Q&A with Dr. Victoria Werth - Photosensitivity in Cutaneous Lupus

Photosensitivity describes the experience of having an unusual reaction to sunlight. For those with lupus who are photosensitive, exposure to the sun may cause skin rashes or other abnormal symptoms more often. In this month’s Ask the Expert Q&A, Dr. Victoria Werth answered your questions about photosensitivity and its implications in those with Cutaneous Lupus Erythematosus.

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. I have had a rash, on and off, for about 4 years—on my chest, back and upper arms. Two months ago I had a biopsy done on my back and they said it was contact dermatitis... I have switched all of my lotions, body wash, and detergent.  Could this painful, itchy rash with red bumps that turn into scabs have to do with me having discoid lupus and would a biopsy confirm it? MO

A biopsy would normally look different than contact dermatitis if the rash was from lupus. It would be important to know that a dermatopathologist reviewed the biopsy, since they get extensive training on inflammatory conditions.  If it is a contact dermatitis, it might be helpful to get patch testing from a dermatology center that specializes in that area in order to get a better idea if it is a contact allergy, and if so what the cause might be.

2. I find that, not only do I get sunburns very easily, but I also get itching sensations and rashes when exposed to sunlight. One thing I have experienced was not mentioned in your presentation and I would like to know if it can be lupus related. About 24 hours after I got a REALLY bad sunburn, I ended up in the ER because of extreme fatigue, nausea, vomiting. My face (especially around my eyes) swelled dramatically to where I could not close or open my eyes all the way, and my tongue and throat began to swell. The hospital considered it an allergic reaction (this was before I was diagnosed with systemic lupus). Can lupus cause such a dramatic reaction from sun exposure? MO

That sounds like a severe reaction to sunlight, but the cause might be hard to know for sure.  We do see people with systemic symptoms of fatigue, nausea, and vomiting related to their lupus erythematosus after sun exposure. If you had a severe sunburn, it is possible that the sunburn alone was the problem. Sometimes sunburns can trigger lupus, and it isn’t clear to me if you had lupus symptoms prior to the severe sunburn.

3. I have systemic lupus and take Plaquenil, and I have tried several topical creams without success. The dermatologist said I have eczema associated with systemic lupus, the primary care provider prescribed a yeast topical and no relief. They are scaly round areas and leave scars behind. What treatments do you suggest? OK

I would suggest you consider speaking to a dermatologist about getting a skin biopsy to confirm the diagnosis. Patients with systemic lupus erythematosus can certainly get skin lesions unrelated to their lupus, but getting a biopsy may help sort this out.

4. I have systemic lupus and am extremely sun sensitive. My butterfly rash is out in all its full colors.  I wear good SPF, hat, sunglasses, long sleeves & capris. I'm extra cautious and still feel hit by a truck 2 or 3 days afterwards. What else can I do? Do I keep doing what I am doing and just have the expectation I will need days to recover? OH

You could try going out early morning and late afternoon to avoid the peak hours for sun exposure. Make sure you have filters on the windows in your car and at home, if that is a possible source of light. You will also want to cover the light bulbs with a shade.  You should wear sunscreen with SPF 70 or higher and make sure you put on enough – a shot glass each time to cover the body. You may also want to be evaluated to see if additional treatment for your lupus might be helpful.

5. Is it safe to use red light therapy for my skin? CA

The usual range of light that is a problem for lupus patients is UVB and UVA.  However, longer wavelengths including visible and infrared have been shown to cause problems.  The pulsed dye laser has been successfully used to treat isolated cutaneous (skin) lupus lesions, but you should probably have a small test area to make sure you don’t have an abnormal reaction to light.

6. I had a skin biopsy done that was positive for skin lupus. I have two positive ANA results, my WBC (white blood cell) count  is .3 from being above normal, but my used rate is normal. My doctor said I had lupus, but now he and the rheumatologist say no, based on the used rate and blood. I break out horribly in the sun within minutes and am sick for a long time after. They are giving me steroids that are low dose to see what it does. Cleared rash and some issues but not all. I'm exhausted all the time. Do I really not have lupus, even though the biopsy and ANA is positive? Please help me, I feel like they are going to let me get much worse. VA

We have seen some patients with skin lupus who have systemic reactions to light. If your skin biopsy was reviewed by a dermatopathologist and felt to show changes consistent with lupus, I would not rule out the possibility that you have it.

7. My husband and I replaced our light bulbs in our home with the new, low energy bulbs that the US has now made mandatory. Shortly after, while crocheting next to my bedside lamp, I noticed a mild tingling, then a slight rash. After an hour or 2, my arms were beet red with the same kind of blisters I get while out in the sun. It was very painful and flu-like symptoms followed for the next two weeks. I never noticed this problem with my normal incandescent light bulbs. My question is: What are the best light bulbs for those of us with photosensitive lupus, when the US does not manufacture incandescent bulbs anymore. TX

The light emitted from compact fluorescent bulbs (CFBs) varies from bulb to bulb. However, a bedside lamp, without a shade, that shines on you may emit more light than a normal incandescent light bulb.  The amount of light emitted if one sits in close proximity to a CFB may be significant enough to cause symptoms in a photosensitive person. I would suggest having a shade or acrylic filter that is placed between you and the bulb, and likely having a ceiling lamp with shielded bulbs would be the best.

