“When I was first diagnosed with rheumatoid arthritis, my rheumatologist became my whole world. Seriously, I was more excited to see his office number pop up on my caller ID than my boyfriend’s,” says Allison M., 43, of Tampa, Florida. “He was my lifeline to information, treatment, and pain meds.”
But while Allison loved her rheum, she says her real heroes were the nurses at the practice. “The day I got bad test results back, it was the nurse who let me cry on her shoulder,” Allison says. “Whenever I called in to the office with a question, it was the nurse who called me back right away. When I had to have two hip replacements in two years, the nurses were with me from scheduling through recovery. And when I got pregnant with my daughter after years of trying, I think the nurses were as happy as I was.”
Rheumatology nurses are a wealth of information, both practical and medical. Plus, they tend to have more time to spend with you than the doctor and know many little tips that can make the day-to-day reality of living with arthritis much easier. Don’t have a rheum nurse on speed dial? We talked to some veteran rheumatology RNs to find out what advice they give their patients.
1. Be Completely Honest
“The biggest issue I deal with is honesty,” says Victoria Ruffing, RN-BC, director of patient education at the Johns Hopkins Arthritis Center. It’s not that she thinks patients are intentionally lying, but rather that people with inflammatory arthritis are often stoic and resourceful, leading them to minimize the true impact of their disease. “For example, a woman who changes her hair style because it is easier to wash, dry, and style because her range of motion in her hands, wrists, and shoulders are decreased. This means the patient is not as well as she could be,” she explains. “She needs to tell us, ‘I am not satisfied with things the way they are’ so we can adjust her treatment.”
2. Make an Appointment with the Nurse Educator
“Many offices have a ‘nurse educator’ whose sole job is to teach patients the ins and outs of their home care. Make that person your best friend,” says Annette Hetzel, RN, a nurse manager who supervises rheumatology nurses. For arthritis patients, this could mean teaching you how to give yourself injections (and even letting you practice in the office) or how to properly use assistive devices, like a cane or walker. They can also often provide you with information on community resources for the disabled, tips for dealing with your insurance company, and information about applying for government benefits, she adds.
3. Be Careful with Internet ‘Support’ Groups
There’s a lot of good information on the internet, but when it comes to inflammatory arthritis there’s also a lot that’s negative, depressing, or flat-out wrong. “I let patients know there is much reason for optimism because we have so much to offer in ways of treatment,” says Ruffing. Instead of focusing on worst-case scenarios, she suggests finding reasons to be optimistic and surrounding yourself with others who will support you in positive goals.
4. Use an Orthopedic Pillow (or Three)
Getting seven to eight hours of deep, restorative sleep each night should be priority number-one for patients with all types of arthritis, says Jason Priest, RN, a nurse who specializes in inflammatory arthritis. Start by setting a strict sleep schedule (yes, even on weekends) and sticking to it, he says. Make sure your bed is equipped for your comfort. Depending on where your arthritis pain is, an orthopedic pillow — say, one that cradles your neck or a wedge that fits under your knees — can help you rest more comfortably.
5. Use the Patient Portal
Medical records, like everything else these days, are going digital. Take advantage of this by signing up for and using your doctor’s patient portal, Hetzel says. These sites or apps can help you change appointments, ask questions, get lab results faster, find information, and see your medical records. “These online portals are one of the best tools we have to empower you in your own care,” she says. “It can feel like one more thing to do but it’s worth the extra few minutes.”
6. Ask Your Partner for More Help
When it comes to household chores, things are rarely split 50/50. Loving relationships account for some give and take, and when your illness is flaring up that warrants an adjustment, Ruffing says. “It’s not always easy for patients to accept that they may need some help, but don’t be afraid to ask your partner to help with household chores, cooking, and other tasks,” she says. Ultimately, your partner loves you and wants you to be as healthy and pain-free as possible.
7. Find a Personal Trainer who Specializes in Arthritis
“Consistent exercise can help you maintain joint mobility, improve your mood, give you more energy, and also help with better quality sleep, so it’s incredibly important for arthritis patients,” Priest explains. However, when it comes to arthritis, not all exercises are created equally. It’s important to find movements that work with your particular type of arthritis and your range of motion. A personal trainer or physical therapist who specializes in arthritis can help you design an exercise program that will give you all the benefits without exhausting you or making your condition worse, he says.
8. Get a Good Pill Splitter
A common complaint Hetzel hears from patients, especially older ones, is how many pills they have to swallow and how big they are. “Many pills can be split to make them easier to take but make sure to ask your doctor or pharmacist first as there are some time-release medications that should never be cut,” she explains. You can also ask for liquid forms of many medications.
9. Don’t Go Rogue with Your Meds
Some patients have a tendency to self-medicate, only taking medications when they think they need them, causing them to under- or over-dose themselves. If this is you, stop it right now. “Make sure you are taking your medications exactly as directed by your doctor,” Ruffing says. “If there is a problem then let’s talk about it and figure out a solution or alternative medication, but don’t change things on your own.”
