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Hello I’m new!

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Hello I’m new!
Cowsaregreat Offline
Member


Posts: 21
Threads: 6
Joined: Jun 2019
Gender: Female
Location: UK
Treatment: Betnovate Diprobase Dermavate
#1
Mon-01-07-2019, 07:57 AM
Hello everyone. I’ve been suffering since getting married in 2005. Started on my scalp and now have it all over (inc the crack of my bottom which can be so painful it brings tears to my eyes). I am that person who reads the ‘claims’ if miracle cures and buy it, only to be left disappointed (you’d have thought I’d have learnt by now!). I can sort of deal with the patches on my legs, torso and arms but I have it bad on my bottom cheeks which get so itchy and when they bleed it’s like a waterfall! I struggle with my scalp psoriasis and absolutely hate it. I have eventually found a shampoo which doesn’t irritate (the ones Drs prescribe seem useless) and I rinse with cider vinegar before using a little conditioner.  I dream of waking up one day and finding it all gone forever!  Only thing which has got rid of it, short term, was light therapy.
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#2
Mon-01-07-2019, 09:16 AM
Hi and a big  Welcome to the club I'm glad you found us and pleased you have introduced yourself.
You have landed on the friendliest psoriasis forum on the internet and will get nothing but honest advice here from genuine members that have the same problem
My suggestion is to ask to see a dermatologist and explain to them that it's badly affecting your quality of life and need something other than creams to control it. There are lots of other treatments they can give you and may start you in an oral tablet as they did me. You can see what is available to treat psoriasis orally here Oral Treatments For Psoriasis and if I was you I would read about them here and know what your preference is ...ask us questions for honest advice

I'm sure you will get other replies but what ever happens keep chatting here as it's a good tonic and stress reliever
Jim
Turnedlight Online
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,181
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#3
Mon-01-07-2019, 11:33 AM
Hi nice to meet you Wave

You know, psoriasis moves about so although you do have it for life, it won’t necessarily be in your scalp forever, I used to have it there but currently it’s my legs that have the P.

As to the sore personal areas, really feel for you. Sad if you haven’t tried it yet, it might be worth trying a high zinc nappy rash cream (the sort in a tub). It’s messy tho. Others find coconut oil good, personally I don’t get on with it but it’s a question of trial and error (annoying as you can end up spending out a fair bit).

I wouldn’t spend out on any expensive creams aimed at ‘curing’ psoriasis to be honest. When I saw the derm today and she was saying they think patients using nut butters and other natural emollients like oils is a good idea.

I second Jim in saying that the best bet for proper longer term relief is finding something that works from the derm.

Hope you find the forum helpful and enjoy it here!
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#4
Mon-01-07-2019, 11:38 AM
Hello Cowsaregreat  Welcome to Psoriasis Club. They are great aint they, we have a few around our parts and at the moment lot's of babies too.  Smile

Sound to me that you are not seeing a dermatologist ? Tell your doctor you want a referral to a dermatologist as it's getting you down. Like Jim said in his post they will try you on an oral treatment.

I think you will find we all dream of waking up one day and it's gone forever, unfortunately that isn't going to happen and you will allways need something to manage it. The creams your doctor gives you can help in some cases, but it usually needs an oral treatment or bio to keep it under control. And yes you do want to learn about the so called cures, they will only take your money and you will still have psoriasis and some so called cures can even cause more psoriasis.

I'm a fan of Coconut Oil it won't clear it up but it can help soften it, so it could be worth trying it on your scalp and your bottom cheeks.

Keep pushing your doctor and get it under control, it takes time to find the right thing but the quicker you get it sorted the better your quality of live will be.

If all else fails pop in to [Group Specific] you will find plenty going on there to help take your mind of it. You could even start a thread and tell us all why cows are so great.  Big Grin

Regards.

Fred.
Kat Offline
Take my advice; I don't use it anyway.

100 + Member I Just Cant Stop !
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#5
Mon-01-07-2019, 13:10 PM
Welcome!

I tried different shampoos for scalp psoriasis and although some seemed to help more than others, nothing really comes close to easing the itching and scaling very much (if at all)

The only thing that really offered me relief was a topical called Talconex. However as it's a steroid ointment, it's not something to use long term as that can come with it's on set of problems. The next best thing for me was Coconut Oil. I would take a spoonful and put it in a bowl, then put that bowl in a larger bowl of hot water to melt and warm the oil. It made putting on the scalp (in liquid form) easier and the warmth felt good. It helps keep the area moisturized instead of being dry which helps a small bit with the itching for a small amount of time.

I agree with the others, for long term relief, find a good dermatologist. There are treatments out there to help and it's a matter of finding the right one for you. Also, search around the forum for information on treatments, it really helps when you're discussing things with your doctor.

It is a miserable disease that can't be cured (save your money on anything that claims it's a cure), but it can be treated! The best treatments are only through a doctor (preferably a dermatologist)
Cowsaregreat Offline Author
Member


Posts: 21
Threads: 6
Joined: Jun 2019
Gender: Female
Location: UK
Treatment: Betnovate Diprobase Dermavate
#6
Mon-01-07-2019, 17:50 PM
Thank you everyone. I’m not seeing a dermatologist at the moment. I have in the past (which is how I got referred for light therapy). I should go back and get referred again. I know I don’t help myself as I also suffer from depression and I find a good scratch, followed by so much blood is quite satisfying (yes, I know that sounds mad and stupid - which obviously it is.). I saw a Nurse today (totally unrelated to psoriasis) and she suggested going dairy free. I’ve bought some dairy free butter and almond milk as a start!
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#7
Mon-01-07-2019, 18:19 PM
Hi cowsaregreat going dairy free might help, you could also look at these threads  The anti-inflamatory food pyramid ...and Alan has one that he keeps updated here How I Cured My Psoriasis By Diet
But the best and easiest route is through a dermatologist
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#8
Mon-01-07-2019, 19:18 PM
(Mon-01-07-2019, 18:19 PM)jiml Wrote: Hi cowsaregreat going dairy free might help, you could also look at these threads  The anti-inflamatory food pyramid ...and Alan has one that he keeps updated here How I Cured My Psoriasis By Diet
But the best and easiest route is through a dermatologist

And never be alone with depression, we have a dedicated thread for our members here [Group Specific] should you ever need it.
JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#9
Mon-01-07-2019, 20:24 PM
Hi Cowsaregreat welcome to our club. Wave 

There is not much more I can add that the others haven't said already other than to confirm that a Dermatologist is a must. If you can take somebody with you into the consult, it tends to make so much difference.

Be prepared to jump through the NHS hoops, but you must be firm with them, insist on oral medication. Tell them UV didn't work and you have tried all the creams. They will want to put you on Methotrexate first, unless you have a medical condition that precludes its use. Have a good read of all your options and if you have any questions, just ask.

JohnB
Raxyl Offline
100 + Member living the dream

100 + Member I Just Cant Stop !
Posts: 7,405
Threads: 35
Joined: Nov 2017
Gender: Male
Location: Launceston, Tasmania
Psoriasis Score: 2
Treatment: Cosentyx
#10
Mon-01-07-2019, 23:21 PM
Hello and welcome to the club, everyone has already said what needs saying so I'll just welcome you and say with the right treatment your dream can come true and in the meantime, there are plenty of us here to be there when you need to vent about psoriasis.
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