SOLAR URTICARIA
An allergic reaction to sunlight including UVA and UVB
Coping with SU
Coping with SU can involve sun screen, clothing choices, medication and alterations to your car and home.
Clothing*
Our members find that 50 UPF/UVP or higher works best. Lower #’s work exponentially less. If covering up makes your condition worse it could be an indicator of additional issues like heat urticaria or others. We are all different.
Lastly, we do not endorse any of the brands or companies--Often the products work and are life saving; but sometimes they leave polka dotted sun rashes on our legs.
We invite companies to work with us to develop effective protection.
Coolibar.com - site dedicated to sun-protective clothing and accessories
Sun Precautions- site dedicated to sun-protective clothing and accessories
REI.com (choose sun-protective fabric in filters)
Columbia.com (choose Protected in the filter to find clothing for sun protection)
Merino Wool Clothing ( yes wool!)
Athleta- Gap UVP Clothing for women and girls
Mott50- (women & kids) a bit on the stylish & expensive side
LLBean- search UPF for easiest shopping
Hanes- Cool DRI t-shirts have UPF 50
Lands End- (very small selection of UV clothing) search UPF for easiest shopping
Water/Active Wear:
Solartex- also has a large kids & sun accessories sections (full/half sleeve gloves, hats)
UV Skins- UV50 clothing including non-water wear
SlipIns- UV60 water and yoga wear that can fit easily(?) under clothing
Mechanix- Work gloves that aren’t exactly stylish but protect well and are comfortable in Florida type heat. Very good for driving. “Specialty Vent” provide the best airflow.
Fabric and Patterns:
Rockywoods has stretch and woven SPF 50 fabrics by yard. Available in prints and solids.
Patterns for Pirates Arrrgh Matey lots of PDF patterns (very nice and non-piratey)
Sunscreens:
The bottle should say SPF/UPF 50 (at least) and list both UVA and UVB protection (broadband UVAB is even better). The difference between UPF 40 and 50 can be dramatic.
The use of Tints, Titanium or Zinc dioxide (the white stuff lifeguards put on their noses/cheeks) are referred to as Mineral based. Helioplex types are mixes of Avobenzone, Homosalate, Octisalate, Octocrylene, or Oxybenzone sunscreens. Both types have been recommended by members. In other words, try them until you find something you like. The Titanium or Zinc dioxides can be found in a “nano” form and/or mixed with a tint so you don’t look like a ghost. Every sunscreen listed has its benefits and drawbacks.
Search the product name in the group to see what experiences members have had with them before buying. Opinions vary by brand, chemicals/minerals used, and skin type.
Prices vary wildly between brand and especially where you buy it. Shop Shop Shop
All products below indicate that they provide broadband UVA/B protection
La Roche-Posay Anthelios 50 Mineral Cory’s current choice (mixed results w/others)
EltaMD UV Daily Broad-Spectrum SPF 40
SUNFORGETTABLE BRUSH-ON SUNSCREEN SPF 50
Shiseido Urban Environment Tinted UV Protector SPF 43
AMBRE SOLAIRE SENSITIVE SUN CREAM SPF50+ indicates infrared protection also
Ultra Sheer Liquid Sunscreen Broad Spectrum SPF 70 Helioplex
HAWAIIAN TROPIC SHEER TOUCH ULTRA RADIANCE Sparkle like a Twilight Vampire & smell like a pina`colada
Uvistat Sunscreens UK product (SPF50 @ bottom of page) $$$
Ulta Australian Gold Tinted Mineral lotion SPF 50
Kiehl Super Fluid Daily UV Defense SPF 50
Solait SPF50 Transparent Sun Spray Cheap too!!
Nivea Sun and Protect SPF50 (UK but available elsewhere especially as “Kids” version)
Neutrogena- Broad spectrum 70-100 SPF
Bioderma Photoderm- SPF 30-100 Sensitive version is specifically for people with sun issues. There are many versions, choose based on your symptopms and application needs.
