Raise your hand if you’ve heard of “checkpoint inhibitors.” OK, maybe don’t really raise your hand since you are probably sitting alone somewhere. Or maybe you’re riding the bus or train, and you don’t want people staring at you with the “Check out the crazy lady raising her hand like a loon” look. Perhaps you just want to think about raising your hand, OK?

All set? Great. Because you should ALL be (thinking about) raising your hands—whether you are aware of it or not, I’m guessing that all of you have heard of checkpoint inhibitors. Some people call them “cancer immunotherapy,” some people (namely the companies that sell them) call them Keytruda (pembrolizumab), Opdivo (nivolumab), Tecentriq (atezolizumab), or Yervoy (ipilimumab). You may have seen an ad for 1 or more of these on TV, once… or twice… or 762 times a day.

Remember back in August 2015 when former President Jimmy Carter announced he had metastatic melanoma and then, 4 months later, he was back in the news announcing his scans showed no signs of cancer? He got pembrolizumab. So these drugs are clearly out there benefitting lots of patients, and that’s awesome.

What is less awesome is the side effects that come with these medications. Since they “take the brakes off the immune system,” that means they tend to cause a lot of problems in terms of immune activation. The list of side effects related to checkpoint inhibitors is long and touches on just about every organ system and body part that exists—including joints.

Since I work in a large tertiary care center with a very large oncology department, it was inevitable that these patients would find their way to us over in rheumatology, asking for help with their joint pain.

Without question, guidelines are helpful… But so much of what we do falls outside the norm, and our patients would be in real trouble if we all waited around for guidelines to provide us with a roadmap for every condition that passes through our clinic doors.

They were very clearly frustrated, having beaten “The Big C” but unable to enjoy life because of debilitating arthritis. Almost all of these patients were still on their checkpoint inhibitors, either as part of a clinical trial or as off-study medication.

We had lots of questions when these patients started showing up in our clinic in greater and greater numbers. What should we do? How should we treat them? What drug-drug interactions should we worry about? Would it be OK to use immunosuppressants when the whole point of their oncology treatment was to get their immune system to fight cancer? If we did use immunosuppressants, would patients be more likely to develop infections? If they were on a clinical trial, would we jeopardize their ability to stay in the trial if we treated their arthritis?

Because these drugs are so new and testing is ongoing for many of them, there were no guidelines to help us. Actually, there was basically nothing to help us. Those of us in the Immune Related Adverse Event Clinic (2 docs, a fellow, and me) had to decide: Do we treat these patients aggressively now or do nothing and wait for guidelines and the medical literature to catch up?

This is an extreme example of what all of us face in the clinic almost every day. In rheumatology, sometimes it seems as if the exception to the rule IS the rule. Without question, guidelines are helpful. I am grateful to all of the clinicians who dedicate their time and expertise to craft them, and I absolutely consider them to be a valuable clinical tool. But so much of what we do falls outside the norm, and our patients would be in real trouble if we all waited around for guidelines to provide us with a roadmap for every condition that passes through our clinic doors.

So getting back to our story—yes, we currently treat patients on checkpoint inhibitors who develop joint pain. We have made some mistakes along the way and learned from them (hot tip: always check with a protocol nurse before initiating prednisone on a patient who is receiving drug through a clinical trial. Turns out there are dosing restrictions. Strict ones.). We have also seen patients improve to varying degrees, and one class of drug in particular seems to be standing out as especially effective (I would love to tell you which one, but since there are no randomized controlled trials, that would be über-irresponsible of me). We would never have known that if we hadn’t been willing to take a chance and treat patients with a brand-new clinical presentation.

I encourage all of you to use guidelines when they are available, but don’t be afraid to do research, collaborate with your colleagues in other departments, and reach out to other rheumatology providers when you see a patient who needs help but there are no “rules” to follow. Our patients need help now, and they can’t afford to wait around for the guidelines to catch up!

P.S. You can think about putting your hands down now.

AUTHOR PROFILE: Elizabeth Kirchner, CNP, RN-BC, is a nurse practictioner at the Cleveland Clinic in Cleveland, Ohio, and the Education and Curriculum Chair of the Rheumatology Nurses Society.