Apparently I have scalp psoriasis. What should I do now?
January 13, 2009 12:16 PM   Subscribe

Apparently I have scalp psoriasis. What should I do now?

For the last year or so, I've had some pretty mean dandruff. Head and Shoulders does absolutely nothing for it. It's gotten a lot worse over the last few months, so I went to my dermatologist to get it checked out.

She seemed pretty sure that I have scalp psoriasis, even though I don't have psoriasis anywhere else on my body. I should mention that I hadn't washed my hair for a few days, so it probably looked particularly bad that day. She prescribed Clobex shampoo (.05% clobetasol) and a mousse called Luxiq (.12% betamethasone valerate). She also told me to use Neutrogena T-Sal shampoo and Nizoral shampoo (the over-the-counter variety) on alternating days for 8 weeks, and after that to only use the T-Sal and not the Nizoral. Before I left her office, she loaded me down with coupons and free samples for the medicines.

Anyway, when I was finished at her office, I went online and did some research on Scalp Psoriasis. The google image search I did scared the crap out of me. And then I did some research into the drugs that I was perscribed, and they seemed really powerful. I was particularly concerned about the Luxiq - according to one source, suddenly stopping the betamethasone can cause a "rebound reaction" wherein your condition suddenly becomes a heck of a lot worse. Also, some of the corticosteriods have the potential to "thin the scalp," which I'm concerned would lead to hair loss.

So I went to get a second opinion from another dematologist. She did not think that I have scalp psoriasis. She said that what I have is seborrheic dermatitis. Still, she prescribed me a generic form of the Olux mousse (.05% clobetasol) and told me to use it for two weeks. She said that I didn't have to worry about a "rebound reaction" when coming off it because she didn't think I had psoriasis. And of course, she gave me a ton of coupons and free samples of the medicines.

Finally, I went to get a third opinion from yet another dermatologist. He was of the opinion that I do have scalp psoriasis. When I asked him about the diagnosis of sebhorrheic dermatitis, he said, "Well, they both look very similar .... depends on what it looks like that day. If it's red, they say psoriasis." or something to that effect. He didn't seem to think that the Nizoral or T-Sal did any good. He proscribed me Taclonex (calcipotriene 0.005% and betamethasone dipropionate 0.064%), and told me to take it for about 4-6 weeks or "until it gets better." He wasn't concerned about a "rebound reaction." He did say to avoid scratching, because removing the scales "makes it worse." And before I left - wouldn't you just know it? He gave me a handful of coupons.

So here I am, totally confused. I don't know what's wrong with me or how bad things will get. Right now, I just have really bad dandruff and an itchy scalp (which may have been less itchy before I started washing my hair every day) How bad will this condition get? Will I lose my hair? Will I wind up with a head full of scabs? Will I wind up like these poor unfortunate souls?

Should I take the medicines that have been prescribed to me? So far I haven't had any of the perscriptions filled. If I did take medicine for this, which one(s) should I take? I'm concerned about side effects. I'm concerned about a rebound reaction. I'm concerned about resistance and dependence. I'm concerned because all 3 doctors told me basically to "take it until the condition goes away," which sounded inexact and scary. I'm concerned because each one of these doctors gave me a handful of coupons and free samples - obviously the drug lobby has been hard at work here.

What should I do?

And... finally, I have to ask this - why do dermatologists always disagree? Every time I go to dermatologists to get second/third opinions, they ALWAYS disagree, they ALWAYS prescribe different stuff, and they ALWAYS give me lots of coupons and free samples.

(full disclosure - I use Clindagel (1% clindamycin) twice daily on my face for acne)
posted by Sloop John B to Health & Fitness (15 answers total) 25 users marked this as a favorite
Listen, I've had a malady of skin conditions the likes of which would shock you. I have scalp-based ezcema/psoriasis. It flakes and itches and bugs the hell out of me. It looks like terrible dandruff, even though it's not.

I was prescribed Beta-Val lotion. (This is the same ingredient in your Luxiq mousse.) It's alcohol-based, so it evaporates quickly, you can put it on even after styling your hair (it's a thin tipped bottle) and after the initial 40 seconds of it burning with an unholy hellfire that Satan himself couldn't even comprehend, it brings instant itching relief and takes care of the flaking. (I don't know of the substantive differences between psoriasis/ezcema if you'll still get burning or not, but I know these drugs are often prescribed for both.)

It's nice because I only apply it where I need it, which is usually all along the back of my scalp and up some. It's nice because I can use regular shampoo. It's not an ointment, it's literally rubbing alcohol, so it just evaporates off and I don't have to deal with hair and such.

