CHENNAI: When Alice Abraham was two years old, an initial diagnosis of her ankle swelling indicated rheumatoid arthritis. She started homoeopathic treatment and her condition improved. At the age of seven, she had difficulty reading from the blackboard. The eye specialist diagnosed her with uveitis (a group of diseases causing inflammation of the middle layer of the eye, or uvea) as a white layer was detected on the lens of her eyes. Uveitis can also be caused by an autoimmune disease — that discovery led to Alice being diagnosed with juvenile rheumatoid arthritis (JRA), a form of inflammatory arthritis like rheumatoid arthritis (RA) but distinct in terms of genetic markers and prognosis. For the next few years, she was administered homoeopathic and ayurvedic treatment but her joint pain and eyesight got worse.
What causes rheumatoid arthritis, an Immune-Mediated Inflammatory Disease (IMID) where the immune system attacks the tissue lining the joints on both sides of the body, is not clearly known, say doctors. Dr Ashok S Gavaskar, clinical lead - Orthopedics at Rela Hospital, says that research suggests it can be triggered by a combination of genetic patterns, environmental factors, such as smoking, or a virus/bacteria-caused attack on the immune system. “When the trigger attacks the tissues in the joint areas, the response is in the form of inflammation like pain, swelling, and stiffness in the joint areas, leading to joint degeneration, deformity, and contractures — that is arthritis. Severe RA cases may also lead to progressive destruction of the cartilage, ligaments, and bones,” he says.
Spot the disease
Elaborating on the phases of RA progression, Dr AR Kesavan, consultant orthopaedic surgeon, Gleneagles Global Health City, says, “The synovium, a soft-tissue membrane that lines joint capsules, provides fluid that lubricates our joints, leading to friction-free movement. In the early stages of RA, the synovium becomes inflamed causing synovitis, which could be a signal for arthritis. In the next stage, the synovial inflammation leads to joint cartilage damage, resulting in poor joint mobility. In the severe stage, the inflammation reaches the bones, which means a bone deformity can occur. In the end RA stage, the joints no longer work and joint replacement surgery is required.”
What are a few warning signs to watch out for? He says, pain that is symmetrical (when both hands show signs of inflammation, for instance) and that which recurs for over two months alongside post-slumber morning stiffness lasting 30 minutes or more. Aches along more than one or two joints need to be monitored too. Blood investigations can confirm the disease.
Dr Gavaskar says that as RA is a spectrum, some patients may even require surgery, while mild cases can be treated with drugs. To reduce the inflammation and normalise the overactive immune system, a combination of disease-modifying anti-rheumatic drugs are administered, following which the patient is tested for signs of reduction in the disease activity. If the disease is too severe for remission, patients will require advanced treatment involving biological drugs (including antibodies, genes, cells, etc) that are designed to target specific parts of the immune system that triggers the inflammation. These drugs are expensive and are usually administered for six to 46 weeks, he adds.
Care for patients
Elaborating the role of surgical intervention, Dr Gavaskar says, “For those with irreversible damage, a joint replacement surgery can help improve mobility and alleviate pain.” Physical therapy is vital for RA patients, which aids in both mobility and pain relief. Dr Gavaskar emphasises regular exercise as joints have to be nourished by constant activity to curb stiffness. As depression is a likely outcome, patients’ mental health requires attention as well.
Care and support are essential needs of people living with disabilities, including chronic pain. For instance, a hybrid working model, like remote work, is a workplace accommodation that helps persons with disabilities.
Living with chronic pain
Nivedita, a counselling psychologist, who was diagnosed with rheumatic fever, another autoimmune disease, revealed that she was taking penicillin for nearly nine years post her diagnosis. The extended medication also gave her side effects, including weight gain, fatigue, and nausea. Following the nationwide shortage of the drug, she embarked on acupuncture therapy, and along with yoga, a balanced diet, and weight management, her disease has gone into total remission mode.
“I never gave up even with chronic pain preventing me from doing things like art that could divert my mind. The pain made me want to wail. Nevertheless, I persisted because I wanted to get better. Everyone from my partner and family to neighbours tended to me fully and helped with tasks like cooking and cleaning. Chronic pain cannot be managed with fear. Never lose hope or willpower,” she shares. Describing the pain, Nivedita elaborates that it felt like a continuous state of pins and needles had afflicted her joints, “When that sensation did not go away, especially during cold weather, the joints became stiffer, and with brittle bones, I became prone to fractures.”
Identifying what helps her body function better, and researching symptoms helped Alice. “Medication, diet, exercise can help alleviate conditions but knowledge is most important. The pain flare-ups catch you unexpectedly and impair daily life in different ways. Even after waking up from slumber, which is a period of rest for the joints, I still wake up tired. Throw in medication side-effects and poor immunity into the picture. I would advise those with chronic pain to take everything one day at a time and not overexert yourself,” she says.
(This is a series on autoimmune disorders where we bring the voice of experts on the conditions, along with case studies of people who live with them.)