Posted Wed 16 May 2018 9.06pm by Margaret W
I have been diagnosed with phoriasis five months ago particularly bad on my scalp. It is incredibly itchy and flaky and is driving me mad. I can deal with the odd patch on my body but the scalp is a different matter. My hair is also thinning. I am being referred to a dermatologist.
I would be grateful to hear of anyone with similar problems
Posted Mon 21 May 2018 9.01am by Whenafishsings
I suffer from psoriasis on my scalp like you it drives me insane, I have had this now for years, the one thing I have found that keeps it at bay for me is dying my hair colour is optional as at the moment im purple, I don't know about you but do you fine certain shampoos can make it worse??
Posted Mon 21 May 2018 10.38am by Bumblebee
I have developed scalp psoriasis aged 59 out of the blue. I had never heard of it before and it is severe and long lasting. My GP was clueless and noting worked, by the time I saw a consultant the condition was over my entire scalp, I have lost 50%of my hair on the top of my head and 80% of my fringe. I have just joined this forum, I had severe reactions to ciclisporin and it was stopped after 3 weeks. I am about 5 weeks into an alternative drug but it is not helping, in fact it is making it worse. I am despairing of anything helping. I hope you have better results than me.
Posted Mon 21 May 2018 10.54am by Margaret W
Thank you both for replying. I wonder why it suddenly comes on , never had skin problems before. I am seeing a consultant privately on 30th and really hoping she can come up with some miracle cure. I have also lost 50% of my hair on top and my fringe is getting thinner by the day. So upsetting. The small patches on my body have cleared up.
Posted Mon 21 May 2018 6.45pm by Margaret W
Hi Bumblebee - I just wondered how long you have had it and whether you had it on any other part of the body. I am using Calcipotriol on my scalp - is this what you had a bad reaction to and if so what sort of reaction.
Posted Mon 21 May 2018 7.35pm by Tps
I’m 52 and have had scalp psoriasis for at least 42 of them! Best thing for me is Diprosalic scalp lotion - it clears the scaly bits and then works on the red skin !
Worth a try - good luck
Posted Mon 21 May 2018 7.45pm by Margaret W
Gosh - what a long time you have had it. Does it ever go away or have you got it constantly?
Posted Mon 21 May 2018 7.54pm by Bumblebee
Hi Margaret W. I was diagnosed by myself, it started with a fingernail about 18months ago but my GP had never known about pitted nails and psoriasis so treated it for a fungal nail infection. The scalp started last Autumn and I was given steroid mouse and thick cream to apply but I had long fine hair but masses of it so getting to the skin of the scalp was difficult and it did nothing to help. A referral was made to a dermatologist after I did enough research to tell my GP I needed a referral. With every passing week it got worse and when I saw a consultant my entire scalp was covered in thick plaques and my hair was coming out in 10-15 hairs on each plaque. The drug I reacted to was ciclisporin, it am now on acitretin and it is showing no signs of helping, I have just developed large patches on my arms and legs since seeing the dermatologist and starting on acitretin. I am currently driven insame with itching all over and it is on my face. Death does not seem an unattractive option to me right now so I think I will ask for an earlier review than the three months given to me. I am not aware of Calcipitorol and would love to know of it is helping you. I hope you get some relief
Posted Mon 21 May 2018 8.08pm by Tps
Stay positive Bumblebee ! We all know how you feel 😬
There’s a new drug ‘clear skin’ by Novartis
It’s for severe plaque, scalp and psoriatic arthritis - it’s a new biological inhibitor - only available via dermatologists and if it is funded - but results are amazing 👍
Posted Mon 21 May 2018 8.10pm by Tps
2 weeks in the sunshine normally does it !!
Posted Mon 21 May 2018 8.31pm by Margaret W
I have been told to keep my head out of the sun! I have a friend who has severe phoriasis on her body and the sun really does help her.
I will let you know if my consultant comes up with anything on 30th.
Bumblebee - stay positive.
I use Dovobet gel on my body and my patches have cleared. I also moisturise with Cetraben daily
Posted Tue 22 May 2018 11.09am by OhNo_NotAgain?
Margaret - depending on the preparation/medications you are using the advice will be to stay out of the sun. Some increase your sensitivity to direct sunlight in a bad way. I suggest to ask your consultant about this specific issue when you see them.
I don't know the correct advice if you are using just Calcipotriol without steroid.
