May. 18, 2015

Lupus Gets Lost in the Crowd

By Cindy Coney

As a woman living with lupus and arthritis, my team of doctors works hard to relieve the chorus of complaints from my painful joints, while also keeping the serious life threatening symptoms of lupus under control. Although a number of people diagnosed with lupus may initially experience joint pain -- lupus is not a form of arthritis. Not knowing this distinction can lead to more problems for the person with lupus down the road.

There are a number of reasons this is important, starting with diagnosis.  I first saw a doctor for my own symptoms over three decades ago at age 25. This marked the beginning of a three-year journey in which my husband and I endured heartache and learned to live with uncertainty. It was an extremely costly time, depleting both our emotional and financial reserves. I went from being an athlete who would run a 9 mile race on the weekend, to a young woman too tired to get out of bed most mornings.

I fear that when lupus is classified as a form of arthritis, the diagnosis of lupus might be prolonged even further. A recent survey conducted by the Lupus Foundation of America showed that from the time patients first noticed their lupus symptoms, it took on average six years for them to receive a correct diagnosis. This is unacceptable and we should not and do not want to compound the issue by creating confusion and labeling lupus as a type of arthritis.

Lupus is a serious, life threatening and potentially life-ending autoimmune disease; my body’s own case of mistaken identity. Similar to friendly fire, lupus causes my immune system to confuse healthy tissue for a foreign invader which then causes inflammation. The inflammation lupus causes can be life threatening and life altering when the kidneys, heart, lungs, brain, skin, joints and other organs become involved. Powerful immune suppressing medications are often used to quiet this misdirected attack in lupus patients, so that organ damage is minimized or prevented and patients are given the highest quality of life possible. It is crucial that a correct diagnosis be made before these powerful drugs are used.

Another reason that lupus should not be categorized as arthritis is the importance of getting the correct treatment. I have swelling and joint pain in many parts of my body all the time from osteoarthritis, even when my lupus is under control. Recently, when I saw my rheumatologist, I had much more swelling than normal and in joints that are not normally affected by osteoarthritis. The swelling was new and unusual for me and my doctor knew and confirmed with laboratory results that my lupus was much more active, despite the powerful drugs I’m on.  This prompted my doctor to change the immunosuppressant I take to treat my lupus. Two separate diseases, two very different treatments.

Also, today the medications used to treat lupus are extremely limited. Only one drug has been approved specifically for lupus in the past 50 years! When lupus is miss-classified as a form of arthritis, it gets lost in a crowded diagnostic category. 

There are sources that state that there are more than 100 forms of arthritis. If you look on the internet it isn’t hard to find.  I don’t want to be misclassified as one of 100. As a person living with lupus every day, I want and need the attention to be on lupus as the separate disease entity it is, so that new, safer and effective medications will be developed and one day a cure will be found. I believe that we, the estimated 1.5 million Americans and our families who live with lupus, deserve our own seat at the funding, research and development table!

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