The Lupus Book: A Guide for Patients and Their Families, Third Edition (34 page)

tially addictive and are usually reserved for the 15 percent with fibromyalgia

who cannot tolerate tricyclics. Serotonin boosters, including fluoxetine (Prozac), sertraline (Zoloft), venlafaxine (Effexor), and paroxetine (Paxil), can be helpful alone or along with tricyclics. They may worsen sleep habits, but with a tricyclic they raise pain thresholds as well as decreasing fatigue when taken in the morning. Fibromyalgia is a chronic process whose course waxes and wanes, but most

patients respond to treatment. This author has written a monograph on fibro-

myalgia which is available to interested readers (see Appendix).

Summing Up

Lupus is often difficult to diagnose. If the ACR criteria are not fulfilled, additional blood tests, bone scanning, or a lupus skin biopsy band test can assist in making the diagnosis. ANA-negative lupus is rare, and a physician confronted

with this diagnosis should embark on a workup to exclude other diseases that

mimic lupus, such as scleroderma, rheumatoid arthritis, vasculitis, polymyalgia rheumatica, fibromyalgia, UCTD, or Behcet’s syndrome. Low-titer positive

ANAs are found in patients with malignancies and infections, which must be

ruled out before the diagnosis of lupus becomes established. Most autoimmune

disorders have overlapping features with SLE and must be considered, since

their management may substantially differ. Finally, lupus patients are at an increased risk for having a concurrent fibromyalgia, which is also managed dif-

ferently from SLE. Sorting out lupus from fibromyalgia flareups presents a major challenge for patients and their healers.

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Part V

THE MANAGEMENT

OF LUPUS

ERYTHEMATOSUS

Having read about the various symptoms, signs, and laboratory features of lupus, we must now consider ways to treat the disorder. I’ve taken a therapeutic approach that will help patients feel better by working with their physicians and health-care team, by showing them how to maximize coping skills, and by promoting an understanding of the rationale behind specific treatment plans.

The treatment of lupus erythematosus is divided into four categories: physical

measures, medication, surgery, and counseling. All four are closely interrelated, although surgery plays a minor role in the management of SLE. Simply stated,

‘‘The head bone is connected to the lupus bone.’’ A doctor might prescribe all

the correct medications, but if emotional stress overcomes the patient’s will to recover, it could all be for naught. We review these areas in this section. Feel free to skip around or look up in the index any specific treatment feature that might interest you, but remember: the treatment of lupus is multifaceted and

will be unsuccessful unless all four categories are given careful attention.

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24

How to Treat Lupus with

Physical Measures

Let’s look at physical measures first. We have a fair amount of control over

these management techniques, and to some extent, controlling the environment

represents a commonsense approach. The physical or environmental factors we

are going to discuss include the effect of sunlight, diet, exercise, heat, rest in the treatment of fatigue, and the impact of weather.

DO LUPUS PATIENTS REALLY NEED TO AVOID THE SUN?

The sun emits ultraviolet radiation in three bands known as A, B, and C. Only

the first two, ultraviolet A (UVA or ‘‘tanning’’) and ultraviolet B (UVB or

‘‘burning’’), are harmful to lupus patients. (The mechanisms by which sun dam-

ages the skin and aggravates lupus are discussed in Chapters 8 and 12.) Many

of my lupus patients say the sun does not bother them and ask if they really

need to avoid it. On the other hand, another group of my patients are so sun-

sensitive that they develop a rash along with fatigue and aching even when they are exposed to open, uncovered fluorescent lights.

The truth about sun exposure lies somewhere in between. When rheumatol-

ogists sent lupus patients questionnaires about how they feel in the sun, 60 to 70 percent replied that they avoid the sun because it gives them a rash or makes them feel tired, achy, or feverish. However, when dermatologists administered

ultraviolet light to a small, defined area of skin and later biopsied it to look for inflammation or irritation, they found that only 30 percent of their patients with SLE had reproducible light sensitivity. The reason for this discrepancy is that ultraviolet light damages the skin in a time- and dose-related fashion. I have

patients who tell me that they can tolerate 15 minutes of sun exposure but begin to feel sick after 20 minutes. Ultraviolet light is present
even
on a cloudy day: UVA is constant throughout the day, but UVB (which is more harmful in lupus)

is strongest between the hours of 10 A.M. and 3 P.M. (standard time). Ultraviolet

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The Management of Lupus Erythematosus

light is more powerful at higher altitudes, and it can also be reflected on certain surfaces, such as sand and snow. I advise my sun-sensitive patients to undertake their necessary outdoor activities in the early morning or late afternoon, so they can avoid the peak UVB period. Medications that increase one’s sensitivity to

the sun include most sulfa-containing antibiotics and certain tetracyclines.