Posted Wed 23 May 2018 6.53pm by MrsDale
I've had scalp psoriasis for around 20 years, have tried various treatments without success.
I've ordered some Loyon cream as someone mentioned it in the forums. I am also going to try Vosene shampoo (I don't use any shampoo at the moment).
My GP could not care less so I am saving up to see a private Dermatologist and hopefully will be able to have some lightbox therapy.
My new problem is a very hot patch of skin at the nape of my neck...it is bright red and is starting to go scaly. I've tried E45, Sudocrem, olive oil, coconut oil and cocoa butter but nothing helps. A cold flannel placed over it is soothing though.
Has anyone else suffered with thus and could you recommend anything to relieve the burning/scaling?
Posted Wed 23 May 2018 9.49pm by Whenafishsings
MrsDale I get those horrible red patches at the nape of the neck, the only thing I found to work for about 5 weeks is to dye my hair, I have had psoriasis for nearly 20 been backwards and forward to the doc to derm and the only thing I found that works is to dye my hair it last for about 5 weeks, but it defo make it a whole lot better
Posted Wed 23 May 2018 10.19pm by Margaret W
Mrs Dale - sorry to hear your story. I am new to this scalp phoriasis which started five months ago. I have it all over my scalp and one of the worst places is the nape of the neck. I use Calcipotriol on it and although it briefly stings like mad it definitely helps. I hope yours improves very soon
Posted Thu 24 May 2018 9.20am by MrsDale
Thank you both.
Hair dye is not an option for me as my scalp is cracked and bleeding, I would not be able to face having dye put on it!
Margaret, I'm sorry to hear you are suffering. I haven't heard of Calcipotriol but am glad it is helping you.
Posted Thu 24 May 2018 1.48pm by DanE
Another recommendation for ginger shampoo: I've tried lots of different shampoos - polytar, alphosyl and nizoral mainly - with varying success. But a short assistant at Boots recommended Bodyshop ginger shampoo and it is a revelation. Cheaper and smells nicer, and has cleared up my scalp incredibly effectively. My only concern is that other treatments can lose effectiveness over time, but so far so good.
Posted Thu 24 May 2018 2.12pm by MrsDale
Thanks that sounds like another option to try, I'll pick some up at the weekend.
Posted Sat 26 May 2018 1.43pm by Avesty
I has severe scalp psoriasis a while back, and similarly I lost half go my hair, i started Methotrexate and that has cleared it now but at the time i found it difficult and incredibly embarrassing.
I found the best thing that worked for me was to put coconut oil in my hair, and particularly the scalp, always in the bath as the warmth opens your hair follicles and wet hair makes it easier to apply, then wrap it in a warm towel and sleep with it over night and wash it in the morning.
It is genuinely the only thing that bought me any relief and eased my scalp, plus using coal tar shampoos and medicated treatments has dried my hair out so much I couldn't brush it without ripping more out, so it really helped with that too.
Its definitely no miracle cure, but as least gives relief from the itching and conditions the hair that you do have, and also makes the plaques softer so they are to quite so irritated,
I hope this helps!
Posted Sat 26 May 2018 1.53pm by Margaret W
Thank you for sharing your experiences. I will try coconut oil as like you I find the prescribed medication and shampoos very drying. Has the phoriasis hone completed and has your hair grown back?
Posted Sat 26 May 2018 3.48pm by Avesty
At the moment I still have psoriasis on my torso, however other than slight redness my scalp is completely clear, and I'm happy to say my hair has now grown back.
This is definitely due to the medications I'm on, however i genuinely think that the coconut oil went a long way to helping my scalp heal. Now that my hair has grown back its thicker and healthier than before, so it definitely will get better.
I hope things get better for you soon, and don't give up!
Posted Mon 28 May 2018 3.39am by January
My tips for healing, and it goes fast and my scalp was covered all the way in to my ears...!
I still can get some "monsters" in my scalp when/if I get sick or get a cold, but they will never break out.( I think my immune system is much better after this diet)
Go free from this stuff as much as you can:
Dairy from Animals
Try to get as Vegan as you can, AND you will see your body healing !