It *is* a corticosteroid which is all sorts of fun, but Beta-Val is used sparingly enough, for me, at least, that I have noticed absolutely no side effects. Minus the amazing burning for about 40 seconds. Especially since I only need it WHERE I need it, I'm not damaging my entire scalp unnecessarily. And I've noticed really no problems. I've been using this for 5+ years, about 2-4 times a month, depending, sometimes a LOT more when it gets bad.

Finally, you need to talk to one of your dermatologists and give them this information exactly. (Your question, that is.) It's their job to listen to you and your concerns and your concerns here are valid. Tell them what the others' have said, that you're fearing rebound effects and that you would like their concrete advice. They should accommodate you and it's your responsibility to take this initiative, but the hive isn't responsible--you and your doctors are.

That said, also ask them about Beta-Val. (The lotion, not the ointment.)

For what it's worth, I've had these chronic skin conditions for years. My Elocon (skin ointment for my eyelids, ears, forehead and nose) and Beta Val are just therapies that keep it at bay--they're not going to cure it. But it only flares up about bi-weekly or monthly for me, depending on weather and such, so it's okay to just manage it, instead of trying to cure it. Don't expect to necessarily be able to cure this, though.
posted by disillusioned at 12:33 PM on January 13, 2009

Not certain if you have tried this already, but thought it was worth mentioning- especially since it is a far less serious possibility than psoriasis.

I had incredibly bad dandruff for 2-3 years, worse in the winter, tried the Neutrogena and Nizoral mentioned above in addition to a few other products. What finally helped was salon-grade super moisturizing shampoo and conditioner (FWIW, at any price level separate products are preferable to a 2-in-1). Using the Nizoral and other products had exacerbated the problem to such a degree that I ended up with a red rashy scaly scalp far worse than the root problem (pun unintended). If you have curly or coarse hair, dry scalp is far more common than it would be otherwise.

Perhaps a salon would be willing to sell or give you sample sizes, I know their products are expensive and I see you have dropped a chunk of change already.

Not much help on the dermatologist front. From a former dandruff sufferer, here's to hoping you'll be wearing lots of black shirts in the near future.
posted by variella at 1:00 PM on January 13, 2009

I have a scalp condition that could be psoriasis or something else, depending on whom you ask (I've given up on dermatologists a long time ago...). I've had it pretty much under control for the past years, although it does flare up once in a while. Here is how I manage it:

-No coffee (and careful about "acid" food)
-Keep the hair short
-No shampoo (or conditionners, or gels, or...)! Nothing which contains a likely irritant (especially fragrance). The only exception is a natural shampoo with stinging nettle in it, and then used very sparingly. There used to be something made by Urtekram in Danemark, but I don't think you can find it in North America. It's amazing how clean you can keep things using only water (then again, I don't work in a coal mine...)
-A cortisone lotion or ointment when things get out of hand.
posted by bluefrog at 1:18 PM on January 13, 2009

I have psoriasis (graded as severe), and have tussled with scalp psoriasis on and off for years. I've found that the dandruff shampoos are worthless, as are the coal tar shampoos (and their Neutrogena variations).

The Clobex shampoo is great for managing outbreaks, though the foams and mousses have been ineffective for me.

I do use the Clobex shampoo to help get an outbreak under control - but the biggest help for me was the switch to hippy shampoo. Go to your health food grocery store and look at their shampoos. Find the shampoo bottles labeled both “Organic” and “Biodegradable”. Pick your scent (preferably the least scented of the bunch) and buy it (along with its conditioner counter-part, if you need it). Get rid of all the old shampoo you have, and if you’re as lucky as I am you’ll start seeing results pretty darn quick – though you may want to start with the Clobex if you’re in the middle of a flare up. Since switching to hippy shampoos, my flare-ups are far less frequent and significantly less intense.

Something I’ve noticed about psoriasis (no matter its location) is that responses to treatment are extremely varied. A two day course of Clobex can remove all traces of flare-ups for some people, and bottles of the stuff won’t help others. Doctors and dermatologists that are proficient at treating any form of psoriasis are few and far between. It took me ten years to find a dermatologist that had any success treating my psoriasis at all. I’m in Portland Oregon – which isn’t a huge city – but it’s not tiny either and there are plenty of dermatologists.