Do sunscreens help? In most cases they can be useful, but an understanding

of how they work is important. Most of the commercially available sunscreens

are rated on a scale known as SPF (sun protection factor). An SPF of 15, for

example, means that you are 15 times more protected than with no protection.

SPFs below 15 are of little value in lupus, and those over 30 may cause the

skin to dry, burn, sting, or itch. These ratings apply only to UVB light; some

commercially available preparations also block UVA. One of my colleagues,

Rick Southeimer, M.D., at the University of Iowa, has put together a listing of useful sunscreens, which is reproduced in Table 24.1. Sunscreens are ‘‘over-the-counter’’ preparations, which means that a prescription is not necessary. If you are going to be out in the sun for 5 minutes or less, protection usually is unnecessary. For longer periods of sun exposure, a sunscreen can be applied

every 2 to 3 hours to any uncovered area, especially the face. Protective clothing and wide-brimmed hats are also useful.

A small subset of my patients (less than 5 percent) are extremely sensitive to

ultraviolet light. Most of them carry the anti-SSA (Ro) antibody (Chapter 11).

Sun-sensitizing chemicals are found in certain perfumes, mercury vapor lamps,

xenon arc lamps, halogen or tungsten iodide light sources, and photocopy ma-

chines; excessive exposure should be avoided. Fluorescent lighting rarely pre-

sents a problem if the fixtures have a covering. Sleeves that block UV emanation without reducing illumination from fluorescent lighting are available (Solar

Screen Company, Corona, NY). Tinting car windows and wearing special pro-

tective sunglasses may be advisable. Even lupus patients who are not sun-

sensitive must be aware of the potential damage of UV light and should take

precautions.

Despite these precautions, the lupus patient who exercises prudence and cau-

tion need not become an ‘‘environmental cripple.’’ Lupus patients should ap-

proach the issue of ultraviolet light with common sense and not obsessiveness

or panic.

IS THERE A DIET FOR LUPUS?

Individuals with SLE should eat a well-balanced, healthy, nutritious diet. Diet books for arthritis are a multimillion-dollar industry, and one of the questions most commonly asked of rheumatologists deals with the role of diet in lupus.

It might seem surprising, but few nutritional modifications apply to SLE. Things
How to Treat Lupus with Physical Measures

[185]

Table 24.1.
Sunscreens for Lupus

Broad-spectrum UVA/UVB sunscreens

Moisturizer/sunscreen combinations

containing Parsol 1789

Cetaphil Daily Facial Moisturizer SPF 15

Cetaphil Daily Moisturizer SPF 15

Elta Block SPF 30/32

Coppertone Shade Spray Mist SPF 30

Eucerin Daily Lotion SPF 15/25

Coppertone Shade Sunblock Lotion SPF 30/45 Keri Skin Renewal SPF 15

La Roche-Posay Anthelios ‘L’ Cream SPF 60

Lubriderm Daily UV Lotion with Sunscreen SPF 15

Ombrelle Sunscreen Lotion/Spray SPF 15/30

Neutrogena Healthy Skin SPF 15

Presun Ultra Lotion/Gel SPF 15/30

Neutrogena Moisture SPF 15

Solbar AVO SPF 32

Oil of Olay Daily UV Protectant SPF 15

Purpose Dual Moisturizer Lotion/cream SPF 15

Sunscreens for very sensitive skin (generally

contain titanium dioxide or zinc oxide)

