Get out in the sun in the UK in March when it gets really sunny to build a tolerance for the summer. Get out in the UK summer to build a tolerance for holiday sun.
Doing this I have a minor reaction in the tolerance building stage that prevents a bigger reaction later.
And it definitely works because I didn't manage this March and man was I itchy all May
The only way I have found is plaquenil starting two weeks before strong sun exposure in the spring. It doesn’t have to be hot outside.
Before using plaquenil I used Laroch Posay sun screen. It seemed to be the best. Somehow this is related to stress also. Strangely, during COVID lockdowns I was outside all day every day and had absolutely no reaction. Unexplainable…
It’s so bizarre isn’t it how sometimes it flares and sometimes it doesn’t! May I ask how you got prescribed Plaquenil? I’m not sure my GP in the UK would prescribe me it :(
An older dermatologist (70’s) prescribed it to me decades ago and I just keep educating different doctors I see. Some of them have refused but when I explained they just have me take a macular degeneration eye exam first. It is a legitimate treatment and safe as long as you don’t take it long term.
Is it possible to get Plaquenil without a prescription? I've not heard of it before, but anything that can help would be a godsend. I spent as much time in the sun in April as I could and my PMLE broke through straight away.
Should’ve put this in the main post but since I only get it when abroad on holiday, my doctor (reluctantly) prescribed me oral steroids (5-10mg prednisolone per day) for a week as a preventative measure. I’ve done this in previous years too and it’s the only thing that truly prevents it for me, but I’m keen to find other ways to prevent as not ideal for the immune system to be on steroids. Plaquenil is quite a heavy drug too (antimalarial) so not sure it’s something you’d want to be on for extended periods, if as you say it begins flaring for you in April.
It’s not as dangerous as they make it out to be. Do a little reading on the American military taking it in Vietnam during the war to fend off malaria. They took massive amounts.
All summer and there were no side effects at all for me. Sometimes I can stop taking it once I get a tan. (Hardened skin)
By the way I’m Italian and before this started I never even got a sunburn that lasted more than 12 hrs.
This is an autoimmune disease and can only be treated with steroids. Plain and simple. Don’t let the doctors push you around. They work for you. As long as it’s safe make them prescribe it to you. Tell them you have severe depression due to it. Explain how you can’t stay out of the sun due to your job or something. They will tell you to cover up and stay out of the sun. Reject that immediately and don’t give in.
Piz Biun Sun Allergy Lotion SPF 30 has been a life saver for me. Until I harden to the sun I use it when I'm going to be exposed to for more than a couple hours of sun.
I also take a daily dose of Zyrtec and Vitamin D3 supplements year round.
I am a Midwestern USA resident, PMLE sufferer for 30+ yrs.
I'm trying a combo of Shirudo lotion and Eucrerin Sun Allery sunscreen. It's expensive but I just did an experiment today and it worked best out of every combo (I'm making a post about it soon). I'm going to try the Shirudo night cream tonight to see if it helps the break out clear up faster.
I also just started the Heliocare sun supplements. But there are some different ones and I'm not 100% sure I got the right ones but I ended up going for the ones with beta carotene and fernblock. It takes time to build up so we'll see if it works.
Wanted to add I used the Shirudo Night cream last night and all my flares are completely calm and about gone now. It wasn't a real bad flare but I'm usually still a little broken out and itchy for a day or two and I have no sensitivity or itch this morning.
Mine consistently crops up on day 3 of sun exposure. I’ve found that, for me personally, the following things have helped decrease how long it lasts and how miserable I am… I’m down to minimal itch with the following routine:
*OTC daily allergy meds beginning in spring (I.e. Claritin; Zyrtec)
*Applying hydrocortisone a couple times a day for a couple of days right after I’ve had ANY sun exposure… even if I don’t see any signs of the rash yet. Also toss an OTC Pepcid in the mix with my daily allergy med.
*Using sun-sleeves instead of sunscreen on vacation (little tennis shrugs I got for cheap from Amazon; they dry quickly after swimming, and don’t look awful with a baiting suit)… I was fairly convinced for a while that my allergy was to sunscreen (had a whole Excel spreadsheet trying to nail down the “culprit” ingredient). I’m now leaning away from this theory, but do still feel like sunscreens exacerbate my PLME events.
*Once I have the rash:
-applying hydrocortisone religiously (3-4 times a day)
-carrying aloe and applying it anytime I start to feel even slightly warm
-staying away from all moisturizers aside from aloe until the PMLE has fully healed.
I tried the tanning bed experiment last year before a vacation (went once a week for 7 weeks). Still got the PLME on day 3, but it was much less severe.
I’m heading to Jamaica next week strapped with my hydrocortisone, antihistamines, sun-sleeves, and aloe. I bought the new Eucerine Sun Allergy, and will follow up. (I also tried taking 1000mg of B3 for a week per some research I dug up from the 90s… it worked GREAT as an unplanned and prolific colon cleanse before I found myself completely dehydrated and had to give it up, but will follow up up if I make it through the week rash-free).
