Hello, new to the site!
I have had psoriasis since I was 3. It was continuous throughout childhood but stopped after a particularly nasty flare up when I started using sunbeds. I suppose it kind of went 'in to remission' as no sign of it for six years. I had a stressful year followed by tonsillitis and I am covered again. It's been since around mid December and I just can't cope. It's covering my whole face, back, arms, chest, hands, with guttate all over my legs.
I've tried,
Epsom salts and olive oil baths
Eumovate for face(GP prescribed)
Another cream I can't remember name of for body prescribed
Cetraben
Sunbeds
Working out!
Cutting out junk
Removing hormonal contraception
Stopping fluoxitine
Allergy tablets
Peppermint tea instead of coffee/tea
Bought a uvb lamp but I'm so badly covered it takes forever to use, hence trying sunbeds again yet this time I think k it's made it worse. .
I have a swollen glands behind my left ear, is it possible i still have infection ??
I just don't know what to do, please help, i won't get to see a dermatologist until 10th march and I'm struggling with this all over again, I was finally happy with my appearance.
I've suffered from this for 38 years and had most of it with flare ups .(hospitalised a couple of times and used cyclosporin ) just had 3 years clear and it's flared up and like you struggling for an appointment as now have a major flare up. My consultant recommended aveena in the past and it does help as a stop gap measure
Posted Thu 16 Feb 2017 20.23 by Mrsbluesky
Thank you for replying Nicola!
How long do your flare ups typically last?
I will look into aveena, thanks!
It varies no rules to it sometimes years sometimes weeks . Aveena a non prescription cream . Avaliable everywhere and seems to ease and help . Over the years done tar , salysilic , dovenex, dithraynol, cyclosporin, methotrexate, etc this does help ... not cure . My consultant swears by it
Posted Thu 16 Feb 2017 20.50 by Nicola
Also be careful with sunbeds and guttate. Every consultant I have had has said steer clear x
Posted Thu 16 Feb 2017 21.17 by Mrsbluesky
Thank you I think I will steer clear from now on. this time it made it cover my whole face and didn't clear anything. Admittedly only done a few sessions over three weeks but definitely made it worse.
I'm 26, I don't know how to cope with this. I struggled with it all through school for it to disappear. And now it's resurface with a vengeance. Does nothing for my self esteem.
I have never seen a dermatologist for it as previously waiting lists were ridiculous. This will be my first proper appointment, I'm so hoping they can give me something to clear it
Posted Thu 16 Feb 2017 21.36 by Nicola
Well good luck with dermatologist . Having a good dermatologist is worth its weight in gold . Psoriasis is different with each and everyone of us . I could write a book lol . Infections with mine have a big role in flare ups . There is often no quick fix sadly . But I know sun beds with guttate and a flare up are a no no .I hired one and ended up in hospital for 6 weeks ... but the treatment in the dome at hospital was great .
Posted Thu 16 Feb 2017 22.18 by joyce
I suffee from psoriasis i bought a cream in America gold bond psoriasis relief cream it works for redness after the patches are under control keeps skin clear i ordered it from usa now it seems to be restricted why cant this be purchased in England im just trying to get it on ebay
Posted Fri 17 Feb 2017 14.18 by Jo Jo
Dear All,
New to the site and I just wanted to share my experience. My first flare up was around 6 years ago, just after I got engaged. I must admit I was scared because I didn't know what was happening to me. Very quickly I was covered from head to toe in spots, I never knew I had psoriasis. The doctors themselves weren't even sure, which really didn't help. Then I was diagnosed with guttate psoriasis. This led to being hospitalised for a week, where the nurses would cover me in steroid cream and moisturiser and then covered me in like a thermal suite. Following being in hospital, I then had the light treatment which took my psoriasis away, eventually.
6 Years have passed and then two days before christmas 2016, I started with another flare up which I was told was from another sore throat. There may have been a few stresses at the time in my life and within that 6 years I have had two beautiful children. The flare up this time round has caused me a little bit more discomfort as I have tried to manage it at home, I have been given some tar lotion and moisturiser which only now (9 weeks) have started showing a difference. None of the creams I have prescribed though have completely taken the itch off. Quite often I have my moment where I just cry and prayer (not like me) and just wish the rash would go quicker than it does. It does make you want to cover up and does make you feel unattractive. My husband and family have been a great support, I think that is one of the most important things you need, the support that you will get through it. I have again been referred for light treatment but not sure how long this will take. I am now starting to see a slight improvement, I just want my life back and for this never to be as severe again. I have also started to take some Vitamin D3 tablets which again I am hoping will help boost my immune system.
Posted Fri 17 Feb 2017 21.51 by Mrsbluesky
Thank you for sharing Jo Jo. I'm curious, how bad was it to be hospitalised? Same with Nicola? What happened, or did you go to a and e?
I mean I'm covered all over feel ill. When I apply creams so I just apply moisturiser, at what point does it require hospital?
Posted Fri 17 Feb 2017 22.18 by Nicola
Things have changed so much over the years . It was roughly 2/3 complete coverage was a hospital stay (and that's literally 2/3 full coverage ) now a lot of exclusive dermatology units with dermatology nurses have shut and a lot of dermatologist 's have a couple of beds on a medical unit ... as an ex nurse and a chronic psoriasis sufferer this doesn't work . Unless very very serious . My admissions were not a and e but emergency via consultant. Each time in hospital 6 weeks at a time time did not cure it or even get rid of it ..... just for a short time made it more manageable .
