While receiving a medical diagnosis is never easy, for patients dealing with a “mystery illness” and their families, a diagnosis can feel like a huge weight has been lifted. As a rheumatologist, helping patients get to the bottom of their health issues and take action to heal is the most rewarding part of what I do.
In many cases, patients and their families come to me after a long journey of trying to put the pieces together, and autoimmune disease is often the culprit.
Lupus is a type of autoimmune disease that can attack every single organ of the body, including blood cells. It results from a loss of immunologic tolerance, meaning your immune system starts to attack itself because it isn’t “tolerating” itself anymore. Because of the randomized and seemingly unrelated symptoms that it can cause, diagnosing it can be difficult and frustrating for patients. This is why it’s so important to spread awareness of lupus and autoimmune diseases in general so that patients can recognize the signs and advocate for their health. Let’s dive in!
As I mentioned, since lupus can impact every organ in our bodies, it can be difficult to make the connection between symptoms initially.
Lupus comes in many different forms. Some people have lupus of the kidneys called lupus nephritis. Some people only have joint pain and rashes. Others might have all or a mix of symptoms. It really depends on the individual.
I remember seeing patients in the hospital with newly diagnosed lupus who came in for headaches that turned into a coma. I am not saying this to instill fear, but simply to make the point that your health is important and only you know your body. If you feel like something is up, or you are experiencing a variety of symptoms that seem unrelated, advocate for yourself; there might just be a connection.
Every lupus patient is different, so here are some of the symptoms and medical diagnoses to be on the lookout for:
- Musculoskeletal – joint pain, muscle pain
- Heart – chest pain, vasculitis, blood clots
- Skin – body rash, malar rash, hair loss
- Kidney – lupus nephritis
- Gastrointestinal – gut dysbiosis, abdominal pain, lupus pancreatitis, lupus enteritis
- Pulmonary – shortness of breath, interstitial lung disease, pulmonary hypertension, alveolar hemorrhage
- Neuropsychiatric – neuropathy, psychosis, seizures, headaches, coma, meningitis
- Hematologic – anemia, leukopenia, thrombocytopenia
- Eye – painful red eyes, uveitis, scleritis
This is only 25% of potential diagnoses and symptoms that can come from a lupus patient, so you can see why it is such a difficult disease to diagnose!
Diagnosis and labs for lupus
This is where rheumatology is an art. We piece together the whole picture and make a diagnosis based on the facts in front of us, combined with our clinical experience and intuition.
Since lupus can affect every single organ, this disease, in particular, is difficult to diagnose, and not every patient is a textbook case. If the clinical signs are there and the labs match up, then it’s easy to diagnose, but if the labs don’t prove what we suspect, this is when we enter a gray area. 99% of lupus patients will have a positive ANA. However, I have seen my fair share of ANA-negative lupus patients.
Knowledge is power so ask your doctor to run these labs if you are concerned that lupus might be the culprit. Below is a list of the main labs I look at to help diagnose lupus. Not all of these labs have to be positive, but they serve as a piece of the puzzle.
- AntiNuclear Antibody
- Double Stranded DNA
- Complete Blood Count
- Antiphospholipid Syndrome Labs
- Comprehensive Metabolic Panel
- Complement Levels
- Smith Antibody
- RNP Antibody
- Urine protein/creatinine ratio
Early detection and prevention of lupus
Like other autoimmune diseases, lupus can potentially be preventable with a healthy lifestyle, but often, there can be environmental factors and other triggers outside of our control that cause it. Lupus is also genetic in some cases.
Having a family history of lupus or another autoimmune disease can be a risk factor for getting lupus. That’s why I always ask patients about their family history.
There are also times when some autoimmune labs come back positive, but the patient has no symptoms. The questions then are, “Is the patient in the very early phase of lupus without any symptoms?” Or, “Are these labs just positive, but there is nothing to worry about?”
Studies have shown that the autoantibodies in lupus can develop up to 10 years before the diagnosis of lupus is made. In the beginning, autoantibodies are made, and patients do not experience any symptoms or damage. Over time, the autoantibodies are more prevalent and start damaging cells.