Good luck!
posted by terpia at 1:24 PM on January 13, 2009

It's a very low tech solution, but Tea Tree Oil Shampoo does wonders for the scalp. Just make sure you get one that doesn't contain sodium lauryl sulfate. Tea Tree Oil is naturally antifungal and cleared up my scalp even better than the Derma-Smooth my doctor gave me. Seriously, it's great stuff. Good luck.
posted by TNOTGILL at 1:25 PM on January 13, 2009 [1 favorite]

I had the exact same experience, but the itching/flaking/scaling is limited to a small part of the back of my scalp. I found that tar shampoos, Nizoral, etc. were of no help, and actually made the flaking worse. The last dermatologist I saw diagnosed scalp psoriasis and gave me a corticosteroid called Fluocinolone Acetonide. I got a solution in an applicator tip bottle. It was a lifesaver. After about 1.5 weeks of regular usage (2-3x per day) the itching stopped, the flaking stopped, and the thick scales were gone. I used for another week or so just to make sure and it stayed gone for about a year. I have recently started using it again because it came back; hopefully it will go away again. I can't say for sure that psoriasis was the right diagnosis, but I can say that the Fluocinolone Acetonide was the right medication for me. You might want to try the corticosteroid you were given, or if your problem is localized to small areas of the scalp, ask if you can change the steroid to a solution in an applicator tip bottle.

I also use a gentle shampoo and a moisturizing conditioner because it seems to help. I like the suggestions above for using high quality moisturizing stuff, hippy shampoo, or none at all. A psoriasis-specific shampoo will help break up the scales but make the flaking much much worse.
posted by ohio at 2:32 PM on January 13, 2009 [1 favorite]

terpia has it, really. If it is psoriasis, the responses to treatment vary from person-to-person. I had/have severe scalp psoriasis for roughly five years, and none of the coal tar/tea tree/clobetasol/moisturizing shampoo solutions ever worked for me. Not even a little bit.

I got on Enbrel (which is probably something you'd have to show more psoriasis and probably some arthritis to get on) and within two weeks the scalp psoriasis was GONE. Can't say the same for the other patches on my hands and trunk, but the scalp was cleared awful quick.

That's the only thing that's come remotely close to working for me. By the way, if this is the onset of psoriasis, a couple notes:

1) Expect it to get worse and appear in more locations than just your head
2) Moisturizer is your friend
3) Be very very sensitive listening to your body if and when psoriatic arthritis starts to manifest. There's degeneracy in your joints that's possible if you don't catch it early enough (I'll never be able to bend the top joint on my left thumb again, even though the Enbrel has my arthritis backed down to a very satisfying degree).
4) On that note, getting referrals to doctors that will treat your symptoms (Derm for the skin, Rheumatologist for arthritis) is critical to getting to a medicine strong enough to work. Get on step one, fail. Go to step two, fail. Etc. Keep pressing for that next step if it's not working.

Good luck. Hope it's not psoriasis.
posted by GamblingBlues at 2:35 PM on January 13, 2009

I don't have recent experience, but 7-8 years ago I had what was diagnosed as scalp psoriasis for a few years. It then went away spontaneously, which I've read does happen sometimes (and often comes back but mine hasn't yet). The dermatologist prescribed Dovonex scalp solution (not oral meds). The description given by disillusioned was exactly the same as I experienced with Dovonex. But it did work, and after the initial couple of weeks, I only had to use it a few times a week, not daily.

If you don't have severe psoriasis, be careful about Enbrel - it killed the son-in-law of a friend.
posted by onemorething at 3:59 PM on January 13, 2009

TNOTGILL mentioned tea tree oil shampoo. I have been using tea tree oil for a variety of things and in a variety of products (including shampoo, which unfortunately did nothing for me) over the years until *bang* I got over sensitive for it all of a sudden. Rash. Itch.
Makes me think that one should tread very carefully when using that stuff, especially when something else is clearly not entirely okay.
posted by Namlit at 4:09 PM on January 13, 2009

nthing what a few people up there said. if it's psoriasis, the medicines that work for us might not work for you.

(t-gel n'at definitely do NOT work and make you smell like a wet dog. ew.)

that said, i've been treating mine for 14 years, it's mild-moderate though, so i've never tried any of the serious treatments, but i've gone through countless prescriptions trying to find what works the best. or works at all.

currently (for the past 3-4 years) i've been using betamethasone dipropionate. it's wonderful because it comes in a lotion and an ointment and i can use the ointment for my skin and the lotion for my scalp. like someone above said, it's in a vehicle of alcohol, so it will burn like holy hell for a minute, but usually only after i've been scratching.