Waterproof/sweat-resistant sunscreens

Clinique City Block SPF 15/25

Coppertone Shade Spray Mist SPF 30

DuraScreen SPF 30

Coppertone Sport spray/stick SPF 15/30

Elta Block SPF 30/32

Elta Block Super Waterproof SPF 30

Estee Lauder Sunblock SPF 15/30

La Roche-Posay Anthelios ‘S’ cream SPF 30

MD Forte Total Daily Protector SPF 15

Neutrogena Sunblock spray/stick SPF 20/25

Neutrogena Sensitive Skin Sunblocker SPF 17 Presun Ultra Spray SPF 27

Presun Sensitive Block SPF 28

Solbar cream SPF 50

Vanicream SPF 15/35

Oil-free sunscreens

Sunscreen for lips or eyelids

Clinique Oil Free Sunblock SPF 15

ChapStick Ultra SPF 15/30

Coppertone Shade Oil-Free Gel SPF 30

Coppertone Lipkote SPF 15

Neutrogena Oil Free Sunblock Lotion SPF 30

Coppertone Shade Sunblock Stick SPF 30

Neutrogena Sunblock Spray SPF 20

La Roche-Posay Antherpos Ceralip SPF 50

Ombrelle Sunscreen Spray SPF 15

Neutrogena Lip Moisturizer SPF 15

Neutrogena Sunblock Stick SPF 25

Presun Lip Protector SPF 15

Recommendation of sunscreens currently available commercially in the USA. (This list was adapted from a list published on the RxDerm-L Internet chat group in 1997. It has been updated by the authors for this review.) It should be noted that this list was generated as a result of the “expert opinion” of a number of practising dermatologists across the USA. Unfortunately there are virtually no current published data resulting from systematic comparisons of the efficacy of various commercial products in the categories indicated in this table. Please note that LE patients are advised to use a product containing an SPF of 30 or greater whenever possible.

that do affect lupus can be divided into two categories: factors that are lupus-related and those that are medication-related.

For starters, fish oil has anti-inflammatory properties. This has been docu-

mented in patients with rheumatoid arthritis and in animal models of SLE.

Eating several fish meals a week is equivalent to taking several extra aspirins.

It will never cure the disease but might bring about a modest improvement in

well-being. Fish oil capsules are appropriate substitutes, but they can irritate the stomach, and it takes 8 to 10 capsules a day to substitute for one fish meal.

One food supplement to stay clear of is alfalfa sprouts. They contain an amino

acid known as L-canavanine, which increases inflammation in patients with au-

toimmune disease. All members of the legume family contain L-canavanine, but

it is highly concentrated in alfalfa sprouts. Well-documented flareups of lupus

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The Management of Lupus Erythematosus

disease have been associated with increased consumption of alfalfa sprouts and

have disappeared when sprouts are avoided. Alfalfa is an ingredient in many

food products, and some aggressively marketed ‘‘natural’’ vitamin remedies

contain alfalfa. Such products (e.g., Km) should probably be avoided by patients with SLE. I advise my patients to bring me copies of the labels on health-food

packaging to make sure the products don’t contain any ingredients that might

be harmful in SLE.

Numerous medications are used to treat SLE, but only one has any dietary

implications. Corticosteroids can raise blood sugar, serum cholesterol, and triglyceride levels and increase blood pressure. Therefore, steroid-dependent pa-

tients who require a dose of more than 10 milligrams of prednisone a day should decrease their sugar, salt, and fat intake.

WHAT ABOUT VITAMINS OR HERBS?

No specific vitamin is recommended for lupus, but under special circumstances

certain vitamins may be useful. For example, vitamin B

and folic acid treat

12

some of the anemias seen in SLE patients, vitamin B has a mild diuretic effect, 6

and vitamin D derivatives play a role in managing specific types of osteoporosis (thinning of the bones) that are observed in the disease (Chapter 13).

No herbs or homeopathic remedies have been specifically evaluated for SLE,

but controlled studies suggest that St. John’s Wort has mild serotonin boosting properties which might aid fatigue and depression, while gingko biloba may

improve cognitive dysfunction. One of my rheumatologist mentors, Dan Furst,

M.D., and his wife, Elaine Furst, R.N., at the University of California, Los

Angeles, have put together a useful ‘‘Herb Chart’’ which I have adapted and

reproduced in Table 24.2 for informational purposes. It appears that some herbs can be helpful, others harmful, and still others have no effect.