Unfortunately, I hear cases of patients who are not referred to their rheumatologist in a timely manner since doctors don’t think about lupus as a cause of symptoms and don’t think of referring the patient to rheumatology. Patients go from one doctor to the next unable to figure out what is going on. That’s why it’s so important to have a good primary care doctor who can think of these diagnoses because they have a clear picture of your full medical history.
Natural treatment options for lupus
In addition to medications and traditional medical treatments that your doctor is likely to prescribe, lifestyle remedies are also critical. I believe in finding the right balance between medicine, alternative treatment options, and lifestyle changes for my patients. My focus isn’t to slap a bandaid on a problem but to get to the root of my patient’s health issues and help them to heal their body, mind, and soul. Here are a few treatment options to consider that can work in tandem to manage symptoms:
- Balanced diet and nurturing gut health – Research has shown that patients with systemic lupus erythematosus have gut dysbiosis, which means there is an imbalance of the bacterial flora in their intestines. Since lupus is a disease characterized by whole-body inflammation, it only makes sense that there is a connection to the gut as well since our guts act as our second brains and impact almost every function in our bodies. We didn’t think this way a decade ago, but now there is evidence of this. One way to try to put the gut bacteria back into balance other than medications is through food. What you put in and out of your body for lupus is so important. Fiber and phytonutrients play a huge role in building up the gut microbiome, and these two types of food nutrients send anti-inflammatory signals throughout the rest of the body, which can help improve different symptoms of lupus. Autoantibodies in lupus don’t just form one day and give you the disease the next. It’s a gradual process and takes time.
- Sleep and rest – Getting eight hours of sleep every night and resting is important for everyone but especially for autoimmune patients since our bodies are already working overtime to fight the battle within us. Sleep and rest are restorative and allow time for our bodies to focus on one thing – healing.
- Exercise – Our mental and physical health is closely intertwined. Exercise not only helps patients to release endorphins, but it is clinically shown to reduce stress and improve our gut health (along with a laundry list of other benefits)
- Vagus nerve stimulation – Musculoskeletal pain and fatigue are common features of lupus. The vagus nerve is a puzzle piece to the complicated, inflammatory pathways in our body so vagus nerve stimulation is a great treatment option. A study of 18 lupus patients received randomized transcutaneous auricular vagus nerve stimulation (taVNS) or sham stimulation for four consecutive days. What they found was that the taVNS group had decreased pain and fatigue compared to the sham group. Joint pain also improved in the experimental group. Blood levels of inflammatory cytokines did not significantly change in this study, but since it was only four days long, it may not have been enough time to see significant changes in blood level markers.⠀
- Pay attention to Vitamin D – Vitamin D plays a role in the immune system and can affect the pathophysiology behind lupus as well. While the correlation is debatable on vitamin D’s impact on lupus patients, 42% of U.S. citizens are vitamin D deficient, which can lead to fatigue, depression, and other symptoms that lupus patients experience. One study showed that fatigue was considered the most debilitating symptom in 53% of lupus patients, so making sure that their vitamin D levels are monitored is important in my book! It is important for lupus patients to take supplements if needed and have vitamin D levels checked regularly. I have noticed some of my patients’ fatigue and/or joint pain have improved when their vitamin D normalizes. Do not underestimate the power of vitamin D! It is underrated and can make a big difference.
It is possible for lupus patients to take control of symptoms
While lupus can be a challenging disease to diagnose and manage, it is possible for patients to take control of symptoms and live life to the fullest. Everyone is different, so finding the unique balance of lifestyle changes and treatment options for you is important.
As an autoimmune patient myself, I know how frustrating this can be to manage your health and the toll it can take mentally, but if I can do it, so can you!
If you or a loved one have been diagnosed with lupus or suspect that lupus or another autoimmune disease might be the culprit of your health struggles, speak up and be an advocate for your health. As I mentioned, rheumatology is often overlooked until symptoms get out of hand and the situation becomes dire, so arming yourself with information and becoming educated is the best option.