Hi there,

Ive had psorasis since my teenage years, I'm 35 now. Over 50% covered, tried light treatment, steroids, etc. About a month ago, my psoriasis started peeling like sunburn. Its very red, flat and itchy - the itching has subsided a bit recently. I currently have a brain tumour grade 3 - which I've had for coming up 3 years - but i'm not receiving any cancer medication. Only Brivaracatam for my epilepsy, which is a result of the tumour. Last MRI June 2023 - "sound and stable." I'm currently using - Enstilar foam and Zeroveen, which I alternate with.

I remember reading that for it to be Erythemarodermic Psoriasis, it would need to be covering almost my entire body. Not sure how true that is.

Any help would be much appreciated.

Thanks.

This post shows Erythrodermic Psoriasis Erythrodermic Psoriasis if you think it is that then you should contact your dermatologist and stop using Enstilar.

Having said that I would talk to your dermatologist anyway as Enstilar is not for long term use and you would be better off going for an Oral or Bio treatment see here: Oral Treatments For Psoriasis and Biological Treatments For Psoriasis

Great news about you last scan 

It's good news to have the last scan show "sound and stable."  Especially with a brain cancer, I hope that your medical specialists communicate with each other.  The dermatologist, neurologist, oncologist will have no delays in discussing your care, I would hope.  

Because maybe there is a psoriasis treatment that will help you without bringing harm regarding the cancer.  Because 50% coverage of your skin sounds so painful and uncomfortable.  I hope you can tolerate one of the many therapies that bring relief and clear skin.  The doctors have to work together for your safety, I think.

(Mon-14-08-2023, 10:34 AM)Fred Wrote: This post shows Erythrodermic Psoriasis Erythrodermic Psoriasis if you think it is that then you should contact your dermatologist and stop using Enstilar.

Having said that I would talk to your dermatologist anyway as Enstilar is not for long term use and you would be better off going for an Oral or Bio treatment see here: Oral Treatments For Psoriasis and Biological Treatments For Psoriasis

Great news about you last scan 

Thanks for your reply, Fred. And thank you very much for that photo. I had suspected Erythrodermic Psorisis, just by the way I was feeling physically and mentally. But many of the photos online, didn't quite match up. The one you lined me to, appears to look far more accurate to me. Really cold hands, poor blood circulation, couldn't regulate temperature, hyperthermia and dehydration. Because I'm on so many meds, and I have a host of other issues atm, I think I mistakenly overlooked my psoriasis. I'm not sure how to upload photos, but I will have a go after this. Thank you so much, Fred.

(Mon-14-08-2023, 16:37 PM)Forest Walker Wrote: It's good news to have the last scan show "sound and stable."  Especially with a brain cancer, I hope that your medical specialists communicate with each other.  The dermatologist, neurologist, oncologist will have no delays in discussing your care, I would hope.  

Because maybe there is a psoriasis treatment that will help you without bringing harm regarding the cancer.  Because 50% coverage of your skin sounds so painful and uncomfortable.  I hope you can tolerate one of the many therapies that bring relief and clear skin.  The doctors have to work together for your safety, I think.

Thanks for your response, Forest. Yeah, I must say I was fairly pleased with the results last time, as I feared it maybe worse with this one. Unfortunately communication amongst my "healthcare team" hasn't been great. My GP has been prescribing me Enstilar and I haven't seen a dermatologist for years. But I am on a waiting list that I've been on since January to see a dermatologist. I'm also on a waiting list for Muscular & Skeletal since October 2022. But thank you so much for your response.

For images have a look at this thread: [Group Specific]

If you get stuck shout out.

BigA1988, our healthcare system (insurance) isn't the same in the US as in UK, but with the long waiting times and maybe the required steps to be put on a waiting list or whatever one has to do to get care in UK sounds complicated.  

I think when a person is sick, it's even harder to sort out a complicated system and make sure every step is met along the way.  Do you have an advocate to help you?  Might be a parent, partner, child, friend, or professional within the system?  It's hard enough to have physical challenges with serious illness and to live day-by-day.  But to also navigate the complicated system just to get the care you need is extra hard when you're ill.  I hope you don't have to go it alone.

I had a flare with about 30% of my body covered in red patches - they were hot, dry and slightly raised like they were swollen. Instead of the normal flakes from psoriasis the flakes were tiny and incessant.
I was also feeling really unwell, hot but shivery like the flu - the derm said it was because when too much skin is involved it struggles to do its usual job of temperature regulation.
I was put on steroids for a few weeks. The improvement was very quick.
I think I was erythrodermic but I wasn’t given that as a diagnosis - I don’t know if you have to be completely covered, I think it’s more the fact that it’s not like normal, stable psoriasis but inflamed and angry.
I’d suggest if any of that sounds familiar then try and see a dermatologist..

(Tue-15-08-2023, 15:14 PM)Forest Walker Wrote: BigA1988, our healthcare system (insurance) isn't the same in the US as in UK, but with the long waiting times and maybe the required steps to be put on a waiting list or whatever one has to do to get care in UK sounds complicated.  

I think when a person is sick, it's even harder to sort out a complicated system and make sure every step is met along the way.  Do you have an advocate to help you?  Might be a parent, partner, child, friend, or professional within the system?  It's hard enough to have physical challenges with serious illness and to live day-by-day.  But to also navigate the complicated system just to get the care you need is extra hard when you're ill.  I hope you don't have to go it alone.

Yes, you're right, Forest. It can be complicated here. Frontline staff and surgeons have been superb, but communication between specalists haven't been great. Family members help as much as they can, but can be difficult with work commitment etc, and not having my driving licence now, is a pain as well. But places like this have been great.
I really Appreciate your concern.

As TL stated, I'm not certain it has to be over the majority of your body.  My first diagnosis was erythrodermic psoriasis. My diagnosis could perhaps had been a wrong, but at that time the psoriasis I had was very red and peeled off like sheets. However it was scalp, neck, back, elbows, knees and a patch on my stomach at the time so definitely not all over.

I hope you can get seen by a dermatologist soon but if it continues to get worse then I'd try to get back in to see my general doctor as soon as possible.  I tend to err on the side of caution.

Hope things improve!

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