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29 October 2008

Today is World Psoriasis Day [More:]
I've had psoriasis since I was 8, in varying degrees of severity over the years. The last few years, it's been as bad as I can remember it. I had a really bad outbreak in 2006 after I'd had a lot of stress for a few months, followed by some surgery. In the past I had the plaque type but now I have the guttate type, as well as it sometimes affecting my fingernails. It's in my toenails too.

It often gets worse after surgery, I'm told, because the body is concentrating on healing the parts that have been operated on. A human has only a finite amount of resources, and when energy is diverted to healing more urgent things, then non-life-threatening ailments, such as psorisis, flare up.

Conventional treatment available in the UK involving steroids is really not good. It'll solve the problem in the very short term, but the long-term effects of prolonged steroid use are worse than the illness, imho.

Diet can affect it - dairy, citrus, alcohol, processed food can all make it worse.

Sunlight definitely makes it better, as does seawater. I have the unfortunate combination, though, of psorasis on a very fair skin, so I have to be very careful in the level of sun exposure I can allow myself. It always gets worse in the autumn and winter.

Although it's not life-threatening or contagious, psoriasis can be debilitating, both physically (if it's the type that develops into psoriatic arthritis) but more so psychologically. There've been times when I've felt as if I have the plague and it's stopped me from taking part in some activities - swimming, nights out. I can't wear little strappy tops in the summer, because it's all across my shoulders. I've seen people recoil in horror in the changing room at the gym - it's understandable. It looks horrible. I always try to use one of the private cubicles at the gym.

It's one of those illnesses where it's easy enough to try to treat the symptoms (with varying degrees of efficacy) but much harder to cure it, because the actual cause of it isn't really known - it may be triggered by stress, it might be an auto-immune disease, there are a hundred different explanations for the cause of it.

So for now, I live with it. Sometimes with quiet acceptance, other times raging.

Hey, me too!

I've had it since I was 14, pretty much constantly until the last couple of years. I've had it everywhere -- like inside my ear canals everywhere -- but my worst and most stubborn places are my arms, legs, scalp and lower back/waist.

I've put tonnes of crap on it, had hours of UVB treatments, tried everything -- but a couple of years ago I went on a biologic (raptiva). It mostly cleared me, but never entirely.

Earlier this year I got into a stage three clinical trial and it's been a miracle. The drug's study name is ABT-874, but it seems to work by a similar mechanism as a drug called CNT0-1275 (ustekinumab), which I think is already in the approvals process in the US.

Anyway, I go in once a month for blood tests, to fill out forms and to get the injection. The first three months I was definitely on the active drug because I cleared completely. COMPLETELY. I haven't been completely clear in the almost 20 years I've had the disease.

I think now -- in the second three months -- I'm on the placebo, because my chances of it are 1/3, but I'm still pretty much clear. I've had a couple of sketchy spots, pencil-eraser size, but nothing has blown up. I'm nervous, but if I flare I'll be moved back to the active medicine automatically. Unlike a lot of the first-gen biologics, this drug doesn't cause a flare after you stop using it. Most patients apparently stay clear quite a long time even when they stop using it.

I'm incredibly lucky to be in this study. When I took Raptiva it was $1800-2000 for four weeks' supply -- I was SO LUCKY to have insurance that covered it 100% with a $2.00 deductible. Most people could NEVER afford that without excellent drug coverage. (I'm now on the provincial Rx plan but of course they don't cover these drugs.) Next year I go "open label" which means they provide the active drug to me for self-injection and there's no more risk of being on the placebo.

Anyway, essexjan, it's pretty much felt at this point that it's an autoimmune dysfunction, T-cells and cytokines or whatever, though it *can* be initially triggered or flared by stress. (My first outbreak was during my parents' divorce.) My experience of treating it with biologics -- aka immunosuppressants -- bears that out. The risks suck, the unknown and the known, but it's worth it to not walk around feeling like a monster and getting stared at.

