"UV Light & Lupus" Chat Transcript for Dr. Victoria Werth
July 21, 2008Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Victoria Werth.
Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.
Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She was a resident and later a chief resident and research fellow in dermatology at New York University. Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology.
Among her many awards and honors, Dr. Werth is listed in Who’s Who in America and Best Doctors in America. She is an Ad Hoc Reviewer for the Immunology Panel of the VA Merit Review and she was a Panel Chair and member of the Medical & Scientific Committee Clinical Panel of the Dermatology Foundation. Dr. Werth currently serves on the Lupus Foundation of America’s Medical-Scientific Advisory Council.
We welcome Dr. Werth, and thank her for joining us this afternoon.
Before we begin, do you have any opening thoughts, Dr. Werth?
Dr. Werth
I have been asked to make a few comments about fluorescent lights. UV rays are emitted by full spectrum and fluorescent lights, as well as most compact fluorescent light bulbs. The amount of ultraviolet light emitted from fluorescent lights is about the same as with incandescent lights. There are a few compact fluorescent lamps that have less ultraviolet emission, such as Phillips Marathon and Phillips - Daylight Energy saving bulb. There is enough emission from many bulbs to cause problems in photosensitive patients, so filters and tube covers should be used for most lights, as well as lamp shades when possible.
Moderator
Thank you. Without further delay, let's begin. The first question comes to us from New Mexico.
I live at high altitude and am incredibly photosensitive. Summer is brutal for me, as the UV index is easily 12 in July. I have been particularly cautious about limiting UV exposure this summer, and feel the best I have in years. Can I risk going out in the afternoon to swim with my kids in the backyard? I am so tired of being a stay 'in' home mom. -- Albuquerque, NM
Dr. Werth
It is best to go outside in the early morning, late afternoon, have shade, wear clothing and hat and sunscreen. There is a risk of having both skin lupus and SLE flare with sun exposure.
Moderator
How do I avoid the side effect of Plaquenil on the skin? It makes the color of the skin black. Thanks. Jordan
Dr. Werth
The only way to make the skin color improve is to stop the Plaquenil, or at least cut the dose. It takes a long time to see improvement in the color, and some patients don’t have the option to stop Plaquenil because their lupus gets worse.
Moderator
Given the recent research suggesting the dangers of Vitamin D deficiency, I am wondering whether those lupus patients who are photosensitive are able to receive enough Vitamin D through supplements and diet. -- Wilmington, DE
Dr. Werth
Supplements of Vitamin D are fine if a high enough dose is taken. For photosensitive lupus patients, these supplements are better than getting sunlight.
Jesse
Are discoid lupus flares just as likely to be caused by anxiety as by UV rays?
Dr. Werth
UV rays are more likely to cause problems for most patients. Anxiety can exacerbate disease also, but both light and stress are important triggers.
Warrior Princess
Where can I buy filters and tube covers?
Dr. Werth
There is research that is ongoing about this. At the current time, some fixture filter recommendations include PS-21 125 C/Lexan, Yellow Pattern or Clear Pattern UV lens (Malcolite). For tube covers, Macrolite T8-UV48 Tube sleeve or T8 UV light lines can be helpful. There may be other good filters and tube covers, and more studies are needed. These recommendations are based on one study so far.
Moderator
I would like to know more on losing hair and the edge of the scalp losing color. -- Varnville, SC
Dr. Werth
There are different types of hair loss in lupus. Sometimes there is scarring and permanent loss discoid lupus. The loss of scalp color is related to inflammation in the skin that causes a change in pigmentation.
You might get a rash after sun exposure. Sometimes the increased skin lupus lesions may occur 2-3 weeks after sun exposure, and it may be hard to link the sun exposure to the skin lesions.
Moderator Dr. Werth Moderator Dr. Werth nsejenn Dr. Werth Skeeter Dr. Werth TX.CAT Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Sarah Dr. Werth Beatrice Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Moderator Dr. Werth There is pigment from the Plaquenil that deposits in the skin or hair and causes the color change. Plaquenil is often an excellent medication for tumid lupus, which can be very photosensitive. peach Dr. Werth mshunter Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Warrior Princess rosie Moderator Dr. Werth Moderator Dr. Werth TX.CAT Dr. Werth Virginia Dr. Werth Moderator Dr. Werth Sue Dr. Werth Moderator Dr. Werth Moderator Dr. Werth Jesse Dr. Werth Moderator Dr. Werth Jan Dr. Werth peach Dr. Werth Canterclub Dr. Werth TammyD Dr. Werth jess Dr. Werth Moderator Dr. Werth Moderator Dr. Werth FATIMA Dr. Werth Beatrice Dr. Werth Moderator Please join us in September 2008 for our chat called “Healthy Aging & Lupus.”