10. Ask Your Pharmacist About Pill Packs
Adhering to your medication regimen is critical to managing your arthritis. But remembering exactly when and how to take your meds can feel like calculus, especially if your treatment plan involves multiple medications or treatments for several illnesses. Thankfully some pharmacies now offer a service that make “pill packs” where all your medicines are packaged together with one dose of each put in individual sealed packages, labeled with the time you need to take them.
“These can be a lifesaver for patients with heavy pill regimens,” Hetzel says. “This also makes it easy to remember if you’ve taken them and reduces the risk of ‘double dosing’.” If your pharmacy doesn’t do this, you can sign up online at PillPack.com.
11. Ditch the Child-Proof Packaging
Arthritic hands and child-proof caps go together like OJ and toothpaste. However, many patients don’t realize that while child-proof medicine containers are the standard, they’re not required. You can ask your pharmacist to put your meds in containers that are easier to open, Hetzel says.
12. Buy a Jumbo Box of Alcohol Prep Pads
If you have to give yourself injections, it’s important that you clean the skin before you put the needle in. One convenient way to do this is by buying a box of sterile alcohol prep pads. “One tip I always give my patients is to wait a minute after using the wipe to let it dry otherwise if the alcohol is still wet, it can sting a little when you do the injection,” Hetzel says.
13. Ask Us About the Most Common Side Effects *We* See
“There are the side effects listed in the package insert — which is often a scary, long list full of medical jargon — and then there’s reality. The nurses know the reality,” Hetzel says. While every medication and every patient’s potential reaction is different, the ones she says she sees most often include stomach upset, headaches, fatigue, and dizziness. “Give us a call, we have a lot of ways to help you deal with these at home,” she adds.
14. Don’t Say You’re Allergic, Unless You Actually Are
Side effects from medications are very common and rarely life threatening while a true allergy — characterized by hives, itching, and trouble breathing — are far more rare but are very serious. Knowing the difference between the two can really improve your care, Hetzel says. “If I had a nickel for every patient who has told me they were ‘allergic’ to a medication when it gave them a stomachache, well, I’d be very rich,” she says. “The problem with saying you can’t take medications because you’re allergic — when you aren’t — is that we run out of medications we can give you, which limits your treatment.” (Here’s the fascinating truth about penicillin allergies, for example.)
15. Ask the Most Important Questions First
Doctors are extremely busy and over-scheduled. While a good rheumatologist will leave time to answer your questions, they probably won’t be able to address everything in a single appointment, which makes it so important that you write your questions down in order of priority, Hetzel says. “Too many times I’ve seen a patient wait until the doctor is leaving the room to bring up the symptom that is really bothering them,” she says. “Ask your important questions right away. Don’t wait until the end of your appointment.” Here’s how one RA patient attempts shared decision-making with her doctor.
16. Protect Your Joints
Arthritis doesn’t stay static — it tends to gets worse over time. This means that you need to do everything you can to protect your joints now, Priest says. This will differ depending on what type of arthritis you have and which joints are affected, but take steps to structure your life so that you minimize stress to your joints, he says. For people with hand pain, this could mean using assistive devices like jar openers and button hooks. For those with arm pain, you can get lifting straps to help you carry things without using your hands. If your back is your problem, practice squatting down to lift things instead of bending at the hips. “Every little bit helps when it comes to slowing down your disease progression,” he says.
17. Ask About Medical Waste Disposal
Arthritis treatments can mean lots of needles, tubes, patches, old medication, and other things that you shouldn’t just throw into a trash can. Ask your nurse how you should dispose of these things, Hetzel says. “Some offices will send you home with a medical waste container for needles and you can bring it back with you to your next appointment,” she says. “Others may have special bags they want you to use or particular instructions to follow.”
18. Call Your Insurance to Pre-Authorize
Don’t assume that just because your insurance covers your doctor that they will cover any treatments or procedures your doctor prescribes. “It’s important that you call your insurance and make sure you are pre-authorized for any expensive procedure or treatment before you get it,” Hetzel says. “And don’t assume that our billing department will do that for you, either. As frustrating as it is, it’s up to you to know what’s covered and what isn’t. It’s heartbreaking to see a patient surprised with a massive bill.”
19. Tell Us If You Can’t Afford Your Medications
Cost should never keep you from taking much-needed drugs. Nurses often know a variety of ways to help you find them for cheaper or even for free, Hetzel says. You can start by going to the website for the manufacturer of your medication as they often offer discounts or coupons. Check out GoodRX.com to compare prices at pharmacies near you and get coupons. Lastly, ask your pharmacy to tell you the cash price versus if you go through your insurance —sometimes it can be cheaper to pay cash.
20. Don’t Skip Follow-Up Testing
Once you’ve gotten your diagnosis, you may think you’re done with blood draws and scans but managing inflammatory arthritis means constant monitoring. It’s very important you complete all follow-up testing as ordered by your doctor, Ruffing says. “We must understand if the disease is active by checking certain factors that determine inflammation,” she explains. (Learn more about the CRP test and the sedimentation rate test here.) “Also, checking bloodwork will let us know if there are any other problems, such as bad side effects of medications, suppression of white blood cells, or anemia. Other types of monitoring like X-rays, ultrasound, and MRI may also be needed to measure any injuries that could occur as a result of chronic inflammation.”