Hi
I was diagnosed with PMLE about 10 years ago. I've found it difficult to find any support groups for this condition on the net and just wondered, long shot I know, whether there's anyone reading this who shares my condition and would be willing to share tips, good days and bad.
(Just just that back and sorry that it sounds like a dating agency advert! Oops!)
Pam
Hi PamJK,
I don't have your condition, but I have come across these groups:
FB Group: Sun Allergy (Polymorphous light eruption) facebook.com/pages/Sun-Alle...
Support Group for Sun Sensitive People sun1.awardspace.com/
Sun Allergy Online Support Group mdjunction.com/sun-allergy
Patient information:
allergyuk.org/skin-allergy/...
bad.org.uk//site/860/defaul...
dermnetnz.org/reactions/pml...
I hope that someone with PMLE can provide you with further help.
Shell x
Thanks for the links Shell x
I had a differential diagnosis of polymorphic light eruption 15yrs ago, until they decided it was sub-acute lupus. However, they have always said my rash is atypical of the lupus. I have 4 stitches in my back as I write as they've decided to do more investigations. I know its a light related disorder. The rash is everywhere other than my face and hands which get exposed to light. It seems to be drug and corticosteroid resistant. I'll report back.
Many thanks Shell, for the links. Much appreciated.
FunkyMumma - can I ask you what a "differential diagnosis" is and what then happened to make them change to sub-acute lupus. I've not head of that.
Sorry to hear about the rash you have at the moment. Are you in much pain? When I have an episode, it almost drives me to distraction. x
Hi Pam,
A differential diagnosis is the process of elimination when trying to find out what's wrong (e.g. light sensitivity could be PLE.....Jesners disease, Lupus, etc. ). Many diseases present with similar symptoms, so they will put a few options in the frame, then work through the tests to eliminate possible causes. Auto-immune diseases are notoriously difficult to diagnose because they mimic other diseases. They do auto-antibody titres, which can be up one day and not the next - not helpful when trying to establish a cause.
I would imagine they did bloods and checked auto-antibody titres for you? If you don't know what they have done or why they have reached the diagnosis they have, question them. They are Clinicians and sometimes over- simplify what they tell their patients......simply because patient's eyes glaze over when they start getting technical! I would insist that you be copied on every letter that is written about you. It's your legal right....and you might learn something!
Yes, I do itch sometimes. Wish we could post pics on here then I would show you what a mess my skin is.......just to make you feel better about yours
Val x
Hi Pam
I was diagnosed with PMLE about two years ago.
It only affects my face and neck, I get it really bad around my eyes.
How do you cope with it? It's driving me nuts just now!
Lynne
Hi FunkyMumma and Lynne.
Thanks for your replies. As far as I can remember, I didn't have any blood tests when first diagnosed. I was on holiday in Greece and, having always been a bit of a sun-lover in the past and laid out in the sun with factor 8. At the time, that was the highest I ever went!
I can't remember now how quickly it appeared but at some point over the holdiay the rashes developed. I remember my back and arms being particularly affected at the time. My husband held cold packs against my back as it was stopping me sleeping and the cold of the floor in the apartment provided some temporary relief. He made me take one or two of his antihistamines although I was relunctant. I'd never taken any before in my life.
At this point I had no idea what was causing the rash. Was it something they'd washed the linen with, something I'd eaten or something else? However, it wasn't long before I worked out that being in the sun seemed to make it worse so ended up lying in the shade.
We were staying in a very small viillage but about half way through our holiday, we ventured on a day trip to the main town. I popped into a chemist who didn't speak any English and I spoke no Greek. Showed him the rash and he gave me a cream to apply.
When I got back to the UK, I went to see my doctor and took the cream with me. We'd nearly used up the whole tube and my doctor was horrified as he explained it was a steriod cream that I should've applied sparringly. I had no idea. It was then he diagnosed PMLE. And that was that. Suffered every since.