I'm newly diagnosed with lupus and have been told to keep out of the sun. Is sunscreen sufficient, or do I need to totally change my life? My lifestyle is such that I spend a lot of time out doors! -- Bronx, NY
It is best to avoid the sun as much as possible, wear clothing, and wear sunscreen.
Does UV light cause pigmentation changes? If I'm not sun sensitive, will exposure cause me to acquire it? -- Royse City, TX
UV light can cause hyper-pigmentation of skin (tanning). If you have lupus, you may develop sensitivity to the sun with exposure.
Can you tell us the amount of Vitamin D we should be taking?
Vitamin D about 1000 IU a day is a good dose for most people, as long as you don't have kidney (renal) stones.
I take Plaquenil and my skin is not black. Is that something that will eventually happen?
About 10% of people get hyper-pigmentation from Plaquenil. It usually takes years to get this side effect, but it can happen more quickly. Most people don't have this problem.
When a lupus patient has a butterfly-rash, does this necessarily mean they are having a flare, or is that just possibly due to too much sun exposure?
Usually with sunburn, the redness would be over more areas than just the butterfly area. It is possible to have redness and not have it be lupus, but you should still be very careful about the sun.
I have SLE and psoriasis. I have read that very brief minutes in a tanning bed may help psoriasis, but this sounds contradictory to skin cancer warnings and SLE warnings to stay out of the sun. Your thoughts? -- Tustin, CA
If you have SLE, you should not go in a tanning bed. The light may worsen the lupus. Psoriasis can be treated with light, but not in lupus patients.
I had an incident where I was riding in the car for a lengthy period of time and the sun shining through the windshield caused a rash. Is this common? What caused it? -- Quitman, TX
Yes, this can happen because UVA and longer wavelengths of light can penetrate through glass. There are window filters that can help remove longer wavelengths of light.
Why do I 'burn' (skin turns red like a sun burn) and feel ill after 30 or more minutes under commercial indoor lighting? -- Van Nuys, CA
Fluorescent lights that are not covered can emit significant amount of ultraviolet light and might cause you to feel sick.
Short of trial and error, what is your suggestion for the best way to find out how much sun exposure is too much? It's just not realistic to avoid being in the sun completely, but I want to avoid a flare up.
The best thing is to go out early in the morning and in the late afternoon. If you must go out during the day, wear a hat and clothing. I would start at a low number of minutes of exposure, but really slowly increase it to see if you have a problem.
My LCD computer screen affects me the same way fluorescent bulbs do. Can you suggest a solution?
It is possible to get filters or films for the computer screen that can block some fluorescent emissions.
Does everyone with lupus get the "butterfly rash" or are there other dermatologic symptoms such as sandpaper/pimple type rash along the jaw line, behind ears and on neck? I also get hives if out in the sun without sunscreen. -- Cumberland, RI
Not everyone with lupus gets a butterfly rash. There are about 10 different types of lupus on the skin. Some rashes do not include a butterfly rash. Some people get hives or a type of vasculitis that looks like haves after sun exposure.
I have SLE and my first symptom was photosensitivity. I recently went to the beach for the first time since my diagnosis. It was a cloudy day and I did the following things: slathered on layers of SPF 70, sat under and umbrella wearing a hat and big sunglasses and still managed for my face to get burned pretty severely. Do I have to resign myself to completely avoiding peak sun hours? -- West Hollywood, CA
The SPF refers to UVB. The higher the SPF, the better for blocking UVB. However, UVA can cause problems to the skin in lupus and is only blocked by some types of sunscreens. A lot of light can bounce off the sand or water, even when you are under an umbrella. It is probably best to optimize the sunscreen (mexoryl, physical blocker, Avobenzone or Parsol 1789) for UVA blocker and to not sit on the beach during peak sun hours, even under an umbrella.
