When you have rheumatoid arthritis (RA) and are taking a biologic drug, the best source of daily advice, coping advice and comfort can 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 honest conversations about everyday life with their illness, including the way they treat their medications. But some point out that it is important not to use these groups as a source of medical information.
Feel part of the community
“Connecting with other RA patients can also give you emotional support and a sense of empowerment. It creates a sense of camaraderie among all of us,” says Amy Barron, who takes a biological drug for her RA and lives in Cincinnati.
Barron connects with others with RA through the American College of Rheumatology Advocates for Arthritis volunteer group. In private conversations on social media, she often answers questions from people who are new to living with RA and taking biologics.
“One young mom was having trouble getting her child out of the car seat, so I was able to make some suggestions,” says Barron, a graduate nurse. “Other people say they have trouble cleaning the bathroom.
“Some people say they’re afraid 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 connect. “Just knowing that you also have rheumatoid arthritis helps them feel more secure about it,” she says.
People with RA can only see their rheumatologist every few months. They can turn to peers to discuss their experiences because they “really understand the reality” of everyday life with RA, says Cheryl Crow, an occupational therapist from Seattle. She has created an online group of patients called Rheum to CHRIVE, which meets once a week.
“The topic of biologics comes up quite often as part of a broader discussion of the risks and benefits of different medical decisions and treatment options,” says Crow, who herself has RA.
She notes that while helping to connect with peers for social support, you should contact your doctor to discuss the details of your RA treatment.
“I really believe most people think well,” she says. “But during my last two decades of living with RA and as part of many social media groups, I have seen an alarming amount of misinformation or unnecessary fear – especially when it comes to drugs, especially biologics, along with methotrexate.
“Seeking support and verification, instead of medical information, is the most appropriate and useful use of social media groups for patients with RA.”
Support can help alleviate fears
Stacy Courtnay, who was diagnosed with RA in 2003, runs the Live YES of the Arthritis Foundation! Connect Group for Georgia. Every other Saturday of the month, he talks to people online in private conversations on social media, often about biologics. He lives in Atlanta and takes biological medicine by infusion.
“When you first get a disease like RA, it’s 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. And it’s pretty scary, because biologics lower your immune system.”
When some members of her group said they feared a biological drug could cause lymphoma or other cancers, she and others talked about research showing that using a biological drug to reduce inflammation can reduce the risk of lymphoma.
The most common questions Courtnay hears in her group include:
- How long does it take for a biological drug to alleviate the symptoms of RA
- Side effects
- How to overcome fears of self-injection
- How to manage infusions
She shared with members of her group that she decided to take the biological drug by infusion because she was concerned about the reaction to the drugs without the presence of medical staff. And she discusses the details 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’m deleted for hours after that. Even on a biologic, I’m still battling RA fatigue, ”Courtnay says.
She tells those who are new to infusions to “take a nap and plan infusions in advance so you can take care of yourself,” she says. “We talk about the fact that with RA it’s sometimes okay to say no.”
Clearing up myths about biological drugs
Rick Phillips was diagnosed with RA in 2000. He has since taken five different biologics to try to control his illness, and his current benefits since 2014. He runs an online Arthritis Foundation connection group from his home in Carmel, IN and says he often clears up myths about biologics.
“Some people come into our conversations and say, ‘My doctor wants me to start taking a biological drug, and I don’t want to take it.’ They are concerned about the name ‘biological’. They associate it with something scary or bad, “and they may not understand the benefits,” he said.
“One person struggled for years with taking a biological drug because she didn’t meet anyone who would use it. I told her that taking the biologic had brought me back to life. She asked me, ‘Aren’t you afraid of side effects?’ I told her I was worried, but I put those fears aside and had a great experience. ”
Some members of his group live in rural areas hundreds of miles away from anyone else who has RA. Social media provides a link and support they might not otherwise find, Phillips says.
Members of his group often compare their experiences using different biological drugs for their RA.
“I have type 1 diabetes, so I don’t have a phobia of self-injection,” he says. “But I’ve heard some people in our group say they could never give themselves a biological injection. I’m sharing tips, like using an ice cube to numb the skin before the injection.”
They also talk about how some biologics now include citric acid to reduce injection stings, he says.
Drug costs and coverage
People taking biologics for RA are also connected to discuss the cost management of biologics. When a woman in the Phillips group said she could hardly afford her drug fees, members talked to her about the discount programs offered by drug manufacturers.
“We don’t consider ourselves insurance experts, but we are payment card experts,” he says.
Barron talks to members of his advocacy group. She tells them how to contact their legislators to educate them about RA and discusses laws aimed at expanding the provision 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-esteem. It can increase your self-confidence, ”says Barron. “I made new friends all over the country, from California to Florida, all thanks to RA advocacy groups. I decided to make arthritis my strength, not my weakness. ”