hello everyone -
I am new to this forum. Have only recently been diagnosed with lupus.
I have been seeing a rheumatologist for almost a year now. My symptoms are mostly joint pain and fatigue with rash that comes and goes. I have questions about sunlight causing flare ups. I am not sure if that is what is happening with me or not. After a day outside in the sun
I seem to have a flare up about one to two days later. If it was from the
sun, would it be sooner than this? Maybe some of you more experienced
could let me know. Thanks alot.
07-27-2004, 09:41 AM
The following information is from the Lupus Foundation of America:
Abnormal light sensitivity, or "photosensitivity," is a major feature of both systemic lupus erythematosus (SLE), which can affect any organ or system of the body, and cutaneous lupus, which is mainly limited to the skin.
The American College of Rheumatology loosely defines photosensitivity as "a skin rash as a result of unusual reaction to sunlight." Using this definition, photosensitivity has been identified in one-half to three-fourths of people with systemic lupus.
In people with cutaneous lupus, photosensitivity affects 50 percent of those with discoid lupus and 70-90 percent of those with subacute cutaneous lupus.
Photosensitivity show up in lupus in the following ways:
1) Sunlight can cause new skin lupus lesions (sores).
2) Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
3) Some medications increase the effects of the sun on a person's body. People with lupus taking these drugsincluding tetracycline antibiotics and many othersmay also very occasionally develop "phototoxic" reactions. These will lead to easy sunburning, so if you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.
People with Lupus have been found to be very sensitive to the ultra-violet light of the sun. Several studies over the last 30 years have looked at the role of ultraviolet (UV) light in lupus. UV light is invisible radiation from the sun. It has a shorter wavelength than the visible light and heat we all recognize. UV is divided into UVA, UVB and UVC (which does not reach us because it is absorbed by the atmosphere). In general, UVA mostly ages the skin and UVB mostly burns the skin ("A Ages, B Burns") although UVB also contributes considerably to skin aging and cancer.
Early studies from the 1960s suggested that UVB was most important in causing photosensitivity in lupus. More recent research shows that UVA is also partly responsible.
How the UV rays ffect the skin is uncertain; probably, skin cell proteins and genetic material such as DNA and RNA start a reaction in genetically predisposed individuals.
Most commonly, a lupus rash will develop after sun exposure. A current theory, based on experimental evidence, is that UV light causes skin cells to express particular proteins on their surface. These proteins, including one called "Ro," may then be the targets of antibodies which latch on to them. The attached antibodies are thought to attract white blood cells which attack the skin cells, leading to the inflammation that causes the rash. The process my take a day or two before manifestation of the rash.
Normally, skin (and other) cells that are sufficiently damaged die through a process known as programmed cell death, or "apoptosis." The body then gets rid of the dead cells. But in lupus, apoptosis in the skin seems to occur more often than it should, which may in turn lead to more inflammation.
Another contributor to the lupus rash may be that too much of the inflammation-promoting substancenitric oxideis made in lupus skin after sun exposure. This then leads to further redness and inflammation. This, too, may take a day or two before manifestation.
The reasons for these abnormal reactions (beyond a genetic tendency to them) are unknown, but many research studies are ongoing in this field.
You may develop different lupus rashes after sun exposure:
1) Acute cutaneous lupus erythematosus (ACLE):
o This is also known as the "butterfly rash" of lupus and occurs over the cheeks and nose.
o It often comes on after sun exposure, and is associated with lupus flares.
o ACLE usually heals within weeks without scarring.
2) Discoid lupus erythematosus (DLE):
o The term "discoid" refers to the disk-shaped lesions of the rash.
o The rash occur s mainly on sun-exposed sites.
o The lesions develop slowly and heal over several months, and may cause scarring.
3) Subacute lupus erythematosus (SCLE):
o SCLE is highly photosensitive.
o It usually shows up as many red, circular shapes on the chest, back and arms.
o It is often a little scaly, resembling psoriasis.
o This form of lupus is particularly associated with antibodies in the blood to the Ro protein (mentioned above).
o SCLE tends to heal over weeks or months and is usually non-scarring.
o It frequently comes back after more sun exposure.
Both SCLE and DLE may occur on their own without the presence of systemic lupus. And, although systemic lupus occasionally develops in people who first have DLE or SCLE, it tends to be a milder illness than the usual form of SLE.
There are ways that you can protect yourself against ultraviolet light.
1) Whatever the weather, avoidance of tropical sun, or the sun in the middle of the day, is the first line of defence. This action alone may reduce the need for other treatments.
o However, avoidance of the tropical or mid-day sun may not be practical in all situations or for all people.
o If you must be out in the sun, broad-brimmed hats and tightly-woven, loose-fitting clothing with long sleeves and long pants are very effective.
2) The use of sunscreening creams forms the next and best-known part of sun protection.
o These preparations are either chemicals which absorb UV light, or pigments such as titanium dioxide or zinc oxide which scatter it.
o The sun protection factor (SPF) displayed on sunscreens indicates the number of times skin damage is reduced when the screen is applied, regularly and liberally, before and throughout exposure (see below). This protection relates mostly to UVB, which probably is the most important cause of lupus-related skin disease. But, because the exact degree of the UVA effect is uncertain, broad-spectrum sunscreens that also protect against UVA are therefore most effective, if a little less ideal cosmetically.
o People tend to apply less sunscreen than is needed to achieve the manufacturer's recommended SPF, which is based on the use of two milligrams per square centimeter of skin. That works out to a bit more than an ounce for a 5-foot 8-inch person, per application! Most people only use a half to a quarter of that amount. At those levels, an SPF-15 sunscreen has an SPF of just 3 to 7. The most frequently missed areas are the back and sides of the neck, the temples, and the ears, areas where DLE patients frequently experience problems.
o People also tend to forget to reapply sunscreen after a period of time outdoors, and especially after spending time in water. It is safest to re-apply every time you come out of the water, but in any case, the "water-resistant" or "waterproof" label on sunscreen can certainly be confusing, a situation that the Food and Drug Administration (FDA) is currently addressing.
o To qualify as a water-resistant product, therefore, a sunscreen must retain its SPF rating after 40 minutes in the water, while the standard for a waterproof label is 80 minutes. The FDA may soon replace the label "waterproof" with "very water resistant" so that consumers will not be misled. The FDA has also expressed concerns about the words "sunblock" and "all-day protection," as terms that can mislead consumers, and is considering banning the use of these words.
3) Sources of UV light other than sunlight can also cause skin problems in lupus. Thus, photosensitivity has been reported from fluorescent tube lights, which mainly emit UVA with small amounts of UVB, and from photocopiers, which emit mainly UVA and visible light. Fluorescent tubes can be fitted with acrylic shields which eliminate UVB emission, while photocopiers should not be used with the top cover up.
4) Finally, because car and house windows protect just against UVB, not UVA, and clouds only a little against either one, sun protection should not be limited just to sunny days. For windows, effective UV-blocking films are commercially available.
I hope that I have been able to answer your question :lol:
If you need anything further, please write again!!
Peace and Blessings
07-29-2004, 12:22 AM
We should all buy stock in sunscreen, huh? It still amazes me that the sun could make my insides flare up! Wow!