How does getting burnt in the sun affect my lupus? -- Battle Creek, MI
For some people, it can worsen their skin lupus or systemic lupus. There are changes in the skin caused by the sun that then trigger an immune reaction in the skin.
I have TUMID lupus; I have taken Plaquenil for over 2yrs. It has made my skin turn dark brown on my back, stomach, and arm. My HAIR is now almost black. I'm 62 yrs. old and only have a few silver hairs. Why has this medicine done this? I'm off of it now. -- Puyallup, WA
Tumid lupus are normally skin or pink bumps that are triggered by the sun. The diagnosis is made clinically and confirmed by skin biopsy.
What is the least amount of UVA / UVB protection one should use with discoid lupus?
If you have discoid lupus, you should use an SPF of at least 30 (higher is even better), along with a UVA blocker (physical sunscreen, mexoryl, avobenzone ) - you have to read the ingredients on the bottle to pick one with one of these ingredients.
Do people with lupus have a higher risk of skin cancer because of the photosensitivity?
Since most lupus patients have to avoid the sun, they are probably less susceptible to getting skin cancer than most people.
I have SLE and indications of Rosacea. I have Melasma and a lot of broken blood vessels on my face, which developed after my diagnosis of SLE. I would like your input on a procedure called "Intense Pulsed Light." It seems to be less invasive than other procedures, but I'm not sure if the light would cause an immune reaction. -- Bowling Green, KY
There have not been enough studies to determine the safety of this approach. If this is done, it should be on a small test area to see the reaction that you have. If it works and you don't have a reaction, then more areas can be treated.
I have Subacute SLE. Even with sun block, and covered by clothing/blanket in the car in the summer, I am still affected by the sun. I am virtually a prisoner in my home. My neighbors refer to me as the vampire, because they only see me after 7 pm. Is there anything else available to protect me? -- East Rochester, NY
Unfortunately sun avoidance is the best. Some treatments, as with Plaquenil, may also be helpful.
What can I do for discord lupus? I get lesions, horrible ones, with any light or sunlight and get very sick. I heard discord lupus will and does become SLE lupus. How will I know if this has happened? I am desperate; I get so sick with any lights or sun. Please help. Thanks. -- Ocean Springs, MS
Discoid lupus does not always turn into SLE. There are many discoid lupus patients who only have skin disease. You should be checked by your doctor to make sure you are not getting protein in your urine or other blood abnormalities that could indicate development of SLE.
Where do you buy filters?
The LFA Winston-Triad NC Chapter has distributed such filter shields for the past twenty years for the Lupus Foundation of America. Contact us at 336-768-1493.
Hello, Dr. Werth. I have read that there are some sunscreens that are chemical blockers, rather than physical blockers and that they actually disturbed the immune system. How does this affect patients with SLE? What is the key active ingredient should we look for that is safe to use for people with SLE and finally, should people with SLE wear sunscreens even if are inside the house to protect from UV fluorescent lighting? -- Houston, TX
The chemical sunscreens, depending on the chemical and strength, work well to protect the skin from sun effects. If there are covers to the lamps and drapes in the window, then it is likely not necessary to wear sunscreen indoors.
Hi. I'm 17 and I recently developed discoloration on my legs due to my lupus condition and sun exposure. Is it possible for the discoloration to ever go away? If so, how? -- Miami, FL
It depends on the cause of the discoloration, but often pigmentation will slowly resolve over time. It takes a bit longer on the legs.
I am currently taking Plaquenil, Cellcept, Methotrexate and Mobic. Do all of these medications make me more sensitive to the sun?
Most of those medications help treat the skin in lupus, and Plaquenil makes people less sensitive to the sun.
Can sun exposure cause a flare with internal organs, or is the sun effect usually skin related?
Sun exposure can cause a flare of skin or systemic lupus (or both).
What is your opinion of this 2006 editorial published in the journal Rheumatology, as well as the research therein cited by its author Dr. S. Pavel, Department of Dermatology, Leiden University Medical Center. "Editorial - Light therapy (with UVA-1) for SLE patients: Is it a good or bad idea? http://rheumatology.oxfordjournals.org/cgi/content/full/45/6/653 Full disclosure - I've been using UVA1 phototherapy for 5 years and have experienced wonderful results with no significant side effects. -- Evanston, IL
Low dose UVA1 has been helpful to some patients with photosensitive forms of lupus. Often long-term treatment is needed.
