How to Make RA Treatment Decisions With Less Stress
Side-effect risks can be downright terrifying when you’re trying new RA therapies. Deep breath. Lene shares how she keeps her balance. by Lene Andersen, MSW Patient Advocate
The ads make it look easy—you can create a wonderful life of walking on the beach with your beloved and a golden retriever by simply treating your rheumatoid arthritis (RA) with this pill or that injection. And then they ruin it by rattling off dozens of truly horrifying potential side effects, skipping entirely how you’re supposed to cope with this information. But the reality is that making the decision to treat your RA—whether at all or with a particular medication—is a complicated emotional tightrope walk between what-if angst and the promise of hope. How do you choose treatment and how scared should you be? Let’s talk about it.
When I started my first biologic 15 years ago, the available science said it came with a higher risk of lymphoma, a type of cancer. As the certainty of a ruined life from out-of-control RA inflammation was by far the scarier option than choosing to hope, I held my breath and jumped off the metaphorical cliff into the waiting arms of yet another medication. This time, it worked. A decade and a half later, I have created a wonderful life that occasionally includes walks along the urban lakefront with my beloved, while our two cats snooze away the day at home. About the cancer risk? Now, we know that this particular type of biologic does not increase the risk of lymphoma any more than untreated RA does.
I grew up in a time when RA was an even deeper mystery than it is today. Treatment consisted of steroids, gold injections, and occasionally throwing crazy ideas at patients to see if it worked. When I was 17 years old, I spent several months taking part in a study testing a combination of antihistamine and ulcer medication, because the researchers were investigating if RA was allergy-related. Aside from finally getting some peace in my always-roiling stomach, this did nothing to improve my health. Eventually, I stopped trying new experimental treatments. The dashed hope when something yet again was no more effective than a breath mint was just too devastating.
The science is well-established: Not treating RA is a guaranteed ride to the kind of damage that can seriously affect your ability to function, as well as your overall health. Growing up as I did in a time when there was no treatment, I have a lot of joint damage and have been a permanent wheelchair-user since I was a teenager. This doesn’t have to happen to you. We now have more treatment options than I ever thought would be possible and after decades of research, the American College of Rheumatology now recommends treating RA early and aggressively as the best path to remission.
It sounds so much easier than it is. Starting or switching treatment can still feel scary, especially when you try to be empowered and informed and read the lists of side effects. The journey from fear to daring to hope is the same for all of us, regardless of when we have to make the decision. Better the devil you know... the saying goes and when you weigh the possibility of feeling better against the side effects listed in the ad, compounded by horror stories on social media, it’s no wonder that you hesitate to say yes to treatment that sounds riskier than the disease.
The reality is the exact opposite. What neither the ad nor the terrible stories on the Internet will tell you is that side effects are a possibility, not a certainty, and the really serious ones happen only very rarely. On the other hand, RA damage is actually inevitable unless halted by medication. As someone who grew up in a time without treatment, I can attest to this fact, not just from my personal experience, but from seeing it on everyone else I met (and some research besides). This is what you’re actually weighing—certain damage from NOT treating RA versus experiencing possible (and very often manageable) side effects from doing so.
Right there is the key to making any important decision—facts and the context of your life. Here are the steps you can take to help you make a decision:
Get accurate information. Information is power and getting the correct facts is essential. You might want to prepare for the conversation with your rheumatologist by doing some research. Make sure you’re reading reputable websites—look for the HONcode certificate that shows the website follows certain guidelines in presenting information. To learn more about that, check out the HONcode link at the footer of any HealthCentral page. Doing some reading will help you answer some of your questions and may add others.
Make a list of questions for your doctor. Put together a list of your questions to share with your rheumatologist and make sure to include the things that give you the heebie-jeebies, such as the actual real risk of one of those terrible side effects. The goal of this appointment is to make you feel you have all the information you need to make an informed decision.
Take a close look at your life. Ask yourself about how RA affects everything from your ability to work and take care of your family to whether you’re worried about limitations in the future. Also consider whether you have practical and emotional support from family and friends.
Seek perspective. Much as we’d like to pretend otherwise, our lives are actually full of risk. Think about the risks that are part of your every day. For instance, many of those scary-sounding serious side effects are actually less likely than the risk of being in an motor-vehicle accident and most of us get into a car every day anyway.
Face the fear. At last, deal with the fear. Look at it from all angles, notice its shape and colors and causes. It likely includes: What if I get a terrible side effect? What if it doesn’t work? What if it works and then stops? And then flip it. Imagining the opposite is one of the most effective ways to deal with the worry that bad things will happen. What if you don’t have terrible side effects? What if, like so many others with RA out there, you don’t have any side effects at all? What if the medication does work? And what if it works for decades?
Any important decision in your life ultimately includes a leap of faith. Falling in love, getting married, changing jobs, having kids, and yes, taking the medication your doctor recommends. Life with RA can feel very much like it limits your choices, but remember this: You always have the choice to hope.
American College of Rheumatology: Rheumatoid Arthritis. rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Rheumatoid-Arthritis
RA Remission: Axtell , B. Your RA is in Remission! Now What? arthritis.org/health-wellness/treatment/treatment-plan/disease-management/your-ra-is-in-remission!-now-what
Lymphoma Risk: Annals of the Rheumatic Diseases. Mercer, L. K., Galloway, J. B., Lunt, M., Davies, R., Low, A. L. S., Dixon, W. G., … Hyrich, K. L. (2016). Risk of lymphoma in patients exposed to antitumour necrosis factor therapy: results from the British Society for Rheumatology Biologics Register for Rheumatoid Arthritis. 76(3), 497–503. doi.org/10.1136/annrheumdis-2016-209389
Arthritis Foundation: Rheumatoid Arthritis. arthritis.org/diseases/rheumatoid-arthritis
RA Meds and Cancer Risk: Rheumatology. Silva-Fernández, L., Lunt, M., Kearsley-Fleet, L., Watson, K. D., Dixon, W. G., Symmons, D. P. M., & Hyrich, K. L. (2016). The incidence of cancer in patients with rheumatoid arthritis and a prior malignancy who receive TNF inhibitors or rituximab: results from the British Society for Rheumatology Biologics Register. 55(11), 2033–2039. doi.org/10.1093/rheumatology/kew314