I read this on front page: "With recent treatments, health care and medications, the diagnosis for patients with SLE have found that 80% to 90% survive ten years."
This is not true is it? I read/understood it a bit differently at Lupus.org...
"4. Is lupus a fatal disease?
Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal lifespan.
People frequently read in the literature that, 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as- people with lupus live for only ten years. Let us clarify this.
It is important to understand that the "10 years" does not represent the number of years the person will live, but rather the number of years involved in the study. The studies followed patients with lupus from the time of diagnosis for a period of ten years. At the end of this research period they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know there are many people who have been living with lupus for 15, 19, 25, 30 and 40 years. This is not a disease that is universally fatal to all. The majority of people with lupus today can expect to live a normal lifespan.
When people die of lupus, what do they usually die of?
Overwhelming infection and kidney failure are the two most common causes of death in people with lupus. "
(from http://www.lupus.org/education/faq.html#43 )
The wording might be a bit confusing
But both quotes are saying the same thing, just in different ways. What they are talking about in something called a "survival rate" in clinical studies of lupus patients. In the studies that have been done, 80-90 percent of lupus patients followed were still alive ten years after diagnosis. But the studies don't look at what happened after, and how many patients were alive 15, 20, even 30 years down the road. And you have to remember that many of these studies are done at research hospitals and teaching centers, which usually get the more seriously ill patients to start with. It's not like they are looking at every single lupus patient in the country, so those numbers don't accurately represent true survival rates for the many lupus patients with mild disease and no organ involvement.
In the 1950s, about half of lupus patients died within five years. But you have to remember two things about those statistics - there were no effective treatments available, especially for lupus kidney disease, because the first steroid drug, cortisone, wasn't invented until 1949, and prednisone didn't become available until the mid 1960s. And ANA testing didn't exist until the late 1950s, and the early tests weren't very sophisticated. The complex antibody tests that are done now didn't exist. So the patients diagnosed with lupus then were the ones with clear-cut, often severe disease. But as early diagnosis and treatment have improved, so has long-term survival and quality of life. In fact, a study done in 2005 found that less than 2% of lupus patients followed in one study actually died of lupus or related complications. Unfortunately, in lupus, gender and ethnicity do matter, because men are more likely to have severe disease and a poorer outcome, and people of certain ethnic backgrounds are more likely to have organ involvment and life threatening complications. People who live in North America also have better long term survival rates than people in Asia and parts of Europe, probably because of better access to medical care. People with kidney disease or CNS lupus are more likely to die of lupus or related complications. So those general statistics about survival don't take a lot of factors into account. And they certainly can't predict how long an individual patient might survive, because every patient's symptoms and prognosis are different.
more than 10
I've had lupus for 13 years and I'm only 27!! I plan on staying around for another 60 years!!
I think I had lupus as a teenager, so that's 50 plus years for me
My health has gone up and down. It doesn't take but a couple of the down times to gain a respect for this disease.
But mostly it's just been a matter of doing less than most people. More resting, more routine (no late nights) more vitamins, etc.
I can do that