Starting any medication you may need lifelong can be upsetting and intimidating. For those diagnosed with rheumatoid arthritis, ankylosing spondylitis, or psoriatic arthritis, having the “B”— for biologics — talk with your doctor can be especially nerve-wracking. These drugs are expensive, have a long list of potential side effects, and can’t be taken orally.
Biologic drugs used to treat inflammatory arthritis come in two forms: injections you give yourself at home and infusions you need to get at your doctor’s office or an infusion clinic. These are considered “large-molecule” drugs that have a complex production process and makeup; they have to be administered directly into the bloodstream as opposed to taken orally. (Note: There is also a growing class of oral medications called JAK inhibitors that target specific parts of the immune; these aren’t technically called biologics, though.)
Biologic medications can be game-changing for treating arthritis symptoms and preventing disease progression, which is why they’re such an important part of the treatment plan for many people with inflammatory arthritis.
I’m one of them: I’ve been getting infusions of infliximab (Remicade) to manage my rheumatoid arthritis for more than a year now.
Biologic Injections vs. Infusions
When you and your doctor decide that it’s time for you take a biologic drug to manage your arthritis, whether or not you take one that’s injected or infused depends on a number of factors. Some drugs are available only as injections or only as infusions; some are available in both formulations.
“All of the medications are efficacious so it’s a shared decision between you, your doctor, and your insurance company,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida and CreakyJoints medical advisor. Your doctor may recommend a specific biologic they think will be best for you. Your health insurance coverage may also influence which biologics you can take. In other cases, your personal preference about the following considerations may play a role:
- Your willingness to give yourself injections vs. having a health care provider administer infusions
- How close you live to an infusion center vs. the convenience of giving yourself medication at home
- How often you want to deal with taking medication: Injections are usually given weekly, every other week, or once a month; infusions are given less often —anywhere from monthly to once every six months, after you get up and running with the first few doses
- How much time you can spare: Injections take very little time to administer; infusions can take hours
For patients who don’t want to give themselves shots at home or “freak out at the sight of a needle,” Dr. Domingues notes, infusions are a good alternative.
“I didn’t want to give myself a shot,” admits Lindsey Hart, who has ankylosing spondylitis (AS). “It’s been over three years now on [the infused biologic] and it has given me my life back, so I made the right choice.”
Paul Lane, who also has AS, has tried both biologic injections and infusions. “The infusion I only have to do once every six weeks and don’t have to worry about it, but then I have to sit at the hospital for most of the day for the infusion. The injectable I can do at home once a week and only takes a few minutes, but then if I go anywhere like vacation or work away from home I have to figure out how to bring the injection with me and refrigerate it.”
There are pros and cons to both; it really comes down to what you prefer and what fits your lifestyle best.
Adjusting to Biologic Infusions
If you and your doctor decide that biologic infusions are the way to go, you may feel mixed emotions: relief at knowing you’ve decided on a treatment plan, but nerves about what lies ahead for ongoing infusion treatment. Visions of needles and IV bags “cause a lot of anxiety,” reports Arliz Luna, FNP, who’s been administering infusions at Pacific Arthritis Care Center in Los Angeles for 17 years (and, full disclosure, just happens to be my wonderful infusion nurse).
The good news is that the biologic drugs used in infusions have evolved tremendously over the past couple of decades. There are now multiple medication options that can help stop the progression of your disease, either alone or in tandem with other disease-modifying medications like methotrexate. Even though it’s daunting, it’s crucial to start the treatment as soon as possible after your doctor approves it.
“These autoimmune diseases are systemic, which means if you constantly have inflammation running through your body, it doesn’t just affect your joints, it can affect your organs,” Luna explains. “Long-term consequences can lead to heart attacks or lung problems.”
“I was a skeptic for years,” admits Aime Cole, who was diagnosed with ankylosing spondylitis at 27. She went 10 years without biologics even though her rheumatologist wanted her to take them. She tried diet, exercise, and natural herbs and supplements first, but continued to get worse. “I wish I’d listened and started back then. It could’ve saved me a lot of heartache.”
It’s normal to be nervous but the truth is that infusions are “not as bad and scary as they sound,” says Sheila Christman-Schaefer, who’s had AS for 10 years.
Once you have more information about infusions, chances are you’ll feel better about moving forward with treatment. So here are answers to 12 common questions patients have about starting biologic infusions.
1. Which infusion medication will I get?
Your doctor will discuss with you which biologic is most appropriate for your diagnosis. You should talk about the pros and cons of each as part of the shared decision making process. Biologics target different specific parts of the immune system. Your doctor may feel one drug is better for you than another because of how it works on the immune system.
