When diagnosed with any disease, the concerns and questions about what this means for your future, your quality of life, and your prognosis (predicting the outcome of the disease), are only natural. If your diagnosis is lupus, an unpredictable, and potentially deadly autoimmune disease, this question may be all the more important to have answered. In your quest for answers, you may read many things on the internet that are very scary and provide no conclusive information to help you understand what a diagnosis means to you. We want you to know that there is hope. With careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan. The information in this blog will hopefully reduce your concerns and provide you with some answers regarding lupus disease life expectancy and how to achieve your best possible health.
Lupus complications and how they are managed/treated
There are many forms of lupus, but for the sake of this blog, we will primarily be addressing systemic lupus erythematosus (SLE). Systemic lupus erythematosus is a very long name for a very complicated autoimmune disease that is more commonly known as SLE or lupus. Over 90 percent of people diagnosed with lupus are women between the ages of 15 and 45 and 2/3 of those are women of color.
The main danger with SLE, is that it can affect nearly every organ system in the body causing debilitating and potentially deadly inflammation if not properly treated and managed. Kidneys are the organs most commonly affected by lupus, this is called lupus nephritis. Long-term inflammation in the kidneys causes permanent damage. If enough of the kidney becomes scarred, it will begin to lose function. Lupus can also cause inflammation of the heart, resulting in an increased rate of heart attacks and arterial disease, even in young patients. Some people with lupus also have antiphospholipid antibody syndrome (also known as APS or Hugh Syndrome). APS increases the risk of developing blood clots that can occur anywhere in the body, including the legs, lungs, or even in the brain.
Anti-malarial drugs such as Plaquenil, play a vital part in controlling lupus along with other lupus medications. Anti-malarial drugs will help to control the severity of symptoms and is the primary reason why most lupus patients will be prescribed Plaquenil or other anti-malarial medications for the remainder of their lives. Plaquenil has thus, earned the name ‘lupus life insurance’. Here are some of the things that Plaquenil can do to help lupus patients live longer, healthier lives;
- Relieve pain in the joints and muscles
- Improve skin rashes
- Help avoid inflammation of vital organs and their linings such as the heart and the lungs
- Improve other symptoms associated with lupus such as fever and fatigue
- Helps by preventing the spread of lupus to other organs such as the central nervous system and kidneys
- 50% reduction in flares- For example, by catching a flare-up early and treating the symptoms with the right medications, you can protect your kidneys from damage.
Lupus Disease: Life Expectancy
So what is the life expectancy for those with lupus? That answer depends on how early a diagnosis is reached, the medications prescribed to both treat symptoms and help the patient with the management and prevention of lupus flares, coupled with the patient’s willingness and ability to follow through with the prescribed treatment plan(s).
With careful treatment, 80 to 90 percent of people with lupus can expect to live a normal lifespan. Because lupus was not well understood in the past, those who had lupus died younger, usually of problems with vital organs. Now that the disease can be managed more successfully, life expectancy with lupus has significantly increased.
Studies have shown that lupus patients who are on anti-malarial drugs, like Plaquenil, outlive those who are not on these drugs. In addition to protecting the vital organs from inflammation and infection, anti-malarial drugs can also be effective for treatment of sub-acute cutaneous lupus, mouth sores associated with lupus and discoid lupus. In many cases, they are also helpful in treatment of some common diseases that ‘overlap’ with lupus such as, fibromyalgia, myositis, other connective tissue disorders, Sjogren’s Syndrome and rheumatoid arthritis.
Lupus manifests differently in each patient (Please see: How Lupus Can Affect The Body,) requiring varying treatment options for each individual depending on the severity of the signs and symptoms that are presenting. Anti-malarial medications may be only a part of your individual treatment plan. It is also important to understand that the treatment protocol may change once or perhaps several times during a lupus sufferer’s lifetime.
The goals of both patient and physician remain constant: To prevent and treat flares, and to prevent lupus and associated medications from damaging your body and organs over time. In order to achieve your best possible health, it is vital to accurately follow the regimen prescribed by your physician, as well as discuss with your medical caregiver(s) any questions or concerns that may arise. We recognize that there are also alternative treatment options to bio-medicine and pharmaceutical drugs, but those should also be discussed with your physician before adding them to your treatment plan.
Although there is currently no cure for lupus, today’s modern medications and treatments can be very effective in helping people with lupus live longer, healthier lives. The prognosis (or the prediction of the outcome of the disease) does depend a lot on the severity of each individual’s lupus. Those with milder disease activity, do tend to do extremely well and live a normal life expectancy, while those with severe internal organ involvement can still potentially die from the disease, especially if they do not receive timely and appropriate treatment. Getting appropriate medical care, taking prescribed medications, and choosing to live a healthy lifestyle are all things people with lupus can do to stay healthy.
An important fact to remember, is that most people with lupus, in fact 80-90% of them, have a normal life expectancy.
New and exciting research holds hope for the future. We work very closely with The Alliance for Lupus Research (ALR) as part of our mission to fund research towards a cure. The ALR is dedicated to finding new and safer options for treating and preventing systemic lupus. Participation of people with lupus in clinical research trials is one way to make this a reality. With new and promising research on the horizon, you can empower yourself and make a difference by participating in trials. To find a lupus clinical trial near you and see if you qualify, please click here: www.lupusresearch.org/lupus-research/lupus-trials.
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus.
**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.