The main recommendation I have for anyone with psoriasis is to make sure your dermatologist is the best, and is involved in clinical studies and research. Mine has staff specially dedicated to administer study patients right in his office, so if there's a study he can place patients in, he knows about it. My past dermatologists have not been so proactive.
posted by loiseau 29 October | 10:22
Of course, I bloody well spelled it wrong in the link. Grrr!
posted by essexjan 29 October | 10:30
My brother had what was assumed to be a bad psoriasis when he was younger that covered his legs. It was generally assumed then that it might have been from not being breast fed. Despite his scratching wounds then, it has gone away from light treatments and steroids and hasn't been an issue in his adult life. i think it may has helped cause his wiry leg hair.

i will happily go see the doctor fish with you. For some people, it has been a more effective treatment than any other.
i've been fascinated by these fish for well over a decade. They even prominently feature in a comic i did in the 90s.
posted by ethylene 29 October | 10:31
Oh, wait, maybe it was eczema.
Either way, the point is, let's go to a fish spa!
posted by ethylene 29 October | 10:34
Wow, loiseau, that's amazing. i didn't think anything had made it to market yet.
posted by ethylene 29 October | 10:36
Oh yeah. Well, some of the biologics used for psoriasis are technically or were originally approved for psoriatic arthritis/rheumatoid arthritis. But the first biologic specifically for psoriasis (Amevive) was released in 2003.

There's been a lot of study since then, I guess partly because these drugs are developed for/tested on several related immune conditions like Chron's disease and rheumatoid arthritis. The study drug I'm on now is significantly more sophisticated than Amevive -- they're just a lot better at targetting specific aspects of the immune system. I know mine targets/suppresses interleukin 12 and 23, though I couldn't really tell you what that means...
posted by loiseau 29 October | 11:19
Rather recently there have been quite a few new drugs to help treat ailments that never had much recourse besides symptom suppression.
i was surprised to hear there is a purportedly effective fibromyalgia medication out now, and i'd tell you how i found that out except it shows someone in a negligent light i don't need turned on right now.
posted by ethylene 29 October | 11:34
I had a bike accident when I was a kid, or maybe it was a rug burn I got from sliding down carpeted stairs, or maybe it was a mosquito bite, or maybe it was a combination of all the above, but anyway it turned into huge solid patches of psoriasis on my calves for pretty much the entire time I was in grade school - great stuff for other kids to tease me about, and probably the reason I don't wear shorts or miniskirts very much now. I have a terrible picking habit too, which really only made it worse.

The most useful actual treatment was putting mometasone furoate cream (it's a steroid treatment, I think) on the area and then covering with this sticky silicone sheet they use for burns (saran wrap was also recommended). After about a week of this it faded pretty dramatically.

I don't know how much lasting damage there is. There's a big shiny knotty scar there now that breaks out in cold and/or dry weather. Still self-conscious about it, as can't pass it off as snakebite or something more badass.

I'd like to try the fish.
posted by casarkos 29 October | 11:40
Just goes to show how valuable research is, and how very important shared information and international cooperation are, both inside and out of the "scientific community."
More people should realize how they are in some way part of the solution and community.

Fishing trip!

It's been quite a leap from where they started to how they've spread. The little fishies that fascinated me as a little known curiosity and "folk" remedy so very long ago have come along way, baby. i hope they do well and aren't mutating with their new popularity.
Because i'm no fishfucker; don't fuck up the fish!
posted by ethylene 29 October | 11:47
Loiseau, do you know what they're watching in your blood work at all?
posted by ethylene 29 October | 11:52
Rather recently there have been quite a few new drugs to help treat ailments that never had much recourse besides symptom suppression

yep. can't say much more due to the NDA wrapped around it all (I *do* work in the Legal Dept donchaknow) but this is one of the reasons I'm very willing to stick it out here with BigPharmaCo. This site is one of their major developers/mfgrs. of those sorts of drugs. My mom has both rheumatoid arthritis and Crohn's. Both are hell.
posted by lonefrontranger 29 October | 12:14
Yeah, i should stop before i derail this into Crohn's, "syndromes" and autoimmune disease.

*will make gone fishin' signs*
posted by ethylene 29 October | 12:27
Well, ultimately these are still just symptom suppression -- they're just more effective than the old tar/steroid topical treatments. I doubt there'll be a cure for psoriasis in my lifetime, but if there is I imagine it'll be either just before or just after a cure for related diseases.

