Making Treatment with Biologics Easier When You Have Crohn's
Medical pros and two Crohn's veterans share their go-to advice for getting through those infusion and self-injections days.
Biologics are like the cool cousins in medicine’s family tree—they come from a unique branch of pharmaceuticals that are created in a lab from living materials (hence their name). But here’s where they really get their cred: These protein-based antibodies lock onto specific targets (other proteins, in fact) that fuel inflammation, effectively putting out the fire. The very common happy result? Many people with Crohn’s disease eventually reach remission.
But getting these drugs into your body takes a little work: They need to be delivered via infusion or a shot. That’s because of how they’re structured, says Adam C. Ehrlich, M.D., an associate professor of medicine at Temple University Hospital in Philadelphia. Biologics are big. “Proteins are very large molecules compared to the vast majority of drugs that we think about,” he says. “As a result, there are a number of consequences.”
The first: Biologics are tough to take by mouth because those hefty molecules don’t cross the stomach or the intestinal lining easily, Dr. Ehrlich says. The second consequence: They’re expensive to make. But we’ll get to that later.
What Types of Biologics Are Available?
There are six biologics on the market for Crohn’s disease: the three anti-tumor necrosis factor (TNF) agents, Humira (adalimumab), Cimzia (certolizumab pegol), and Remicade (infliximab); two integrin-receptor antagonists, Tysabri (natalizumab), and Entyvio (vedolizumab); and the interleukin-12 and -23 antagonist, Stelara (ustekinumab).
Each drug is administered in a different way, either by infusion or injection, and on different schedules, depending on prescribed dosage, patient response and need. One drug is even a hybrid—the first dose of Stelara is given by IV and then all other doses are given by sub-q (that’s fancy doctor-speak for injection). After the first dose, each of the other drugs is given only by injection or only by infusion.
Where Will You Receive Treatment?
For infusions, you can get them done at the hospital, at an infusion center, or at home. New insurance mandates have most patients receiving their infusions at infusion centers located in physicians' clinics.
“These are just as safe and always have a physician onsite during the infusion,” notes Elisheva Weiser, R.N., B.S.N., a nurse who works with IBD patients at the infusion center at Johns Hopkins Medicine in Baltimore. You might save some time, too, since you don't have to wait for the medication to be mixed by the pharmacy, which usually occurs in most hospital-based infusion centers, she adds.
For injections, you can have them done at your doctor’s office, the hospital, or at home.
Things to Do Before You Start a Biologic
We asked a top expert (just check out his credentials!) for his best advice for beginners. Here's what David T. Rubin, M.D., chief, section of gastroenterology, hepatology, and nutrition; co-director of the Digestive Diseases Center at University of Chicago Medicine; and an expert source for the American Gastroenterological Association, had to say:
Speak with a health care professional. They need to know you and your particular case of Crohn’s “well enough to have a meaningful conversation with you about what the drug is expected to do and what the potential risks of it might be,” Dr. Rubin says.
Tell your doctor about any prior complications or side effects with biologics. Did you have an allergic reaction? Did a previous drug just stop working? Share it. “We know that the risk for another complication is higher when they get their second biologic therapy," he says. Making sure your doctor understands your history can help prevent a repeat event.
Read accurate information. Especially online. Avoid sites with information that doesn’t ring true. Stick to the tried and true basics: associations and societies like the American Gastroenterological Association, and government health sites. (HealthCentral counts, too!) You need to trust your sources of information, Dr. Rubin advises.
Develop a list of questions. Make them all about biologics and bring it to your next doctor appointment. This can help with the point above, honing your trustworthy information sources and providing you with the most accurate picture of your situation.
Seek a second opinion. Especially if you feel your doctor isn't providing the best advice for you. “I try to remind people that driving a couple extra hours to see an expert, or even flying somewhere, can dramatically change the course of your condition and your life,” Dr. Rubin says.
Are there other ways you need to prepare for your biologics treatment? Weiser says hydration is key. Drink plenty of water the night before and morning of your infusion. “This helps make the veins more visible and easier for the nurse to insert an IV,” she says.
And if you’ve been sick with an infection, cold, or flu, call your doctor and tell them before the infusion. “They may want to delay it to give your body time to recover,” Weiser explains.
Know Before You Go: Tips for Easier Infusions
Here are some tips to make your infusion the best experience possible—along with what you might want to bring along.
Pipe up. Weiser recommends you ask questions on the regular. “I recently infused a patient who had little idea of why he was taking the medication or the expense that would go along with it. Many of these questions could have been answered by the provider in the visit when they discussed starting the medication,” she says. “If you are uncomfortable with starting the medication, ask questions ahead of time. You want to make sure you have all questions answered prior to your infusion appointment.”
Have something to do. It might take a while at the infusion center. Dosing can be different based on your needs, lasting anywhere from half an hour to an hour or beyond. The first three infusions of Remicade will generally take nearly three hours. After those doses, the medications can be infused over one hour, so infusion visits for maintenance doses should take about one and a half hours, total. “The only thing I can say is to bring something to do… it’s boring,” says Vern Laine, 51, who lives in Surrey, Canada. He’s been receiving Remicade infusions for seven years. He’s had Crohn’s since 1988, so he knows a thing or two about the process. His infusions last about two hours, start to finish. And he has them every six weeks. Laine's go-tos: a book, a word search, and/or a tablet to play games or watch Netflix.
