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Scalp psoriasis is really getting me down.

(50 Posts)
OhYouBadBadKitten Tue 09-Dec-14 08:55:04

I'm normally pretty sanguine about my psoriasis, I've had it most of my life. My scalp psoriasis is really getting to me at present.

I'm on steroid shampoo from the derm. I'm also on steroids from the rheumy. It just wont clear. Every time I try combing it out, no matter how gently and with cocois I'm losing huge tufts of hair. I already have fine hair. Now I have bald patches which you can clearly see the psoriasis through and it looks grim.

I've had kids I work with being nasty about it. Really really horrible. I also mentioned to a friend that it was getting to me. Her comment was 'oh yes, when the wind blows I can see'. So now I know that I cant even pretend to myself that no one else is noticing sad I really could cry.

I saw my gp in part to talk about it but unfortunately she felt that another issue was far more pressing and i need to deal with that. Getting another appointment before Christmas is going to be very challenging but also I'm getting fed up with the issues caused by the medication I'm given. I'm getting into right old pickles with them.

Does any one have any ideas of supplements or anything else I can try please - both for the psoriasis and also for the going bald bit? I dont want bald patches sad

Littleturkish Tue 09-Dec-14 09:06:35

I use NIOXIN for my very flakey psoriasis-like scalp (no formal diagnosis, but my DH has very bad psoriasis and has had light therapy in the past, so I do know a bit about it).

Aveda used to work but then stopped. NIOXIN is brilliant, it also is recommended for thickening hair, and I've certainly noticed my hair becoming thicker and lots of new re growth since using it.

I really hope it helps for you- try the sample trial pack first. You have to wash, condition and then use a spray.

Littleturkish Tue 09-Dec-14 09:08:01

I didn't buy it for the thickening, btw, just the sensitive scalp. My sister does use it for the thickening and after two weeks she's noticed a halo of baby hair re growth, but obviously everyone has different experiences.

RyanAirVeteran Tue 09-Dec-14 09:09:50

Nioxin is the mutts nuts, you can buy it in litre bottles on Amazon, a bit eep to lay out that much money in one go on shampoo but worth every penny. IMO

OhYouBadBadKitten Tue 09-Dec-14 09:10:23

Where do you buy it from Littleturkish?

OhYouBadBadKitten Tue 09-Dec-14 09:11:48

x-post. I'll definitely look into that. I guess I'd need to continue with the steroid shampoo too for the moment. if I just stop I'll get a rebound effect. Thanks!

Superworm Tue 09-Dec-14 09:20:01

I have the same thing and have had it 20 years. I find my iron levels make a big difference to my psoriasis (there evidence for this too). May be get your levels checked?

Superworm Tue 09-Dec-14 09:22:19

And sorry people are commenting on it, it's just so rude. Its a huge source if paranoia for me so I really feel for you

yellowsnownoteatwillyou Tue 09-Dec-14 09:24:57

Have you tried acupuncture? A friend gets it done once a year and swears by it.

CharlieSierra Tue 09-Dec-14 09:43:33

Have you looked at diet? I started eating Paleo earlier this year and it's had a fantastic effect on my psoriasis and arthritis. My son has ankylosing spondilitis and it's working wonders for him too.

GilbertBlytheWouldGiftIt Tue 09-Dec-14 09:48:22

I only have it mildly but have found that this shampoo works wonders:

Best of luck with finding something that helps.

RoseberryTopping Tue 09-Dec-14 09:59:08

DP gets awful psoriasis, though not too bad on his head and he's a baldy anyway so no hiding it! He uses coconut oil to moisturise and has had to cut out a lot of dairy to keep it under control. He also takes fish oil supplements which seems to help.

Sorry you're getting horrible comments about it though sad I don't think people realise how hard it can be to live with, you're already self conscious enough without comments being made.

batteryhen Tue 09-Dec-14 10:28:47

I suffer too. Have you tried aloe Vera juice too? Tastes awful but some do have success with it . Good luck

Booboostoo Tue 09-Dec-14 10:34:28

I am sorry you're having such a tough time and people are being so insensitive.

I don't have any experience of psoriasis but this hair brush is wonderfully mild and might help?

OhYouBadBadKitten Tue 09-Dec-14 11:39:54

I think we might have a tangle teezer somewhere. It might be less pully than my current brush.

