Without this medication, she struggles to walk up a flight of stairs. Or stay awake until her 6-year-old son, Jacob, goes to bed. Or just function at all. Davidson recently had to stop her biologic treatment for rheumatoid arthritis (RA) prior to a minor a surgery, and the difference is significant.
“The simplest of tasks are difficult to do because of fatigue and flares,” says Davidson, who shares her patient experience on her blog, Chronic Eileen.
With the help of her medication—which is Actemra (tocilizumab)—she’s able to “handle some of the smallest things a healthy person would normally take for granted.”
But Davidson, who lives in Vancouver, British Columbia, and was diagnosed with RA in 2015 (she also has osteoarthritis, or OA), hasn’t had the easiest time on biologics, either. She’s experienced sleep disturbances, increased depression, nausea, and stomach pains on previous types of the drug.
All biologics, which are large protein antibodies that target the inflammatory response that causes RA and are given either by infusion (IV) or injection, have a long list of potential side effects just like most medication. They’re also powerful healers. The key is finding the right balance. “Biologics are generally more effective in treating RA symptoms than non-biologic medicines, and even in some cases, safer,” says Justin Peng, M.D., a rheumatologist at Arthritis and Rheumatism Associates in Washington, D.C.
“As with all medications, the risks and benefits should be discussed with the doctor so that the best treatment program can be developed for the individual patient.”
The goal always? Reducing your RA activity as much as possible. And when you know how biologics might make you feel—both positively and potentially not so—you’ll be better able to navigate any pitfalls and make smart changes to get you where you need to be.
Side effects include, but aren’t limited to these (in order of most to least common):
Yes, some of these side effects are scary, including the possibility of cancer (“although studies are mixed and a causal relationship has not been proven,” Dr. Peng says). But biologics are worth your consideration even with these potential risks, he says.
Let’s walk through two of the most common side effects in more detail.
“These medicines are all working to suppress the immune system in a way that then translates into reduced inflammation and better quality of life,” says Brian Horgan, P.A.-C., a board-certified physician assistant at Tri-State Pain Institute in Erie, PA, a comprehensive pain- and arthritis-management center.
As a result, your body has fewer defenses against common viruses and bacteria. Published data suggests the risk for infection is higher in some populations than others: In an analysis of 5,596 patients on biologics with inflammatory chronic arthritis (including RA) or psoriasis, 4.2% (or 289 people), had infections severe enough for hospitalization. The risk was higher in the elderly or those with comorbidities. The most common infections were in the upper and lower respiratory tract—so basically, colds, sinus infections, pneumonia, and bronchitis.
Davidson had colds she couldn’t shake on her first biologic, Humira (adalimumab). While on a second, Orencia (abatacept), she developed a serious pelvic infection.
To lower your risk of infections while on biologics (and just in general, too), you don’t have to do much more than the usual. Dr. Peng recommends:
According to the Arthritis Foundation, these injection-site reactions can be “fairly common,” often when starting treatment with biologics (they're less common for infusions, which are delivered through an IV). This happened to Cathy Kramer, 51, who lives in Naperville, IL. She now injects Enbrel (etanercept) in her thigh after she developed an itchy rash on her stomach. Amgen, the company that makes Enbrel, lists injection site reactions as a common side effect (and the Arthritis Foundation notes that side effects labeled as “common” occur in 1 in 10 who take a drug).
“A local injection-site reaction is typically associated with a tissue irritation response surrounding the area where the medication was administered,” says Horgan. “Local reactions usually resolve within a few days. This is different from an anaphylactic or systemic allergic response, which can have serious implications.”
Here are some tips for reducing injection-site issues (which are “easily treatable”) before injecting a biologic, according to Dr. Peng:
Here’s the deal: Biologics can be “miracle drugs,” but like any other medication, they’re not perfect, says Horgan. So while you may think all of your symptoms will stop, it could be that they quiet down but with an occasional RA flare.
