Covered from head to toe please help!

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

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

Also be careful with sunbeds and guttate. Every consultant I have had has said steer clear x

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

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 .

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

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.

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?

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.

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

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.

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!

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.

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

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.

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?

Hi, I have had psoriasis for about 25 years, it started when I was pregnant. My psoriasis varies from a few scales on my knees and elbows but currently it is the worst it has ever been with scales all over my body. I have probably tried every cream there is from the doctor, I have had light treatment in the past but really struggling at the moment. Following a referral from my doctor, I saw a dermatologist just over one week ago. He prescribed Enstilar foam and I have been using it for one week. I can't believe the difference it has already made. My skin feels so much smoother, it is still red but it has made a huge difference. I know it is early days and I worry about it coming back when I stop using it but for now I am starting to feel confident again . Ask your doctor for a referral to a dermatologist, I believe the specialist will help more than your GP . Hope this helps and good luck

Hi, I know you've tried out Epsom salts, but have you tried Minera Dead Sea Salt? Its really rich in mineral content and has properties that can disinfect, moisturize, and re balance your skin. A lot of people actually visit the Dead Sea for relief but you can take in the benefits through a bath!

Hi I've had it for 6 years now and it hasn't once gone away yet but I have been using dream cream from lush and it does seem to be improving. Its not itchy anymore which is a huge improvement

Hello everyone,

Psoriasis became part of me almost 34 years ago; it started on my knees and elbows, today it covers the majority of my body. I have had various treatments - UVA, coal tar preparations and moisturisers, sun beds and emollients, holidays in the sun. Over the years I have accepted that the condition I have is dependent upon my attitude towards it, for 10 of these years I just lived with this condition, then I had a change of thinking and I gained the opportunity to take methotrexate, this had limited impact and now I am about to commence with Stelara. Yes this condition has made me feel restricted regarding participating in swimming and wearing shorts and summer tops, but I am me and it is the attitudes of others that I can allow to make me feel 'not me'. so to everyone who is sitting scratching, itching, and feeling miserable - you have a life, live it and stand up for yourself to gain some treatment to help you live your life, we have a long term condition that we can gain some respite from - I am now going to have some respite by taking Stelara, I will keep in touch with the forum as to my progress with this treatment.

Hi Mrsbluesky

Nothing you have listed is to actually treat the psoriasis. Steroids don't treat it they just treat the symptoms. You need to get a tar cream. Put the steroid on in the morning and put the tar cream on at 6pm then sleep in old pajamas. Just put it all over. "Psoriderm" is a good one.. it stinks but you will notice a difference doing this in 6 weeks. The Psoriasis should become paler and flatter. The tar takes the scale off and encourages normal cell development. Then once it's all much flatter and paler a few uv sessions or getting some sun will help. If you can't do this then take a vitamin d3 higher dose along with vitamin k2 and magnesium aswell. This will make a difference if used along with the tar regime. I have had guttate 5 times after a throat infection and it's always cleared up. I have it just now and when I say covered that means not much normal skin left to see. It's starting to get better after 5 weeks doing this and the patches are getting paler. Good luck

And also get checked by your doctor to make sure your throat infection is still not active. Ask for a throats culture to be taken and you will get the results back in 2 days. Then if you do get some antibiotics.

Thanks Lisa, i am covered head to toe too but as the dermatologist i saw today said she understands the sheer volume is too much for creams and it's very 'aggressive'.

(Side note she nearly didn't see me due to nurses cock up but i ran over nearly in tears saying 'look at me i need this appointment' and was seen..)

I was prescribed cyclosporine. Said it would start clearing in two weeks. She did originally suggest putting an urgent referral in for phototherapy but would be difficult to manage with two kids and three school runs a day.

Well I hope the cyclosporine works for you. I have never had this before. Tar & Phototherapy has always worked for me. I have had 3 lots of tonsillitis in 6 weeks.. I have just had a tonsillectomy because of this as I have so far had two flares and awaiting a 3rd flare and I am going to be gutted as it's just starting to clear and I'll have to start all over. My skin was bad already and then the 2nd flare has covered every single part of me too so I can't imagine how it could get any worse with a 3rd flare. . I always get it really extensive when I do.. it's shocking to look at, all joined together and covering everywhere apart from face and hands thankfully. Phototherapy can clear it up quite quickly so if you don't have luck with the drugs then see if you can manage to fit it in. Try not to panic, it looks awful but it will go away if it was triggered by an infection.... until you get that infection again.

