I stumbled upon a recent article while researching PMLE, so I thought it was about time to update this thread.
Here is the article, if someone wants to read it all, but I will post the highlights.
http://emedicine.medscape.com/article/1119686-treatment
What the main things were that worked are mostly the same as what I have trialed myself.
In a randomized, double-blinded, placebo-controlled clinical study by Hadshiew et al, the efficacy of a new topical formulation was compared with a broad-spectrum sunscreen.[38] The new product contained 0.25% alpha-glucosylrutin (a natural, modified flavonoid) and 1% tocopheryl acetate (vitamin E). Thirty patients with a history of PMLE were pretreated with the formulations 30 minutes prior to daily photoprovocation with UV-A irradiation of 60-100 J/cm2 to the upper arms.
I have found a product called Shirudo AGR+E
https://www.shirudo.com/collections/all/products/agr-e-lotion-tube-250ml that has both of these ingredients. I just bought my second bottle, so I am hoping to get some natural vitamin D this summer! It is expensive, but so worth it. Also of note with Shirudo, I have seen positive reviews from people that get rash upon immediate exposure, and people like me that get hives 48 hours later. My daughter put some on a bug bite that had been driving her crazy and it quit itching almost immediately. So this might work for more people than PMLE alone. I think it could help Irene?
It also mentions
Gruber-Wackernagle et al evaluated the preventive effect of a cream containing calcipotriol (an analog of calcitriol, 1,25-dihydroxyvitamin D3)
I have not looked for this, it isn't the same D3 that I take. That is all I know.
DeLeo et al reported that sunscreen with 4 UVA filters (ie, ecamsule 3%, octocrylene 10%, avobenzone 2%, and titanium dioxide 5%) was more effective for preventing PMLE flares than a sunscreen with a triad of UVA blockers.
Avobenzone is what I always try to find in sunscreen. 2% is hard to find in low SPF, but 2% is common in most Banana Boat sunscreen, as well as apparently it can be found in European formulas.
Antimalarials at low doses are sometimes helpful, especially in patients with a large papular variety of PMLE. Beta-carotene, which is effective in erythropoietic protoporphyria, may be an alternative to chloroquine.
I just started back on beta carotene yesterday. Interesting that it is comparable in effectiveness to chloroquine. I have heard that some people with ME/CFS respond well to antimalarials?
And last thing I need to look into:
Nicotinamide was successful in 60% of 42 patients treated with 3 g/d orally for 2 weeks.
Here comes the sun! Da-da-da-da daaa!
