Treatments for inflammatory arthritis have come a long way from the days when all you could do was make a poultice out of mustard and comfrey and hope for the best. The biggest recent advancement is the invention of biologics, a class of medications that first came on the market in the late 1990s and has continued to expand since. These drugs, which include etanercept (Enbrel®) and adalimumab (Humira®) among others, are genetically engineered proteins that target specific parts of the immune system that fuel inflammation.
With autoimmune diseases like inflammatory arthritis, your immune system goes haywire and attacks itself. Biologic drugs tell your immune system to chill the heck out. And they’re so effective that they’ve become game-changers for many patients, helping them live more active lives with far less disability than ever before, says Orrin Troum MD, a rheumatologist at Providence Saint John’s Health Center in Santa Monica, California and a clinical professor of medicine at the University of Southern California.
There is one trick with biologics, however — and that’s how they need to be taken. Because they are “large molecule” proteins, they must either be injected subcutaneously (under the skin) or intravenously (into a vein). Under-the-skin injections can be self-administered at home, either using a pre-filled syringe or an “auto-injector” pen. Intravenous medications can only be infused by a trained health professional.
Biologics can have an important impact on your disease activity and quality of life, but you have to be comfortable with needles in order to take them. Being nervous about injections (or even downright terrified) is a totally normal reaction that Dr Troum says he sees in patients all the time. There are ways to work through that fear and to make the whole process less painful and frightening. We talked to experts and people living with arthritis about what has helped the most when it comes to giving yourself biologic injections.
1. Choose the Right Delivery Method For You
Patients have two device choices for injecting themselves and both have pros and cons, Dr Troum says. A standard needle and syringe comes pre-filled with the right amount of medication and you simply stick it in your body (the thigh and stomach are common locations) and push the plunger down. This method allows you to control the speed but can be more difficult for people anxious about doing self-injections, Dr Troum says.
The alternative is a device called an auto-injector pen. It’s a spring-loaded syringe that only requires you to hold it to your skin and press a button. The downside is you can’t control the speed or pressure but it can take some of the fear out of the process because it’s over so quickly, he says.
“Everyone raves about auto-injectors but personally I love using a manual syringe,” says Melanie S, 50, who has psoriatic arthritis. Being able to inject the medication very slowly lessens the pain, bruising and swelling, she says.
From a medication standpoint, it doesn’t matter which delivery method you use, so Dr Troum recommends trying each to see which you prefer. Most biologics are now available in both device forms, so discuss your preference with your prescribing doctor.
2. Know When Not to Freak Out About Side Effects
An important part of learning to inject yourself is learning what side effects are normal and which need immediate medical care. The most common side effects of injections are redness, swelling, itching, pain and warmth at the site of the injection, he says. “All of these can be treated at home and often go away after a few doses,” Dr Troum says. Other common side effects include nausea, flushing and headaches. Call your doctor if these become bothersome.
3. And Know When Side Effects Are Serious
If you experience any signs of an allergic reaction, such as hives, tongue swelling or trouble breathing you need to go to a hospital immediately, Dr Troum says. (Infusions can also cause a serious drop in blood pressure, which can lead to fainting or even needing to be resuscitated, another reason why they should only be done under medical care, he says.) These life-threatening side effects are very rare but you should be aware of the possibility, he adds.
4. Do Your First Biologic Injection Under Medical Supervision
“We always have patients do their first self-injection in our office, with a nurse,” says Annette Hetzel, RN, nurse supervisor at an arthritis clinic. This allows patients to ask questions while also allowing the nurse to make sure they are doing it correctly and monitor for serious reactions.
“If your doctor doesn’t immediately offer this, ask for it. The nurses will be more than happy to walk you through it,” she says. “Especially if you’re nervous, we’d rather you panic with us than at home.” She adds that if you get nervous at home, you can always call the on-duty nurse and she can walk you through it over the phone.
In Australia, the pharmaceutical companies that supply biologics generally offer a free consumer support program that includes home visits from a nurse to guide you through your first injection. They also offer phone and online support as needed. Ask your prescribing doctor for information about these programs. You may also find information about customer support programs on the supplier’s Australian website, inside your medication pack or in your free starter pack (if available).
