymore, but I found it elsewhere on the internet. (here)

my chronic illness bill of rights (by billie rain)

I HAVE THE RIGHT…

to the full range of emotional responses to my experiences—from self-pity to gratitude and everything in between.
to seek out information and advice from any source i can find.
to follow or disregard any advice or recommendations i receive from strangers, friends and family, fellow sickos, books, or health practitioners.
to seek relief or a cure, or not, as i see fit.
to healthcare, including face-to-face visits with allopathic and alternative practitioners, prescriptions and supplements, assistive devices, fitness classes, and access to the information i need to make informed decisions about the potential risks and benefits of whatever i pursue.
to any accommodations i need in order to have the option of participation in the public life of my community and the larger society.
to define my level of availability to others based on how i feel and my assessment of my needs.
to make plans and commitments with the understanding that i may be too sick to follow through on them.
to address conflicts and disagreements in ways that honor the delicate relationship between stress and my well-being.
to not be compared, favorably or unfavorably, with others who share any or all of my diagnoses.
not to have to answer the question, “how are you?”
to be appreciated for the contributions i make to my communities, even just by my presence.
to be valued for who i am, not what i do.

fontophilic, I think you're right on the money. At the same time, there's a difference between ill people sharing their experiences with each other, and "helpful" outsiders being all "Oh, have you tried crystal healing?" I think we're generally skewing toward the former, thankfully.
posted by Tesseractive at 10:09 AM on June 21, 2010 [17 favorites]

I live with it, will not use steroid creams (way too many of them as a kid)

Why not? Because you're sick of them, or because they did some sort of damage when you were young? I'm sorry, I don't understand what you're trying to say.

(Son has atopic eczema which is treated with steroids; nothing else seems to work and the recurrent staph infections are kinda scary.)
posted by RikiTikiTavi at 10:11 AM on June 21, 2010

I did read the John Updike article when it first came out in the New Yorker. I knew nothing about psoriasis up till that point. It was a good read, I learned a lot, (but he is an easy writer to read for me.)

I remember him saying he would take his family on vacation in the winter to their delight, particularly sunny places where he could sit in the sun and it would help his psoriasis.
posted by chocolatetiara at 10:11 AM on June 21, 2010

Based on the above I should move to somewhere sunny, shoot cortisone into my fingernails, and swim in a salt water pool with skin remoras.

I live in Oregon and I have psoriasis. It never stops raining here so I always figured I was rusting.
posted by Tacodog at 10:12 AM on June 21, 2010 [1 favorite]

Good to read these experiences. I was wondering if sea water helps. I know it is essential for my comfort. I am also a life long sufferer of eczema, and all the medicinal 'experiments'. Also am familiar with the humiliation ("Is that a beard?" - jr. high questions).

I have learned to avoid cold weather and dry climates (and swim in clear ocean water 2-3 times a week, even if it stings). I also noticed that hormonal changes affect outbreaks, so that can be a bummer. It sounds like there are some similarities with psoriasis.
posted by Surfurrus at 10:15 AM on June 21, 2010

RikiTikiTavi: using steroid creams regularly over a long period is controversial.

Here is why I stopped:

Side effects of topical steroids
Internal side effects

If more than 50g of clobetasol propionate, or 500g of hydrocortisone is used per week, sufficient steroid may be absorbed through the skin to result in adrenal gland suppression and/or eventually Cushing's syndrome.

* Adrenal Gland Suppression.
Topical steroids can suppress the production of natural steroids, which are essential for healthy living. Stopping the steroids suddenly may then result in illness.
* Cushing's Syndrome If large amounts of steroid are absorbed through the skin, fluid retention, raised blood pressure, diabetes etc. may result.

Skin side effects

Local side effects of topical steroids include:

* Skin thinning (atrophy) and stretch marks (striae).
* Easy bruising and tearing of the skin.
* Perioral dermatitis (rash around the mouth).
* Enlarged blood vessels (telangiectasia).
* Susceptibility to skin infections.
* Disguising infection e.g. tinea incognito.
* Allergy to the steroid cream.
The risk of these side effects depends on the strength of the steroid, the length of application, the site treated, and the nature of the skin problem. If you use a potent steroid cream on your face as a moisturiser, you will develop the side effects within a few weeks. If you use 1% hydrocortisone cream on your hands for 25 years, you will have done no harm at all (except for having wasted a lot of money!)

http://dermnetnz.org/treatments/topical-steroids.html
posted by Surfurrus at 10:22 AM on June 21, 2010

Ask MetaFilter: The point is these "helpful" people should just fuck entirely off
posted by hydatius at 10:24 AM on June 21, 2010 [8 favorites]

Well, there's a difference between solicited advice and unsolicited advice. Of course, there's also a difference between unsolicited advice and a discussion of people's experiences. The way this post was framed, with particular reference to the poster's experience, somewhat blurred that distinction, but I don't think that comments on posts in the blue are generally taken to be discussions of the OP's personal situations.
posted by craichead at 10:30 AM on June 21, 2010 [1 favorite]

My husband has it. I've always wondered if there is a dietary component to it, but it hadn't occurred to me that stress might be a factor as well.

