Lupus patients in vaccination limbo
Many lupus patients are still holding off on being vaccinated because they are waiting to have questions answered or to get permission from their doctors. However, accessing their doctors has become more difficult with the recent surge affecting operation of both public and private clinics.
“There is conflicting information about COVID-19 and the vaccines, confusing even for the general population,” said Dr Desiree Tulloch-Reid, consultant rheumatologist and president of Lupus Foundation of Jamaica.
Patients with autoimmune conditions like lupus and other rheumatic conditions are in a special situation because they have a dysfunctional immune system that is overreactive in some ways, and yet is less effective in coping with infections. In addition, many medications for lupus also suppress the immune response in order to control the disease.
“Common questions lupus patients have include: Is it safe to be vaccinated as a lupus patient? Will vaccination trigger a flare? Which vaccine is best to take as a lupus patient? Can I take the vaccine if I have had a blood clot? Will the vaccine work for me? Is the vaccine safe with my medications? Will my medications need to be stopped or adjusted in order to take the vaccine? These are all valid questions which we do have answers for and the answers are reassuring,” Tulloch-Reid said.
According to Dr Tulloch-Reid, lupus affects different persons in different ways. During a flare of lupus, she said the immune system is abnormally activated, causing increased inflammation.
“Symptoms of a flare may vary depending on the severity of the disease and which organs are involved; however, many lupus patients experience fatigue, malaise, joint pains, or even fevers, during a flare. This may resemble some of the common symptoms that anyone can get after a vaccination. Post-vaccination symptoms may cause some persons with lupus to worry that they are having a flare; however, these would usually improve spontaneously after 48 hours,” she said.
Dr Tulloch-Reid and colleagues are among several specialist physicians and other health professionals that volunteer with the Lupus Foundation of Jamaica monitoring the latest research and contributing to educational materials and programmes disseminated through its various platforms, keeping both health professionals and patients informed during the pandemic.
SAFE TO TAKE VACCINE
“Our main message is that patients with lupus can feel confident about taking their vaccinations: it is safe, it works to reduce your risk of severe COVID-19, you can take any available brand, regardless of your medication regimen,” Tulloch-Reid said.
“You do not need a doctor’s permission to be vaccinated. Patients, family members and the wider public are encouraged to maintain recommended precautions – limit exposure in public spaces, keep a safe distance, wear your mask, sanitise your hands often, as well as common surfaces or devices you handle,” Tulloch-Reid said.
“COVID-19 is extremely contagious; not everyone has symptoms and persons may transmit the infection without knowing it. The safest thing is to get vaccinated at the earliest opportunity and continue to follow the recommended protocols for the safety of yourself and persons around you,” she added.
Patients and the public are invited to view educational programming and information provided on the foundation’s YouTube channel, website and social media channels or contact the Foundation’s Learning Centre or Help Line for further information. Persons with lupus are also encouraged to become members of the Foundation to benefit further from monthly newsletters and support group meetings, WhatsApp group interaction, pharmacy discount programmes, free counselling and other benefits to help them manage their condition and do well.
“It is important for patients to have access to credible and pertinent information and Lupus Foundation is here to help: our volunteer rheumatologists and other specialists have been monitoring the research and have provided answers to Frequently Asked Questions on our website and other educational platforms,” Tulloch-Reid said.
Lupus Foundation of Jamaica is a member-based, volunteer-run charity in operation since 1984 dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research.