Everything You Need To Know About Lupus
Not to be confused with that werewolf character from Harry Potter (although, the Latin translation of the word is literally “wolf”), lupus is an autoimmune disease that causes inflammation.
Read on about one woman’s story – and how to lower your risk.
In 2007, Karina Finger, a former spa developer, was bitten by a tick while working in Knysna. The venom bypassed her immune system and went straight into her spinal cord and brain.
After being diagnosed with encephalitis/ meningitis, Karina was rushed to hospital to reduce the swelling on her brain. After experiencing seizures, memory loss and difficulty concentrating and communicating, she was booked off work for six months.
Karina began experiencing muscle pain, joint swelling and pain, fatigue, numbness in her arms and legs, scratchy eyes and mouth ulcers. “I could hardly walk – my legs felt like they were on fire,” she says. “I knew this wasn’t the result of a tick bite.” She self-medicated with ice-cold baths, painkillers, tranquillisers and anti-inflammatories.
Karina saw numerous doctors, who diagnosed her with fibromyalgia, conversion disorder, chronic fatigue syndrome and stress. Finally, her neuropsychiatrist and haematologist picked up inflammatory markers and a low white blood cell count.
After a year of investigating each diagnosis, Karina knew something was amiss and travelled to the US, where she saw a panel of doctors from the Lupus Foundation of America. They confirmed the beginning stages of systemic lupus erythematosus (SLE), a disease that can cause widespread inflammation, pain and organ damage. According to the Foundation’s website, “In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu).” There are no stats for SA, but of the estimated 1.5 million American lupus patients, 90 percent are women from ages 15 to 40. “Lupus is one of the most complex autoimmune diseases. It can affect almost every organ and presents differently in each person,” says Prof Helmuth Reuter, a rheumatologist and lupus specialist based in Stellenbosch.
Read this: What Causes Inflammation?
Karina was put onto steroids, antimalarials, anti-inflammatories and pain blockers, but returned to SA in extreme pain and became bedridden. Being around people or noisy places brought on tremors and overstimulated her central nervous system, causing it to shut down nerve communication.
A spinal tap found lymphocytes in Karina’s spinal cord, which is indicative of an inflammatory disease. Blood work and scans showed lesions on her brain, indicating a coexisting disease called vasculitis, where blood vessels narrow.
Karina’s neurologist put her on a weekly dose of Methotrexate, a chemotherapy drug. She also had three IVIG blood infusions over two years, where immunoglobulin from donors’ blood is infused into the body, causing the cells in the blood vessel walls to reset so the lupus doesn’t progress.
Karina’s lesions were getting worse and her neurological defect was becoming more obvious. Her US doctors finally diagnosed her with neuropsychiatric lupus cerebritis (certain areas of the brain don’t communicate with other parts due to swelling) as well as a secondary disease, antiphospholipid syndrome (a blood clotting disorder), and Sjögren’s (blood vessels narrowing in the eyes).
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Karina, now 41, needs to take rituximab, a chemo drug, every six months for two years, then once a year to keep her stable. She can’t commit to anything as she never knows how she will feel from one hour to the next. “My biggest challenge has been trying to explain my new lifestyle to others,” she says. Karina is unable to work, but had fortunately taken out a dread disease, disability and income protector policy. Her next step is to write a book and she has just moved into her “seaside sanctuary” in Bantry Bay.
Lower Your Risk
Ban rays. Watch out for ultraviolet light, a common lupus flare-up trigger.
See the correct expert. Stellenbosch’s Prof Helmuth Reuter, a rheumatologist, sees lupus patients and has ongoing clinical trials. You may also need to see a neurologist and neuropsychiatrist.