Saturday, May 15, 2010

Prognosis for those with Lupus




Lupus…well, Systemic lupus erythematosus, is considered one of the most serious rheumatic diseases. Lupus can affect so many organs that a cause of death in some people with lupus may not be directly attributed to the condition. One of the primary causes of death among patients with lupus is atherosclerosis, a disease of the coronary blood vessels resulting from accelerated buildup of plaque leading to stroke or heart attack.  Infections followed by kidney failure are some other causes of death in patients with lupus.  So…it’s the complications that kill not typically just the lupus. 

Lupus is unpredictable and varies greatly form one individual to the next, which is also what makes it so hard to diagnose.  So, what is true for one lupus patient may not hold true for another.  It tends to be chronic and relapsing, often with symptom-free periods that can last for years. Flare-ups can be triggered by sun exposure, stress, infection, surgery, or pregnancy. Flare-ups occur less often after menopause which also point to hormones having some type of contributing factor. Because many people are being diagnosed earlier than in the past and because better treatment is available, the prognosis has improved markedly over the last two decades. However, because the course of lupus is unpredictable, the prognosis varies widely. If the initial inflammation is controlled, generally, the long-term prognosis is good. Early detection and treatment of kidney damage and atherosclerosis can help reduce the incidence of complications related to those problems.

Mild lupus. About 20 - 30% of cases are mild. The only symptoms may be the skin rashes of discoid lupus erythematosus (DLE) or subacute cutaneous lupus erythematosus (SCLE) with or without joint aches. The number and intensity of symptoms in mild cases often decrease over time, as does the likelihood of major organ involvement. Patients with mild lupus should still be tested for organ involvement.

Widespread lupus. More commonly, lupus is a moderate to severe, chronic, life-long disease, alternating between periods of symptom relapse, (called flares), and remission. The disease may begin in any of the various systems of the body and progress unpredictably to others. The following are typical patterns:

v  Symptom relapses, or flares, occur on the average of two or three times a year and their duration is unpredictable.  Sometimes, flares last years.
v  Between flares, most patients with lupus function at about 90% of normal capacity.

The degree of severity depends on different factors:

v  Severity of the inflammatory response
v  Frequency of episodes
v  How well you respond to medications and treatment
v  The degree of organ or system involvement

Because of more effective and aggressive treatment, the prognosis for LUPUS has improved markedly over the past two decades. Treatment early in the course of the illness improves long-term progress. About 85 - 95% of people with lupus survive 10 years, and many people have a normal life span. Lupus that develops later in life is generally less serious than lupus that strikes in childhood or young adulthood.  I was twenty-nine when my lupus developed even though diagnosis didn’t come until I was thirty-seven.  Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.  New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.


Now…for me…I have kidney involvement with some kidney damage.  I see a cardiologist every three years for stress tests to keep an eye on my heart.  There has been some cardiovascular issues, but not related to atherosclerosis…I’ve had pericarditis twice.  Generally, my lupus attacks my blood vessels in my head causing headaches…the vessels in my legs causing purpura lesions similar to the malar lesions I get on my face when the rash is out.  My joints are always affected as is my energy level.  My disease has been very active for nearly 18 months now…but I have had periods of remission in the past…they usually only last for 6 months-ish…but generally the flare would last 2 or 3 months…I am on my longest flare and not responding well to the meds…at least not yet.  My doctors are being very aggressive and I have faith in them.  They haven’t let me down yet.


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