If you have rheumatoid arthritis (RA) and are taking a biologic, connecting with others who are in the same boat may be the best source of everyday advice, coping tips, and comfort. People with RA say they enjoy engaging in online support groups with other patients to openly discuss their daily life with the disease, including how they manage their medications. However, it’s important to note that these groups should not be used as a source of medical information.
„Connecting with other RA patients can also provide emotional support and a sense of empowerment. It creates a sense of camaraderie among all of us,“ says Amy Barron, who takes a biologic for her RA and lives in Cincinnati. Barron connects with other RA patients through the American College of Rheumatology’s „Advocates for Arthritis“ volunteer group. In private social media chats, she often answers questions from people who are new to living with RA and taking a biologic.
„A young mother was having trouble getting her child out of a car seat, so I was able to offer some suggestions,“ says Barron, a trained nurse. „Other people talk about having difficulty cleaning their bathrooms. Some people talk about being scared to take a biologic because they fear side effects. I tell them that joint damage from RA could be even worse if you don’t take a biologic.“
She says that having RA herself helps to build a connection. „Just knowing that you also suffer from rheumatoid arthritis gives them more confidence,“ she says. People with RA may only see their rheumatologist every few months. They may turn to like-minded individuals to talk about their experiences because they „truly understand“ the reality of daily life with RA, says Cheryl Crow, an occupational therapist in Seattle. She founded an online patient group called Rheum to THRIVE, which meets weekly.
„The issue of biologics often comes up as part of a larger discussion about the risks versus benefits of various medical decisions and treatment options,“ says Crow, who also has RA. She emphasizes that while connecting with like-minded individuals for social support is helpful, you should consult your doctor to discuss details of your RA treatment.
„I really believe that most people mean well,“ she says. „But in the two decades I’ve lived with RA and been part of many social media groups, I’ve seen an alarming amount of misinformation or unnecessary panic – especially when it comes to medications and biologics, along with methotrexate.“
Seeking support and affirmation rather than medical information is the most appropriate and beneficial use of social media groups for RA patients. Amy Barron Stacy Courtnay, diagnosed with RA in 2003, moderates the Arthritis Foundation’s Live YES! Connect group for Georgia. Every second Saturday of the month, she speaks online in private social media chats with people, often about biologics.
„When you are first diagnosed with a disease like RA, it’s very scary,“ says Courtnay. „Then you get a prescription for your first biologic and immediately turn to Google to look up everything about the medication. That’s also pretty scary because biologics weaken your immune system.“
When some members of her group expressed concerns that a biologic could cause lymphomas or other cancers, she and others discussed research findings showing that using a biologic to reduce inflammation can lower the risk of lymphoma. Common questions Courtnay hears in her group include:
– How long does it take for a biologic to relieve RA symptoms?
– Side effects
– How to overcome fears of self-injections
– Managing infusions
She shared with her group members that she chose to take her biologic as an infusion because she feared a medication reaction without the presence of medical personnel. And she discusses the details of her treatment.
„Infusions take time. I tell them that when I go to the infusion lab, I am there for hours to receive treatment, and then I am completely exhausted for hours. Even with a biologic, I still struggle with RA fatigue,“ says Courtnay.
She advises those with no experience with infusions to „take a nap and plan infusion days in advance, so you can take care of yourself,“ she says. „We talk about how it’s okay to say no with RA sometimes.“
Rick Phillips was diagnosed with RA in 2000. Since then, he has taken five different biologics to control his disease and has been using his current one since 2014. He leads an Arthritis Foundation online connection group from his home in Carmel, IN, and says that he often clarifies myths about biologics.
„Some people come to our conversations and say, ‚My doctor wants me to start taking a biologic, and I don’t want to take it.‘ They are concerned about the name ‚biologic.‘ They associate it with something scary or bad and may not understand the benefits,“ he says.
„One person struggled for years to take a biologic because she had never met anyone who was using one. I told her that taking a biologic gave me my life back. She asked me, ‚Aren’t you afraid of side effects?‘ I told her that I had worries but pushed those fears aside and had a great experience.“
Some members of his group live in rural areas, hundreds of kilometers away from any other RA patients. Social media provides connections and support they may not otherwise find, says Phillips. Members of his group often compare their experiences with different biologics for their RA.
„I have type 1 diabetes, so I have no fear of self-injections,“ he says. „But I hear some people in our group say they could never give themselves a biologic injection. I give tips, such as using an ice cube to numb the skin before the injection.“
People taking biologics for rheumatoid arthritis also connect to discuss coping with the costs of biologics. When a woman in Phillips‘ group said she was having trouble paying the copayments for her medications, group members talked to her about discount programs offered by drug manufacturers.
„We don’t pretend to be insurance experts, but we are experts on copay cards,“ he says.
Barron talks to her group members about advocacy. She explains how they can contact their legislators to educate them about RA and discusses bills aimed at expanding insurance coverage for biologics.
As an advocate, you can have more control over your life with RA, she says.
„Advocacy strengthens your self-esteem and self-worth. It can lead to a gain in confidence,“ says Barron. „I have made new friends across the country, from California to Florida, all thanks to RA interest groups. I have chosen to turn arthritis into my strength, not my weakness.“