Positive Options for Living with Lupus (12 page)

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in lupus, and rarely for more than a short period. (Treatment for osteoporosis is covered later.) One of the lesser-known side effects is mood disturbance: depression or the opposite, mania. If the family has a history of psychiatric problems it should always be reported to the physician before a patient takes steroids.

Corticosteroid Drugs Used to Treat Lupus

Here is a handy list of them: prednisone, prednisolone, methylprednisolone (Medrol), dexamethasone, triamcinolone, betamethasone, cortisone, hydrocortisone, and adrenocorticotrophic hormone (ACTH) injections.

Immunosuppressive Drugs

Lupus is an autoimmune disease, so you might think it obvious that it should be treated with immunosuppressive drugs. In fact, immunosuppressants were developed for a quite different medical condition. Fifty years ago, when the first successful human organ transplants took place, rejection was a great problem. The body receiving the transplant recognized the organ as a foreigner and the immune system attacked it. Drugs to suppress this natural process were essential if transplanted organs were to survive. Some drugs already in existence were found to have immunosuppressant action (serendipity scores again), and others have been developed since.

These have been tried as treatment for conditions like rheumatoid arthritis and lupus in which an overactive immune system is part of the problem. In lupus they clamp down on the overproduction of antibody-producing B cells. They also interfere with rapidly dividing, proliferating (multiplying) cells, hence are also used to treat cancer. Immunosuppressants are used in much lower doses to treat autoimmune diseases than they are for organ-transplant rejection or cancer. Nevertheless they are potent drugs, and their powerful action may spread to other, healthy cells that are not their designated target.

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example—or if milder drugs are ineffective, and always under very close medical supervision and with constant monitoring.

The two immunosuppressants used most frequently to treat lupus are azathioprine (Imuran) and cyclophosphamide (Endoxana, Cytoxan). Two others may be used as backup: methotrexate (Folex, Mexate, Rheumatrex) and cyclosporin (Neoral, Sandimmune). An additional, relatively new drug, mycophenolate mofetil, or MMF

(CellCept), has distinguished itself in the support of kidney transplants and looks promising in the treatment of lupus, although it has yet to establish a long track record. Let’s take a closer look at each of these.

Azathioprine

This is the immunosuppressant used most widely in the management of lupus. Although it lowers resistance to infection, it has an otherwise quite acceptable side-effect profile. It has even been used for children with lupus and sometimes for pregnant women. The dose given, usually between 100 and 150 mg a day, is based on body weight. It has been used to treat nephritis and has been continued successfully for a period of years. On the evidence of blood tests it also appears to have a beneficial effect on other aspects of lupus.

Cyclophosphamide

Studies over the past twenty years suggest that this drug is even more effective than azathioprine, especially when it comes to life-threatening kidney disease, and it is the most likely to be prescribed when heavy-duty therapy is indicated. It may be taken by mouth, like azathioprine, or by injection, often by what is known as
pulse
therapy
. This involves delivering relatively high doses of the drug straight into the vein (intravenously) at specific intervals of days, weeks, or months. This drug may also be used in conjunction with an antimalarial, or with a corticosteroid such as prednisolone or methylprednisolone. This last combination has been very successful in maintaining prolonged lupus remissions.

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Methotrexate and Cyclosporin

Methotrexate has revolutionized the treatment of rheumatoid arthritis because of its powerful effect upon joint inflammation. It can be helpful in lupus if arthritis is the chief problem and may also help with skin rashes, but it is not the first drug of choice for the condition. Cyclosporin, which modifies the immune system in a slightly different way from other immunosuppressants, may be helpful in some cases of lupus, but on the downside it carries serious and distinctive side effects, one of which is elevated blood pressure.

Since this is a major problem in lupus patients who have kidney involvement, cyclosporin is definitely at the bottom of the list for lupus.

Mycophenolate Mofetil or MMF (CellCept)

By contrast, this addition to the immunosuppressant drug list has recently increased sharply in favor. It was initially launched, like its brothers, to treat organ rejection after transplant; the first studies to demonstrate its use in the treatment of autoimmune disease were published in 2003. It showed itself to be as effective, if not more so, than pulse therapy cyclophosphamide and with a much lower side-effect profile.

For obvious reasons new drugs are first used on the most seriously ill patients, often those who have failed to respond to standard drug therapy, on the principle of “nothing to lose.” MMF was compared with cyclophosphamide for the treatment of lupus patients with severe kidney disease. The newer drug’s reduced side effects gave it another leg up over the older drug: Fewer patients withdrew from treatment. All too often distressing side effects contribute to patients’ deciding that they would rather go off the drug than put up with them anymore—what doctors call
noncompliance
.

The most effective drug is useless if patients can’t stand taking it.

It remains to be seen if MMF will prove as successful in treating patients with less severe manifestations of lupus—that is, those with less to lose by abandoning treatment.

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Treating Drug Side Effects

Of course, people with lupus don’t have to give up a drug to avoid side effects. Some effects can be treated with yet more drugs.

