"What We Learned About Taking a Biologic for RA"
The decision to try biologics for your rheumatoid arthritis (RA) is a little like deciding to get married: You've got to be as ready for the rain clouds as you are for the happiness and unicorns. No doubt, biologics can be an effective and safe treatment for RA. But they can also be a big commitment on your part. You can only take the majority of them by IV or subcutaneous injection, they have some potential side effects, and they might lose their efficacy as well, like any other medication. So what do people with RA, who’ve been on these drugs for years, have to say about the experience? We asked a few to share their biggest lessons.
Improvement Isn't Instant
"Sometimes you don’t notice any difference for several weeks," says Molly Schreiber, 39, who has RA and type 1 diabetes and lives in Baltimore. "I initially thought I would notice change the next day." And Emil DeAndreis, 34, has learned that his symptom improvement, even after 10 years, is still gradual after an injection: "Maybe a couple days later, I feel my joints start to loosen up, and my morning stiffness is a bit milder," says DeAndreis, who lives in San Francisco.
Both experiences are totally normal, says rheumatologist Michael George, M.D., of Penn Medicine in Philadelphia. It might take your body time to respond to treatment, and that's ok.
It's Just Fine to Be Nervous
Moving on to a biologic can feel like a big step, says 36-year-old Mariah Zebrowski Leach, who lives in Louisville, CO. Diagnosed with RA in 2008, she was so apprehensive about her first infusion that her mom flew from California to Colorado to accompany her: "Even though I was 25!" she says. "In the end, it turned out to be very easy and anti-climactic, but I was glad to have my mom there." If you're nervous before receiving your first biologic, be sure to discuss any concerns you have with your doctor, Dr. George says.
Short-Term Pain Means Long-term Gain
Hello, giving yourself an injection isn't exactly a comfortable feeling. Shots must be refrigerated, and some sting when you inject them. Cathy Kramer, 51, who lives in Naperville, IL, prevents that pain with this routine. "I get up, take it out of the refrigerator and put it in the bathroom. Then I take the dog for a walk so it has time to warm up a bit. I inject right after that," she says. Numbing the skin with ice or pinching it as you inject can also help. Infusions typically don’t cause the same stinging, but you might experience a little pain as the IV catheter is inserted.
Bring Something to Do to Your Infusion
Having a medication through infusion, or IV, can take some time—half an hour or up to several hours—depending on the biologic and dose you need. You’ll sit in an infusion chair with nowhere to go, and nothing to do, so plan accordingly. That's a lesson Zebrowski Leach learned from her first infusion 11 years ago. A mother of three, throughout the years, she’s used every minute in the infusion chair. "I learned to use that time to study or, after law school when I had kids, to watch a movie that I actually wanted to watch," she says. Use it as an excuse to do exactly what YOU want to do!
Find a Way to Remember Your Medication
Biologics work best when taken regularly, according to your doctor's prescribed schedule. But it’s so easy to forget your meds. Kramer takes her biologic, the injectable Enbrel (etanercept), on the same day of the week (Friday), every week. Also: "I have a reminder set up on my phone calendar, so it pops up," she says. "And I have it so it reminds me to switch sides" to avoid injection irritation.
You Can Plan Around Some Side Effects
When you're on biologics, you make new accommodations for side effects. Schreiber has learned to ask family and friends for help after Rituxan (rituximab) infusions every four months. "I get a huge increase in joint pain following my infusion. I also feel fatigued and just ill," she says. But about 48 hours after her infusion, the long-lasting benefits allow her to work and stay active with her kids. Dr. George says that patients can lean on their healthcare providers for assistance, too. "We will be there to help address any side effects that might come up," he notes.
There Can Be Some Trial and Error
If you start on one biologic, it doesn't mean you’ll have to take that one forever. "I emphasize to people starting any new medication that this is not a long-term commitment," Dr. George says. "We are trying it for a couple of months to see how well it works. If it isn't working well, or if there are side effects, we can always stop it." Zebrowski Leach has been on five biologics. She's had to find options that worked safely with pregnancy and breastfeeding, in addition to easing RA symptoms. She's learned: "I don’t have to stick with a mediocre treatment, and I don't have to limit my life choices based on a particular medication."
Feeling Better Is Possible
When you live with active RA, you get used to feeling unwell. Then a biologic works and you learn again the feeling of lightness that comes with not being sick. That's happened for DeAndreis. He's learned to embrace how better health is possible for him on his biologic, Orencia (abatacept). "For me, biologics are so effective that I don't have to take them at the prescribed once-a-week dosage," he says (which his rheumatologist is aware that he does). "I can usually spread out a dose for two to three weeks without my symptoms coming back."
Be Proud of Yourself
You've persevered and found a biologic medication that works for you—be proud of yourself. "Many patients are happy with the treatment they are on, especially if it has taken a long time to find treatment that works well," Dr. George says. Zebrowski Leach is. And she's proud of how much she’s done to find the right biologic: "It's a pretty big life change to go from someone who takes a prescription or two by mouth to someone who regularly jabs a needle in her leg without much thought and keeps a sharps container in the laundry room," she says. "It's OK if accepting that life change is a process."
You're Stronger Than You Know
Being on a biologic that works makes you believe that anything is possible. You remember a dream you used to have, or start a new one, and then begin to think about making your dream a reality. Because, why not? Kramer was resistant to going on a biologic almost 10 years ago. Now she can work full-time, something she's sure she couldn't do without it. The biggest lesson she’s learned? "You're stronger than you ever thought you could be, and things can get tough, but somehow — and I see that in our community — we all seem to work it out."
Editor's note: Lene Andersen contributed to this slideshow.