About Lupus

Living with Lupus

Our “Lupus Cooperatives of New York” program in Brooklyn, Northern Manhattan, and the Bronx generate quarterly newsletters that provide a lot of hands-on, practical advice on living with lupus.

In the lupus community, there is a lot of focus on the damage the disease can do to major organs such as the kidneys, lungs, and heart. These are all very important.

But having lupus can also affect the health of your mouth—which can in turn affect your overall health, your physical comfort, and your feelings about your appearance. 

For example, did you know that as...

Most people don’t even notice the 50 to 100 strands of hair that they usually lose every day. With systemic lupus, the situation can be very different, with the loss of hair much more dramatic and noticeable.

Lupus hair loss can be caused by the disease itself, as the immune system destroys hair follicles, or by medicines such as prednisone and immune system-suppressants...

Having lupus makes it much more likely that you will have problems with your two kidneys. These important organs do the job, among other things, of taking out waste and extra water from the blood and helping to control blood pressure.

So there’s certainly nothing to lose—and possibly a lot to gain—in how you feel by keeping these “kidney-healthy”...

You’ve probably heard the numbers—nine out of 10 people with lupus are female. But if you’re a man that has been diagnosed with lupus, the numbers don’t really matter. Your lupus is just as difficult to live with as a woman’s.

Like many men with lupus, you may struggle with the idea that you have a “woman’s disease.” But even...

You have just been diagnosed with lupus. Now what? Maybe you are relieved to finally know what’s wrong. Maybe you are scared, because you don’t know what it really means to have lupus. Maybe you are not sure what to feel. There is no right or wrong.

After years of working with people diagnosed with lupus, the Lupus Cooperative of New York often recommends the...

Being truly “supported” is a powerful feeling that many people with lupus long to have, and that can help enormously in riding out the emotional “rollercoaster” of life with this exhausting and unpredictable chronic illness.

With its ups and downs and flares and remissions, lupus can lead to overwhelming feelings of loss and lack of control. Anxiety,...

Even under normal circumstances it can be difficult to talk about sexuality and intimacy with a partner or spouse. Having an exhausting and painful chronic illness such as lupus makes it all the more challenging—yet important—to communicate.

One of the chronic illnesses that has a tendency to develop along with lupus—which itself is very difficult to deal with—is Type 2 diabetes.

You are more at risk for diabetes if you are obese, have a diet high in fats and sugars, don’t get regular exercise, have a family history of diabetes, or are 45 or older.

If you have systemic lupus (SLE), you’ve probably had trouble breathing, or pain in your chest, at some point—but did you tell your doctor? It’s a mistake if you didn’t.

Your lungs, which are buried deep inside your chest with your ribs serving as a protective shield around them, can become a target of lupus. When this happens, serious problems can...

The fatigue of lupus can’t be ignored. It’s much more than just feeling tired. It can make getting out of bed every morning seem like climbing a mountain. Ordinary tasks, like cooking dinner or doing the laundry, can seem impossible.

Fatigue is a symptom that others can’t see, which means they may not understand how bad you feel. Even worse, you may feel like...

As you may know, having “systemic” lupus means that the disease can harm almost any organ or tissue in your system—from your heart, to your brain, joints, and skin. But certain parts of your body are more likely than others to get damaged, and your kidneys are among them.

In a third of people with lupus, the immune system attacks the kidneys and causes more...

Lupus is a lifelong disease. It may get quiet and go into remission, but it doesn’t just go away for good. To deal with this uncertainty and all the health problems that can come up when you have lupus, it’s worth spending the time and effort to form as strong and positive a relationship as possible—a partnership—with the people who will be treating you along...

If you or someone you care about has lupus, you know how badly new drugs for lupus are needed. Researchers, doctors, drug companies, and others are working on this. To test whether they have identified a drug that is safe and will work, they run what is called a "clinical trial," in which people with lupus try it out.

One of the most frustrating and frightening things about lupus is how unpredictable it can be. Symptoms can come and go, and it's often hard to know when and how lupus will strike. When the disease gets worse and symptoms develop, it's called a flare.

Everyone with lupus has a different experience. No one—not even your doctor—can tell you what will happen. The good news...

Here's some news that may surprise you: all people with lupus—young, old, female, male—are at risk for thinning and easy-to-break bones, a condition called osteoporosis.

Most people think of osteoporosis as a problem for older women. But "secondary osteoporosis" can develop in people of all ages who take the lupus medication prednisone, a corticosteroid (...

YES. In some people, lupus can make it hard to think clearly or remember things well. It can even change a person's behavior. Because these "invisible" symptoms tend to come and go, it can be very hard to tell if they are caused by lupus or by other problems. Friends, family, and co-workers also may have a hard time understanding what is happening.

Why do people with lupus need to watch what they eat?

Many people with lupus take prednisone, a corticosteroid (steroid) that calms the body's immune system, which is overactive in lupus. This medicine is very powerful and has greatly helped millions of people with lupus. It reduces inflammation and lessens many of the pains of the disease, including muscle and...

Medicare Part D Starts January 1, 2006
If you get help paying for your medicines through Medicare or a combination of Medicaid and Medicare (dual-eligibles), your coverage will be through a different system—called Medicare Part D—starting on January 1, 2006.

Medicare Part D is still a government program, but prompts you to select one of numerous...

Are you a caregiver for someone with lupus–a spouse, parent, child or friend? Because lupus is a lifelong battle full of ups and downs, with periods of health cut short by flare-ups, the uncertainty of the disease can affect your life just as much as it does the life of the person with lupus.

Bad eating habits can make it harder for your body to fight lupus. Luckily, simple changes in what you eat can make a big difference in how you feel day to day and protect your body–especially your heart–from lupus damage. The first step to healthy eating: Cut back on the Bad and eat more of the Good.

Feeling helpless and hopeless, having difficulty sleeping and concentrating–these are a few of the symptoms of depression, an illness that is common in people with lupus.

The struggle of living with lupus can bring on depression. It can also be a side effect of your medications or from lupus in the brain–talk to your doctor to be sure.

Like lupus, the disorder called fibromyalgia or FM often involves muscle pain, joint pain and fatigue, and occurs mostly in young women of childbearing age. It is sometimes mistaken for lupus, but as many as one in four people with lupus could also have symptoms that resemble FM.