My rheumatologist (psoriatic arthritis, see above) has an interesting take on this. He says that people need to see cause and effect in their diseases, even when those diseases are simply cyclical, as many immune response diseases are. So they have an attack and they think back and they say: "Ah ha! I had cherry pie! I never eat cherry pie! It must be cherry pie!" and they cut out cherry pie and they are symptom free for a while because the disease in in a down cycle. When it comes back they don't think:"Huh, it wasn't the cherry pie!" they think "Ah! I had extra bread with lunch . . . "

So I think of my arthritis as highly variable based on any number of factors some of which I can control and some of which (notably the weather) I can't. He says there's comparatively little good research to indicate its cyclical based on anything at all -- or at least anything we've identified yet.

[Aside: He also sees this as the reason the vaccine/autism meme is so hard to crush -- people need to see a reason for the terrible things that happen, apparently at random. It's a way to give themselves closure and "forgiveness". If you give them something rather than simply saying "we don't know -- it happens apparently at random", they will latch on to it, however much science there is to the contrary.]
posted by The Bellman at 10:31 AM on June 21, 2010 [7 favorites]

Sorry, everyone, for not getting the joke. Somehow missed out on that bit of pop culture fun, and didn't preview before I posted.
I can, however, recite the entire scrolling list of maladies that can be treated with Gold Bond Medicated powder, 20 something years later, straight from the tv advertisement. Psoriasis included.
posted by Wroksie at 10:34 AM on June 21, 2010

... people need to see cause and effect in their diseases, even when those diseases are simply cyclical, as many immune response diseases are.

Yes, people can make wrong assumptions about the dietary cause of symptoms. Conversely, medical people can make wrong assumptions about the effect of diet. It sometimes takes quite a while for a change in diet to affect the disease. This distance between cause and effect can make the link seem weak or non-existent. (I am one of those people who is still shocked at how MDs are rarely required to study nutrition.)
posted by Surfurrus at 10:45 AM on June 21, 2010

I framed it by discussing my personal experience because my goal in posting this was two-fold:

1. To get people who don't have psoriasis to know a little about it and then maybe I will reduce the number of weird looks on the subway by a percentage point.

2. To say Hi to all the other people who have psoriasis and share some sites that are useful, funny and so on.

A post on a medical condition without a reference point to someone who suffers it is in some ways uninteresting. You're more likely to read Oliver Sacks' work than a set of journal articles covering the same material.

Yes, people have widely differing experiences with psoriasis and its treatment. Another fun genetic gift from my family (thanks dad - NB:I love my dad and he's given me many other great genetic traits) is migraines. People are more familiar with the wide range of triggers for migraines than psoriasis and with the wide range of response to treatment as well. So apply that knowledge to the joys of psoriasis a bit before getting cranky about different people having different advice and different experiences.
posted by sciencegeek at 10:46 AM on June 21, 2010 [1 favorite]

It hit me when I hit the half century mark. What gets me is the stress factor, which apparently contributes to many other ailments as well. "Stop worrying!" just seems a hard cure to implement, especially when you are trying to cope and stay positive and your angst is but a subconscious dread you are not even aware of until your skin starts flaking off.
posted by bonefish at 10:50 AM on June 21, 2010 [1 favorite]

I'm not faulting you for framing it this way, sciencegeek. I'm just saying that if you had framed the post the way that metafilter posts are typically framed, people would have been able to discuss their understanding of and non-firsthand experiences with psoriasis without getting the "unsolicited advice" smackdown. Typically, discussions on the blue aren't taken to be advice.
posted by craichead at 10:56 AM on June 21, 2010

I had it on my forehead in high school. Not a great experience for a teenager. It went away for many years. When it came back, it was on my hands. I've had it various other places, but having it on my fingertips was the worst. When I had to be fingerprinted for my wife's Green Card application, my fingers were such a mess that the INS guys clearly thought I had done something to try and conceal my identity. Later, it migrated to my knuckles, which was more visible but less limiting and painful.

In recent years, it has completely disappeared twice - once, when I spent a week on vacation in Nova Scotia, and last year when I spent a week building a tree house. Both times, it just vanished over a few days. I'm inclined to think the psychological thing may be real. Or maybe Canadian beer really is that much better.
posted by Kirth Gerson at 11:04 AM on June 21, 2010

A friend of mine has this. Pretty severely. Legs. Arms. Scalp. What gets me is that in the areas she doesn't have it, she has the prettiest complexion imaginable.
posted by St. Alia of the Bunnies at 11:04 AM on June 21, 2010

Let it be noted that this is my very first post on the blue. I am actually enjoying other people's perspectives on unsolicited advice - when I get this kind of advice from random people on the street I generally just listen and then go home and look it up online. I don't find it offensive and I look at it as people who want to help and are sharing what worked for their uncle. But there is a fine line between sharing something and pushing it. Medical advice is like religious advice - sharing something positive in your life is okay; demanding that I follow your advice is not.
posted by sciencegeek at 11:10 AM on June 21, 2010

getting yourself tested for vitamin d levels and celiac disease might help you choose an approach. apologies if this is just another unwelcome suggestion.