Is photosensitivity specific to lupus, or can UV sensitivity be associated with other autoimmune diseases?
Photosensitivity is seen with a number of different diseases, some of which are autoimmune. There are others that are not autoimmune at all.
Is it necessary to purchase sun protective clothing? Also should you purchase sunscreen from a company that sells clothes or is Wal-Mart okay? -- Tiffin, OH
Sunscreen from Wal-Mart is fine, as long as it has the right ingredients discussed previously. Some sun protective clothing has been tested and clothing with tight weaves provides the best protection.
I have had discoid lupus for 18 yrs. Most of my blood tests are positive for things such as Sjogren’s syndrome, but I have NO symptoms of these other diseases. Is this a sign I will develop these disease symptoms at a future date or my blood work is just baffling because I have no symptoms but have the other antibodies? -- Simpsonville, SC
The blood tests don't necessarily mean something else will happen. Sjogren's antibodies can be seen in lupus and you may never have Sjogren's. The antibodies are not specific for predicting what will happen and the best news is that after 18 years you are unlikely to progress.
How do you know when discoid lupus might be causing systemic lupus and what can you do about it?
Detection of systemic lupus would be done by whether you get new symptoms and also by blood and urine tests. Many patients with discoid lupus don't get SLE, but they do need to be checked to make sure they don't develop systemic disease.
Since I can no longer suntan, I have been using self tan products as well as spray tanning. Do you see any problems with any of these products? -- Mississauga, Ontario
Spray and self tan products are fine. They block longer wavelengths of light and aren't a problem for your lupus.
I don't get skin rashes from sun exposure but I get depressed and exhausted in summer. Could this be a reaction to UV exposure?
Systemic lupus can flare with sun exposure. Your symptoms are a bit nonspecific, but could reflect some systemic disease related to sun exposure.
Do you think the tanning bed can trigger discoid lupus? I never had a problem until I lay in the tanning bed.
Tanning beds emit both UVB and UVA. They can trigger discoid lupus, and it is important to avoid them if you have lupus.
Do the long wavelengths of UV occur only in direct sunlight (or through a glass window)? I'm trying to understand if long wavelengths can still affect lupus patients when we're in the shade (i.e., indirect sun light)?
If outside, light can get underneath umbrellas and awnings, and can bounce off of water or sand to affect people. Longer wavelengths are in direct and indirect sunlight.
I have a lot of trouble with sunscreen. It gives me a chemical rash. I've tried about every one on the market. I got a swimshirt and tights that are SPF coated and that worked great for vacation, but it would be too hot for sitting at track meets and stuff. What other products help block UV and which are the best?
If chemicals cause a problem, then zinc or titanium oxide-containing physical sunscreens might be helpful. It is also possible to have testing done to specifically find out what chemical(s) you are allergic to in order to make more specific recommendations about chemical sunscreens.
Have there ever been any reports about flares and sunless tanners?
Sunless tanners don't usually cause flares of lupus. You do need to combine them with other sunscreens that block UVB and UVA.
I have been taking immunosuppressants for 2 years. Do I have a greater risk for developing skin cancer because of this?
Immunosuppressants can increase the risk of skin cancers and it is important to notice any new growths and have them checked.
My wife is UV sensitive. I have purchased a UV light meter and am getting some surprising readings. The new spiral bulbs are showing lower readings than the incandescent which we were told do not emit UVA/UVB. One question is: At what reading uW/cm2 do the rays become dangerous? I am sure that varies from person to person so I am asking for an average, if known. Fluorescent tubes in stores, doctor's offices and school cause outbreaks, although some are minor but none the less troublesome. Are the new CFLs coated to block UV? The manufacturers won't answer me and that is why I bought the meter. If I need to buy Acrylite OP-3 to make "shades," I will. -- Liberty, MO
There are no safety standards for UV emission. Both incandescent and fluorescent lights emit UV. You should use fluorescent sleeves or filters, and/or shades to cover these bulbs.
I have SLE and wanted to use Botox. Is this possible?
It can be used. I am not aware of any reports of problems specifically for lupus patients.
Does Elidel cream work well to block immune reactions in the skin?
Elidel can help some patients with skin lupus. It often is not sufficient as the only treatment.
That is all the time we have for today’s chat. Thank you to Dr. Victoria Werth for joining us.
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