Infection

Immunosuppressants and corticosteroids reduce the body’s ability to fight infection by depressing the production of white blood cells in the bone marrow. Every effort must be made to avoid exposing lupus patients who are on these drugs to infection. The herpesviruses, which cause shingles and cold sores, are a particular problem, but they can be treated with an antiviral called acyclovir.

Cystitis (inflammation of the bladder), another common problem with pulsed cyclophosphamide, responds to a drug called mesna.

Bacterial infections can be treated with antibiotics.

High Blood Pressure

Nothing is more important for lupus patients with kidney involvement than controlling blood pressure. To do the topic justice, it requires a book to itself. Fortunately there are now very reliable, low-side-effect treatments for elevated blood pressure. The regimen that best suits lupus patients with kidney problems is a
diuretic—
a drug that reduces the amount of water retained in the tissues—plus a
calcium antagonist,
which works on the walls of blood vessels to reduce pressure.

High Blood Cholesterol

Half the population of the United Kingdom and an estimated one-third of the population of the United States has a blood cholesterol level that puts it at risk of coronary heart disease, so most of us are aware of the value of reducing dietary fat, particularly the “bad”

saturated fats (the ones in dairy products and meat). Elevated cholesterol is even more of a risk for lupus sufferers; fortunately there is a class of drug known as
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provide a range of other benefits as well. Needless to say, on no account should a person with lupus smoke. It is a major aggravation of high cholesterol, high blood pressure, and heart disease.

Osteoporosis

This loss of bone density leading to easy fracturing and poor healing is one of the most serious results of prolonged or heavy use of steroids. Most patients on long-term steroid treatment undergo regular bone-density scans and take calcium supplements and vitamin D supplements to help their body metabolize the calcium. If these prove insufficient, a drug from a group called
bisphosphonates
may be prescribed. Examples of these are alendronate (Fosamax) and risedronate (Actonel).

◗ ◗ ◗

People with lupus who also have antiphospholipid (Hughes’) syndrome have a major problem with thrombosis (blood clots), and usually have to take medication to counteract this condition. Such medications are called
anticoagulants,
and they are discussed in Chapter 10.

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Chapter 8

Do-It-Yourself Lupus

Management

This is a book about coping with a chronic illness. We’ve talked about research, doctors, laboratory tests, and drugs. They are all there to inform and help you. But when you come home from the hospital or doctor’s office and go through your front door, you are on your own. Day-to-day coping is up to you, hopefully with the support of friends and family.

This chapter is in some ways the most important one in the book. Yes, you need to know what lupus is all about, but above all you need the know-how, strength, and resourcefulness to grapple with the wolf in its lair. The wolf will always be with you, but you can put it on a leash and make it heel.

At first it will seem daunting. It may feel as though your life will never be the same. Persevere. Break the problems down into bite-size pieces and deal with them one by one. Each person with lupus will have different priorities. For one the fatigue will be the major obstacle, for another the painful joints. Yet another may feel devastated by the damage to self-esteem caused by the skin rashes. Or maybe it is the mood swings that get you, or the headaches, or the upset stomach. Whatever your particular bane, there is something that you, together with doctors and the right drugs, can do to over-come it. Being active in disease management is empowering; it re-76

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stores your self-confidence. It doesn’t mean you can’t ask for help if you need it. Getting constructive advice from experts, family, friends, or colleagues is a practical coping strategy in itself.

Most of this chapter focuses on managing the unpleasant symptoms that typically accompany lupus. Let’s take a look at a few of these.

“I Feel Tired All the Time”

Fatigue is probably the most common symptom of lupus and the most intractable. How can you find the energy to cope when you feel like a wet dishcloth all the time? Take comfort in the fact that medication almost always helps. Once the drugs start to take effect, things begin to feel better. Get the doctors to confirm that you are not anemic or that you don’t have a lower-than-normal level of thyroid hormones or essential minerals, all of which can be corrected.

Meanwhile take stock of your life. Lupus fatigue is known by a variety of names: super-fatigue; wipe-out fatigue; a different kind of tired. Acknowledge it, and then treat it—with rest if necessary, in whatever dose is required. Jot down the situations or activities that make you feel most exhausted, and find ways of avoiding them, modifying them, or correcting the fatigue they cause.

Gil ian’s Story

Gillian is a f inancial high-flier, a specialist in private/public partnerships. When lupus s truck, in her early thir ties, her biggest problem was finding ways to cope with business travel. It was bad enough commuting bac k and forth between the city and her home in the suburbs, but crossing time zones and then immediately afterward being expected t o be bright and bush y-tailed in a business meeting was impossible. “I got the company to let me work from home at leas t three days a week,” she explains. “My lap top is ne tworked so that I am in t ouch with everyone wherever I am, but I don’t have to sit on the train for two hours every day to go into the office. Working from home is so much more flexible. If I need a nap, I can take it. If it’s easier to work at night—the steroids sometimes do that to me—no one POL text Q6 good.qxp 8/12/2006 7:39 PM Page 78