Tar I've had a few times but there has been times when I haven't been able to use it and in fact once made things a lot worse . Each flare up is individual .

I have had many decades thinking about this and my personal thoughts are psoriasis is a symptom not the problem and it all hinges on immunity issues . No matter how often skin treated the underlying cause still lurks . A "cure" can only be found if more research put into it and there is sadly very little is done . The skin is our biggest organ which is a fact many forget .

I have taken cyclosporin for about 6 months in the past and yes it works ............

Can someone tell me... when you take cyclosporine or methotrexate.. if it clears your skin do you have to continue to take it to remain clear, when you stop taking it does it flare back up again? Does anyone know if in the case of guttate that was brought on ny strep whether it will flare once cleared with one of these drugs when the drug is stopped?

Many thanks

I took cyclosporin for about 6 months and stayed clear for about a month if I remember rightly . I decided for a variety of reasons to never use oral treatments again . There is truly permenant cure unless you take something . I m not sure you can stay on cyclosporin permanently but it was a long time ago and things change

Try Clearfree. An earlier post I sent explains my success with this herbal capsule treatment. I have had psoriasis for 50 years. Tried everything from Coal tar, to dead sea salt, UV treatment in hospital twice etc etc. I have use Dovobet for the last 10 years with not much success. Clearfree works for me so far. Not cheap. 6 month supply and spray clear ointment about £150. Shipped from USA. Takes about 10 days to deliver.

I am told psoriasis is a fault in your genes. So until medicine can change that faulty gene then a permanent cure is a long way off. Clearfree claim to clear psoriasis and exzema with this treatment. So far I am optimistic.

Exactly.genetic

Hi All,

My psoriasis flared up two days before Christmas. I would like reassurance that it is improving. It is still over my legs and still itchy but now flatter and smoother. It is on my back and trunk but my chest and arms are clearing. We are near to end of march and it is really getting to me now. I am currently using a steroid cream in morning, I also have exorex which is a tar liquid I put on and doublebase get to moisturise with. I am taking d3 also to boost my system. I am also waiting to have light treatment but it isn't till May, which if I am honest I am angry about. How bad do u need it to be to get an emergency appt. I also found a company in asbourne hire out psoriasis purpose beds, that you can hire and use over your own bed. You need doc approval, I have enquired as well as trying to push my hospital appt. It has nearly been two weeks since then?! Starting to get down about it now and I have two kids which means mum hasn't took them swimming for a while! If anyone can give advice, I would appreciate it. Just want it to go now!!

Hey I'm Carrie and have lived with psoriasis since I was 3 it cleared once which was really nice because I was normal for a bit. Its really hard being a teenager with psoriasis. I obviously don't show my skin because of what people might say or think I just want to be normal and have clear skin. My boyfriend says he don't care about it but I know he does and I'm scared its going to affect our relationship does anyone know how to get rid of it please!?

CLEAR FREE herbal worked for me after 50 years of suffering. I take 2 capsules per day and within weeks it was almost gone. No itching, no flaking and the patches are very pail and shrinking. They claim a 98% success rate. It is working for me and I feel great.

https://www.clearfree.net

I was so excited about this herbal treatment, I wanted to tell everyone.

Back in 1983 I went to Romania on holiday. A skin specialist prescribed a drug and some cream. All paid for with Marlborough cigarettes. Communist country at the time and the currency was worthless. The doctor told me I would have young skin for a long time because I suffered from psoriasis. I tried in my younger days to holiday in sunny climates and swim in salty water. This always worked until winter came again. I am now 64 and still no wrinkles. So, some good points.

This disease put me off swimming which I enjoyed. Now I am looking good.

I have said in earlier correspondences that I could write a book about my experiences over the 50 years. Some funny others sad.

I came on this forum to seek some feedback to my newly diagnosed P (at 54) and my jaw has been in my lap readying all of your history w/this horrible skin issue. I should be thankful I have it as lightly as I do compared to all of you. God bless, I cannot imagine the pain, itch and self conscientiousness you all feel especially teenagers with it!

Mine started like most when our immune system was working overtime from being sick and a steroid did the damage and started the flare.