Vitamin D may benefit psoriasis patients in a number of ways. Recent studies have shown that patients suffering from a variety of inflammatory conditions were often vitamin D-deficient. A significant number of patients had simprovement after taking only modest amounts of additional vitamin D per day

A growing body of evidence is beginning to show that there is a connection between psoriasis and gluten intollerance (celiac disease). For a small percentage of psoriasis sufferers there exists an important connection between what they eat and what happens to the skin.

They found that a significantly higher proportion of psoriasis patients had elevated celiac disease associated antibody levels, and those with elevated antibodies had previously required systemic immunosuppressants or psoralen plus ultraviolet A phototherapy.
posted by kimyo at 11:12 AM on June 21, 2010 [1 favorite]

My mom, sister and now niece all have psoriasis on most of their bodies. I have a bit on the elbows, not really noticeable. Got in many fights growing up due to the insensitive nature of kids. Anyhow, will forward the post on to them. Oh, and the first time I heard the phrase "the heartbreak of psoriasis" was on MST3K, don't remember which episode :)
posted by tetsuo at 11:38 AM on June 21, 2010

"Lethal side effects." Lethal side effects. Lethal side effects?
posted by neuromodulator at 11:42 AM on June 21, 2010 [2 favorites]

RikiTikiTavi - As to why I no longer use steroid creams, Surfurrus posts some of the controversy surrounding them, however my own reasons for not using them are a little more subjective. For me, they don't actually work. If I don't drink, my skin gets better whether or not I use creams. Even if I'm not drinking there will be ebbs and flows of good and bad times, creams have no effect.

I've had a couple of bad years skinwise since moving to South America and have had several "attacks" so bad I needed to go to an ER. I've had cortizone injections 3 times. The first time I was clear for 2 months. The second time for 3 weeks. The third for 4 days. I was back in England and my hometown GP said that these shots were simply shutting down my immune system for a period of time and very far from a good idea. But I was desperate at the time.

Creams are nowhere near this strong of course, but I've found the law of diminishing returns applies. Far from it for me to tell you what to do with your child, but I would examine the possibilities of his eczema being environment-related (feathers, wool and horses kill me) or food-related (wheat and dairy being the most common). This will hopefully help you to reduce his reliance on steroids whilst controlling his eczema.
posted by jontyjago at 11:47 AM on June 21, 2010

Well, fontophilic, I apologize for mentioning that my wife's psoriasis gets worse when she eats sugar and starch. Where do I get off?

I've got ankylosing spondylitis (another auto-immune arthritis related to funky HLA-B proteins), and I have also noticed a link between starch and disease activity. I switched to a low-starch diet in 2005, and have had five years of significant relief with no meds other than an occasional Advil. It's not a cure, but diet change has taken my daily pain levels from 6 to 8 out of 10 to about 2 to 4, which has had a huge impact on my life. I haven't had iritis (the most miserable side-effect of AS, at least for me) since then, either. If not for this diet, I'd probably be on Enbrel today.

It doesn't work for everyone with AS (the forum at the site I linked to above has a bunch of people it worked for and a bunch of people it didn't), and Google suggests that the same goes for psoriasis, but cutting out starch for a few weeks is relatively cheap and easy, so it might be something to try.

(Dear Abby: am I allowed to "helpfully" make suggestions if I'm a diseased person who is indeed better at not being diseased with what you're diseased with, but quite a bit worse at not being diseased with what I'm diseased with? And does it matter whether or not it's the disease next door? --CONFUSED BUT STARCHLESS)
posted by vorfeed at 12:14 PM on June 21, 2010 [1 favorite]

One drug for psoriasis treatment killed my mom so I really hate when people take psoriasis as a "just deal with it" problem.

I've also had psoriasis most of my life, though not as bad a my mom (or brother, or grandparents). I'm lucky in that I don't have many thick plaques...just ruddy, patchy and flaky face skin and some small plaques in inconvenient locations.

For me, and definitely my mother, it's set off by stress and chemicals. Looking like a flesh-falling zombie is stressful, so it's a vicious cycle. High school was hell. My mother smoking for many years certainly didn't help her.
posted by swimming naked when the tide goes out at 12:29 PM on June 21, 2010 [1 favorite]

I developed psoriasis during one of the most stressful periods of my life. I was attending school, working part time, and spending most of my free time training in support of athletics. The psoriasis progressively worsened over the course of two years. Recovery was immediate and, thus far, complete once I made several lifestyle changes.

The first and most important was developing my ability to perceive and handle psychological stress. I started to structure my life around situations which allowed me to remain psychologically stable. I learned to feel the physical results of prolonged stress, and to adjust my habits to reduce my stress level.

