Erythrodermic Psoriasis

Posted Mon 4 Mar 2019 5.44pm by emalainia

Hi guys, I feel a bit like I’ve been through the ringer lately! I’ve had psoriasis for about 3 years now (I’m 23) and recently had a really bad flare up (all body affected) which after seeing my GP and having to show them a web page about erythrodermic psoriasis they diagnosed me with having an erythrodermic flare! It died down pretty quick after a good old dose of steroids (back to ‘normal’ itchiness), it felt like I was on fire and my whole body wouldn’t stop shaking after using just moisturiser on my skin! It was crazy and scary as hell! My ankles were really swollen and nothing was calming the burning, not even itching sensation. I was wondering if this has ever happened to anyone else? And was your doctor aware of the condition because mine certainly wasn’t! I just want to hear about your experiences if this has happened to you also?

Posted Wed 24 Apr 2019 1.17am by Darren S
I’m in my late 40’s, married with three kids. Had my first and only flare in Jan 2018. Just living with it now.

Hi emalania,

It now seems I’m suffering from erythrodemic psoriasis as it now covers me in head to toe, some are just tiny raised dots, others are scaly plaques that just merge into each other. Some times I’m literally on fire, it feels like I’ve rubbed some kind of Deep Heat muscle on me. This itching is insane, between that and the burning pain I’m regularly awoken in the night, forcing me to take sleeping pills just to get some sleep

I was diagnosed with having Guttate, but after a few days, I was covered in plaques of all shapes and sizes. Sometimes although I feeling like I’m on fire, I’m shivering and my teeth chatter., it’s awful.

Im on my second week of UVB treatment at present so fingers crossed.

It’s all been a massive shock for me all this. One day I’m fine the next I’ve a chronic lifelong condition, and that the particular for of my condition is rare and potentially life threatening.

I’ve b en told that if the photo therapy isn’t successful then I’m being started on Methetrexate. Have any experience using this drug?

This whole thing has sent me sideways and I’m at a bit of a loss what to do if I’m honest.

Posted Wed 24 Apr 2019 3.33pm by andrew1977

Hello. I have had patchy psoriasis on-and-off for the past 20 years (I’m now 41) but it’s flared up very badly in the past year or so, mainly due to a couple of job-related stress issues (which I won’t bore you with). I’ve been using various steroids & mosturisers (the usual stuff prescribed by my GP) and also just started light therapy twice a week (had 4 sessions now) after I saw an NHS dermatologist in January. I’d felt quite positive about things ahead of that first light session & having stopped using the steroids the previous weekend (as advised by the nurse).

But, I’m now covered from head to toe in psoriasis (it’s got far worse in the past week) and finding it difficult to move about without my skin feeling extremely painful & frequently feeling shivery and cold.

I managed to get a few days in a row of natural sunlight over the holiday weekend and hoped it would lift things a little. (Normally a few days of sun clears up most of my psoriasis & gives me a real boost) but, I’m still shivery, can’t sleep for itching and feeling quite rundown and bewildered.

Sorry I don’t have any tips at all— but it does feel like we’re in the same boat in terms of symptoms.

I mentioned this to the nurse at my light treatment yesterday, but she didn’t seem too fussed at all.

I’m going to raise it again tomorrow, so will report back if she has anything to say.

The only thing that’s given me a little relief was a warm bath with some moisturising bubble bath (Sanex) but the itching & shivering started again a couple of hours later, despite me using tons of moisturiser after the bath.

Some ibuprofen also helped lift that throbbing & itching.

I’m currently writing this in my car on its heated seat to to try & stop shivering!

Posted Tue 11 Feb 2020 3.22pm by Tobyjug

Just signed up guys so this may or may not be short and sweet.

Had psoriasis since the start of time (now 52) and it was a nightmare for decades with steroid creams, which was a mistake as even the doctor's prescribing this didn't tell me or stop me using it as it can seriously damage the skin from years of use, and moisturisers are no substitute, but for the last 5 years I had it under moderate control......... But then........ I fell extremely ill with an unknown ( to me ) condition.

My GP diagnosed Scarlet Fever, which I thought had been extradited and I knew nothing about. Was put on penicillin but went down hill even more and was rushed to hospital where Erythroderma was pronounced...... Erythro what!!??

Never heard of it!!

The Dermatologist the following week confirmed this as I stood there completely unashamed and nude as the day I was born being examined by 2 consultants and 5 medical students.

Needless to say I didn't care, I just wanted this excruciating pain and peeling to stop as it had reached 90 plus % body coverage.

More steroids later and I'm still Ill. My hands ( and feet ) are destroyed and I have to wear moisturised medical gloves 24/7 and I have to shower 3 times a day with 50/50 emollient and wear a body stocking..... It's hell... Tell me there's an end to this guy's!????

Posted Tue 11 Feb 2020 3.40pm by Lasttime

Hi Tobyjug

Have you ever had light treatment/Puva ?

Has a high success rate and may help get it under some sort of control, down fall is you are limited the amount of treatments and it comes back after you stop.

But may help get you substantially clear .

Maybe worth reading the blueberry thread

Posted Tue 11 Feb 2020 3.47pm by Tobyjug

I'm ready for anything at this time :)

Yeah done the light thing, and methotrexate and humira lol so I'm willing to give it a go with blueberries.

Thanks for listening and replying, made my day!

Posted Tue 11 Feb 2020 3.56pm by Lasttime (edited Tue 11 Feb 2020 4pm by Lasttime)

Had similar experience to you , know what you are going through try not to let it get you down, been on biologic s myself and i am not keen on side effects had great results at first but seems to have lost some effects over last few years.

Would really give BB a try i did made a couple of posts on thread will keep it updated

similar age to you and i am honestly shocked at results so far

Gluten threads look to have helped some people as well

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