When you have rheumatoid arthritis (RA) and take a biologic, the best source of daily-life advice, coping tips, and comfort may be people who are in the same boat.
People with RA say they like to connect with other patients in online support groups to share frank talk about daily life with their disease, including how they manage their medications. But some point out that it’s important not to use these groups as a source of medical information.
“Connecting with other RA patients can give you emotional support and a feeling of empowerment, too. It breeds 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 others with RA 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 life with RA and to taking a biologic.
“One young mom was having problems getting her child out of the car seat, so I was able to make some suggestions,” says Barron, a registered nurse. “Other people say they have difficulty cleaning their bathroom.
“Some people talk about being scared to go on a biologic because they’re worried about side effects. I tell them that if you don’t go on a biologic, the damage to your joints from RA could be even worse.”
She says the fact that she has RA herself helps them to bond. “Just knowing that you have rheumatoid arthritis, too, helps them feel more confident about it,” she says.
People with RA might only see their rheumatologist every few months. They may turn to peers to talk about their experiences because they “really get the realities” of everyday life with RA, says Cheryl Crow, an occupational therapist in Seattle. She created an online patient group called Rheum to THRIVE, which meets weekly.
“The topic of biologics comes up fairly frequently as part of a larger conversation about the risks vs. benefits of various medical decisions and treatment options,” says Crow, who has RA herself.
She notes that while it helps to connect with peers for social support, you should turn to your doctor to discuss specifics about your RA treatment.
“I truly believe most people mean well,” she says. “But over my last two decades of living with RA and being a part of many social media groups, I have seen an alarming amount of misinformation or unnecessary fear-mongering — specifically when it comes to medications, and biologics specifically, along with methotrexate.
“Seeking support and validation, rather than medical information, is the most appropriate and beneficial use of social media groups for RA patients.”
Stacy Courtnay, who was diagnosed with RA in 2003, facilitates the Arthritis Foundation’s Live YES! Connect Group for Georgia. She talks to people online in private social media chats on the second Saturday of each month, often about biologics. She lives in Atlanta and takes a biologic by infusion.
“When you first get a disease like RA, it is very scary,” Courtnay says. “Then you get a prescription for your first biologic, and you immediately go to Google to look up everything about the drug. That’s pretty scary too, because biologics lower your immune system.”
When some members of her group said they were afraid a biologic could cause lymphoma or other cancers, she and others talked about research that shows that using a biologic to lower inflammation can reduce lymphoma risk.
The most common questions Courtnay hears in her group involve:
- How long it takes for a biologic to relieve RA symptoms
- Side effects
- How to overcome fears about self-injections
- How to manage infusions
She shared with her group members that she chose to take her biologic by infusion because she was anxious about having a reaction to medication without medical staff present. And she discusses the particulars of her treatment.
“Infusions take time. I tell them that when I go to the infusion lab, I’m there for hours to get my treatment, and then I am wiped out for hours afterward. Even on a biologic, I still struggle with RA fatigue,” says Courtnay.
She tells those who are new to infusions to “take naps and plan ahead for infusion days, so you can take care of yourself, ” she says. “We talk about the fact that with RA, it’s OK to say no sometimes.”
Rick Phillips was diagnosed with RA in 2000. He’s taken five different biologics since then to try to control his disease and has used his current one since 2014. He leads an Arthritis Foundation online connect group from his home in Carmel, IN, and says he often clears up myths about biologics.
“Some people come into our talks and say, ‘My doctor wants me to start a biologic, and I don’t want to take it.’ They’re concerned about the name ‘biologic.’ They associate this with something scary or bad” and may not understand about the benefits, he says.
“One person fought taking a biologic for years because she had not met anyone else who used 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 was concerned, but I put those fears aside, and I have had a great experience.”
Some members of his group live in rural areas hundreds of miles from anyone else who has RA. Social media provide connection and support that they couldn’t find otherwise, says Phillips.
Members of his group often compare their experiences using different biologics for their RA.
“I have type 1 diabetes, so I have no self-injection phobia,” he says. “But I hear some people in our group say that they could never give themselves a biologic injection. I share tips, like using an ice cube to numb your skin before the injection.”
People who take biologics for RA also connect to talk about managing the costs of biologics. When a woman in Phillips’ group said she struggled to afford her drug copays, members talked to her about discount programs offered by drug manufacturers.
“We don’t hold ourselves out as insurance experts, but we are copay card experts,” he says.
Barron talks with her group members about advocacy. She tells them how to contact their legislators to educate them about RA and discusses bills that aim to expand insurance coverage of biologics.
Being an advocate can help you feel more in control of your life with RA, she says.
“Advocacy builds your self-esteem and self-worth. It can lead you to a gain in self-confidence,” says Barron. “I have made new friends all over the country, from California to Florida, all because of RA advocacy groups. I decided to make arthritis my strength and not my weakness.”