5. Rotate the Injection Site
The most common places to self-inject biologics are in the thigh or the abdomen, Dr Troum says. Technically you can do it in the same place every time, but injection sites often develop sensitivity or pain over time. Over years you may even build up scar tissue. You can reduce this by doing the injection in a different location every time, Nurse Hetzel says.
Alternating between six sites works best for Amy K, 42, who has ankylosing spondylitis. “I rotate injections between each arm, each thigh and my upper and lower stomach area,” she explains. “I’ve been on medications for more than 10 years, including methotrexate injections [which are not a biologic], and I’ve got a lot of scars but the more I can spread it out the easier it is.”
6. Be Prepared For Scarring
Long, flat welts and bruising at the injection site are typical for Melanie. “I’ve found these can last up to two weeks, but since they’re in spots most people don’t see, it’s not too bad,” she says. The real difficulty for her is the buildup of scar tissue that she says can make it harder for the needle to go in. “I’ve had to get creative with where I inject,” she says.
7. Allow Your Medication to Warm Up First
Most biologics need to be refrigerated. While they can be injected cold, that can add to the discomfort, Nurse Hetzel says. Take the biologic dose out of the fridge and allow it to warm up on the counter for an hour or two before injecting, she advises. Be careful to read the package directions and/or ask your doctor first, though. The amount of time the medication can be unrefrigerated can vary by brand, Dr Troum adds.
8. Hold the Syringe in Your Hand to Warm it
Some people prefer to let the injection come to room temperature on its own but if you want to speed up the process a little you can hold the syringe or pen in your hand to warm it with your body heat, Nurse Hetzel says. However, do not ever use a stove or microwave to warm them up faster, Dr Troum says.
9. Clean the Site First
Biologics work by suppressing your immune system so it’s of paramount importance that you use good hygiene to minimise potential infection risks, Dr Troum says. Wash your hands with soap and water before handling your medication and use alcohol wipes to clean the injection site, he says. Allow the alcohol to dry completely before doing the injection otherwise it can sting, Nurse Hetzel says.
10. Think: Ice, Ice Baby
Sometimes the best solutions are the simplest. When it comes to biologic injections that tool is ice, Nurse Hetzel says. You can use ice to numb your skin before you do the injection and you can put an ice cube on it right after to reduce pain and swelling, she explains.
11. Count Down Out Loud
For some reason, speaking out loud can feel more powerful than simply thinking it. For Emily A, who has rheumatoid arthritis, that means saying loudly, “Three, two, one, now!” and then pushing the button on “now.” “I wouldn’t say I yell it, but it’s definitely pretty loud,” she says.
12. Have a Shot Support Person
“My husband will sit next to me while I do my shot and just his presence there makes it easier,” says Emily. “When he’s out of town, I’ll call him and put him on speakerphone. Sometimes he has to talk me through it but most of the time, just knowing he’s there is enough.”
13. Schedule a Low-key Day For After Your Injection
“Meds go in, I pass out,” Amy jokes about the exhaustion and general “gross” feeling she gets after her injection. “I know I’ll be useless for a solid day after the injection so I plan my shots for a Friday night so I have the weekend to recover,” she says. A good night’s sleep is the best remedy for side effects, she adds.
Many people have little or no side effects from biologic injections, so monitor your body’s responses for the first few injections and plan your time around them accordingly.
14. Give Yourself a Little Reward
Sugar is a known inflammatory food, but sometimes it really does help the medicine go down — or rather, in, says Onidah M, 39, who has rheumatoid arthritis. “My favourite treats are Almond Rocas so I put one on the table in front of me and I can’t eat it until I get my injection done,” she says. “It’s just one a week so I don’t think it’s hurting me too much and it motivates me to just do the shot and get it over with.”
15. Don’t Hesitate
Erik A, 33, who has rheumatoid arthritis, says that when he first started doing self-injections they could take hours because he just couldn’t make himself push the button on the auto-injector. “The noise, the pain, the burning sensation, the ‘snap’ of the pen, I couldn’t handle it,” he says. “I’d just sit and hold it until my hand cramped up. It got to where the anticipation of the shot was worse than the shot itself.” Now he says he gives himself no time to ruminate. When his alarm for his injection goes off, he picks up the pen, holds it to his skin and pushes the button with no hesitation. “You can’t think about it, you just have to do it,” he adds.
16. Blast some music
“Another trick that helps me is to put on headphones and blast my music so I can’t hear the click of the pen,” Erik says.