Ethylene, I'm not sure what they look for in my blood -- it's collected and shipped off to the study lab and I'm not sure I'm even allowed to know much about it. But I do know I got tested for all kinds of viruses and stuff before I started, because I got a positive hep-C result that scared the shit out of me. (Two subsequent tests showed it was just a false positive.) They also make me pee in a cup for pregnancy tests each month, because if I got pregnant I'd have to drop out of the study immediately or else have an eleven-legged cyclops alien monster baby.

I'm going to ask about the blood tests at my next appointment, though -- I'm curious.
posted by loiseau 29 October | 12:32
PS. Those fish ain't TOUCHING me.
posted by loiseau 29 October | 12:33
Well, you don't need the fish.

i'll go on about the fish another time, maybe once i restore the comic from the old pencils i've got, but they are fascinating to me for lots of reasons.
ultimately these are still just symptom suppression

Yeah, i didn't mean otherwise, it was a general statement on progress made.
i haven't been following any recent information specific to this so much as general strides in associated studies.
i wonder what they'll say if anything since you're still in it.
i'm sure it's mostly general as far as they'll say, checking your levels, blahdeblah, but if you wanna share--
--but i'm just guessing this isn't part of your main field of study or occupation (like i know), but look at how much you know because you've had to to deal with it.

i need to shut up.
i find this fascinating but i gotta stop before i fall into another research hole while i've barely dug into the ones i have to deal with today.
posted by ethylene 29 October | 13:04
I'm sorry for all of you who are suffering. I don't know much about the condition, but it sounds awful.

That said, I'd feel a lot better about World Psoriasis Day if it weren't sponsored by Merck. Way to commodify a disease, guys!
posted by mudpuppie 29 October | 13:48
This thread is sponsored by Merck "We commodify disease!"

I totally don't mind talking about study stuff because I find it so amazing -- I mean honestly, most of my life I've been given a prescription for some steroid or another and sent home. NOTHING ever worked for me and I have spent a lot of my life being upset about my skin.

I've never had a lover (for example) who I didn't have to break the news to before getting undressed. I have always had to say at some point, "You know, I have this, um, condition? And it's not contagious, I swear. And it's not an STD. And it's gonna look gross, but please pretend it isn't there and I'll try to forget you know about it and act like it doesn't totally bother me." I never forget, even now, that I have psoriasis.

The fact that this drug is working is truly a phenomenal thing -- and much needed in my life!
posted by loiseau 29 October | 16:15
I've never had a lover (for example) who I didn't have to break the news to before getting undressed. I have always had to say at some point, "You know, I have this, um, condition? And it's not contagious, I swear. And it's not an STD. And it's gonna look gross, but please pretend it isn't there and I'll try to forget you know about it and act like it doesn't totally bother me."

Hell, yeah. Been there, done that.
posted by essexjan 29 October | 16:38
Wow, me too. And I totally understand the "feeling like a leper" thing. I have it pretty bad on my scalp and there is nothing worse than going into the bathroom at a party when you feel like you have been charming the room and realizing you look like you have the worlds worse case of dandruff. I also have psoriatic arthrits, which pretty much SUCKS.

Medication wise I use Olux for my scalp and a cortosteroid ointment on my skin. I tried Sulfasazine and it worked ok, not too many side effects, but not worth it in the long run.

The worst part is, I was recently diagnosed with multiple sclerosis, and I have to give myself daily injections on my lower stomach, hips, and thighs. Each injection runs the risk of creating a new plaque (due to the whole "site of injury" thing) and the crud is spreading in that area like wildfire.
posted by evilcupcakes 29 October | 21:34
Hey, all, me, too. Guttate. The light therapy has been helpful for me (I go to Dr. Koo at UCSF, who is I think a psoriasis guru guy), but it's so time-consuming to go to the clinic three times a week. I haven't gone for a few months, and I'm just a major scaly mess. I'm going to try to get the at-home light thing-y. Everyone says you have to fight with the insurance company, but I haven't tried yet.

Also my scalp is a mess, too. I use a liquid cortisone on my scalp, but it's never very controlled.

It makes me feel nice to have this thread of other psoriasis people.
posted by Claudia_SF 30 October | 01:15
Oh -- here's something. I like the 3% salicydic acid shampoo, but it's a bitch on (artificial) hair color.
posted by Claudia_SF 30 October | 01:17
This vid's got it all || Fourteen Women