Patient Stories: Taking Immunosuppressants During the Coronavirus Pandemic

Every day the numbers grow larger — more people are diagnosed with COVID-19, more people are hospitalized, and more of us are at risk of infection ourselves. The public, by now, knows that the elderly and those with serious health issues such as cancer, diabetes, lung disease and heart disease are high risk, but people taking immunosuppressant drugs fall into the high-risk category as well.

“Immunocompromised people have an underlying condition that reduces their actual ability to respond effectively to infections, while people on immunosuppressive drugs can become compromised as a result of the medication they’re taking,” Rheumatologist Doug Roberts, MD, told Health.com.

Immunosuppressants are a class of drugs, including biologics and corticosteroids, that suppress the body’s immune response and reduce the body’s ability to fight infection. Immunosuppressants are commonly used to treat autoimmune disorders such as lupus, psoriasis and rheumatoid arthritis and are also prescribed as anti-rejection drugs in the case of organ transplant.

Immunocompromised patients should follow current coronavirus guidelines such as self-isolation and frequent hand washing, and should seek out professional medical advice regarding any specific concerns. Of course, most immunocompromised patients are already familiar with recommended preventive measures. It’s the wider public who needs to take into consideration that just because someone looks young and able-bodied does not mean that they will not contract the virus and have serious side effects.

Health Central advises individuals with chronic illness to be aware that their COVID-19 symptoms may feel similar to flare-ups. The most important symptoms to pay attention to and differentiate between your illness and the virus are temperature and coughing. Pay attention to body chills, sore throat, headache, and vomiting as well. Shortness of breath, pressure or pain in the chest and confusion should all be taken seriously. When in doubt, contact your healthcare provider immediately or call 911.

PLEASE NOTE: Being vulnerable to COVID-19 doesn’t mean you should necessarily stop taking your medication. Please consult with your healthcare provider for personalized guidance based on your medical condition and history.

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Patient Stories: Taking Immunosuppressants During the Coronavirus Pandemic

Kim O’Donnell, 58, of Staffordshire, England suffers from Sjögren’s syndrome, an autoimmune disorder which causes joint pain, swelling and stiffness all over her body. Swallowing, gluten intolerance and dry eyes are other debilitating symptoms O’Donnell experiences. She takes sulfasalazine every day, which compromises her immune system and puts her at risk of catching bacterial and viral illnesses.

“On top of this I have high blood pressure controlled by medication and have had a periodically leaking heart valve which causes breathlessness,” O’Donnell told MedTruth.

O’Donnell’s situation is life-threatening as she is in the at-risk age group for people who could contract the coronavirus. Although she is self-isolating, Kim feels “very vulnerable and tearful a lot of the time,” as she worries about the virus’s peak.

In June, O’Donnell left her job as a nurse to start her own business creating accessories for dogs, but as a result of the coronavirus, things are at a standstill.

“I am out of pocket already having paid the stall fees and will also lose out on any income generated at these events,” she said.

O’Donnell asked her doctor for 12 weeks of her regular medication in order to avoid going to the pharmacy, but they are unable to supply it to her.

“This means every four weeks someone will have to go there to get my tablets risking coming into contact with others who may have the virus,” she said. “Everything is so uncertain right now and I’m finding it really hard to be positive and not to panic.”

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Lee Chambers, a 34-year-old environmental psychologist and wellbeing trainer from Preston, England, takes the immunosuppressant drug methotrexate for his rheumatoid arthritis. Chambers undergoes regular blood tests to assess his white blood cell count. If the white blood cells are too low, he has to come off of the medication in order to recover.

“I’m aware that if I flare up, I will need steroid injections which also increase my chance of infection. Due to this, I’m understanding of the fact that I’m in a high-risk group and therefore the virus would be harder for me to fight against,” Chambers told MedTruth.

Trying to stay positive, Chambers said he struggles with his invisible illness and the public’s belief that he is young, fit and healthy.

“I have actively started social distancing, and over the past few weeks, I’ve used nitrile gloves in places with lots of contact points, such as offices, petrol pumps, while shopping. I have now moved to social isolation and have built a plan to ensure my well-being and mental health is boosted during these challenging times,” he said.

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Urban planner and ceramicist, Hayley Cranberry Small, 28, is the founder of Lutte Collective in Brooklyn, New York. She also recently launched “The IV Shirt” with Rebirth Garments, a shirt that can be taken on and off while hooked to an IV in your arm. Since the age of 16, Small has been taking immunosuppressant drugs for ulcerative colitis. Five years ago she began to take Remicade which she receives every eight weeks.

Small has been isolated for over a week but is still working at her day job where she said she has had to “advocate aggressively” and explain her immunocompromised condition.

“Having a suppressed immune system means that infections may last longer and may be more impactful towards my body than someone with a stronger immune system.”

“Self-isolation is lonely and making me spiral into depression. I am lucky that I am able to have therapy sessions over the phone and I am incredibly lucky to have my dog, Greta, at my side at all times,” she said.

Small said that she’s been relying on the Instagram account @covid19_messengers, a network of people who run errands and provide small gestures for people who need assistance.

“I also want to point out that many chronically ill and disabled people are often bedbound, homebound, or in isolation due to their illnesses as part of their everyday lives when there is no pandemic,” she said. “So all of this isn’t new to the disabled community. We know that we need to plan ahead for ourselves, and we know how to isolate to protect ourselves. We know how to care for ourselves and what kind of care we need, but it is the systemic barriers that allow us to die.

NOTE: Please check with the World Health Organization, the U.S. Centers for Disease Control and Prevention and your state and local public health departments for the latest updates on COVID-19 news, recommendations and advisories.

By S. Nicole Lane

S. Nicole Lane is a freelance journalist based in the southside of Chicago where she covers women’s health, the LGBTQ voice, arts, and entertainment. Her byline can be found in Playboy, Rewire News, i-D, Broadly and various other corners of the internet. She is also a visual artist who works with small-scale sculptures.

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