(typing all of this out is making me very itchy)

i've also tried the olux and it didn't work for me and was 30$ more (my betamethasone is a 10$ copay).

also psoriasis responds REALLY well to sunlight and stress makes me very obviously flare up.

if you have lots of sampes i'd try them out for a week or two before swearing off of something. typically if somethings going to work for me, it works in that time period.

i also use regular shampoos, not sure if it would help if i switched, but i'm far too lazy/attached to my current stuff.

not sure why derms always disagree, i've only seen 3 in all of my time, but everytime i switched it was because what they were prescribing wasn't working so i WANTED them to disagree with the previous doctor.

good luck!
posted by thisisnotkatrina at 4:48 PM on January 13, 2009

Agreeing with thisisnotkatrina about the sun. The psoriasis on the back of my head, along the hairline, went away when I started walking for fitness outside with my hair tied up in a ponytail. I don't know if that's what actually caused it to spontaneously go away - maybe it was coincidence.
posted by onemorething at 6:37 PM on January 13, 2009

Honestly I don't think it actually matters what the actual diagnosis is...all the shampoos and topicals you mentioned (all of which I have used at some point or another) will treat scalp psoriasis, dandruff, sebhorric dermatitis, etc. a.k.a. itchy, scaly scallp. Try the shampoos. Ask your Doc if they have any Clobex coupons - I got a card that covered the cost of my first bottle.
posted by radioamy at 7:41 PM on January 13, 2009

I haven't been to a dermatologist in about 15 years, but the two I went to couldn't agree on whether I have psoriasis, seborrheic dermatitis, or ezcema (or probably a combination). At the time, I was being treated for other conditions, but the doctors ended up giving me prescriptions for a few medicines to tackle those three skin conditions. I can't remember what they were, and this was a while ago.. none of the medications that you were advised to take were offered to me, so I suppose most of them were not popularly prescribed (or existed?). If I recall correctly, one was a soap (not for the scalp) and one was a prescription tar shampoo. I think, at the time, Neutragena's T-Gel shampoo wasn't available OTC. Or didn't exist (I was 12; I don't remember!). Before that time, I had just been using Head & Shoulders, which, of course, did nothing at all. The tar shampoo was the first thing that actually worked.

I just point this out because everyone says the T-Gel shampoos don't work. My psoriasis (or whatever it is) is severe and the scalp area has never been in remission. It flares up every few months, and, if I don't treat it with the Neutrogena T-Gel (or I've been using Walgreen's store brand), it becomes unmanageable. The shampoo seems to kind of slough the mountainous build-up of scaley stuff away.. So, whatever I have, I've had good luck with that shampoo. I haven't noticed any side effects (you just don't want to get it in your eyes!), and it's fairly cheap. You can use it as your main shampoo really. I use it a few times a week. I have to take an oral corticosteroid for an endocrine condition, and you're definitely right to be wary of the side effects, there.
posted by Mael Oui at 8:02 PM on January 13, 2009

I've had scalp psoriasis since I was 17 or so; I'm 33 now. I've had to try a variety of things over the years to deal with it.

There is something called Baker's P&S solution which I sometimes apply to my scalp at night. This helps loosen and remove the scales. Then wash out in the morning with T-Sal shampoo (and some days Avalon Organics tea tree oil shampoo). Then I follow up with Olux foam. Seems to keep things at bay most of the time.

In really dry weather, the condition seems to worsen for me (more itching, mainly).

I notice that the patches seem to "travel" around my scalp at times. It will get better or clear up completely in one area, then flare up in another.

I took methotrexate for awhile, as I actually have the double whammy of psoriatic arthritis and that's one of the treatments for it. Taking this cleared up my psoriasis completely. However, it has its drawbacks -- very rough on the liver, so you can't drink while taking it.
posted by medeine at 9:50 AM on January 14, 2009

I'm kinda surprised to see so little mention of diet vs. psoriasis. I was just commenting on another old psoriasis thread I found by accident. I looked for more threads and there are a number of psoriasis questions on MeFi, and I've still seen very little mention of diet.

Backstory: At the urgings of my sweet grandmother, I went to a kooky new-agey holistic healing person to cure my psoriasis. This person told me to do some stuff, and I thought "whatever", tried it for a few months and fuck me it worked. Better than both Dovonex and PUVA therapy.

This is what she told me, this is what I tried, and it worked.

No citrus, no gluten. This means no oranges. No orange juice. No bread or any breadlike items. Including cakes, hot dogs, hamburgers, all that. All of it needs to go. This is the most important part. It is a tall order that I am very serious about.

Very little milk. No cheese except "fresh cheese" like cream cheese, cottage cheese. No red wine or red meat. Avoid onion, garlic. Very spicy stuff not so great but still OK.

Instead, eat almost anything else. Lots of chicken, fish, vegetables, white wine, apples, some skyr and yogurt, some pasta, lots of rice, potatoes are cool. Take lots of good oils. Butter was OK I think, prefer olive oil, no 'synthetic' fats like margarine. As little sugar as possible, substitute green tea or tea for coffee as much as possible.

The trick:
Don't stop eating the bad things ... instead plan how you can eat only the good things.
posted by krilli at 12:45 PM on September 16, 2009 [5 favorites]

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