The second change was complete abstinence from all forms of refined sugar, particularly in drinks. I also made, and continue to make efforts to abstain from processed flour.

I also found that showering less, and using less soap, helped the condition of my skin. However, I made this change after the psoriasis retreated to only affect my scalp and I don't know how much of a difference it would have made during the worst period of the condition.

One of my friends has a much worse case than I ever had. He smokes heavily and engages in a much more stressful lifestyle than I do. He drinks sugary drinks regularly. He maintains a high level of mental stress, and is sometimes so edgy as to make others feel destabilized in his presence. I am 100% positive that neither of us are perfect representatives of groups who have had and resolved their psoriasis, and those who haven't resolved their psoriasis, but the marked difference between our approach to living makes me wonder how much of a change you can make via changes in diet and psychology.

I feel quite lucky that my psoriasis resolved. I hope others can find patterns which help them.
posted by melatonic at 12:33 PM on June 21, 2010

Psoriasis kind of gives me something to do. Picking at it is my favourite nervous tic.

I'm lucky mine is pretty mild and mostly hidden, though.
posted by Ouisch at 12:53 PM on June 21, 2010 [1 favorite]

I recently went to the dermatologist for the first time in years to get a refill for the tube of Dovonex I've had for about a decade. He recommended Clobex instead. While it's a pain in the ass because there's no generic equivalent (yet), it's been a huge improvement over Dovonex (which worked pretty well to begin with). It's kept one of my elbows in check, but I've stopped using it on the other elbow because the psoriasis has gone away (at least for the past few months). Recommended it to my Dad and he's been happy with it as well. It comes as a cream or a spray. Not sure if it makes much of a difference, but I've been happy with the spray (not a fan of greasing myself up for non-freaky reasons).
posted by yerfatma at 12:57 PM on June 21, 2010

My psoriatic arthritis started about 13 years ago, as an adult luckily. Not as bad as it could be, but it is very painful. I started injecting Humira about three months ago and have stopped taking painkillers for the first time in a decade. Some patches of psoriasis cleared up entirely. It may just be cyclical but I have good hopes for it. Trouble is that it's $500/shot and takes two shots per month. Still, Kaiser pays for most of that.

There's nothing like injecting yourself to make your five-year old stop complaining about having to have vaccinations!
posted by mdoar at 1:01 PM on June 21, 2010 [2 favorites]

My father has psoriasis and psoriatic arthritis deformed the bones in his extremities back when he was in his 20s. My uncle had worse psoriasis but no arthritis.

They both had scarlet fever (advanced strep infection) back in the 30s, when this was fairly common. Scarlet fever has been correlated (cause still not certain) with auto-immune disorders, especially given an underlying genetic predisposition.

My uncle was bi-polar and the nervous stress gave him huge patches. There were two periods in his life during which he had an enforced period of taking medication, and each time, the patches disappeared completely. Couldn't really say his quality of life improved overall though -- in the second case, it was after a stroke and nearly a year in a coma.

My father has mostly eliminated the patches, but a side effect of UV therapy in the 1960s and 70s is that he's now dealing with a lot of skin cancer lesions. However he keeps plugging along and is still practicing surgery in his 80s. Abdominal surgery is actually therapeutic if you have arthritic hands: you need only dexterity, not strength, and your hands are always being bathed in a 98 degree bath. And if anything, his own medical issues give him a bond with his patients, some of whom are third generation.
posted by Araucaria at 1:06 PM on June 21, 2010 [1 favorite]

Thank you sciencegeek! Some advice for those of you that have psoriatic arthritis and take a TNF drug like Humira or Enbrel. If your deductibles have risen steadily, call the manufacturer to learn about co-pay assistance they offer. You'll be amazed how much you can save per year by signing up and letting them know that you can no longer afford the co-pays.
posted by machaus at 1:25 PM on June 21, 2010

I have scalp psoriasis. What this basically boils down to is really really REALLY bad dandruff, plus an intolerably itching scalp. Various dermatologists put me on various topical clobetasol-based products, which worked really well. However, as soon as I tapered off the clobatesol products, the scalp psoriasis came back with a vengence.

So now, I use Clobex (the clobetasol-containing shampoo) once every 4 days (3 days on, 1 day off). And this works really well. I am kind of concerned that I'm becoming addicted to the stuff, though. Does anybody have any info on how dangerous it is for me to use Clobex in this way?

Also, as a sidenote, WHY are dermatologists so fucking useless? Anytime I ever go to one -- for this, or for my various acne issues -- they NEVER have a straight answer. It's always, "we'll try this, and see if it works... there's no solution to this, only treating the symptoms."

Fuck dermatology. Fuck it right in its nasty face.
posted by Sloop John B at 1:59 PM on June 21, 2010

I've got ankylosing spondylitis (another auto-immune arthritis related to funky HLA-B proteins), and I have also noticed a link between starch and disease activity.

