British Skin Foundation


Any one with PLE?

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b335wal@aol.co.uk
Posts: 1
Joined: Thu Oct 15, 2020 1:28 am
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by b335wal@aol.co.uk on Thu Oct 15, 2020 1:38 am

Any one with PLE?

Hi, anyone here with PLE? And if so, have you managed to find anything that helps with the rash if you have scratched it? The only thing I've found that really helps before hand, to stop itching, is aloe vera gel

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talkhealth
Posts: 1783
Joined: Thu Nov 04, 2010 3:29 pm
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by talkhealth on Thu Oct 15, 2020 3:51 pm

Re: Any one with PLE?

Hello - it's always difficult to recommend creams directly - as what works for some can be a complete nightmare for someone else. When trying creams make sure you go for a reputable brand that clearly marks all ingredients on it (if they don't - don't touch them!). Your pharmacist will be able to recommend a wide range. Next, make sure you do a patch test. People so often overlook this test as a waste of time, but if you react to the cream, a small reaction, as opposed to one that could affect your whole body, makes a big difference.
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Alessandro01
Posts: 13
Joined: Mon Oct 12, 2020 1:40 pm
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by Alessandro01 on Tue Nov 03, 2020 7:14 pm

Re: Any one with PLE?

Most of the time I cover up but when I am going to be in sunlight I use a pretanner (I use Ecotan, others are available but this one is pretty cheap, I think there is also something similar at Home Bargains). it needs a week of use to get the melanin levels up but it means I can be in the sunshine for longer without having to go crazy with antihistamines.
As for vitamin D, I try to eat a varied diet with lots of vit D rich foods as I can't really do the sun thing. :mrgreen:

Prycejosh1987
Posts: 368
Joined: Mon Sep 14, 2020 6:29 pm
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by Prycejosh1987 on Fri Nov 20, 2020 5:04 pm

Re: Any one with PLE?

b335wal@aol.co.uk wrote:
Thu Oct 15, 2020 1:38 am
Hi, anyone here with PLE? And if so, have you managed to find anything that helps with the rash if you have scratched it? The only thing I've found that really helps before hand, to stop itching, is aloe vera gel
Aloe vera is good for anti-itching, its also a natural remedy that is good for infected wounds. Although its not has powerful as salt. Its a good cleansing substance. Perhaps you could see a pharmacist for remedies. I think you can get something over the counter for the itching, and maybe even for the PLE.

Andy Woods
Posts: 1
Joined: Mon Jun 21, 2021 11:44 pm
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by Andy Woods on Tue Jun 22, 2021 12:06 am

Re: Any one with PLE?

Hi. I'm really struggling with PLE. It causes me some anxiety (and depression if I'm honest). It's getting worse each year. I'm a 55 year old male, fair skinned with some freckling. I have a property in Cyprus and love spending time outdoors in the UK and in Cyprus but my PLE condition is making me more reclusive, less sociable, and I just feel unable to have fun outdoors anymore. I have tried various high SPF sunscreens over the past few years coupled with antihistamines as preventative measures but to no avail. I have used topical creams and steroids to ease the condition with little success. I've just spent a week in Cornwall - no sunbathing - but exposed to the sun for about an hour on day one. Suffered a huge eruption of sore, itchy spots on my scalp, forearms, back of hands, lower legs and ankles. When fully exposed in Cyprus I get eruptions on my stomach and thighs. I am interested in any forums or taking part in any research which might help, specifically to explore preventative therapies. I've researched some papers online and intend to try Nicotinamide (B3) 3g per day. Does anyone have any experience of preventative supplements/medication? My understanding from my online research is that T Cells, specifically Tregs play a part in the pathogenesis of PLE, and abnormalities in T cell production is prevalent in PLE sufferers. I recall that Covid-19 affects men more than women due to T Cell production and given that most PLE sufferers are women this lends some credibility to T Cell regulators (Tregs) playing a part in UVA immune deficiency. Does anyone have any suggestions or recommendations on preventative therapies? I'm feeling pretty desperate and will try anything! Regards, Andy.

ple is crap
Posts: 1
Joined: Sun Sep 17, 2023 4:31 pm
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by ple is crap on Sun Sep 17, 2023 4:45 pm

Re: Any one with PLE?

I have PLE and react all year round with sunlight and also artificial light, eg phones, laptops, light bulbs etc. The only thing ive found that helps the itch is coolness, topical stuff like steroids work to a point but not something ican use daily so ice packs, hot water bottles with cold water in, cool towels or showers etc are my go to atm. I've tried high dose b3, solar care, light therapy etc but because I'm so sensitive none of it works enough. I'm still flaring in sept from my half dose first light therapy session in march. Oral steroids help but i dont want to have to keep taking them. Consultant is going to try suppressing my immune response a bit to see if that helps so starting low dose methotraxate on thursday🤞

advhccenter
Posts: 290
Joined: Thu Oct 13, 2022 11:50 am
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by advhccenter on Mon Jul 01, 2024 9:05 am

Re: Any one with PLE?

Protein-losing enteropathy (PLE) happens when egg whites and other protein-rich materials spill into your digestive tract. Egg whites is the most plentiful protein in your blood.

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