The Prognosos for LUPUS Patients…

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The Prognosis for Lupus Patients

After reading the previous posts on LUPUS, it may seem a bit disconcerting and discouraging. Despite all the complications and various conditions associated with lupus, there is actually an excellent prognosis for lupus patients today.

History of Lupus Treatment – Then and Today

Many lupus patients are still under the mistaken impression that lupus is fatal, and that impression is often fueled by old information. The first survival study in 1939 stated that one half of all lupus patients were dead within two years. By 1955 life expectancy grew to four years. Then in 1969 half of lupus patients died within 10 years. Yet today over 90 percent of lupus patients live more than 10 years beyond diagnosis. Even with organ threatening disease 60 percent of patients survive 15 to 20 years.

So what made the difference in life expectancy? By 1948 the lupus prep was discovered, and by 1957 the ANA test was put to use. These findings allowed for early detection of lupus. In the 1950’s steroids became available to treat many lupus-related conditions, as did chemotherapy. By 1970 dialysis was being used to treat patients suffering from kidney failure.

Still, within the last 20 years the development of newer antibiotics and blood pressure medication has made a great difference in surviving with lupus. Also, doctors are being educated better about managing lupus complications.

Prognosis for Lupus Patients

The type of lupus a person had impacts their prognosis. For instance, DLE and DILE patients have a normal life expectancy. If a person has non-organ threatening SLE, they have a 95 percent chance to survive at least 10 years or more. There are actually a number of variables that go into determining a prognosis:

Healthcare delivery:

Do you have access to doctors? Rheumatologists? Can you read and write? Are you educating yourself about lupus? If so, then you just increased your chances of getting a good prognosis. The better access to healthcare and treatment, and the more you know about it, the better chance you have of managing your lupus well.

Epidemiologic factors:

Your race, age, and geographic location all factor into your prognosis.

Genetics:

Your gender can impact the severity of your lupus, as fewer males get the disease, but when they do it is more severe. Still, a family history of lupus makes diagnosis much easier.

Clinical Variables:

Factors like organ-threatening disease, high blood pressure, low platelet counts, anemia, high cholesterol, renal problems and more all play a part in your prognosis.

Treatment and Patient Care:

Your doctor also impacts your prognosis, because they all treat patients differently and have different outcomes.

Besides these outcomes, the SLICC (Systemic Lupus International Coordinating Committee) also found that:

Education is important.

The more you know, the more likely you are to seek treatment and take proper care of yourself.
Adhering to your treatment program is important. For unknown reasons lupus patients have a high “no-show” rate. Adolescents only take their medications 50 percent of the time.

Access to specialists is critical. Over 80 percent of lupus is managed by 20 percent of rheumatologists in the U.S. The more experience your doctor has, the better care you will receive.

Exercise is important. Exercise decreases muscle atrophy and help in treating osteoporosis.

Cognitive Behavioral Therapy and biofeedback are beneficial to patients with cognitive impairment.

Proactive treatment can be improved by screening for antiphospholipid antibodies.

Prognosis is better for patients that know their medications and tell their doctor about them.

Heart disease is imperative in lupus patients.

While all of these recommendations help to improve the prognosis for lupus patients, some people are under the impression that lupus can “just go away.” While 2 to 10 percent of non-organ threatening SLE has a chance of disappearing, it also has a 20 percent chance of turning into organ threatening disease within 5 years if no treatment is sought.

Medications can help decrease the risk of organ threatening disease development. If patients already have lupus in the heart, lung, kidney, liver, or hemotologic systems, it is extremely rare that the disease would go away on its own.

So, do patients die from lupus? Usually patients who die from lupus-related complications do so within the first 2 to 3 years of the development of the disease, and it is usually the result of a very aggressive form of lupus that does not respond to treatment. After the third year the number of deaths drop dramatically for the next 10 to 15 years. After 20 years the effects of chronic disease take their toll on some lupus patients. For example, long-term use of high-dosage steroids can lead to diabetes, high blood pressure, high cholesterol, and obesity.

Still 90 percent of SLE patients die from 1 of 5 causes:

Kidney Disease
Infection
CNS Lupus
Blood Clots
Cardiovascular Complications

The major cause of death for lupus patients is still infection, especially in patients taking high doses of steroids and chemotherapy. However, dialysis improvements, better detection of CNS lupus, the antiphospholipid antibody test, and blood thinning agents have all significantly decreased deaths from the remaining causes.
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Thank you “Freedom from Lupus” for this information.
***********************************************
The only thing that really has helped me has been what I call “Jungle Juice” or Mona Vie…

If there are any questions that you have…PLEASE feel free to contact me.

I have had this disease all of my life and only in Dec of 95 was I properly diagnosed. So, I have pretty much run the gambit.

~The Baby Boomer Queen~

~ by thebabyboomerqueen on June 11, 2007.

2 Responses to “The Prognosos for LUPUS Patients…”

  1. i WAS DIAGNOSED WITH SLE IN FEBRUARY OF THIS YEAR AFTER A NINE DAY STAY IN ICU BECAUSE OF PNUEMONIA. I HAD A PRIOR SIMILIAR EPISODE 18 MONTHS EARLIER IN WHICH I WAS NOT DIAGNOSED WITH ANY THING BUT PNUEMONIA. FOR THREE YEARS I HAD NUMEROUS INFECTIONS AND SYMPTOMS THAT WERE NEVER LINKED BY MY PRIMARY PHYSICIAN. I BELIEVE SHE THOUGHT I WAS A (HYPOCONDRIACT?)NOW THAT I KNOW WHAT’S WRONG, I EXPECTED TO BE ABLE TO HANDLE THIS EASILY. HOWEVER I’M REALIZING THIS IS A LIFE LONG BATTLE. MY DR. TELLS ME I HAVE A MILD CASE, I DO HAVE ORGAN INVOLVEMENT. I AM BEING TREATED WITH PREDNOSONE AND METHOTREXATE. I HAD GAIN ABOUT 20 POUNDS BUT LOSE 5 AFTER I DECIDED TO CAREFULLY MONITOR MY SODIUM AND CALORIC INTAKE. I’M TAKING EACH DAY AS IT COMES AND PRAYING ALL THE TIME. I WISH I HAD SOMEONE TO TALK TO REGULARLY ABOUT WHAT I’M EXPERIENCING. WHILE I HAVE ALWAYS ENJOYED MY ALONE TIME, I HAVE NEVER FELT SO ALONE IN MY THOUGHTS AND WHAT I’M FEELING. MY HUSBAND AND FAMILY ARE VERY SUPPORTIVE BUT THEY DON’T TRULLY UNDERSTAND WHAT IS GOING ON WITH ME.

  2. Vickie,
    This is such a delayed response to your posting last year I’m not sure you’ll ever even read this, but I’m sorry you’ve experienced the isolation of SLE. I just wanted to offer support. Two years ago I was finally diagnosed with Central Nervous System (CNS) lupus involving seizures, memory loss, cognitive problems etc. Talk about lonely (I call it the Lonely Brains Club lol) Prior to that we now know it was SLE picking on my heart lining for a while and before that, my joints/ connective tissue. SLE is so poorly understood, even within the medical community. It can be discouraging when even your doctors don’t get it. I’m glad you at least have some family around though to help during difficult times. God bless you!

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