- Golimumab (Simponi Aria) and infliximab (Remicade) inhibit an immune system protein called tumor necrosis factor (TNF)
- Abatacept (Orencia) blocks signaling to a different part of the immune system called a T cell
- Rituximab (Rituxan) targets B cells
- Tocilizumab (Actemra) blocks an immune system protein called interleukin-6, or IL-6
The other big factor is your insurance. Your coverage may dictate a certain medication over another.
2. How long does an infusion take?
It depends on the medication, but it can take from as little as 15 minutes up to eight hours. My Remicade infusion for my RA, for example, takes about three hours; I have to come back every eight weeks. Psoriatic arthritis patient Rafen Norliss’s infusion of Simponi takes 30 minutes. It depends on the amount of medication you receive and your tolerance. The amount of your infusion will depend on the manufacturer. Some medications have one standard dose and others depend on your weight.
3. How does getting an infusion work exactly?
After being hooked up to an IV in your hand or arm, the medication will be “infused” into your body through a vein. You won’t feel an immediate change in your pain or other symptoms. “These are not pain relief medications,” Nurse Luna explains. “They are working on your immune system to reduce inflammation and with that reduction in inflammation, you will hopefully have pain reduction.”
4. Does it hurt to get the infusion?
There is minimal pain or discomfort, usually only a pinch when the needle for the IV is put in. You won’t feel the medicine going through your body. “You’re not supposed to feel anything other than the IV stick,” Nurse Luna says. “And it’s totally normal if you don’t want to watch the needle go in.” Marcey King, who has psoriatic arthritis and has done both Remicade and Orencia infusions, recommends hydrating 24 hours before your infusion. “It helps the veins plump up and they will have an easier time finding a good vein.”
If you’re really anxious about getting a biologic infusion, let your doctor or infusion nurse know. They may recommend that patients with high anxiety levels take a medication such as Benadryl so they can be more relaxed during the procedure. “Once you’ve gone through it,” Nurse Luna says, “it’s really not that big of a deal.”
5. How long before the medication starts working?
It depends on the medication and how you react to it. Some patients may notice an improvement within weeks of getting the first infusion, but it could take up to a couple of months before you start feeling noticeably better.
“Some patients feel great after the first infusion,” Luna says. “That’s wonderful, I’m not gonna argue with that. Just remember not to lose faith if you don’t feel anything right away.” Dr. Domingues says that if his patients aren’t feeling better after three infusions, he “rethinks what we’re doing and considers another mechanism of action.”
Mary Lisa Konett, who has ankylosing spondylitis, has done four infusion treatments so far and has already noticed life-changing improvements. “My excruciating iritis [eye inflammation] that causes headaches and light sensitivity and blurred vision hasn’t been there,” she says.
6. What’s the infusion room like?
It’s often quiet, relaxing, and peaceful. Patients can be young, old, and every age in between. Many infusion centers have cushy recliners, blankets, and pillows to make things more comfortable. “I call it my spa day,” jokes Christman-Schaefer. “It’s really enjoyable because I sit in a heated massage chair. I bring my coloring book, and they bring me food and drinks. I have my own private TV.”
My infusion room doesn’t have private TVs but Nurse Luna makes sure to keep ours tuned to HGTV, which is happy, positive, and neutral. “I’ve had patients get into intense conversations and debates,” she laughs. “So I like to keep the TV on a channel with no political bias.”
Some patients like to sleep, some watch shows or movies on their phones or tablets, and some work on their computers (ask your nurse to put your IV in your hand for maximum mobility). You can bring loved ones to keep you company or you can just enjoy a few hours of alone time.
Konett’s best advice for the infusion room is to bring a cardigan or hoodie because it can get cold. “I bring wireless earbuds to listen to an audiobook because there are so many wires already. And, no kidding, my clinic keeps the TV on Jerry Springer!”
My advice? Don’t forget your phone charger. Which I’ve done almost every time and then I have to sit there with no phone, which is torture for some of us and a godsend for others.
7. What kind of reactions should I watch for afterward?
One of the main things nurses watch for is allergic reactions, such as itching, hives, and flushing. Fluid imbalance can cause headaches. More serious reactions include shortness of breath, chest pain, GI symptoms, nausea, or abdominal pain. Though skin reactions are common, according to Dr. Domingues, patients are monitored frequently during the infusion and can be given medication to help alleviate symptoms immediately.
Konett experienced itching and increased blood pressure during her first infusion. “I turned bright red. I was very closely monitored and given a little Benadryl. Now, I get Benadryl before the infusion and I’m fine.”