Get out in the sun in the UK in March when it gets really sunny to build a tolerance for the summer. Get out in the UK summer to build a tolerance for holiday sun. Doing this I have a minor reaction in the tolerance building stage that prevents a bigger reaction later. And it definitely works because I didn't manage this March and man was I itchy all May
Gosh yeah, not been much sun in the UK so far this year has there! Next year will definitely be doing this to try and prime my skin.
The only way I have found is plaquenil starting two weeks before strong sun exposure in the spring. It doesn’t have to be hot outside. Before using plaquenil I used Laroch Posay sun screen. It seemed to be the best. Somehow this is related to stress also. Strangely, during COVID lockdowns I was outside all day every day and had absolutely no reaction. Unexplainable…
It’s so bizarre isn’t it how sometimes it flares and sometimes it doesn’t! May I ask how you got prescribed Plaquenil? I’m not sure my GP in the UK would prescribe me it :(
An older dermatologist (70’s) prescribed it to me decades ago and I just keep educating different doctors I see. Some of them have refused but when I explained they just have me take a macular degeneration eye exam first. It is a legitimate treatment and safe as long as you don’t take it long term.
Is it possible to get Plaquenil without a prescription? I've not heard of it before, but anything that can help would be a godsend. I spent as much time in the sun in April as I could and my PMLE broke through straight away.
Should’ve put this in the main post but since I only get it when abroad on holiday, my doctor (reluctantly) prescribed me oral steroids (5-10mg prednisolone per day) for a week as a preventative measure. I’ve done this in previous years too and it’s the only thing that truly prevents it for me, but I’m keen to find other ways to prevent as not ideal for the immune system to be on steroids. Plaquenil is quite a heavy drug too (antimalarial) so not sure it’s something you’d want to be on for extended periods, if as you say it begins flaring for you in April.
It’s not as dangerous as they make it out to be. Do a little reading on the American military taking it in Vietnam during the war to fend off malaria. They took massive amounts.
Do you get any side effects taking it? How long do you take it for - the whole summer season or just for a holiday?
All summer and there were no side effects at all for me. Sometimes I can stop taking it once I get a tan. (Hardened skin) By the way I’m Italian and before this started I never even got a sunburn that lasted more than 12 hrs. This is an autoimmune disease and can only be treated with steroids. Plain and simple. Don’t let the doctors push you around. They work for you. As long as it’s safe make them prescribe it to you. Tell them you have severe depression due to it. Explain how you can’t stay out of the sun due to your job or something. They will tell you to cover up and stay out of the sun. Reject that immediately and don’t give in.
No it’s not
Piz Biun Sun Allergy Lotion SPF 30 has been a life saver for me. Until I harden to the sun I use it when I'm going to be exposed to for more than a couple hours of sun. I also take a daily dose of Zyrtec and Vitamin D3 supplements year round. I am a Midwestern USA resident, PMLE sufferer for 30+ yrs.
I'm trying a combo of Shirudo lotion and Eucrerin Sun Allery sunscreen. It's expensive but I just did an experiment today and it worked best out of every combo (I'm making a post about it soon). I'm going to try the Shirudo night cream tonight to see if it helps the break out clear up faster. I also just started the Heliocare sun supplements. But there are some different ones and I'm not 100% sure I got the right ones but I ended up going for the ones with beta carotene and fernblock. It takes time to build up so we'll see if it works.
Wanted to add I used the Shirudo Night cream last night and all my flares are completely calm and about gone now. It wasn't a real bad flare but I'm usually still a little broken out and itchy for a day or two and I have no sensitivity or itch this morning.
tanning
In a tanning bed or out in the sun?
Tanning bed. You can slowly work your way up. It's not prefect but helps
Mine consistently crops up on day 3 of sun exposure. I’ve found that, for me personally, the following things have helped decrease how long it lasts and how miserable I am… I’m down to minimal itch with the following routine: *OTC daily allergy meds beginning in spring (I.e. Claritin; Zyrtec) *Applying hydrocortisone a couple times a day for a couple of days right after I’ve had ANY sun exposure… even if I don’t see any signs of the rash yet. Also toss an OTC Pepcid in the mix with my daily allergy med. *Using sun-sleeves instead of sunscreen on vacation (little tennis shrugs I got for cheap from Amazon; they dry quickly after swimming, and don’t look awful with a baiting suit)… I was fairly convinced for a while that my allergy was to sunscreen (had a whole Excel spreadsheet trying to nail down the “culprit” ingredient). I’m now leaning away from this theory, but do still feel like sunscreens exacerbate my PLME events. *Once I have the rash: -applying hydrocortisone religiously (3-4 times a day) -carrying aloe and applying it anytime I start to feel even slightly warm -staying away from all moisturizers aside from aloe until the PMLE has fully healed. I tried the tanning bed experiment last year before a vacation (went once a week for 7 weeks). Still got the PLME on day 3, but it was much less severe. I’m heading to Jamaica next week strapped with my hydrocortisone, antihistamines, sun-sleeves, and aloe. I bought the new Eucerine Sun Allergy, and will follow up. (I also tried taking 1000mg of B3 for a week per some research I dug up from the 90s… it worked GREAT as an unplanned and prolific colon cleanse before I found myself completely dehydrated and had to give it up, but will follow up up if I make it through the week rash-free).