Huh, vorfeed, that's really interesting. My problems are in the same neighborhood as yours (including iritses), and I have starch cravings when I'm really low. I've cut down on starches in my diet in general some and it does seem to help, but I'm not watching my diet closely enough to say there's a definite link.

And on the subject of unsolicited advice, I'm in fontophilic's camp. I get so tired of people telling me how to solve problems that all of medical science misdiagnosed for 15 years. Something interesting from actual science is one thing, but if nobody ever got really insistent about copper bracelets in my direction ever again, it would be too soon. I don't have the extra spoons to deal with helpful people some days.
posted by immlass at 1:59 PM on June 21, 2010

I've got it. Now my daughter has it. Ugh.
posted by MarshallPoe at 2:01 PM on June 21, 2010

My mom suffers from psoriasis. When she was first diagnosed, I thought, "how lucky, it's on the bottom of her feet. No one will see it." How dumb was I? At times, it completely debilitates her.

But now, she's been diagnosed with stage 4 cancer and is receiving chemotherapy treatment. And, guess what? Her psoriasis is gone since her immune system is getting suppressed and her cells are not regenerating. A small blessing for us all.
posted by fyrebelley at 2:13 PM on June 21, 2010

So now, I use Clobex (the clobetasol-containing shampoo) once every 4 days (3 days on, 1 day off).

Well the fine print talks about affecting your adrenal gland, and not to use it for more thas a few weeks, which is why I stopped using the stuff.
posted by goethean at 2:32 PM on June 21, 2010

Well the fine print talks about affecting your adrenal gland, and not to use it for more thas a few weeks, which is why I stopped using the stuff.

Right -- but typically, they tell you to use it every day or more than once a day. I figured that since I only use it once or twice a week, it wouldn't do the same damage.
posted by Sloop John B at 2:34 PM on June 21, 2010

Something interesting from actual science is one thing, but if nobody ever got really insistent about copper bracelets in my direction ever again, it would be too soon.

ha ha, yeah. The one I always get when I mention that I avoid starch is "have you heard of quinoa? My cousin is on a gluten-free diet blah blah blah." It gets kinda tiring explaining that a) yes, I have heard of Quinoa As Seen On Oprah And The Today Show, as I am not currently or formerly living under a rock b) gluten is not the same thing as starch, which is why they have different names and c) quinoa is so freakin' full of starch that I might as well just eat a potato, especially since nobody ever asks if I have heard of potatoes.

That said, I figure people are just trying to help... and you never know when something somebody mentions will be the thing that helps. As long as people aren't super-pushy with their advice, I usually just live with it.
posted by vorfeed at 2:40 PM on June 21, 2010

So now, I use Clobex (the clobetasol-containing shampoo) once every 4 days (3 days on, 1 day off).

OOPS -- just realized that I mistyped. I meant to say (3 days off, 1 day on) which is a little bit different :)
posted by Sloop John B at 3:13 PM on June 21, 2010

it is, and i don't do this kind of advice thing, but i'm also someone who gets frustrated when i can't help somebody who is suffering; i think often it comes out of that, and so the motives tend to be caring.

I can understand that and have done that myself, but I do find that the most frustrating form of this advice is for people with mental health issues. Hey, random person, thanks for letting me know I may not need medication. Let's see ... is it because you saw Garden State? Yeah, that qualifies you as a medical expert. I'll see if my insurance company can pay you instead of my psychiatrist!
posted by krinklyfig at 3:24 PM on June 21, 2010

Also, as a sidenote, WHY are dermatologists so fucking useless? Anytime I ever go to one -- for this, or for my various acne issues -- they NEVER have a straight answer. It's always, "we'll try this, and see if it works... there's no solution to this, only treating the symptoms."

As far as I understand it, that's how psoriasis is understood medically. It's not curable, is not curable but is treatable, some cases better than others. It may relate to stress, diet, auto-immune disorders, genetic history of such, environmental causes, or any of a combination of the above, and the treatments are varied and inconsistent. I wouldn't want my dermatologist feeding me a line of bullshit just to make me feel better.
posted by krinklyfig at 3:28 PM on June 21, 2010

And acne is kind of the same way. But I was given Accutane for acne by my dermatologist in high school, and there may be a link between it and various autoimmune problems. It did work for my acne, but my skin has been too dry ever since. So, not really sure, but I've been through non-Hodgkins lymphoma and psoriasis since then.
posted by krinklyfig at 3:33 PM on June 21, 2010 [1 favorite]

Disclaimer: This may be true, or it may be a very strange case, IANAD and I don't even watch medical shows on TV. But recently a good friend of mine has been diagnosed with inoperable/untreatable, etc. skin cancer. The docs seems to think it was because he went in for a treatment of his life-long psoriasis that included blasting the hell out of his skin with UV rays (or something akin to that - again I don't claim to know and I'm not going to be bugging him about the details right now). It (psoriasis) cleared it up, but then he didn't follow up more than one time with a doctor after treatment to see how his skin was doing.

