I am at my wits end with scalp psoriasis. It has been 10 years. I have tried everything but immune suppressants and I don't want to go on them.
I feel like every GP or Derm just don't understand the frustration and depression it causes. My whole head is scaled over every damn day. It has really disheartened me from trying them again.. because really what can they actually do except the usual steroids etc.
Currently, I am off and on using enstillar and then trying softer and more delicate creams and home UVB comb. Changes to vitamins of all sorts to try and help...failing...currently trying to wait weeks to see if any improvement with turmeric as anti inflammatory (Not topically, eating it).
My ears get it really bad too (I think i'm going deaf sometimes) and my body gets covered in spots but nothing is as frustrating for me as the scalp. I just can't take it.. the crumbs...the worry when leaving the house.. the discomfort.. the slime from the medication.. whole house covered in scalp probably attracting dust mites and who knows what.
I know no one can really do anything to help.. but has anyone mastered their scalp psoriasis without somehow suppressing their immune system on drugs? :(
Posted Thu 18 May 2023 10.33 by Knoz
Hi, I can definitely understand your frustration.
You may have tried this, alternate daily hair wash with cetraben and t gel therapeutic shampoo. Definitely no other shampoos or any other perfumed products. It doesn't cure it ,but makes it more manageable with less flaking and itching.
Posted Thu 18 May 2023 15.36 by BennieT
Hi, I also tried everything under the sun for scalp psoriasis (also behind the ears and inside the ear canal) and guttate psoriasis in a lot of different spots in the rest of the body. Thankfully it never got severe enough for my derm to recommend immunosuppressants, but my body doesn't respond well to topical steroids like Enstilar or uv light treatment and it was only getting worse with time. Enstilar only worked for a while and I stressed a lot because I couldn't wash it off my hair :/
The best thing that I tried so far is a drug called Skilarence (https://www.psoriasis-association.org.uk/skilarence) it has cleared my scalp psoriasis completely although I still have some spots on the body (we're trying to figure out if we have to go up with the dosage again). It's not an immune system suppressant but an immune system "modulator", so it reduces the inflammatory response without completely shutting off your immune system. It definitely has its cons, it gets a while to get used to because of the adverse effects it causes on most people (diarrhea, stomac pain, flushing) but in my experience it's worth it! Maybe talk about this option with your dermatologist!
Posted Thu 18 May 2023 17.12 by Steve
Sorry you’re having a tough time. know how you feel my docs the same told me that you couldn’t get it in your ear and it’s just stress. Sadly how people don’t understand hope you find the answer
Posted Fri 19 May 2023 04.23 by overitx1000
Thank you for your suggestions. I am sorry to hear you are all in the same boat.
I might have to look in to the Skilarence. BennieT have they said you will be able to come off it... or is it something you will need to just stay on..? I am really hesitant to go on any long term drugs... I am at the age I may get pregnant soon and nothing is of course safe enough.
It's kind of a long term solution, you start with the lowest dosage and then increase as much as you can, then after a while you try to find the lowest dosage possible where you can still have a therapeutic benefit. You can stay on it as long as you want to if blood levels are fine.
I get your concerns though, unfortunately they don't recommend taking it during pregnancy and they have you take a pregnancy test beforhand :( if I remember correctly there's also a "waiting time" between when you get off the drug and when it's safe to start a pregnancy, so you might want to consider that too (though I'm not sure I remember correctly).
I also want to have kids in the future so I know it's not something I can do forever, but for now it works for me. Especially now that the adverse symptoms are almost gone I can appreciate not having to scratch my scalp until it bleeds and not having to worry about losing scales around the house or everywhere I go. Even now when I start to see some psoriasis in certain parts of the body (going to the derm soon to see if I should increase the dosage) I'm still happy because my scalp is clear, it's such a better life truly. I really hope you can find something that works for you xx
Posted Fri 19 May 2023 20.29 by VARSHA P
I am also having scalp psoriasis since last 4 months. It is never been before on my scalp. Also because of that having severe hair fall. I am oiling my gair to keep my scalp moist. But not helping.
Does anyone else having hair fall.
I have used Lidex and Betamethasone liquids for the scalp in the past and they did ok. I would soak my head in oil, I can't remember the kind, I found it in a hair product aisle overnight when I didn't have to work and then the next day pretty much peel it from one end to the other, extremely sore and very depressing. Mine was so bad that's actually how I got put on a biologic, Enbrel, scalp is clear now, I may glow in the dark at some point but I don't care, it has been so worth it.
BennieT- Thank you.. I will really have a think about it. I also cannot stand how slimed up my head is from the enstillar... it is horrific. I once told one of my derms that and he completely just dismissed it.. horrible. No sympathy whatsoever.
Varsha- I have not had very bad amounts of hair.. but I do have bits fall out every time I wash it normally a clump in the shower
PrincessDi- It really is very depressing. Like nothing ever changes no matter what I try. Interesting. How long have you been on the biologic? Did they say you have to continue it forever..
Posted Tue 23 May 2023 09.21 by VARSHA P
Der has referred light therapy as I never had it. But waiting list is 3 to 4 months fir that as well.
Why can't these Dr's understand that 3 to 4 months is lit when you have flare up. Psoriasis is given very less importance. Given enstilar as well. Hope one day we all can find our way to get over this.
I was on Enbrel 5 years and due to an insurance change I had to go on Humira which I've been on 6 years now. I inject every 2 weeks but being that I thought oh I'm healed I tried to stretch it to a shot every 21 days stayed clear for a year and a half then a spot arose on my shin and continued to get bigger and I'm still fighting that one today although I've been back to a shot every 2 weeks for well over a year now. I guess it lets you know who is really in charge. I use a shampoo called Dermarest it has a small percent of salicylic acid. I'm a little worried cause my derm has never mentioned me going off a biologic my scalp was so bad that's how he got me on it initially. He, however is retiring and some docs are afraid of biologics. If you have a doc who doesn't appear to care then I think I'd be looking for a new one, This disease is devastating on a lot of different levels.
Posted Tue 23 May 2023 13.57 by VARSHA P
Absolutely agree Princess Di
I am on Nhs. So don't have choice.
Will see how light therapy works.
Posted Tue 23 May 2023 14.06 by PrincessDi
What is NHs?
Posted Tue 23 May 2023 14.22 by VARSHA P
In UK we are being treated under NHS. We pay national insurance and get this service.
Don't have a choice of Dr
Usually they are nice.
One get get treated privately as well but very expensive.
Which country you are from princesses Di
I am in the exact same situation! Nothing actually works for me but the only thing that helps manage it is using olive oil overnight in a cap and combing my scalp in the morning before I wash my hair. If you haven't tried it already, I'd recommend it as I gives me at least one good scalp day :)
Posted Wed 24 May 2023 08.43 by VARSHA P
I am using Almond, castor and coconut oil. Mix then and then add few drops of essential oils like rosemary and lavender.
Will definitely try olive oil.
1Posted Thu 25 May 2023 14.29 by lizziep (edited Thu 25 May 2023 14.32 by lizziep)
Hi all - I've only just noticed this thread. I've been on skilirence for around 20 years (it was previously called Fumaderm) - it certainly works for me - but BennieT - it IS an immune suppressant according to my pharmacist !
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