A couple of years later, another rash came up on my back. The first doctor I saw diagnosed scabies for which I had to treat myself and my husband with this lotion. The rash didn't improve and seeing another doctor, he diagnosed contact dermitistis. Ended up going for allergy tests (patch tests on my back) and came away with a long list of things i reacted to. I have since connected my leather sofa (must be some chemical the leather was treated with) that brings up that rash. My point about this paragraph though, is that this was only time I had any blood tests taken but I think that was checking I was not intolerant to something. Can't remember what now.
I'm ok at the moment. I've not been out in the sun - not that we've had much sun to be out in.
When it does flair up, I take painkillers and about 6 antihistamines a day. Doc says I don't have to limit myself to one a day although it's difficult to buy them in quantities because pharmasists tend to be sticklers for the guidance on the packet. (Reminder to self - I must start stock piling for the summer!) I also use protopic cream on the rash itself, keep covered up and wait it out for a few days until it subsides. But it does hurt and it does make me cry. The other thing I've discovered is that once it has flaired up, I can't put any sunscreen on at all. That just makes me come out in another rash and my face swells. Not a good look. At least it calms down quite quickly on washing it off.
Sorry for the long, rambling post. Thank for you staying with me if you've got to the end. it's great to be able to share at long last.
X
Hi Pam
Don't apologise. I hope you feel a little better for sharing. My spirits rose yesterday when I saw your post. Really they did. I've felt like a bit of a freak these last two years because no one I know has ever heard of PMLE.
I think mine started after taking arthritis medication. A side effect is sun sensitivity but I didn't know that at the time. We were on a cruise in the med and the skin around my eyes became red and swollen. Visited the ship's doctor who said it was eczema and prescribed steroid cream which worked a treat. Then over the next 18 months and many visits to my GP and blood tests was diagnosed with PMLE. More steroid cream and the only practical advice was 'wear a big hat' - not a great look in the checkout at ASDA
Up to a few weeks ago it only affects my eyes but now it's most of my face and neck. I seem to be allergic to lots of sunscreens, moisturisers and make up and through trial and error and lots of googling I found Fernblock sunscreen which is for sun sensitive skin. I've tried the 50spf but just moved onto the 90spf as I was still getting flares even in the weakest winter sun. Not sure how it'll work out but will keep you posted.
I've just started taking antihistamine but only one a day. Interesting that you take six. I wonder if I should up the dose.
I've had such a lack of support from my GP I've made an appointment with a dermatologist and I see her next week. Can't wait. Just hope she can help.
Well Pam that's my long ramble. Thanks again for sharing.
Lynne x
Hi Lynne.
Apologies for not replying last week. We've been away for a long weekend.
It's great to talk about the condition with someone who understands, isn't it? My husband is very supportive and when we're on holiday, he stays out of the sun with me without complaining which is great.
Have you been to the dermatologist yet? I've got an appointment next week at the hospital. Think my GP has referred me for light therapy but he's given me no information whatsoever. They're hopeless, aren't they? It so frustrating. I've no idea what to expect!
Pam x
Hi
I too am looking for a fellow PMLE sufferer to exchange experiences with, the vast majority of people Think this is a hypochondriacs condition only, I have certainly never met anyone with PMLE in person and it makes coping with it far more difficult when you can be so utterly alone in your understanding of such a heartbreaking condition.
It took me a decade to get a doctor to take me seriously, the last few summers i had been confined indoors and the last summer holiday i took in 2009 was a nightmare. i got a radh after spending no more than 15 mins in the sun which spread over my whole body and lasted weeks. It stayed on my feet which looked like a miniature mountain range for 3 months. I was at breaking point when I had once again been told it was heat rash and take some Piroton, which does nothing to help, when my fiance's mum who is a nurse pulled some strings to get me a referral to a Dermatologist at a hospital.
I believe this is the turning point for me, the dermatologist knew immediately what I had, and agreed antihistamines have no effect as steroids rarely do either. I am now on my second course of phototherapy, I have 12 sessions in spring to thicken the skin and desensitise it to UV rays. I also try to get small doses if exposure to early spring sunshine to desensitise naturally. It's not always easy to fit in especially with British weather but it is so refreshing to be able to do something rather than be helpless and hopeless.