8. I was recently diagnosed with tumid lupus; I've had systemic lupus for 6 years. I have always been photosensitive and take the necessary precautions when venturing out during the day (long sleeves, SPF, wide brimmed hat). I have started Quinacrine (100 mg/daily) in addition to my regular dose of Plaquenil (200mg/twice a day). Even with all the precautionary measurements and meds, I am still getting the lesions, especially on my face. Do you have any speculation as to why this occurring and if so, are there any things I can do to decrease the likelihood of them increasing? TX

It takes about two months for the quinacrine to work—and it may take longer.  The combination of plaquenil and quinacrine does not work for every patient. You should use a high spf sunscreen (70 or more) that also has a good UVA blocker (helioplex or mexoryl) that you put on in large amounts 20 minutes before going in the sun.  You would need to reapply sunscreen if you swim or sweat.  If these measures don’t work, then there are additional medications that can be tried, but they may require more laboratory monitoring than is needed with the treatments you are on.

9. My systemic lupus has been in remission for many years, but the symptoms of photosensitivity have been constant, even while blood tests show that I am not in a flare. These symptoms include disk-shaped lesions, burning or itching, general rashes, and fatigue. Does the photosensitivity associated with lupus have cycles of flare and remission?  Can photosensitivity cause dark spots on my complexion? The places where I have blemishes on my face always darken and require prescription bleaching agents if I want to reduce how noticeable they appear. Is that tendency lupus related, or something else? NY

It is not possible to answer that question without seeing the skin, since there are many causes of dark spots.  Sometimes it is difficult to determine the cause, even when one can see the skin, and a biopsy is sometimes needed to try to confirm the cause.  There are many causes of photosensitivity, and even when systemic lupus is quiet, some people still experience the types of photosensitivity you describe.  I don’t think much is known about whether there are cycles of photosensitivity, since the flares are most often seasonal (spring, summer) and over time people learn to avoid the sun during peak times and seasons if it triggers problems.

10. I’ve had systemic lupus for 7 years and my skin rash is all over my neck and arms. I’ve been using Vanos cream and it is expensive. Are there any home remedies to try, or is there something less expensive? I try to stay out of the sun, but I work under fluorescent lights. However I’m always covered. NE

There may be other topical or oral approaches that you might discuss with your physician. In addition, you definitely should wear sunscreen every day and apply prior to going to work. You might discuss having your work place cover the fluorescent lights, which would be helpful.  You can also get window filters for your car window and house and very photosensitive patients sometimes benefit from that as well. The regulations for filters for car windows vary from state to state, but it is an approach that may be helpful.

11. Is there any relationship between a shingles outbreak and hyper-photosensitivity? Two months before I was diagnosed with lupus I had shingles. Since then I'm extremely photosensitive, to the point that I can't even use a computer. If I get too much light exposure I will get a shingles recurrence with a few blisters. Wellington, FL

People with lupus may be treated with medicines that suppress the immune system and predispose them to shingles. In those on higher doses of immunosuppressives or prednisone, there is an increased risk of shingles, but as people get older the risk of shingles does increase, even without medication. 

You may want to make sure that this is shingles and not another infection such as herpes, since recurrent shingles does happen, but is not very common.  It is possible to test the fluid when you have blisters, to see if it is related to an infection.

The other possibility is that the blisters are related to the lupus and not infection. Light may trigger such a reaction, so it should be evaluated the next time it happens. Wearing sunscreen might be helpful to prevent this reaction.

12. I wear sunscreen, use a wide brimmed hat to keep my face out of the sun and wear a UV shirt when I am in the sun. I still get a red and flaky rash below the corners of my mouth (the skin stings and burns within 30 min of being in the sun and then becomes red and flaky the next day). It lasts up to a week. Is there anything I can put on the rash to help with the redness and flakiness? I already take hydroxychloroquine. Culver City, CA

If you use a mild topical steroid cream or calcineurin inhibitor (pimecrolimus cream or tacrilimus ointment) when you first get symptoms, it might help prevent the rash from being as bad or help it resolve. 

13. I have had discoid lupus and continue to experience itchy skin as well as a burning sensation where my rashes are, as well as places where I have no rash at all. This happens both with and without sun exposure. Can lupus cause my skin to itch and burn? Baltimore, MD

The itching may not be related to your skin lesions. There are many causes of itching in the skin.  Sometimes even just dry skin is enough to cause itching. You may want to use a good moisturizer (Eucerine, Vaseline) and use soap such as Dove, that can help moisturize the skin to see if that helps. If you persist with this problem, then you should have it evaluated by your doctor.

14. Regarding light therapy, it is my understanding that common names for light therapy might include light boxes, colored light therapy, chromatotherapy and ultraviolet light therapy, for example. Various types of light therapy have different wave lengths. Whether we are talking about photopheresis, or red light therapy for aging, will you please provide some guidance about light therapy and people who have lupus? Is there a specific safety guideline for people with lupus? TX

You are right, there are many different types of light treatment.  In general it is best not to get any light treatment when you have lupus. I will discuss the rare exceptions below.

The pulsed dye laser for focal limited red lesions, and there have been a few reports that this approach is relatively safe. There have been some lasers used for hyperpigmentation, but some laser experts are worried that it may worsen pigmentation. You would want to see one of the few experts that have experience with treating hyperpigmentation from lupus with lasers if you wanted to try that approach.  Lastly, there have been some studies with very low dose long-wavelength ultraviolet A1 (UVA1) that suggest that specific wavelengths have some therapeutic effects in lupus. Further studies are ongoing, but that approach has been used in a few places.

15. I recently spent the day out in the sun which caused a terrible rash on my face that would not go away. The dermatologist did a skin biopsy which showed that I tested positive for discoid lupus. Last week I had blood work done saying that the results I got were inconclusive. Could I have been misdiagnosed with discoid lupus? Is it possible to get a false positive from a skin biopsy?

Patients with just skin lupus frequently do not have blood work abnormalities.  A skin biopsy read by a well-trained dermatopathologist can make the diagnosis of an autoimmune skin disease (lupus or dermatomyositis, which look the same under the microscope) in the absence of other laboratory findings.