I've not tried many of these things, I did try turmeric and ginger for a while. Also fish oil supplements but they seem to give me tummy ache sad I've just checked whether there are any interactions between aloe vera and meds that I take and it seems to be ok, so I can try that smile

I could certainly look at diet. Paleo would be a big shift for me as I don't normally eat much meat - we eat a lot of veggie meals. I do try to include oily fish once or twice a week. So maybe I am short on iron. I did wonder about this, perhaps I should be asking for blood tests. I've got a phone call appt with my gp next week.

People are rubbish sometimes arent they. You want friends to help you pretend its all fine, not confirm your worst fears.

PuppyMonkey Tue 09-Dec-14 11:52:25

I've suffered on and off for about 30 years too. The one thing I have found is that I discover a product that works brilliantly, but after a few years it simply stops working - no idea what that's all about hmm

Philip Kingsley Itchy Flaky stuff as above has been working fine for a year or so, but sure enough I'm finding it's starting to come back now right on cue. Must be due to try something else...

I've tried:

Tea tree stuff
Oilatum scakp treatment
Aloe vera stuff (am alergic)

Might try the Nioxin then unless any other suggestions come up on this thread..

GoogleyEyes Tue 09-Dec-14 11:56:37

Have you tried the polytar bath stuff? For some reason it seems to work better than the shampoo, and it does the rest of you good, too.

Cutting out dairy made a huge difference for me, so it's worth thinking about diet, too.

I hope you find something that works.

OhYouBadBadKitten Tue 09-Dec-14 12:03:44

polytar has been a huge staple of mine in the past. Can you still get it?

I do need to be very careful with cutting out food at the moment as my bmi has recently dropped way too low. GP is investigating this. At the moment I'm all about trying to get calories in. (if this outs me please pretend you've not noticed!)

starsandunicorns Tue 09-Dec-14 12:22:06

I have scabs to its not posirs say the gps i have a steroid liquid i bung on which helps but it never goes away completly i wear hairbands to cover them and my thining hair and bald patch i use baby shampoo and rarely go out without a hairband now

Slowdownsally Tue 09-Dec-14 12:29:22

Calcipotriol lotion and prescription nizoral works for me.

I also take flax seed oil capsules and have upped my vit d tablets too. The central heating is killing my skin at the moment.

I totally sympathise with the way you feel - I hate people noticing mine and cover up, including hats. Hard to ignore the great flakes on my face right now or the spots from over moisturising.

Psoriasis is an evil fucker.

RockinD Tue 09-Dec-14 12:53:33

Have you considered dumping all the �medicated� products and the creams and ointments from the doctor? I know it sounds a bit drastic, but cutting out SLS and parabens, coupled with bringing vitamin B12 and vitamin D up to optimum levels, has banished all my psoriasis, which had previously resisted everything the GP could throw at it.

OhYouBadBadKitten Tue 09-Dec-14 12:55:09

thats rough stars sad You too slowdown. Its horrible that we have to go through this. Its not something that people feel sympathetic at I feel, they just think 'yuk'.

I dont mind it at all on the rest of my body, except when it goes truely bananas. Its just scalp and face stuff I really hate. My face is ok though at the moment - just a scabby eyebrow!

Calcipotriol does bugger all for me. the etrivex shampoo was working but when it came back it seems much less effective.

I've got some flax seed I think somewhere I could try that.

OhYouBadBadKitten Tue 09-Dec-14 12:58:42

Rockin - thats mostly how I 'manage it'. I only treat it now if its gone really acute across my body, or if its building up on my scalp. I should look at my vitamin levels though.

I used a really nice sls/paraben free shampoo for several months, which smelled lovely and was kind to my hair but it didnt slow down the psoriasis at all.

PotOfYoghurt Tue 09-Dec-14 13:03:07

There's a Kerastase shampoo Valle Bio-Recharge which has calmed my scalp down a lot.

VenusRising Tue 09-Dec-14 13:05:06

My DH has terrible psoriasis and on his scalp and face as well as elbows knees and all over actually now I think about it. Pustular, and discoid.
Sympathies badkitten, it's confidence destroying.

He uses Dithro creme on perscription from the GP, clears it up in three weeks.
It's a time commitment though as you have to out it on for an hour before showering, and it stains.

He used cocodis for ages, but it just stank (and stained) and didn't do anything. Wrights coal tar soap is too drying and he now uses a sls paraben free shower gel from dr organcis, alternating with aqueous creme or silcocks base and finishing up with emulsifying creme for a tiny bit of moisturising.
Vaseline works also for moisture. He takes high EPA oils, and b vitamins.

Get DITHRO from your GP, insist upon it, it works.

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