Again - grain of salt! Just throwing it out there. I haven't even read the links. I have no opinion on anything :)
posted by Kloryne at 3:40 PM on June 21, 2010

Even if they have some idea what they are talking about, this is not some intellectual exercise with proper application of articles and news reports. It's a person's body. It's not your body. Again, entirely fucking off is the correct and polite course of action.

A heavily favorited comment.

I've come to the same conclusion, though from the opposite side. It just doesn't pay to try to be helpful for the simple reason that there is no objective way to judge what is genuinely helpful and what is asshat doctor playing. So best to keep your mouth shut.

I learned that the hard way when a friend who was pregnant reacted with fury to my email - I had included a link to some story I found about food/pregnancy interactions. We were always exchanging links on various stories we found interesting, so it didn't occur to me that email might be offensive. Subsequently I realized that probably she was under a lot of pressure and the last thing she needed was another "helpful" link contradicting diet advice that's been going back and forth with no central authority. I apologized, and since then I have kept my mouth shut when it comes to anything health related, no matter what I may think I "know" and how "helpful" it seems to me.

So the upside is that there's no more nattering and unsolicited health advice. The downside is that even if she feeds her kids rat poison, I'll keep on walking. But you take the good with the bad. After all, what if it's discovered with rat poison, as so often - "it's the dose that makes the poison" - that in certain amounts it's very beneficial? She feeds her infant soy milk - I think it's very dangerous to do that to infants on account of phytoestrogens, but who am I to talk, even if I were a world class expert in the field, which I'm emphatically not. It's not my place to talk, and not my kids.

There's an interesting parallel here with financial advice. I never ever give financial advice to my friends, no matter how stridently they ask - "sorry, it's my policy to never give money advice". Partially as the result of this thread, I'm going to make the same reply if asked about health. Shakespeare had something to say about lending money to friends, but the same applies to health advice, I believe - don't give it, don't take it.
posted by VikingSword at 4:28 PM on June 21, 2010

Not sure how my 14 year-old cousin feels about his recently-diagnosed psoriatic arthritis. He's a pretty active kid. I'm sure his parents are doing their best to make his life normal...but still, what a box of nuisance for him.
posted by datawrangler at 4:55 PM on June 21, 2010

I suppose you folks have tried out all the various meds for it? My father had it something bad for a long time; topical meds never really helped and he was convinced he would have it forever, then he tried one more and it cleared the whole thing up. It happens.
posted by cogneuro at 5:07 PM on June 21, 2010

I've had bad psoriasis since I was 5. The heartbreak joke is tired. Please stop repeating it; it isn't funny. It never was.

I don't think I have anything enlightening to add about having it. Seriously, what can one say? I have a lifetime of bad experiences I would happily trade for just a taste of normalcy. In the winter, it cracks, burns, and bleeds. In the summer, there is the joy of wearing long-sleeved shirts and pants when it's 90 degrees outside, and boy, do people love to ask why. They're so inquisitive!

I suppose having psoriasis is every bit as wonderful as one could imagine.
posted by belvidere at 5:14 PM on June 21, 2010

I've got psoriatic arthritis (psoriasis developed in my late teens, arthritis in my mid 20s) and it frankly sucks. I am lucky to be going through a pretty mild phase of it at the moment.

I have gone through all matter of pills, foams, shampoos, topical creams, acupuncture, massage, changes to my diet, etc. in hopes of treating it. Some things work but there always seems to be some creepy side effect to the drugs that are available for treatment. Methotrexate? Works wonders but don't try drinking or getting pregnant (or getting someone else pregnant) while you're taking it. Enbrel? Hope you don't mind injecting yourself. Also, puts you at higher risk for crazy infections and could cause lymphoma. Fun. Topical creams/foams? Use them too much and they thin out your skin. Taking sulfasalazine ended me up in the ER after I broke out in hives so bad that my eyes swelled shut. But, you hurt bad enough, you take those risks.

I spent a lot of my 20s, right after my diagnosis, being pretty angry about having PA. Try being the youngest person in the rheumatologist's office waiting room by about five decades. I enjoyed playing guitar before the arthritis developed, but over the course of a few months my wrist joints fused together so that wasn't possible anymore. There was a period where I couldn't even walk.

There are quite a few things I just can't do anymore. The upside is that I enjoy the things that I *can* do all the more. I just live my life a little differently than I used to, and it's cool. I also like to think I have become maybe a little more compassionate toward people who are suffering any kind of chronic illness.
posted by medeine at 5:14 PM on June 21, 2010 [1 favorite]

I have it. I also have Type 1 diabetes and necrobiosis lipoidica, all diseases that occur due to an overactive immune system. I want to punch my immune system so hard all the time. All these conditions require constant maintenance with about a million unknown factors, and the answer is apparently to remove stress from our lives. Well that's just so easy right now, especially easy not to hate yourself when your body hates itself and deals with it by making you ugly.