For Kramer, her flares went from lasting for months when not on biologics to days on them. And those flares are easier to manage now. She’s able to work full-time as support staff at a local community college, something she could not have done before biologics.
“I definitely know I have RA. It’s not like it’s just magically disappeared,” Kramer says. “For the most part, I have flares occasionally, but usually it’s when I overdo things, or I’m letting myself get bogged down with stress, but they’re very short, and they’re nothing like what I had in the past, before getting on this biologic.”
Her fingers still get stiff, and her knee swells occasionally, but she can handle these symptoms.
“I feel normal again. It’s just being able to live my life again,” she says.
A good response to a biologic (and the goal of treatment) is remission, Horgan says. So you could potentially expect:
“Biologics are a big piece of a puzzle made of many pieces of a patient’s treatment program,” he says.
If your biologic isn’t lessening your symptoms—or is increasing your side effects—your doctor might switch you to another one. Signs of it not working include adverse events that just won’t subside, no symptom relief, or you develop your own antibodies to it and it’s no longer effective at stopping inflammation (which your doctor can test for).
Davidson is currently on her third biologic after experiencing intense side effects with the previous two. But the trial and error has been worth it. Prior to starting biologics, she tried 18 drugs total for RA, including methotrexate, the standard DMARD, or disease-modifying antirheumatic drugs. She didn’t respond well to that medication, experiencing intense side effects.
“I had a hard time fighting off infections, I was nauseated, had diarrhea,” she writes on her blog. “Some drugs I could only be on for a few weeks because they caused such severe depression and mood swings in me.”
“By the time I was ready to start biologics, I was terrified of the drugs, I avoided them and my rheumatologist for about six months,” she writes.
Now, she feels so much better on a biologic. She can write. She can keep up with her son. And she can be a patient advocate, serving as ambassador for the Arthritis Society and an Arthritis Research Canada Patient Advisory Board member.
Finding a biologic that has little to no side effects for her has meant everything to Davidson, because in addition to having reduced pain and reduced damage to her joints and organs, in the last two years she’s been on Actemra, she feels “more in control of my disease.”
You’ll likely experience results, or a response, from a biologic within a few weeks, or up to about three months of your starting dose. “While the effectiveness of biologic agents varies, I usually tell [them] to be patient,” Horgan says.
The best outcomes often occur with combination therapy, such as a biologic agent and methotrexate, he notes.
Kramer, diagnosed with RA in 2004, has been on Enbrel (the first biologic she tried), for nearly 10 years, but she still remembers how her RA symptoms improved within a few weeks of starting the drug.
“Knowing lots of people without good results, I wouldn’t want anyone to expect immediate results,” she says. “However, I felt like I went into it with an optimistic view. I’m also aware that this one may end, and I’ll experiment with another. RA is a process.”
Once you’re on a biologic, you’ll likely see your doctor every three months or so, to have your response (and possible side effects) monitored. You’ll typically have blood work done at those visits, to test your levels like inflammatory markers and blood-count abnormalities, according to Dr. Peng, which can measure for the effects of long-term use of medication and infections, among other issues. These tests will help your healthcare team monitor your body’s ongoing reaction to the drug.
Be sure to call your healthcare team if you experience any side effect outside of those regular visits—even if you’re not sure your symptom is related to your medication. It’s better to be proactive when on biologics than to run the risk of your condition worsening, he says. In Horgan’s community-based practice, he might see a patient more often than every three months if they have issues with their RA that won’t stop, like residual pain and inflammation, or musculoskeletal issues, such as tendonitis or bursitis.
Davidson had something similar happen. She tried Actemra for six months to see if it lessened her RA symptoms, but she was still experiencing pain, and was concerned it might be a flare.
So she got a second opinion and an ultrasound, which showed her that the pain was actually permanent joint damage from RA and OA—her new biologic wasn’t the issue.
“I felt relief knowing I was on the right treatment path, keeping the inflammation at bay,” she says. “The more I understood my disease and limitations, the more I could see how Actemra was working for me overall, and I couldn’t be more grateful for advances in modern medicine.”