When you have rheumatoid arthritis (RA) and are taking a biological drug, the best source of daily advice, handling tips, and comfort may be people who are in the same boat.
People with RA say they like to get in touch with other patients in online support groups to share honest talk about everyday life with their illness, including how they handle their medication. However, some point out that it is important not to use these groups as a source of medical information.
Feel part of a community
“Connecting with other RA patients can also give you emotional support and a sense of empowerment. It breeds a sense of camaraderie among all of us,” says Amy Barron, who takes a biologist 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 chats on social media, she often answers questions from people who are new to life with RA and to taking a biological drug.
“A young mother was having trouble getting her baby out of the car seat, so I was able to come up with some suggestions,” says Barron, a registered nurse. “Other people say they have a hard time cleaning their bathroom.
“Some people talk about being afraid to go on a biologic drug because they are worried about side effects. I tell them that if you do not go on a biologic drug, the damage to your joints from RA can get even worse.”
She says the fact that she herself has RA helps them bond. “Just knowing that you also have rheumatoid arthritis helps them feel more secure about it,” she says.
People with RA may only see their rheumatologist every few months. They can 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 set up an online patient group called Rheum to THRIVE, which meets weekly.
“The topic of biological drugs comes up quite often as part of a larger conversation about risks vs. benefits of different medical decisions and treatment options,” says Crow, who himself has RA.
She notes that although it helps to contact peers for social support, you should consult your doctor to discuss details of your RA treatment.
“I really think most people mean well,” she says. “But during my last two decades, where I’ve lived with RA and been a part of many social media groups, I’ve seen an alarming amount of misinformation or unnecessary fear-manger – specifically when it comes to medicine, and biological drugs specifically, together with methotrexate.
“Seeking support and validation, rather than medical information, is the most appropriate and beneficial use of social media groups for RA patients.”
Support can help alleviate fear
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 chats on social media the second Saturday of every month, often about biological drugs. She lives in Atlanta and is taking a biological drug by infusion.
“Once you get a disease like RA, it’s very scary,” Courtnay says. “Then you get a prescription for your first biological drug, and you immediately go to Google to find out all about the drug. It’s also pretty scary because biological drugs lower your immune system.”
When some members of her group said they were afraid that a biological drug could cause lymphoma or other cancers, she and others talked about research showing that using a biological drug to lower inflammation can reduce the risk of lymphomas .
The most common questions Courtnay hears in his group include:
- How long does it take for a biological drug to relieve RA symptoms?
- Side effects
- How to overcome the fear of self-injection
- How to handle infusions
She told her group members that she chose to take her biological drug as an infusion because she was anxious to get a reaction to medication without medical staff present. 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 get my treatment, and then I get wiped out for hours afterwards. Even on a biological drug, I still struggle with RA fatigue,” says Courtnay.
She tells those new to infusions to “take a nap and plan ahead for infusion days so you can take care of yourself,” she says. “We talk about that with RA, it’s OK to say no sometimes.”
Clearing myths about biology
Rick Phillips was diagnosed with RA in 2000. He has been taking five different biologic drugs since then to try to control his disease and has been using his current one since 2014. He leads an Arthritis Foundation online liaison group from his home in Carmel, IN, and says he often clears up myths about biological drugs.
“Some people come into our conversations and say, ‘My doctor wants me to start on a biological drug, and I do not want to take it.’ “They’re worried about the name ‘biological’. They associate it with something scary or bad” and may not understand the benefits, “he says.
“One person struggled to take a biological medicine for years because she had not met anyone else who used one. I told her that taking a biological medicine gave me my life back. She asked me, ‘Are you not scared? for side effects? ‘ I told her I was worried, but I put that fear aside and I’ve had a great experience. “
Some members of his group live in rural areas hundreds of miles from everyone else who has RA. Social media provides connection and support that they otherwise could not find, Phillips says.
Members of his group often compare their experiences with using different biological drugs 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 they could never give themselves a biological injection. I share tips, like using an ice cube to numb your skin before the injection.”
They also talk about how some biological drugs now include citric acid to reduce the sting of the shoot, he says.
Drug costs and coverage
People who take biological drugs for RA also connect to talk about controlling the cost of biological drugs. When a woman in Phillips’ group said she was struggling to afford her drugs, members talked to her about discount programs offered by drug manufacturers.
“We do not appear to be insurance experts, but we are experts in payment cards,” he says.
Barron talks to his team members about advocacy. She tells them how to contact their legislators to educate them about RA and discusses bills aimed at expanding the insurance coverage of biological drugs.
Being a lawyer can help you feel more in control of your life with RA, she says.
“Advocacy builds your self-esteem and your self-esteem. It can lead you to a gain in confidence, ”says Barron. “I’ve 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.”