Medicines and Therapies
(WARNING THIS IS NOT MEDICAL ADVICE. THIS INFORMATION SHARED IN A FACEBOOK GROUP; IT’S ADMINISTRATORS AND PARTICIPANTS, ARE NOT MEDICAL PRACTITIONERS AND ALL INFORMATION IS FOR RESEARCH AND DISCUSSION PURPOSES ONLY. DO NOT TAKE ANYTHING or CHANGE YOUR CURRENT TREATMENT WITHOUT FIRST DISCUSSING IT DIRECTLY WITH YOUR TREATING DOCTOR. SU CAN RESULT IN ANAPHYLACTIC SHOCK AND SHOULD BE TREATED WITH SERIOUSNESS)
IMPORTANT: When your doctor recommends a new drug ask what its original or primary (Labeled) use is (some are asthma, depression, epilepsy, or GERD meds being given for off-label use, which is very common), what side effects can be expected, the frequency and severity of side effects, and possible interactions with other medications you take. Then ask the pharmacist the same questions.
DO NOT experiment on your children. If you want to blindly take the advice of other members without speaking to a doctor, you’re an adult, do your research and suffer the consequences if you misstep.
It’s a lot easier for adults to recognize, analyze, adjust, and tolerate the changes and side effects of medications. However, adults should still work with their doctors.
BUT
Children do not possess the ability to communicate the intricacies of side effects. Even older children.
Antihistamines (and other drugs we use) have varying and much of the time extremely serious side effects in children. Pharmaceutical therapy can absolutely be helpful but needs to be closely monitored and tailored to suit each child by a doctor.
Many doctors will refuse to prescribe or recommend any medical intervention.
My observations, from the group, is that this is because they either don’t understand the seriousness of SU or have inherent biases against these medications in kids. If you are unable to curb the symptoms of SU in your child
*Links for specific drugs are all to rxlist.com- Consumer Section, for ease of comparison.
Antihistamines- (May have to be taken in doses much higher than normal. This can create serious side effects in many {including me}. Consult a doctor first! Not something to try on your own. )
H1 antagonists- Wikipedia (Wiki is a publicly edited site and information should be taken as such)
1st Generation (causes drowsiness) Treats Allergies+
Brompheniramine (Dimetapp Cold and Allergy Elixir)
Chlorpheniramine (Chlor-Trimeton)
Dimenhydrinate (Dramamine)
Diphenhydramine (Benadryl Allergy, Nytol, Sominex)
Doxylamine (Vicks NyQuil, Alka-Seltzer Plus Night-Time Cold Medicine)
Hydroxyzine (Vistaril)
2nd Generation (non-drowsy) Treats Allergies
Loratadine (Alavert, Claritin)
Cetirizine HCL (Zyrtec [US] Reactine [CA]- can
make some drowsy, consider taking at night
Fexofenadine (Allegra)
Cetirizine hcl lasts 28-30 hrs vs 21-24hrs
for Loratadine and Fexofenadine. Especially
useful info if you have year round regular
allergies as the shorter acting meds leave a
window for congestion to set in daily. It also
interferes with depression medications.
H2 antagonists- Wikipedia (Wiki is a publicly edited site and information should be taken as such)
Treats GERD, IBS, Acid Reflux
nizatidine (Axid)
famotidine (Pepcid, Pepcid AC)
cimetidine (Tagamet, Tagamet HB)
ranitidine (Zantac)
Leukotriene antagonist- Wikipedia (Wiki is a publicly edited site and information should be taken as such)
Treats Asthma
montelukast sodium (Singulair)
Heliocare with Fernblock - a daily supplement from the Polypodium Leucotomos fern which claims to protect, repair, and care for skin against free radicals and sun exposure. SU members are split on its effectiveness. Some have had good results, so have seen no effect at all. There is a Heliocare Ultra D which contains only a tiny amount of Vitamin D (5ug=200IU), Vitamins C & E. Personally, I stopped taking it.
Xolair- Mentioned often in the group. This monthly injection (or more per individual treatment) is used when other drug or combination drug therapies don’t work. It is not a jump-to drug. It does, however, work effectively on many- often in conjunction with other therapies/drugs. It is very expensive, covered by some insurance, can be difficult to get under some countries Universal Healthcare systems, and like many other pharmaceuticals has a coupon available from the manufacturer with lots of conditions. Google Xolair before you start treatment. Side effects are a concern.