Right now I'm planning going to a cottage on an island with my very best friends for a weekend. I'm contemplating buying a religious modesty bathing suit even though I'm not religious and find them meh. Or possibly wearing pantyhose at least. Most likely I will just spend the whole four days just not swimming or doing anything in the water or hot tub and pitifully watching my friends cavort. Because even because most of them know, they just don't get it, and they ask innocent questions, but those questions might as well be insults to me. (The "why are you burning yourself with cigarettes" question was the worst, but that was a particularly tactless friend.) I love all the friend-hugs and massages we have going on, but I'm getting scared to let anyone touch me because I feel gross. I have the awesomest boyfriend in the Ever, because he thinks I'm absolutely gorgeous anyway, and tells me it all the time. It's still not enough for my self-esteem.

Dovobet works for me, and I don't really care about the side effects right now. I should, but I'm 25 and right now, fuck it, I'd rather look normal instead of wasting the prime of my life. I don't have a drug plan, though, so I guess I'll have to just use what's left and that's it. Light treatments are the closest thing I have to a miracle, and I need to start them again now that I've moved back to Canada. I haven't done it yet because I'm terrified that it won't work the second time, and the only thing worse than psoriasis is knowing that what worked has stopped working and now you're screwed. I tried to do treatments in the US, but even with my ironclad school plan, I got billed for each minute-long treatment and you have to do it three times a week for it to be effective, so I just couldn't afford the luxury of it. Because it's only cosmetic, right, so it's just a total luxury. And you want me to lower stress in my life? Keep sending me scary medical bills for the treatment that keeps me healthy, especially the ones you screw up and try to bill me for several hundred dollar for each minute in a glorified tanning bed. In Toronto, you walk in, scan your health card, and you're done. You don't even have to make an appointment, you just walk in! It's a ten-minute wait at most, usually none. I think it's my favourite thing about the Canadian health care system.

Thanks for the thread, and all the commiseration within. Hugs to all sufferers, I don't care if you're flaky.
posted by ilana at 5:27 PM on June 21, 2010 [4 favorites]

I also have psoriasis, but fortunately only small patches occasionally.

The last time it cropped up on my scalp, so I tried an ointment called Daivonex, which worked amazingly well; one application and the patches went away.

The only problem is it also caused contact dermatitis on regular skin, so for a few days my scalp around the patchy area was mad itchy, which I found ironic as Hell.
posted by bwg at 5:32 PM on June 21, 2010

Aww, I can sympathize. I have had psoriasis my entire life. It's usually just been noticeable patches on my elbows and knees, and I was so thrilled when it finally went into remission (I have no idea why). Now, I have it back worse than ever. The patches are larger, thicker, and in more areas. Once again, no idea why now. (Yeah, I HATE in the winter when it starts cracks and bleeds.. I've had friends and family tell me to 'put some lotion on it', like it's just basic dry skin and that'll clear it up.)

Even though I was always so embarrassed about the visible psoriasis, the worst was the crusty stuff I had on my scalp. I would have to schedule haircuts around them. If I was having a terrible flair-up, I often would wait because there was nothing worse than having this uncomfortable (but non-contagious) skin condition and having the person trimming my hair not wanting to touch me. Of course, I have no idea what my scalp actually looked like, but I just couldn't imagine that it could be worse to attempt to be nice and just cut my hair without comment ('gross, what's that?!', I'd sometimes get).. I mean, it was just bad enough to have it, let alone having to listen to comments or know that the stylish girl forced to cut my hair was thinking about how repulsive I was.

Anyway, my scalp is the only area that I've managed to improve upon.. I know a lot of people haven't had luck with tar-based shampoos, but I use a little every time I wash my hair. Which is once a week or less. Honestly, I think when I stopped washing my hair daily, the condition improved.

As far as the horrible looking patches that I have now.. I just decided people are going to have to deal with it. It's summertime, it's hot, and I'm not wearing a longsleeved shirt out just because people are going to stare.
posted by Mael Oui at 8:02 PM on June 21, 2010

This has been incredibly interesting! I taught massage therapy for three years and I always had to stress to my students that psoriasis was NOT contagious- it's amazing how many think it is.

I'm studying Chinese Medicine, and during clinical theater we treated a guy with pretty severe psoriasis on his knees and arms- it was a combo of acupuncture, herbs, and dietary therapy, but he saw better results with that than he had with years of Western meds. TCM works differently for everyone, and we look at a patient from a constitutional POV rather than the Western model of "You have Psoriasis" (or diabetes, or cancer, etc ...); as every patient is individual every treatment will be different, and results will of course vary. A TCM dermatology specialist would be recommended.

I only mention it because no one had discussed an "alternative" treatment, but I hope I'm not being obnoxious.
posted by starfyr at 9:59 PM on June 21, 2010

"what if it's discovered with rat poison, as so often - "it's the dose that makes the poison" - that in certain amounts it's very beneficial?"

Warfarin, the commonly prescribed blood thinner (aka Coumadin), is rat poison.

and giving soy milk to infants is retarded.
posted by puny human at 11:14 PM on June 21, 2010

I suppose you folks have tried out all the various meds for it?

