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PMLE? (Sun Allergy)

Strawberry

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I am curious if there are many people with sun allergy at PR? I did a search for PMLE and only found one post. I know it is very common with Lupus, but that was ruled out for me.

I think my real question, is if there are enough people with this issue, could we create a group?


(and for those that don't know what it is: http://www.mayoclinic.org/diseases-...light-eruption/basics/definition/con-20030452

Polymorphous light eruption, also known as polymorphic light eruption, is an itchy rash caused by sun exposure in people who have developed a sensitivity to sunlight (photosensitivity). The rash usually appears as red, tiny bumps or slightly raised patches of skin.

Polymorphous light eruption occurs most often during spring and early summer when a person's exposure to sunlight increases. Repeat episodes are less likely as the summer progresses, but polymorphous light eruption often recurs each year after the first incident.
 

IreneF

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I've occasionally had it, but I'm housebound now so I'm not exposed to the sun. I'm also fair-skinned (I never tan).

The last time I went for a hike I got wheals on my exposed skin plus shortness of breath. (That was about seven years ago.) I headed back to car and rested until my companions returned, and my symptoms went away.

I got it as a kid, too, so it's not a new condition. I think the ME/CFS just exacerbated it.

It's not an issue for me at present because I don't do anything that induces it.
 

Strawberry

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Since you and I are the only ones that responded, I am going to assume this isn't a wide spread issue with ME/CFS. I have been wondering about what my trigger could be, but this makes me think it was older. I had my first PMLE outbreak at age 14, although it wasn't diagnosed until age 40. I am now wondering if it could have been the blood transfusion at age 19, as I didn't have MCS and fatigue issues before that. And MCS definitely seems to be popular amongst ME/CFSers!
 
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@Strawberry
Yes! I can't let the rays of the sun touch my face. It turns red instantly. Too fast to be a sunburn. I know another person who has this problem but she doesn't have ME/CFS to my knowledge. We can always PM about it if there aren't enough people for a group.

And I'm actually not 'goth' despite my profile picture. I just have to live like one! :D
 

IreneF

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What I got was definitely an allergic reaction. I don't know if all photosensitivity is allergic.

I also got sensitive to sunscreen. I now use Paula's Choice or something my daughter picked up in France when I have to go out.
 

OverTheHills

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I had this for many years from late teens (decades before I got ME) I got some treatment for a couple of years which was difficult and unpleasant but helped (PUVA). After that made sure I got as much sun exposure during the winter as I could and I didn't really have too many problems.

I don't think PWME should try the PUVA treatment.

I believe sun sensitivity which starts immediately after exposure is a different thing to PMLE.

OTH
 

Strawberry

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What I got was definitely an allergic reaction. I don't know if all photosensitivity is allergic.

I also got sensitive to sunscreen. I now use Paula's Choice or something my daughter picked up in France when I have to go out.
Check the ingredients in the sunscreen for avobenzone? That actually is good at blocking PMLE. It is easier to find in Europe than the US.....

For the record, my hives don't start until about 24 - 48 hours of sun exposure. About the same time frame as my PEM. Although I do get immediate rash. But even if rash isn't PMLE, it is similar in treatment @OverTheHills in my opinion.

Is 4 (so far) enough people to start a group? Or should we just post tips here? I have many. :balloons:
(@L'engle your bat is adorable!)
 
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OverTheHills

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Just a clarification @Strawberry, treatments for hives/skin rashes once you have them are not what I was talking about.

The PUVA treatment is preventative, a sort of desensitisation. It involves heavy duty liver-toxic drugs and graduated exposure to a different wavelength of ultraviolet light twice a week over 6-8 weeks in a hospital sunbed type machine in the dead of winter. You have to sign disclaimers about skin cancers and the drugs made me feel pretty nasty as a healthy person in my 20s. Thats why I suggested it would be a no-no for PWME.

I realise sun sensitivity probems are no fun at all, having been there myself, Good luck with your group if you go ahead.

OTH
 

Strawberry

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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!