Cyclosporine- as an strong immunosuppressant, this is a drug usually left for severe cases that don’t respond to other treatments. Side effects common! This is normally given to transplant patients to stop organ rejection and requires corticosteroids and very specific monitoring.
Hardening or desensitization: The process of exposing small amounts of skin to the sun over a period of time then increasing time/surface area incrementally until the patient is able to withstand various amounts of sunlight for a period of time. A vague description is provided on purpose. Hardening is highly personalized, time consuming, and the period of “relief” from reactions can last from only days/weeks to months or years for some. Hardening, in general, requires constant diligence and can be set back to day 1 by missing, many times, a single day. But, it does work for some and the benefits can be astonishing (much like specific drugs work for some but not others). Put “hardening” in the search bar and you will find many posts (read the comments!!!) about hardening, how to do it, risks and rewards, and personal stories of others who have tried it.
Phototherapy: Desensitization in a clinical setting like a doctor's office or dermatology clinic. Basically, hardening in a doctors office. Easier to find in some countries more than others.
Low Histamine diet: Eating a diet restricted to foods that contains low or no histamines or foods that do not trigger histamine release like other foods (sorry chocolate and wine lovers).
[edit] This change in diet is generally used in conjunction with other therapies and its viability as a treatment seems to be highly subjective. It is difficult to find information about a low histamine diet from someone who isn’t trying to sell you something.
Window Tint: Regardless of what brand you end up buying the ceramic based films/tints are significantly better than the standard metallic films. This applies to Auto and Home. I’m including LLumar because it’s the only tint I’ve dealt with since I started driving, it has a lifetime warranty (dont use windex!), and it’s available pretty much everywhere. 3M is the other major brand. I don’t have window film on my home windows because I have Low-E windows that are 98% UV reflective anyway and the 2 I sit by regularly also have a considerable factory tint. But professionally installed home tint is available and relatively cheap considering our condition.
LLumar Windshield CLEAR UV film
LLumar CTX Ceramic Side Window Tint
Most products above are primarily USA based companies. Some ship overseas or have a presence there. Anyone who knows of brands/suppliers in other countries please let me know!!
(Google Docs hit comment, otherwise message me from the group)
Detergents without Optical Brighteners:
For those with SU sensitive to Visible Light
Light Bulbs
Basically, if you’re sensitive to visible light, bulbs in the 3500K-6500K+ range are going to be worse for your symptoms. Especially if the light is direct.
Specific Bulbs
As with SU in general, we all react differently to various light sources for multiple reasons. The following information is based on manufacturer and industry informational websites.
Reactions may and do vary.
Incandescent bulbs actually don’t produce much UV.
Halogen bulbs are like the sun. Just bad. Used in far to many restaurants as “spot” lighting. They are recognized by their tiny size and conical or bowl shaped mirrored reflectors. Some come in strip form but are usually work lights or floor lamps. It’s becoming harder to differentiate between halogen and LED bulbs as the LED’s become more widespread, expect LED’s won’t cause most of us to react.
Metal-Halide bulbs are also like the sun, but are usually much higher powered than halogens. Generally very large bulbs. Found in warehouses, stores, gyms, and parking lots.
Sodium vapor (big ugly orange bulbs on highways) are usually ok.
Mercury vapor’s are a mixed bag. Also very large and hard to differentiate from Metal-Halide. Some have coatings to contain the UV, some don’t (reptile lamps). Mercury bulbs that are coated or have the bulb inside a bulb (below) are used in gyms or large industrial buildings and produce some UV. However, if they are damaged in any way they can actually cause sunburns on normal people. These usually have some sort of metal cage or polycarbonate covering to avoid accidental cracking (like from basketballs or the such in gym’s). A cracked outer bulb does not necessarily mean the bulb will go out and will leak UV.
Straight CFL’s are ok for the majority(?). The interior phosphorus coating of curved or curly CFL’s, especially older ones, tend to harden, crack, and release UV. Straight CFL’s are ok as long as they are checked routinely. The phosphorus coatings on both ends of straight bulbs tend to burn off from the electrical arc and allow the UV to pour out.