And use products without any strange chemicals, or perfume get one with good pH( myself I only use really good quality coconut-oil as hair mask and for my body)
Alepo soap is also something to try*
Posted Mon 28 May 2018 4.23pm by Bumblebee
Thanks for the advice and sharing your experience. I have now ordered coconut oil and received it today, I have been dairy free for some time now and I eat very little meat anyway. I have decided that I am following a diet to reduce inflammation in the body but am not going to eliminate nightshade veg as well. The acitretin caused an explosion of psoriasis on my legs and body just after I started on it and there are no signs of it healing. The condition is terrible and I am horrified that I never knew anything about it or how so many people suffer so much. After lots of reading I am feeling more optimistic that I can use food and supplements to help my body to heal and reduce reliance on medications.
Posted Mon 28 May 2018 6.41pm by Bumblebee
Thanks for your helpful advice. My scalp psoriasis also covered my entire scalp and top of my forehead and ears inside and out. I have finalk6 understood that this psoriasis has been with me for som3 years but I did not know what it was until it affected my scalp and became severe. I am grateful for your advice. Good luck in staying well.
Posted Mon 28 May 2018 7.36pm by Margaret W
Hi everyone, after reading about the coconut oil I bought some yesterday and went to bed with it on overnight.
My scalp has been far less itchy today and the plaques are much softer and lifting off. My hair is still coming out though.
I have not used any of the prescribed medications today and will try and do without until I see the consultant this Wednesday. I find they are so harsh and dry out the scalp and hair.
Will let you know how Wednesday goes
Posted Thu 31 May 2018 4.57pm by Jean B
Thanks everyone for this useful discussion!
I aim to try coconut oil on my scalp too.
Just a warning though: I tried coconut oil on my face for the psoriasis there. I put it around my eyes (as there was psoriasis there) and it got into one of my eyes overnight. I developed an infection in that eye.
Posted Thu 31 May 2018 5.32pm by Bumblebee
Coconut oil did not work for me but great results achieved overnight on arms and legs using Forever Aloe Vera Jelly followed by Forever Bee Propropils Cream. I am suffering terrible insomnia right now due to treatment and did not leave coconut oil in overnight so may not be a fair assessment.
Posted Thu 31 May 2018 6.03pm by Margaret W
I have used coconut oil for two nights leaving it on overnight. Very good results and a lot of the plaques have gone.
I saw a consultant dermatologist yesterday and she confirmed that I have scalp phoriasis. She has prescribed a treatment to put on every night for a week and also a special shampoo to wash it off. I can't give you the name yet as prescription not ready.
In the meantime I will continue with coconut oil.
Posted Fri 1 Jun 2018 2.28pm by beebo
Just new to this site so excuse if any mistakes. I have scalp psoriasis also and like a few others, dying my hair seems to bring some relief but now im trying baby shampoo for cradle cap...sounds weird but my scalp doesnt seem to itch as much. I hate putting oils and lotions on overnight as im in a kinda new relationship so it feels embarrassing...i do it occasionally tho. Its the picking im having a problem with...i suffer from anxiety so you can imagine the state of my scalp! My body isnt too bad at the moment as im using 'Childs Farm' sensitive baby moisturiser (from supermarkets and boots) and its all but cleared up. I have tried their shampoo but not much success so thought id work through the baby isle as ive had every prescription and non have worked. Ideally id love to shave all my hair off and slather my scalp with whatever i can get to keep it at bay...not really feesable tho. Ive had this condition since school..im well into my 50s now and although there have been time that its dissapeared itz never lasted long. Not sure if the menopause has caused this massive flare up as i cant seem to control the rate of which it is spreading over my scalp so along with every baby product i can use im going to start taking vitamin D suppliment. I do eat a healthy diet and exercise so we will wait and see what the results are. Just wish there was a magic cure.
Posted Mon 4 Jun 2018 5.40pm by SS1980
Bumblebee - have you tried Enstilar foam? I’m having great results with it
Posted Mon 4 Jun 2018 6.38pm by Margaret W
Posted Mon 4 Jun 2018 7.07pm by SS1980
Posted Tue 5 Jun 2018 7.40am by beebo
Thanks for that...il give it a go. X
Posted Tue 5 Jun 2018 9.52am by Bumblebee
Thanks for this tip, I’ll give it a go.