Keeping moisturised is important . Guttate is tricky as smaller patches initially until join together so some prescribed creams harder to apply .
So many factors have an impact on psoriasis in my experiences infection , hormonal but after 38 years with it and only in total probably 4 years clear I will completely say it's immune related and stress is not the cause alone .
It's miserable , a major impact on your life eg what you wear , what you do etc etc BUT we hide it because of other people's reactions ... shame on them . We still have relationships , get jobs etc so there a lot of decent people in the world . The biggest obstacle and what angers me is people saying it's a nervous illness lol . No its not it's genetic !!!!
Hi everyone, like many of you I've been looking for a good dermatologist, with no success, I've heard I should strart psychotherapy as well. When nothing the doctors suggest helps you start seeking remedies on your own, observe your body, You feel like trying anything to ease the suffering. Lately I've been using some hemp cosmetics http://hemplinecosmetics.com/Body-balm-with-hemp-oil-400ml, and I've seen an improvement, and feel more hopeful.
Posted Thu 23 Feb 2017 13.20 by Johnbeach47
Hi
Been reading about the misery that you are suffering , I only have a small patch on back of my head, been suffering for about 3 years with it, been trying loads of medicated shampoos and they only work for a short time.
two weeks ago I was clearing out a cupboard and came across a bottle of Penang Nutmeg Oil that I bought on holiday 20 years ago, and on the back it says it can be used for itchyness, arthritis,lumbago. So I tried it and it has stopped the itch and has almost stopped my skin flaking off so I am going to keep using it and hope it works long term.
Hope this might help you.
Regards
John
Posted Thu 23 Feb 2017 22.55 by andrea have had p for too many years
I have been on 17.5mg methotrexate for 1 year. It has really helped, but patches are starting to appear on my back again so i thought i would also try a high alkaline diet also. I have recently read a story about Hanna Sillitoe who has had remarkable success following this diet for her psoriasis and has now written a best selling recipie book for an alkaline diet. I am inspired by her success so thought i would give it a go.
Posted Fri 24 Feb 2017 10.53 by Mrsbluesky
Thank you all for your replies. On the 10th I do plan on pleading for methotrexate, as I just can't deal with it, and really do not want to be out on another waiting list for light treatment. Will update with what the dermatologist suggests.
In regards to the career bit and sports can completely relate. I considered joining a gym last night then had to remember I'm covered. It's put me off applying for jobs. If I Didn't have to take my two to school/nursery im not sure I'd venture out much!
Posted Fri 24 Feb 2017 11.01 by Mrsbluesky
By 'covered' I mean;
Thick big Guttate drops all over legs, bottom, feet hands, trunk and so much it's all joined and completely covers genital area, top arms, back, chest, neck, ears, and across face with thin slithers of skin not affected on face. My forearms are between what's on my legs and top arms and is starting to all join together. I don't particularly want to put a picture up as I don't want to it to end up on Google pictures when people search what it looks like
Oh. And my scalp.
Posted Fri 24 Feb 2017 20.43 by Nicola
I'm going to the gym and im badly covered ... its very hard but I've suffered almost 4 decades and suffered every slur I can . Jobs are a problem I am changing jobs and want to go back to nursing which I can't due to psoriasis as an infection risk . The trick I've learnt is by devious means keep face and hands clear and things are easier . When it covers your whole body and guttate joins together it's horrendous (I'm almost there yet again) all I can say is keep moisturising and I've mentioned before aveeno really helped me . I've used and taken most drugs for psoriasis and this does soothe but doesn't cure . I've never used methotrexate always refused it especially when I was of child bearing age . I took cyclosporin. ... that's another story
Posted Sat 25 Feb 2017 00.31 by cazza
Mrsbluesky
Please don't despair! Your guttate psoriasis can be treated and will, quite possibly, clear up completely. From my recent experience - 2 flare ups since 2012/3 - I have achieved full clearance twice. I am currently 5 months clear of every single spot, fully aware it will probably come back again but comforted by the fact that I've been able to get rid of it twice. I think the most important thing is getting yourself seen by a Dermatologist and then making sure you don't get discharged. (I made the mistake of cancelling a check up appointment because I was clear only to have to go through the whole GP, referral, "your appointment is in six months" rigmarole when the next flare up occurred...) So, what works for me is PUVA treatment. I wont go into details as I'm sure you've read up about it, yes there are dangers but honestly, IT WORKS. I don't think I had it as badly as you but I had guttate spots all over my arms, legs, bum and back and after 15 sessions they were all gone. Regular sunbeds and sunshine do not necessarily help, as people have pointed out they can make it worse, but controlled dosage of UVA with psolaren tablets works. Its not convenient fitting in 2 sessions a week but I know when things are as bad as things are for you at the moment you'll do almost anything. I'm in London so getting to my local hospital twice a week isn't too much of a mission - I realise if you live more rurally this might not be possible. Anyway, I just wanted to offer you some hope as I know how crippling it can be.
Posted Sun 26 Feb 2017 20.05 by Mrsbluesky
Thank you cazza that's good advice re. The dermatologist. Thank you for sharing what's worked for you
Nicola what happened when you took cyclosporine?
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