Medication is something that never occurred to me until your suggestion in the form of a rhetorical question. Thanks for sharing.

Next, I wish someone would post something about how dandelions, mud packs, and moving to the mountains cleared it up for a distant relative of a friend they once knew--or that's what they heard. I delight in those too.
posted by belvidere at 3:43 AM on June 22, 2010

Medication is something that never occurred to me until your suggestion in the form of a rhetorical question. Thanks for sharing.

Heh. Yeah, I'm finding all of the advice in the thread kind of interesting. On the one hand, it's nice to hear about what worked/didn't work for various people. On the other hand, it's getting hard to shake the I haven't tried everything so it's all my fault I have this blues.

With many health issues - and especially something treatable-but-not-curable like psoriasis - what works for one person may not work for another. One person swears by a certain steroid cream, another insists it's all about diet, a third had it clear up when they reduced their stress. And that's really awesome - I love the sharing - but my brain is still providing a critical undercurrent. I'm having to stop myself from replying that, well, my own psoriasis seems to come and go whenever it wants to, no matter how stressful I am or how many carbs I'm eating. It moves in mysterious ways.

(Ugh. "Health" in the modern Western world is such a loaded word. It's so tied up with the concept of virtue that it's hard to untangle all the knots. If you're a Good Person and do Good Things to your body, it will be healthy and strong and clean and thin and everything Good. Well, sometimes shit just breaks down, and it's not your fault. I keep having to remind myself of this cultural indoctrination when I'm feeling particularly hard on myself.)

One thing I've found - and maybe this is just a factor of getting older and rapidly approaching the years when women are supposed to be Not Hot Anymore - is that I don't owe it to anyone else to look normal. I use various ointments on and off (Taclonex has been good for me, but it's expensive and greasy to the touch and stains my sheets), but only when my skin is more dry/scaly/cracking than usual. Otherwise, I don't want to deal with the side effects. Part of me is terrified that if I use it too much it'll stop working for me entirely. But there's another part that just wants to accept my patchy skin and deal. I don't owe it to the rest of the world to be aesthetically pleasing enough for them before I go out and function in it.

I want to hug you all, fellow scaly (and not so scaly) people. This thread has been a balm.
posted by Salieri at 6:02 AM on June 22, 2010 [6 favorites]

As I'm typing with funky, pitted nails that cause me to pretty much live my public life with my hands balled up in fists...except when I'm scratching the patch on my scalp and brushing the flakes off (hear, hear on the nervous tic)...I'm thankful for this post. I don't have it as bad as lots of folks, and have only had it for 4 or 5 years...it started in my nails, then my scalp, then a couple other unfortunate locations.

I've honestly considered having my nails removed permanently, just so the areas would be easier to treat, and maybe wouldn't look so bad...Clobetasol Propionate tends to work for awhile on my scalp, as does Taclonex, but as has been said, the patch comes back with a vengeance as soon as I lay off. Nothing works on my nails....massive cortisone shots to the nail beds, oils...my dermatologist even had some Methotrexate compounded into a topical paste as an attempt.

I always hesitated to try systemic treatments....side effects looking as bad or worse than the disease.

I'm pretty much resigning myself to living with it...the worst thing is, I work with my hands, and on a near daily basis I have to interact closely with clients for demonstrative purposes...I just have to pick the least affected finger to point at whatever I'm instructing them on.
posted by rhythim at 9:41 AM on June 22, 2010

Medication is something that never occurred to me until your suggestion in the form of a rhetorical question. Thanks for sharing.

More unsolicited medical information:

I was prescribed Doxepin once for extreme itching. This drug seems to have gone into some disfavor, so the use of it for anti-itching is not widely known. My dose was extremely low (oral 10mg a day) -- and *extremely* effective ... not only for itching, but for helping to clear up my condition. (I had no side effects and only used the drug for six months.) I see now there is a topical form.
posted by Surfurrus at 12:02 PM on June 22, 2010

My personal opinion is that we currently understand as much about how the human immune system works as we knew about the causes of infections in 1910. A hundred years from now I really hope we understand the root causes of psoriasis, arthritis and other such illnesses.
posted by mdoar at 12:56 PM on June 22, 2010 [4 favorites]

Cashflow.

My psoriasis breakouts are related closely to how much I am in funds at present.

It's interesting to see where other people are in their relation to their psoriasis, acceptance, fear, misery, even wry celebration.

When younger, I would joke that psoriasis was almost like a mutant healing factor. My immune system was "so strong" that it produced more skin cells than I needed. And that is, very basically, how it works. Wolverine's version was more practical, but hey, most people don't have any mutant healing factor at all! ;P
posted by gilrain at 9:12 AM on June 21

Snap! That's exactly what I have been trying to tell people for years.
posted by Catch at 1:50 PM on June 22, 2010

Salieri: This thread has been a balm.

Maybe I'll rub this thread on my skin the next time a patch shows up. Sorry, couldn't help myself.
posted by bwg at 1:55 AM on June 23, 2010