Posted Tue 5 Jun 2018 10.52pm by TraceyM
DiproSalic Scalp Application is worth a try, it’s amazing and stopped the itching. You can only get it from the GP
Posted Wed 13 Jun 2018 3.21am by Debra B
How does the plaques lift off? I end up picking them off & my Dr said that makes it worse. How do they just come off on their own?. Debra
Posted Thu 14 Jun 2018 2.50am by Debra B
I also have it on my scalp. Not anywhere on my body. But it is awful. I am looking for help constantly. Medication makes my hair so so so greasy. It’s embarr. But this medication work better than most
Posted Thu 14 Jun 2018 7.48am by Dor2018
I also have had scalp psoriasis for years. About ten years ago it got really bad - completely covered in scales and hair falling out. I was told I had a special type of psoriasis called tinea amiantacea - apparently quite rare but is actually linked with bacterial / fungal infection and needs to be treated differently so may be worth asking your derm about it if the symptoms fit - https://www.dermnetnz.org/topics/pityriasis-amiantacea/ I used cocois ointment in my hair overnight to loosen the scales then an antibacterial shampoo called Ceanel which cleared it up brilliantly and kept things at bay, Unfortunately the shampoo has recently gone out of stock though and it's starting to get worse again - has anyone else been diagnosed with this condition and anyone who was using Ceanel know of an alternative anti microbial/anti fungal shampoo? Having googled it there are lots of shampoos out there for dogs/cats but not for humans!
Posted Thu 14 Jun 2018 12.45pm by OhNo_NotAgain?
I emailed the manufacturers of Ceanal yesterday and received a prompt reply. They tell me that they are having a problem to source some of the ingredients that go into Ceanal, so it is temporarily out-of-production. They do not know when they will be able to resume production, but it does not seem that it is permanently discontinued. I hjave never used it myself, but I was interested to try it.
With regards to an alternative with any similar properties, perhaps your local Pharmacist can advise - perhaps the pharmacist who used to dispense your Ceanal?
There is a shampoo called Dermax, that contains benzalkonium chloride, which is anti-microbial, but not anti-fungal. Nizoral is anti-fungal.
Cetrimide is one of the ingredients of Ceanal - and there is a Cetrimide shampoo available.
I see that the other main ingredient of Ceanal is undecenoic acid - I cannot think or discover where, but I have definitley seen that on the ingredient list of another preparation somewhere.
Posted Thu 14 Jun 2018 2.10pm by Dor2018
Thanks for your very helpful reply - I have ordered some dermax and will see how I get on. I tried to find centrimide shampoo too but it didn't seem to be for sale in the uk unfortunately (unless you've seen it?). I have asked the derm and pharmacy advice and they said there is no alternative to Ceanel apart from capasal (tar based) which is frustrating and I'm hoping it will be back in production asap.
Posted Thu 14 Jun 2018 2.40pm by Dor2018
Just to update I seem to have found an alternative option on a Spanish site which ships to uk and contains both the main Ceanel ingredients - it's here for anyone interested -
Posted Sat 16 Jun 2018 7pm by Lancs4
Hi guys im new here, developed psoarasis on my body about 2 years ago but it has successfully cleared with enstillar foam 🤞however about a month ago it developed on my scalp! Tgel has worked wonders. I was just wondering if when and if it clears can i stop using the t gel and use normal shampoo? Thanks :)
Posted Sat 16 Jun 2018 11.18pm by Josette
I'm reluctant to suggest the lotion that worked for me in case it gives some of you false hope but I've been using Loyon lotion for about 6 months now along with Tgel shampoo and my scalp psoriasis has 90 percent improved after 15 years of scales covering the whole of my scalp. It might be worth a try. No side effects so a plus there. Might be worth giving it a try. Tina
Posted Thu 21 Jun 2018 8.24am by Margaret W
We all seem to know that our immune system is working overtime and producing too many cells which create the plaques on the scalp, but has anyone had a blood test to find out why?
I would have thought a blood test would have been the first thing to do to rule out thyroid problems etc.
I have never been offered one
Posted Thu 21 Jun 2018 6.50pm by Jean B
No, I haven't been offered a blood test either, by doctors or dermatologists. Would a blood test be the procedure offered in any other country for psoriasis?
Posted Thu 21 Jun 2018 7.31pm by OhNo_NotAgain?
I have read a few articles stating that "sporadic" cases of association between psoriasis and certain types of thyroid problem have been reported. However there are also recent papers saying that no link can be found.
I have been treated for psoriasis in several countries at various times over the past 37 years, including the UK, and never had a blood test suggested because of my psoriasis.
Posted Fri 22 Jun 2018 4.24am by Frank
I have been having psoriasis pretty much every where for the last couple of years, it goes up and down, but I noticed that it gets much worst when my diet gets out of the line.
