Allergy to the sun: I have been diagnosed with solar... - MY SKIN

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Allergy to the sun

skinnylynne
skinnylynne
27 Replies

I have been diagnosed with solar urticaria and have tried all sunscreena, all combinations of antihistamines and Xolair injections, (which worked for a short time then quit working.) Has anyone tried PUVA (photosensitivity treatments) or low dose naltrexone? All I can do is wear many layers of clothes and stay away from the windows. Does anyone know any other sites that can help?

27 Replies
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mena52

Following this as my polymorphic light eruption has returned due to the pollution levels raised in UK because of the unexpected sunshine we are having. Hope you get some relief soon.

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Alexis13

Hi there

I have tried the light therapy in the hospital it's supppse to help you desentise to the uva and uvb Rays.

Is that what you are allergic to?

The Rays?

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skinnylynne

Yes, I have been patch tested and react quickly to UVA (seconds) which cannot be controlled by creams and goes through windows and clothes. Potential reactions to other medications have been ruled out and Xolair has stopped working. I am wondering what other options might be out there.

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Alexis13

My dermatologist has put me on 200mg of hydroxychlorquine which is helping me a bit

Only been on it a few months now but thankfully I have improved slightly

It's a tough gig.

I wear sunglasses during the day.

Do fluroscent lights affect you?

Try to stay positive I know it's not easy but I am hoping it will go away just like it came overnight

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skinnylynne

I have had it nearly 3 years now . .gone through many doctors. Fluorescent lights do not bother me. I am o.k. indoors as long as I stay away from windows. I have bought block out shades for most rooms and have to go around closing windows if Iwant to be in those rooms. I thought Xolair injections was going to be the magic bullet . .and it was for about 6 months. What is your diagnosis? I definately have SU, not PLE.

You said you had hospital photo sensitivity treatments. Did it help?

Hydroxyclorquine is for cutaneous porphyria, isn’t it? Has that been your diagnosis?

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Alexis13

Actinic Purigio

Allergy to uva, uvb Rays, flour scent lights

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skinnylynne

have not heard of that one . . .I read it is in the polymorphous light eruption (PLE) family. I am so sorry . . It sounds quite debilitating for you . . .

Did you say you tried photo light therapy (i.e desensitivity)?

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Alexis13

Can you work with your condition?

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skinnylynne

. .fortunately I retired a few years before this started. I am 66. I would have to wear long sleeves including gloves if I were anywhere near windows. Florescent lights are o.k.

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Alexis13

How long have you had it?

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Alexis13

Are you still able to work?

What else do you do to have a normal life?

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lillyofthevalley37

You could try GABA to bring down your Ige levels

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Alexis13

What is Gaba

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lillyofthevalley37

GABA is a neurotransmitter that can bring down Ige levels which are indicative of allergic reactions

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skinnylynne

How does one “try GABA” to bring down ige levels? Can you give me an example as to how to bring down these levels? Medication? Supplements?

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lillyofthevalley37

Allergic reactions will show high Ige levels if you had a blood test

by trying to bring down the Ige levels you would hopefully lessen the allergic response

Given your age the first thing I would try is progesterone cream it takes a while to kick in but could be very beneficial to you the reason why I suggest progesterone is that you could be estrogen heavy and estrogen promotes allergies progesterone counters estrogen and stops allergies

GABA can be bought online I recommend the brand Swanson other things can bring down Ige levels chlorella for example

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Alexis13

Where do you buy progesterone cream?

Is there a name for it?

Thanks

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lillyofthevalley37

I can only vouch for the Biovea progesterone cream which I have used which you can buy from Biovea online they also sell it on eBay

Check out DHEA if you have dry skin / eczema because it makes your skin oily and eradicates most of the horrible symptoms of eczema ie itching

Again I can vouch for Biovea DHEA I only have a low dose of DHEA 10 mg per day

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skinnylynne

Thanks very much lillyofthevalley37 for your helpful ideas. I have not heard of GABA supplements and it sounds like something I could try. I don't know I could be estrogen heavy having been post-menopausal plus having had ovaries and uterus removed 3 yrs ago. I would still be happy to try progesterone supplement if it would help stop allergy reactions. Thanks again-

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lillyofthevalley37

You are probably not producing any progesterone Biovea progesterone is v good the best GABA I have tried is the Swanson brand on ebay I have 2 x 500mg capsules at bedtime sometimes have 500mg in the morning too

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skinnylynne

Do you find this (GABA, progesterone) directly helps your allergy reaction . . .your sun allergy especially? Do you think there is any connection that my solar urticaria started within a few months after having ovaries removed? (both 3 years ago) No one has ever suggested this may be related. Thanks again . . .

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lillyofthevalley37

I think you can't produce progesterone if your ovaries are removed but estrogen is still being produced so it's likely you are estrogen heavy and estrogen does promote allergies progesterone will moderate the estrogen and keep it in check

The first thing I would do if I was you would be to buy some progesterone cream

I can't promise anything but you should absolutely give it a try

Also try GABA and DHEA see how you get on

My story is not so straight forward - I stupidly had some rhodiola for approx a month which triggered my immune system into manic red alert resulting in all sorts of skin disorders including sensitivity to the sun - I have done lots of research and want to share it because it really is horrendous what people with skin disorders, allergies etc have to go through many commit suicide people have no idea - I digress , but estrogen is often the cause of allergic skin reactions and it mainly effects women , there was a good article in the telegraph online if you type in "sex hormones allergies telegraph " it might come up

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L1974

Hello I know it’s been a while since you posted this but I think I may have this condition also? I’ve always been able to tan my skin without worry and even at Easter time when it was nice I sat out in the sun and was fine. Since then I’ve been reacting in that I am getting red patches on my skin that disappear when I get out of the sun. There is no itch or raised patches. I am going to Spain in a month and must admit am dreading it. I am taking fexofenadine 180mg for rhinitis so do have other allergies though have had them all my life practically and I am 44 now. What sun creams have you tried and have you tried to tan or does your skin just get worse and worse?? Thanks Louise

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skinnylynne
skinnylynne
in reply to L1974

I have been tested and it is UVA only which does not respond to sunscreens (despite what the creams say). So don’t bother using them. People with other types of reactions say that Eucerin Sun Allergy Gel is good, but not available here in the USA. There are a few facebook groups for sun allergy if you are interested in checking the site. To answer your question . . .repeated sun exposure just gets worse and worse.

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L1974
L1974
in reply to skinnylynne

Hi thank you for responding. Does your skin react with raised bumps and itching? Just ask because mine doesn’t just red patches. Saw my doctor on Friday and she is writing to dermatology as she isn’t sure that it’s solar urticaria??

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skinnylynne

No raised bumps just bright red patches that burn and itch. I usually have to put ice packs on them for the burning. Feels like a burn from the oven rack if you touch it by accident. After about 1 1/2 hrs it is gone and no traces left on the skin at all. I can not have any skin show when I go outside . .anywhere on my body or I will react in under a minute, Does that sound like you at all?

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L1974
L1974
in reply to skinnylynne

Hi so sorry it’s taken me a while to respond your response never showed! I react pretty quickly but my arms seem to have hardened a bit and aren’t reacting as much. I’ve not tried my chest area yet but in Spain next week so probably find out the full extent then. I’ve not got itching or burning but have come out of the sun as soon as I’ve had a reaction so does that stop the allergic reaction? Does it affect your face even?

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