Call the nurse if something seems wrong. You might worry that you could develop an allergic reaction at the IV site, but this isn't typical. “If a reaction were to develop, it would usually occur within the first few minutes of the infusion, but it can also happen at any point during the infusion to immediately after,” Weiser says. “Patients may develop an itchy throat, rash, high blood pressure. These reactions can usually be treated with Benadryl [diphenhydramine], Zyrtec [cetirizine], and steroids. Infusion nurses are generally very skilled in spotting reactions and administering the medications quickly.”
Request a blanket. Infusion centers can get cold. Laine says he’s not sure if it’s the experience of receiving the infusion itself, or the room he’s in, but he’s usually chilly. Dr. Ehrlich recommends that you bring a sweater to help ward off the low temps. You could also bring your own blanket, or ask infusion center staff if they have one you can use.
Bring a small pillow. Especially if you have back pain, or want to be as comfortable as possible in your (already pretty comfortable, granted) infusion chair.
Seek a friend (or family member) to drive you. You might be drowsy from medication, according to Dr. Ehrlich. Or from the infusion process itself, which Laine says happens to him. So don’t take the risk that you nod off on the drive home. Ask for help from a loved one. Bonus: You have someone to chat with to pass the time, too.
Be aware of your IV site. It might need some attention after being stuck so many times as time marches on. Dr. Rubin suggests patients ask the phlebotomist or IV nurse not the put the IV in their hand but in their arm instead; the hand has lots of nerves that can be accidentally hit.
Laine does have the IV port placed in his hand for his infusions, so he uses warm water and a glove before leaving for the clinic, and then a heating pad once he’s there. “By the time the nurse is ready to put in the needle, the veins are big. The heat also gives a numbing effect so the needle slides right in, and I usually don’t feel a thing,” he says. The process isn’t exciting, but for him, "the results are worth it.” That said, it might not be for you, so be sure to consult your doctor or infusion nurse before attempting.
Know what you don’t need. Infusion centers usually provide reclining chairs, snacks, and water.
Going the Injection Route? These Tips Make It Easier
Having to give yourself regular injections might seem daunting, but it doesn’t have to be. Read on to learn some tips for helping make regular biologic injections less intimidating.
Get help. Janssen (Stelara) and AbbVie (Humira) provide nurse-navigator programs in which they send a nurse, free of charge, to your house to teach you how to inject your biologic. Weiser recommends patients ask their doctors about in-home injections from nurses and/or training to give their own injections from the comfort of their home, which is how Natalie Hayden, 35, injects Humira every two weeks.
Find a way to remember to take it. Hayden designated Mondays for her twice-a-month injections. Before her bowel-resection surgery in 2015 (Hayden was diagnosed with Crohn’s disease in 2005), she was on weekly injections for four months. She needed a way to recall which leg to inject in, because she switches sites as instructed to help avoid any injection irritation. “I remember by writing in my day planner R or L, depending on which leg the injection will be administered into,” says Hayden, who lives in St. Louis. “You’d be surprised how easy it is to forget.”
Take it out of the fridge first. These injections must be kept cold, in the refrigerator, but they also need to be room temperature before being injected, to help ease any discomfort. “Allow your injection to sit out on the counter,” Hayden says. She leaves hers out for an hour. “That way the medication isn’t so chilled when it’s going into your body.”
Learn how to inject it, and stick with that. Hayden has a process. “I wash my hands, grab an alcohol swab and wipe it counterclockwise across my thigh, then I hold an ice pack on my thigh for five minutes. Next, I grab the skin, keeping it taught. I then inject the medication, making sure the pen is at a 90-degree angle, and count to 10.” Find a process for yourself based on the instructions you’re provided.
Fear of needles? It’s OK, these are ‘pens.’ It’s important to note that these drugs are given through what’s called a “pen injector.” You never see the needle, because it’s inside the pen-like device, and it’s retracted. You place the pen on the spot where you’ll insert it (the thigh, leg, and stomach are all common places for this), push the button on the top down, and the biologic is released. It should be quick, mostly painless, and easy to do.
Buy a FDA-cleared sharps disposal container. It’ll make disposing of your pen injectors safe and easier. “The FDA has evaluated the safety and effectiveness of these containers and has cleared them for use by health care professionals and the public to help reduce the risk of injury and infections from sharps,” the FDA says. You can buy them at pharmacies, medical supply companies, health care providers, and online. Then, once it’s three quarters full, dispose of the needles safely.
Tips for Affording Your Biologic
Biologics are complex medications—they can be expensive. Remicade (the first biologic on the market for Crohn’s) can retail for $6,000 for five vials. So here are a few tips for finding ways to afford them.
Communicate with your health insurance. There ARE things you can do to help offset the cost, and that’s working with your insurance company and others to help learn what you’ll be responsible for, Weiser says.
Use online patient portals. These online tools can help you talk to your nurse (or doctor) in real time for help with any issues with your insurance company or payment, she says.
Ask about copay assistance programs. They might be able to help you with either treatment method. “Many infusion centers have an insurance specialist who can give you a breakdown of what is owed per infusion, so check with the center about this, as it is a great resource,” Weiser says.
Tap your pharmacist as a resource. Especially if your doctor prescribes you an injectable. “Many pharmacists are skilled in educating patients about cost. In our practice, we use a specific specialty pharmacy, and they sign patients up for the program so that they never pay more than a $30 copay,” she says.