I remember sitting in the cold, sterile room waiting for the doctor. I had gone through what felt like every scan, test, or exam under the sun. The doctor had all the results. The only thing left was a diagnosis, a treatment plan, a magic pill – anything other than throwing his hands in the air and passing me off to someone else like all of my previous doctors had done.
When he finally came in, he said, “You have a lupus-like autoimmune disease.”
As you can imagine, confusion doesn’t justify how I felt in that moment. What does that mean? Is this a diagnosis? Do I have lupus or not? And what the hell is a “lupus-like autoimmune disease”?
This doctor was supposed to connect the dots and put the puzzle together. Over 15 doctors, 10 different unrelated diagnoses, and countless meds and treatments, and now a “lupus-like autoimmune disease”? WHAT!?!?
Meet Lupus: The Great Imitator
Lupus, or systemic lupus erythematous (SLE), is a chronic autoimmune disease that affects over 1.5 million Americans. An autoimmune disease means your immune system malfunctions and attacks your healthy tissues as if they are a dangerous virus or bacteria. As a result, autoantibodies are created that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage to various parts of the body. Lupus can take many different forms and can attack any part of your body, most commonly skin, joints, heart, lungs, blood, brain, or kidneys.
Something not commonly known about this disease is that no single test can diagnose lupus. Symptoms vary widely from patient to patient, making it very hard for a doctor to recognize. It is known as the “great imitator” because its symptoms mimic so many other illnesses, which leads to misdiagnoses and makes lupus extremely challenging to diagnose. The symptoms of lupus vary widely and come and go unpredictably.
Symptoms of lupus shared with several systemic autoimmune diseases (connective tissue diseases):
- Raynaud’s disease
- Muscle and joint pain
- Extreme fatigue
- Hair loss
- Weight loss or gain
- Low white blood cell count
- Antinuclear antibody (ANA)
- Rheumatoid factor
- High ESR
- RNP antibody
- SSA antibody
Lab tests cannot give a definitive diagnosis because of the many limitations of the disease, including the lack of a lab test to determine whether a person has lupus. In addition to various symptoms of lupus mimicking other conditions, the test results that suggest lupus can be due to a number of other illnesses and conditions. To make diagnosing lupus even more complicated, a test result may be positive one time and negative another time or produce different results altogether depending on the lab it’s tested in.
Diagnosis of Last Resort
To determine if you have lupus, your doctor needs to look at the entire picture, including medical history, symptoms and test results. Diagnosis is usually based on a detailed clinical examination and adapted laboratory tests.
Lupus is commonly diagnosed by process of elimination. Many of the diseases lupus mimics can be diagnosed by a single lab test or combination of tests and characteristics. Therefore, once all other conditions have been exhausted, lupus is diagnosed as a last resort.
According to Dr. Donald Thomas, a physician who specializes in lupus, the only 100% accurate and quick way to diagnosis lupus is through a kidney biopsy if someone has kidney inflammation or a skin biopsy if someone has a specific lupus rash. Otherwise, physicians are stuck using the criteria listed below.
“You have to wait until everything comes together perfectly before lupus can be diagnosed.” – Dr. Thomas
According to the American College of Rheumatology, at least 4 of the 11 criteria of lupus need to be present for lupus to be diagnosed:
- Malar rash – a butterfly shaped rash across cheeks and nose
- Skin rash – raised red patches
- Photosensitivity – unusually strong reaction to sun light, causing a rash or flare
- Mouth or nose ulcers – usually painless
- Nonerosive arthritis – inflammation in two or more joints.
- Cardio-pulmonary involvement – inflammation of the heart lining and/or lungs
- Neurologic disorder – seizures and/or psychosis
- Kidney disorder – increased protein or clumps of red cells in urine
- Blood disorder – anemia caused by damaged red cells, low white cells or low platelet count
- Immunological disorder – when your immune system attacks healthy cells
- Antinuclear antibodies (ANA) – positive blood test not induced by drugs
While there is no known cure for lupus, there are several effective treatment options available. Traditional medications approved to treat lupus by the U.S. Food and Drug Administration (FDA) includes corticosteroids such as prednisone or hydrocortisone, antimalarials such as hydroxychloroquine (Plaquenil), and acthar (repository corticotrophin injection). There are many other medications used “off label” to treat the symptoms of lupus such as non-steroidal anti-inflammatory drugs (NSAIDs), immune modulating drugs (immunosuppressive) and anticoagulants. Many of these drugs suppress inflammation and treat some of the symptoms of lupus, but consequently result in short-term side effects including swelling and weight-gain, and long-term side effects including weakened or damaged bones, high blood pressure, stretch marks on the skin, damage to the arteries, diabetes, infections, and cataracts.
There are additional complementary or supplemental alternative options for lupus. Some of the recommended supplements include fish oil, vitamin A, vitamin D, vitamin E, DHEA, turmeric, boswellia extract, ginkgo biloba, pine bark and evening primrose oil. The alternative therapies and treatments recommended for lupus include diet modifications, therapeutic massage, chiropractic care, acupuncture, yoga, meditation, herbal medicine, hydrotherapy, mind/body medicine and traditional Chinese medicine.
As I Look Back
Whether it’s a confident doctor saying you have lupus or a shaky “lupus-like autoimmune disease” diagnosis from a doctor, it can seem utterly overwhelming.
The biggest thing I learned from my diagnosis experience is that the actual diagnosis isn’t necessarily the most important thing. Instead of searching for answers, your energy can be more effective focused on finding treatments that work for you and can alleviate your symptoms.
If I were to go back 2 years ago to that initial diagnosis, I would give myself the following advice: make a list of all of your symptoms starting with what you perceive to be the most severe, concerning, or life-altering, and start there. Take it one symptom at a time and don’t let yourself get bogged down by the big picture.
Written by Erica Joy.
Erica Joy is a twenty something chronic illness & mental health blogger and advocate. She is from NYC and loves photography, writing, and traveling. On her blog, HopenlyMe, she shares her experiences and gives advice and tips on living with a chronic or mental illness. Erica created her blog hoping to help others aspire to a life that brings them joy. She is battling lupus, fibromyalgia, IBS, pelvic floor dysfunction, Hashitoxicosis, depression and anxiety.