I am curious, I have read a lot about this SORION Cream working wonders. Have any of you tried this? Check out this link I picked up from someone on this site in another forum string.

https://www.ruehe-healthcare.com/Test-Psoriasis-Network

I look forward to offering any suggestions that work for me.

Hi Mrsbluesky,

This is the first time I am posting on here, but your story was very similar to mine. I have suffered from plaque psoriasis since I was 8. I have gone through all the creams, steroid base and moisturisers, none seemed to work, so I accepted there was not much I could do, then last year my psoriasis to a nasty turn after I got tonsillitis, I then found myself with plaque and guttate psoriasis. In a space of 3 weeks I went from being 35% covered (my average over a year) to being 80% covered. This resulted in my body unable to control the body temperature which then led to chest infections. So not only did my health deteriorate rapidly I became mental and emotional broken. This was not helped by the fact my local GP, despite seeing them weekly over a month did not stop the patronising comment such as 'you need to moistures and keep hydrate' only then did they refer me to a specialist.

This was the best thing that happen to me, within one appointment it was suggested to go on cyclosporine. Despite my reservation like so many other after reading the side effects, I was willing to take this regardless of the side effects as anything was better than how I was then. After 2 weeks on cyclosporine my psoriasis was near clear, all I had was red patches from where they were. 6 months in completely cleared and remained so from a year.

For me this was the first time I had been cleared of my psoriasis since the age of 8. The only side effect I had was cold burning sensations with fingers and toes when there is a change of temperature, so I was lucky it worked for me.

Now I have to change as cannot be on longer than a year so have now started methotrexate. Results are slow, and not as confident it will clear like the cyclosporine. But I will be hoping.

One moisturiser I will say has been the most effective for me during and post serve flare up is Aveena.

They do bath oil as well as regulat cream which helps moistures the whole body.

I hope you are having some luck with your dermatologist Mrsbluesky as I understand how debilitating it can be.

i have it really bad or should i say had!! it effected me in my job and confidence then a friend let me try her enstilar foam i have never looked back! the nurse give me it at my gp surgery as she rang derma to sort out prescription im assuming. the dryness just peeled within 3days my back was covered as was my face my confidence is back and i would highly reccomend you try i have been trying different creams for 14year hope you get sorted x

Hi just wanted to update, I've been on 75mg cyclosporin since 10/03/17. While my psoriasis has not disappeared, it has greatly reduced in the worst areas. My face back and arms it is still there but barely visible compared to how red thick and angry it was previously. Turns out it was erythmodermic. On my legs the Guttate is still visible but again greatly reduced. Will have another derm app in June where she will likely up the dosage.. she did say I was on the lowest dose and room for it to double. Feeling much better in myself now. Thank you all for your wonderful advice x

Mrsbluesky Hi Like many others here I have suffered for decades however just last week I heard about Enstilar foam and one week today of using it and all the plaques have disappeared within 3 days and only left with light redness which is continuing to recede. Also one week of using Aveeno moisturiser and body wash for my scalp with great success. My skin is so smooth and feels soft to the touch. Feeling much happier 80% reduced itching and pain.. Can't recommend you to try this enough. Check out the Enstilar foam forum. Good luck x

Hello.

Hi

I've had psoriasis since I was young, on and off. As I've got older it seems to be worse, Ive used the Enstilar foam but that didn't work for me, changed diet everything.

My husband bought natura-derm, pots are small but it works, and it works well. I'm not sure where he got it from and he's not here now to ask, but just had a google and they have a website, natura-derm.com

Hi All,

I have just registered today. I have suffered from guttate psorarsis since I have been 5 and I'm now 30years old. I got treatment at the hospital when I was teenager. Over the years, I have had 3-4 courses of light treatment, it worked wonders. However, within a couple of months it all comes back. I get it on my scalp very bad and can take 1-2 hours to put it on and cover every bit. I went back to the dermatologist and prescribed methotrexate. It has cleared my skin well, but I have suffered severely from the side effects and have had to come off them. Extreme nausea, dizziness, blurred vision. I was told that it effects very few people, so hopefully it doesn't effect anyone you would like to try it. It is making me feel very low and people can't really understand who don't suffer themselves and thought it would be a good idea to sign up on this and we can relate to one another and help each other. I have been informed that infra-red saunas are meant to be really good. I'm going to I start some sessions and will report back to see if it works!