It’s Time to Let Go of These RA Med Myths

Yes, there are risks with any drug you take. But let's sort fact from fiction about rheumatoid arthritis treatments.

by Lene Andersen, MSW Patient Advocate

I’ve always loved ancient myths, especially the slightly scary kind. There’s something so delicious about getting that jolt of adrenaline when you know the story is fiction and you have the ability to put the book down when it gets too intense. But when myths directly affect your life, it’s a lot less fun. When you live with rheumatoid arthritis (RA) and are considering taking medication, you’ll find lots of myths, preconceptions, and misdirections, many of them scary and masquerading as facts. It can take a long time to find the nugget of truth that will lead you to a place where you can make decisions based on facts, not fear. In this column, I’ll save you some time (and anxiety) and pick apart three of the most stubborn myths about RA medications and what I’ve found to be true.

Myth #1: Biologics Cause Cancer

When I took my first TNF-blocker biologic in 2005, I was told that one of the potentially serious side effects was an increased risk of lymphoma, a type of cancer. I decided to take the medication anyway because a severe year-long RA flare had destroyed my life. The biologic was my only choice to live, instead of merely existing in a hell made of pain. Now, 16 years later, we know that biologics actually don’t increase your risk of getting lymphoma more than having RA already does. In fact, a study published in Annals of Rheumatic Diseases involving more than 15,000 RA patients who took a biologic found no increased risk for lymphoma. That said, biologics may slightly increase your risk of getting skin cancer.

The important thing to remember is that life comes with risk. Sometimes, people get skin cancer, die of heart attacks, are injured in car accidents, or fall in the shower. And yet, we continue skipping sunscreen, eating fast food for lunch, driving, and washing ourselves. We know that risk does not equal certain doom and find ways to manage that risk. You can deal with RA medication the same way. Educate yourself about what the risk actually means. For instance, when the studies show that biologics increase your risk of a skin cancer called squamous cell carcinoma by 30%, it sounds like a really high number. But according to the Arthritis Foundation, it actually means that one in 1,600 people treated by biologics will develop this type of cancer, a number which is a lot more emotionally manageable. Then approach it the way you do any other risk in your life and educate yourself about how to reduce it, for instance by talking to your doctor about the ways to manage the risk of skin cancer.

Myth #2: All Medications Are Toxic

If one of the scariest words used in the myths about RA meds is "cancer," a close second is "toxic." We are surrounded by an intense pressure to go natural, avoid chemicals, and reduce toxicity and mostly with good reason. There are really harmful substances affecting us and the environment and we can probably all agree that those should be reduced. But are medications inherently toxic? Not at all. In fact, they’re helping all of us live longer and healthier lives.

I believe the idea of toxicity originates from two places. One, the fear of chemicals. And since everything—including humans—are made of chemicals, it might help to specify that this should be about the “bad” substances like DDT and asbestos. The second factor may be the fact that methotrexate, the gold standard for treating RA, is a chemotherapy drug. However, the tiny dose of methotrexate you might take on a weekly basis to keep your RA suppressed is very different from the much larger dose used to treat cancer, which aims for a level of toxicity that will kill cancer cells. Your doctor can help you understand the difference and how helpful certain kinds of chemicals can be in getting you back to living your life. That might even help you ignore people who spout simplistic myths.

Myth #3: RA-Drug Side Effects Will Ruin Your Life

Much like the previous myths, this one overdramatizes the reality. All drugs—not just those that treat RA—come with a risk of side effects. If you’ve ever done a Google search on a particular medication, you’ll find the long lists of warnings. For instance, have you ever looked at the laundry list of potential disasters on the side of your basic acetaminophen bottle? But that’s the key: Side effects are a possibility and far from inevitable. I am myself a bit of a side-effect magnet (thankfully mostly manageable), but there are lots of people who only have the good effects of RA meds. That might even be you.

Even if you do experience side effects, chances are they won’t stop you from getting on with your life. There is a reason that those lists of side effects are divided into common, less-common, and rare, with the scariest saved for that last category. If you get a side effect, it is most likely to be something fairly minor that you can manage. For instance, I experience extra gas, muscle aches, fatigue, and bit of queasiness for a few days after I take my medication, but compared to the way active RA ruined my life? It’s a no-brainer—I’ll take those side effects. But with a caveat: There are times when side effects affect your life as negatively as active RA. In those cases, your doctor can hopefully help you find another solution.

Myths are often based in a kernel of truth, but as we learned when playing the game of telephone as children, a story grows and changes the more it’s retold. So it is with the myths about RA medications—there simply isn’t one truth. As ever, real life is more complicated and when you factor in how wildly different we are from each other, there is only one that is right for you. Finding out what that is involves talking to your doctor and your family, reading reputable information, and some deep thinking about what you want in your life. And that’s all that matters.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.