I am a pt so I keep my diet very clean, lots of vegetables and lean protein throughout the year, My psoriases flairs up during the cold and dry seasons and it gets very bad on my scalp.Very bad!
Saying that few months ago I when to see another specialist and I started a treatment for my scalp that has been working very well ( if I can keep my diet clean )
I apply at nigh a lotion Custom made with 1% LPC in Cethaphil before bed.
in the morning i wash it with with Clobex shampoo ( clobetasol proprionate 500 micr/ml
the I apply for the day Daivobet 50/500 gel for the day.
the second day is similar with different shampoo and different daily gel.
It's a bit of work but everything was gone in a week, it does come back though , no I do the treatment every 2 days.
Still haven't solved my skin though.
I have been asked a blood test (here in Sydney) mainly to check hormonal imbalances and urine acid level.
Posted Fri 12 Oct 2018 4.49pm by Margaret W
I have had scalp phoriasis since February with very little problem on my body. I am about to go on Methotrexate having had clear blood tests.
However about a week ago I have developed a rash all over my body. Shortly before the rash appeared I had the flu vaccination for the very first time.
After researching on the internet it would appear that this years vaccination for the over 65’s boosts the immune system which is exactly what phoriasis sufferers don’t want!! I am 67 and if this isthe case I am very cross at having been given this vaccination.
Has anyone had similar experiences?
Posted Fri 12 Oct 2018 8.04pm by wendyloish
I had the over 65 flu shot a couple of months ago, and had no reaction to it whatsoever. However I am a regular flue shot recipient, as I have many health problems besides psoriasis. I have psoriatic arthritis and irritable bowel syndrome as well as Hashimoto's thyroiditis, blood pressure and heart issues. And I am, hopefully controlling the autoimmune problems with the FODMAP diet. Are you on any immuno-suppressing drugs, because once your immune system is being artificially suppressed, you may become susceptible to attack by bacteria and viruses?
The flu shot would definitely have engaged your immune system, especially after the first time you had one. There is even the possibility that it had the impact you suggest. But the good news is that now your body has the antibodies for the flu. I would suspect that next year you should, like me, be able to have another shot with no reaction. Each year's shot is different from the year before, but has some overlap, so the antibodies in your system will protect you better than what happened on your first shot. You have plenty of time to discuss this with your doctor before you need to think about another shot next year.
Posted Fri 12 Oct 2018 8.19pm by Margaret W
Thank you for that.
I am seeing consultant next Friday when I will be starting Methotrexate which although potent I am hoping will clear the scalp phoriasis. Up until then I am using the various steroid creams etc.
Posted Mon 15 Oct 2018 9.58am by badger07
I've suffered from both rosacea and psoriasis for 30 plus years (and used all the various potions and creams the specialists prescribe). It affects legs, back, hair, face, ears etc. I heard about an approach that seems to offer a lot of promise so I've been taking 1/2 tablespoon of Apple Cider Vinegar twice a day in a large mug of water. This seems to be my tolerance limit as any more brings on acid reflux and acid indigestion (you don't want this as you will have to stop and then symptoms return). I take it with cold water as this numbs taste a little ( hot water seems to activate the acid and seems to attack teeth (or it feels that way)). It doesn't seem to matter if I take normal supermarket version or organic with the mother versions, both seem equally effective, I personally prefer the taste of either Sainburys or Aldi's own brands.
The Result seems to be affected by skin thickness so thin skin areas like ankles cleared first, scaling sites of 72 mm by 100mm on both ankles cleared with normal skin replacing lesions. This was slowly followed by the rest of the body healing, the scalp (hair) and face are the slowest to react but even those are slowly returning to healthy skin. its taken 12 weeks so far but every day I notice improvements.
Both my GP and dermatologist are dismissive and non supportive but don't lose heart remember these professionals admit they don't know what causes (and there may be several causes) both rosacea and psoriasis and that there currently is no NHS cure for it. I only really care that it definitely works for me and I just pray that its effectiveness doesn't ever wear off.
Hope this helps and that it works for you
Posted Mon 15 Oct 2018 1.41pm by Jean B
Thanks so much, Badger07! I have both psoriasis and rosacea myself. I have been trying goat milk kefir, but I'm gradually reducing that (as I now have very itchy red ears) and introducing more cabbage into my diet. But it sounds as if I should be trying apple cider vinegar next!
Does the vinegar help the good gut bacteria do you think?