17. Consider Talking to a Therapist
“I get full-on panic attacks before I do an injection because, for me, the pain is quite severe,” says Ashlee P, 26, who takes biologics for psoriatic arthritis and Crohn’s disease. “The liquid is very thick, almost sticky and injecting is unbelievably painful. And I consider myself to have a pretty high pain tolerance.”
It eventually got to the point where she would have a panic attack anticipating the injection so she started seeing a psychologist trained in chronic illnesses to help manage her anxiety and it’s helped a lot, she says. “I have a breathing exercise I do to calm down first,” she says.
18. Train a Family Member to Help You
When Ashlee can’t bring herself to do her own shots, she calls her mother to come over and do it for her. “I took my mother to my appointment with me and the nurse showed her how to do the shots,” she says. “I’m trying to be independent but on days when my anxiety is too high and I need my meds, my mother is a lifesaver. She’s an absolute angel to me!”
19. Focus on the Benefits of Taking Biologics
Instead of thinking about the immediate pain in front of you, try remembering all the good things the medications may do for you. “I’ve been on biologics for five years and absolutely loathe giving myself injections but the drugs have completely turned my life around so I just try to keep my mind focused on all the things I can do now that I couldn’t do before, like using a wrench to fix a leaky tap or hand-writing birthday cards,” says Onida. “As for the injection itself, I just force myself to do it as fast as possible.”
20. Log Your Injections
RA patient Brenda Kleinsasser, of North Dakota, has kept a diary of every single biologic injection since she started giving them to herself nearly two decades ago. “You are starting with something completely new and foreign in your body,” she says; it’s important to keep track to watch for side effects and reactions.
Cindi Arnsdorff, who was diagnosed with juvenile arthritis as a child, marks dates on the calendar for her injections and then checks them off when injected.
21. Keep an Eye on Your Supply
How often you take your biologic and how many doses you get at a time depends on your specific medication. Whatever the amount, it’s a good idea to keep an eye on your remaining doses and make sure you’re not in danger of running out. “I am allowed to receive one box a month or every 28 days,” says Brenda. “There are four injections in a box, so it’s important to keep an eye out and try to make sure that you get your next box before you completely run out.”
You might also find it helpful to use a medication tracking app, such as the NPS MedicineWise app or an app available through your local pharmacy to remind you when to take your next dose or order your next prescription repeat.
If you ever need to skip an injection (say, because you’re sick with a virus and your doctor advises you to hold off) you may find yourself starting to stockpile some doses. In that situation, check the expiration dates before you inject to make sure you use the oldest ones first. Brenda, for example, keeps her medication in the fridge on one of the bottom shelves. “I always put the newest ones at the bottom of the pile.”
22. Learn More About Jak Inhibitors as an Option
These newer drugs on the market (such as Xeljanz®) are part of a class of drugs called targeted synthetic disease-modifying anti-rheumatic drugs (tsDMARDs). They are similar to biologics in that they target specific parts of the immune system, but JAK inhibitors are considered “small molecule” drugs and therefore can be taken in tablet form. This makes them a good option for people who don’t like needles, Dr Troum says. However, there may not be a JAK inhibitor available for your condition or they may not be the best treatment option for you. It is important to discuss your available medication options with your rheumatologist.
In Australia, all biologics and tsDMARDs are heavily subsidised through the Pharmaceutical Benefits Scheme (PBS) so there is little or no cost to approved patients.
23. Consider Infusions
If you simply can’t handle self-injections, your doctor may recommend biologic infusions if there are any available for your condition and suitable for your needs. This means the biologic medication is administered via an intravenous (IV) drip into your veins. This has to be done by a certified medical professional, often a nurse, most commonly at an infusion centre within a hospital.
This information should never replace the information and advice from your treating doctors. It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your care and well-being.
- Arthritis Treatments
- Government Support for People With Chronic Illness
- 5 Ways Your GP Can Help You Manage Your Chronic Illness
- A Patient’s Guide to Living with Rheumatoid Arthritis in Australia
- Managing Your Inflammatory Arthritis During COVID-19: Q&A With A Leading Rheumatologist
This article has been adapted, with permission, from a corresponding article by Charlotte Hilton Andersen on the CreakyJoints US website. Some content may have been changed to suit our Australian audience.