Unfortunately I don't think there will ever be a miracle cure but I believe this treatment is really helping, my advice is to fight for a referral to a dermatologist and don't resign yourself to a life indoors, sure I have bad days still but even with such severe PMLE as mine there is ways of improving quality of life considerably.
Wishing you the best of luck in your battle with this infuriating for
Becky
I am new to.this forum. I was diagnosed yrs ago with.PMLE. Right now, I have it on my face. I wonder why it is very itchy and it will be scaly and very dry. I am taking Heliocare, beta carotene. Vit C and Vit E. My
dermatologist put me on chloroquine whi
ch I think doesn't help at all so I stopped. I am using Clarins as my moisturizer and also SPF.I use UPF to protect my skin. IThey say Paleo diet helps, but I haven't tried
I was diagnosed with PMLE a few years ago. My case is not as severe as others as it only affects my face. I have done a lot of reading and experimenting and here are a few things that have helped me. Mainly doing away with a lot of chemicals... I wash with African Black Soap (I like Alaffia or Nubian Heritage brands). I use a mixture of organic oatmeal and dry milk as a mask on the affected area (grind it together in a blender), this helps to sooth and calm. I keep a jar in my bathroom and mix a bit with water and apply as needed. I only use Aveeno shampoo that is sulfate free (or an organic shampoo). And when I do go in the sun I use La Roche Posay Anthelios Extreme Fluid sun bock. I have also found what I think is a miracle and it is Shurido AGR + E antioxidant moistuizer. It contains alpha-glucosylrutin (AGR) which is suppossed to help the skin and is made for sun allergies. I do still use my Clinique Dramatically Different moisturizer in combo (I mix the two together). I love Clinique and it is the only moisturizer I can tolerate and I have used it for years. I also apply Noritate in the morning and Finacea at night (prescriptions). When I have a breakout I will also use locoid lipocream (prescription) and this can help clear things up pretty quickly, but you can only use sparingly. I hate medications so that is my last resort after trying aloe oil of calendula. I went to Aruba in November and was so worried. I went armed with my stuff and applied the Shirudo througout the day along with the sunblock. Washed with the Afircan Black soap and oatmeal mask and barely saw a bump. Oh - and dont forget the hat!!!
HI everyone! I was diagnosed with PMLE about 10 years ago. I am 22 years old and from Alberta, Canada. The first time I got the rash was 10 years ago on a family vacation to Hawaii. Since then, every summer I get the rash on my hands (extremely bad) arms, feet and my chest too. Even throughout the winter the rash will come randomly on my hands.
As I type this, I keep moving one hand to scratch the other. Does anyone have any advice of things to use to make it go away and stop itching? I have tried steroid creams, reactine which is antihistamine, lotions, everything. 
I too have pmle and have had it for about 20 years. I realise now the cause and best treatment for me. It started because I was getting into my car in the shade, driving to work and parking in the shade. Reverse on the way home. When the weather was nice I wanted to be out in the sun. This caused a serious reaction with swollen red burning itchy face. The problem was I was not building up the suns rays. A doctor told me you do your desesitisation in February so from February onwards I make sure I am outside most days. Now I can be out in the summer months although i avoid going abroad. Hope this helps.
My daughter has received total healing of PMLE by God's grace. God worked through a friend and a farmer who told us about raw milk and kefir made from raw milk. We drink kefir everyday that we make at home with our raw milk. Please look into this. It heals an overworked immune system from the inside out and doesn't just mask the symptom. Her restored health is a blessing, as now she can play outside again and swim and be a normal kid. Kefir and raw milk are natural gifts from God. Please try it!
Hi Pmlegone,
Do you have to make raw milk kefir or can it be made with something else? Sorry I’ve not made it before.
Thanks
We have family members who make kefir with the grains we gave them with store-bought milk. I can't speak to the healing properties of kefir made with store-bought vs. raw milk, but it is worth a try if you cannot access raw milk depending on the state you live in. Feel free to send any questions my way...we want to help others experience healing with kefir!
Thank you
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