In most cases, lupus is not fatal. In fact, 80% to 90% of people who have this autoimmune disease will likely live a normal life span. Still, some people do die from the disease, in which your immune system attacks your body's organs and tissues.
Is There a Cure for Lupus?
Not yet, though research continues. There has been more progress in lupus research in the last 10 years than in the previous 100 years. That’s why some experts believe a cure may be possible in the coming years.
In the meantime, you and your doctors can work together to come up with the best treatment plan to treat your symptoms and limit damage to your organs.
Why Do Some People Die From Lupus?
Lupus symptoms can vary widely from mild to moderate to really bad. The cases with frequent serious flare-ups are the cases doctors find hardest to treat. They’re also the ones most likely to shorten life span.
Still, it’s important to note that most people with lupus rarely have a flare-up serious enough to require hospitalization.
What Forms of Lupus Are Most Likely to Shorten Lifespan?
Typical causes of death from lupus are complications from:
- Kidney damage: The most common form of lupus, systemic lupus erythematosus (SLE), can cause serious damage to the kidneys that can shorten lifespan. Your doctor might call this lupus nephritis.
- Heart damage: Lupus can inflame your arteries as well as the heart muscle and other tissue. This raises your risk for cardiovascular disease as well as heart attacks.
- Infection: Because it’s an autoimmune disease, lupus can weaken your immune system. And the drugs used to treat the disease can weaken it further. Together these factors raise your risk for infection that can become more serious because even after you get it, your body (for the same reasons) is less able to fight it.
Though it’s possible to do everything right and still develop these serious lupus complications, there are things that raise your risk of complications such as:
- Late diagnosis: It’s harder to control lupus if symptoms have been allowed to develop untreated for some years.
- Poor health care access: You may not be aware of your lupus without regular visits to your doctor. And you can’t treat the disease until you and your doctor know you have it.
- Not taking your medication: You’re more likely to get serious flare-ups that lead to complications if you don’t keep to the treatment steps prescribed by your doctor.
What Can You Do To Slow The Development of Your Lupus?
To start with, try to notice any symptoms of illness and talk to your doctor about them. This helps in two ways:
- You get an early diagnosis so you can start treatment as soon as possible.
- Once you have your lupus diagnosis, you and your doctor will be able to get ahead of flare-ups and treat them as soon as you notice the first signs and symptoms.
Once you have a lupus diagnosis, the best thing you can do is follow the prescribed treatment of your doctor both for general treatment and for flare-ups. You risk more serious flare-ups and even complications if you don’t follow your treatment plan.
In addition, you and your doctor can work together to identify and avoid triggers for your flare-ups. Though each person is different, common lupus triggers include:
- Too much sun or fluorescent light
- Too much work without enough rest
- Infection
- Certain medications (ask your doctor which ones)
Beyond that, you can try to eat a balanced, healthy diet, exercise regularly, and get between 7-9 hours of good quality sleep per night.
How Do You Manage The Most Serious Lupus Cases?
In a rare case where lupus gets worse, you may want to consider talking to your doctor about palliative care, although it can be started at any time during a chronic illness like lupus.
Sometimes called “comfort care,” palliative care helps to address issues like your pain levels, tiredness, sleep issues, and emotional well-being. It’s not just for people with illnesses likely to cause death. Anyone with a serious illness may benefit from palliative care. The aim is to provide the best quality of life possible.
In the case of end-stage lupus, you may still be getting “regular” care from your health care team when palliative care starts. In fact, you may get it from the same health care team. But in some cases, especially in the last stages, you may receive hospice care, which is comfort care offered to a person who is terminally ill. At this point, you normally stop preventative treatments and concentrate on comfort. This may involve not just medical professionals, but also nutritionists, social workers, therapists, and clergy.