8. What about other medication side effects?
As with any biologic drug, infusions carry a long list of potential side effects, some very serious. These are medications that affect the way your immune system works, so they can have a big impact.
Side effects of biologics can include injection site reactions, nausea, abdominal pain, and headache. One important side effect to watch for is infection — from the common cold to more serious infections, such as pneumonia, tuberculosis, and fungal infections. In the long term, biologics can be associated with an increased risk of certain cancers, though this is rare.
Each drug has its own set of side effects, so you make sure you review these closely with your doctor. The likelihood of experiencing any side effects varies from person to person. Keep in mind that a scary-sounding list of potential side effects must be balanced with the important benefits of preventing inflammation, disease progression, and comorbidities.
There’s a lot you can do to protect yourself from infection risk while taking these medications. Eat a good clean diet, wash your hands frequently, try to get enough sleep, and avoid people who are sick. “I don’t want my patients to live in a bubble but I want them to be cognizant,” says Dr. Domingues. “If your partner has the flu, maybe they sleep on the couch that week.”
9. If I’m sick, should I skip my treatment?
If you’re actively sick — have a cold, a cough, or a sinus infection — ask your doctor whether you should keep or reschedule your infusion appointment. It’s often best to reschedule your infusion in a week or two to be safe, but your doctor should advise what’s best for your personal situation. Likewise, if you have an open wound, or even post-op sutures, let your doctor know ahead of time. “We have to make sure there’s no risk of infection. If there is, we will delay treatment,” says Nurse Luna.
10. What about fatigue? I’ve heard infusions can really wipe you out.
The biggest issue I’ve experienced after my infusion is fatigue. Like bone-tired exhaustion. Nurse Luna says it’s normal to feel almost flu-ish. “The medications are attacking those inflammatory cells so your body is really working during this time after an infusion. As time goes on, symptoms like fatigue can dissipate.”
I sleep a lot the first few days after my infusion and I’m not alone. “I’m tired the rest of the day and a little nauseous but it’s not bad,” Christman-Schaefer confirms. Konett, a high school teacher, always take the next day off after her infusion. “I tried not to once and just crashed. The infusions make me so tired.”
11. Can I afford biologic infusions?
It’s a reality that biologic drugs are extremely expensive. In most cases, the medication you wind up taking comes down to cost and which drugs your insurance company agrees to pay for. What you pay out of pocket will depend on the copay, deductible, and out-of-pocket maximum on your insurance plan. Many drug manufacturers also offer financial assistance programs to help cover medication costs. (For example, I’m eligible for the CarePath Savings Program through Janssen, the manufacturer of Remicade. It’s like a credit card that helps subsidize my treatments.)
Many of my fellow patients said their insurance plans played a big role in which medications they took. “I am on Remicade because it was cheaper with my insurance,” Paul Lane says. Likewise, Norliss’s Medicare pays out more for his infusion than injectable biologics, so that’s why he’s on it. On the other hand, Darrel Koenig had to stop taking his infusion because of insurance issues and laments, “I miss it. It helped me greatly.”
“When I was first diagnosed I didn’t have insurance so I couldn’t afford much,” adds Christman-Schaefer. “When I did get insurance I had to go through all these other meds before they would approve my biologic. Even after I went through them all it was still a fight with insurance to get it approved. It’s very frustrating how insurance companies get to decide what meds you try and not your doctors.”
12. Can I stop getting infusions if I go into remission?
Don’t stop any course of treatment unless or until your doctor tells you it’s clear. “As of today, there’s no cure for RA,” Dr. Domingues says. “The reason you’re in remission is because of your therapy.” Most patients who achieve remission do better when they stay on medication, though you and your doctor can discuss whether you can taper to a lower dose or less frequent schedule.
Patients who stop taking medication when they enter remission have a high potential for flaring again. This is also true if your infusion schedule gets off track for any reason.
“It’s essential to stay on your schedule,” Nurse Luna adds emphatically. “Any gap in treatment can really interrupt how you feel and affect the medication’s benefits.” She’s had patients feel so great that they didn’t think they needed the meds anymore. They stop coming on their own, to return months later even worse off than before. And then the medications might not work the exact same way again.
Dr. Domingues recommends being strict about keeping your infusion appointments. You may have to miss a week or two here and there; life happens and sometimes you have to reschedule. But if you go more than a month past your scheduled infusion, you may have to do catch-up treatments. I’m guilty of this and I’ll never skip it again now that I know how bad it is for me. “We don’t want you to flare because it may be hard to go back to the good state you were in,” he says.
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