Lupus, a chronic autoimmune disease that can damage any part of the body, can take on average nearly six years to diagnose from the time an individual first notices symptoms. What’s more, the majority of people are incorrectly diagnosed initially — sometimes multiple times. Our Sudipta Chakraborty shares her experience with lupus:
Q: What were your initial symptoms?
A: Joint pain was really my first symptom – I’ve had it honestly for as long as I can remember, especially in my lower legs and feet. The aches sometimes are debilitating! The other inital symptom was a mysterious skin rash that started halfway through grad school, about 6 or 7 years ago. These small, red “spots” showed up only on my hands and seemed to be present right under the surface of the skin. They were painful to the touch, and if they appeared over a joint in my hand, I could barely use that joint due to its stiffness and pain. At the time, the student health center chalked it up to stress, told me to take some Benadryl, and sent me home. Over time though, I realized that the spots would come and go, especially at times of high stress. Nothing in particular would make them go away, except for time. Eventually, these “spots” became more of a problem as my work became more computer-heavy – times of “flares” would make it hard to use a keyboard at all! Recently, I had yet another dermatologist take a look, and this time, they were able to take a biopsy. The results came back as something called “pernio” – for the average, healthy person, this is an inflammatory skin response to extremely cold temperatures. But for me, these spots showed up at random times throughout the year – cold or hot. At this point, I was referred yet again to a rheumatologist, who repeated autoimmune-specific bloodwork. My other symptoms that have been persistent over time are extreme fatigue and sporadic, low-grade fevers and chills.
Q: Why did the diagnosis take so long to reach?
A: Autoimmune disorders are so tricky to both diagnose and treat. Most of the disorders have such a wide range of symptoms that vary from person to person. The symptoms can also disappear for some time and then return during flare-ups. They also can masquerade as so many other conditions. I was familiar with this terrible journey of ups and downs because of my dear mother, who has rheumatoid arthritis (RA). My mother suffered from mysterious symptoms for nearly 10 years before reaching an RA diagnosis. In fact, during those 10 years, many of the blood tests used to diagnose RA came out negative for her! She also suffered from joint pain, chills, and muscle aches. She and I share a mystery symptom that no doctor has been able to connect to either of our diagnoses – what I can only describe as a “charley horse” in our legs and feet that lasts entirely too long and causes severe pain. With such an array of symptoms, I can understand why it can be such a challenge to diagnose these diseases.
Q: What other diagnoses did you receive before being diagnosed with lupus?
Because of the extreme intolerance to cold and the chills, I have been tested many times for thyroid problems, particularly hypothyroidism. With the exception of one test several years ago, they’ve all been normal. Other times, because of the low-grade fever and chills, I’ve been told that I’m just fighting off a virus (which is entirely possible). Because of my mother’s RA, the autoimmune panel included tests for the rheumatoid factor (RF) among others – these have also been negative for me, in addition to tests that try to narrow down Sjogren’s syndrome.
Q: How did you eventually receive a diagnosis?
A: For me, the diagnosis is still not clearly defined – it has been called lupus due to the positive results from some specific auto-antibody blood tests that most patients with lupus have, including the antinuclear antibody (ANA), the anti-Smith antibody, and the anti-dsDNA antibody. But I’ve found that rheumatologists are still reluctant to give an outright diagnosis, probably because a lot is still unknown about these diseases. My diagnosis came out of not just those positive blood tests, but the fact that they’ve been positive for the last 5 years, and that my symptoms have been persistent for much longer than that.
Q: What do you want people to know about lupus?
A: I want people to know that early diagnosis and treatment can be key in a disease like lupus! While incurable right now, there are treatments that can be considered prophylactic in hopefully reducing flares and preventing the worsening of progression. I also want people to know that you’re not alone if you suffer from something on the autoimmune spectrum. My role at PRA in the clinical trial transparency group strongly correlates with my longstanding passion in life – to help the general public better understand science and the medical world. Transparency and awareness about these conditions are so important, especially when it seems that so many people suffer from them, yet they don’t really talk about them. People with chronic illnesses often view them as their greatest weakness, and sometimes that can bring on feelings of shame and depression (a common comorbidity with autoimmune diseases). But after being a part of my mother’s RA journey, I can tell you that I’ve never met someone stronger than her. She is my muse when it comes to perseverance and strength through something that can be so physically and emotionally grueling – and now, with my dear 1-year-old son being such a wonderful and vibrant part of my life, I am determined to hope for the best with my current treatment plan and stay as active as possible for him and my family.