“I just want to play golf.”
How many of our patients say that they just want to enjoy retirement? At 82, Mr. H just wants to play golf. At least, he tells me that is an important goal of his and it’s why he is here in my office. He is the primary caregiver for his wife who suffered a stroke, and golf is HIS time with his pals. They have been playing together for years. It keeps them young. But Mr. H is worried about his game. Summer is approaching and in Phoenix, that means he has to play nine holes before 10 a.m. Right now he dreads mornings because his whole body hurts. Mr. H has chronic pain, but things are about to change for him.
Mr. H has recently been diagnosed with gout. I first met him several months ago when he came to my rheumatology clinic with a swollen right hand and pain in his left ankle. He struggled to hold his golf clubs. His ankle would swell after walking the course. He was at his wits end because he was being treated for rheumatoid arthritis but wasn’t getting better the way he figured he should. He was taking methotrexate and on a biologic infusion, and had been on prednisone before that. He gave up alcohol when he was prescribed methotrexate a year ago. He tells me he doesn’t indulge in steak because his wife can’t eat it after her stroke. He is thin but fit. He lost weight after her stroke several years ago and states he does his best to be healthy so he can take care of her. He is not someone you would look at and think he has gout. But he is feeling better after starting allopurinol, and his uric acid level has gone from 8.2 to 4.2.
He feels like he is getting his life back. He tells me the last few weeks have been some of his best golf. I smile, good for him.
He came to me for a second opinion because his friend urged him to be tested for gout after his foot and ankle swelled up after the holidays and he had to cancel golf. This wasn’t the first time he had to cancel due to pain in his feet. He wanted to be able to play golf through the summer, and he knew he needed to be on the course early to play through the Phoenix heat. Mornings were very difficult for him, even the days following his infusion when he was told he should be feeling better. He couldn’t go more than two weeks without prednisone and he felt like it caused him to be cranky. He told me he has things to do, and being in pain is “getting in the way of living my life.”
Mr. H is like so many others who suffer from gout. Episodic pain that improves to a point then flares back up again, each flare worse than the last. As uric acid accumulates in the body, inflammation gradually increases and leads to a smoldering cascade of hypertension, renal disease, cardiovascular disease, chronic pain, depression, and eventually hopelessness that anything will get better or improve. Patients reside in a perpetual hamster wheel of fear: fear of the next flare, fear their next meal will cause a flare, fear of letting down the ones they love because they cancel plans, fear of not living their lives. Mr. H was in that wheel. Turning around and around for years, since his first flare in his 50s.
But how do patients like Mr. H get here? How does someone live decades with painful flares of intense inflammation before they are diagnosed? Patients, just like their disease, hide. They hide from us in plain sight. They hide because they are ashamed they have the same pain their fathers, uncles, and grandfathers did. They hide because they feel shame we will scold their dietary habits. They hide because they are often only treated during flares and not for the long term. Sure, gout improves when we treat it with NSAIDS, colchicine, or steroids. But gout is a disease of long-game statistics. Gout needs maintenance therapy to stay under control. And maintenance means a different dose of medication for different patients.
Like hypertension, we don’t just change a few things and it’s miraculously controlled. We don’t give the same medication to every single patient and expect the same result. Like a patient with a hemoglobin A1C of 12, we don’t expect their next level to be 5.4 on metformin alone. So how is it that we are trained to give a patient with a variable serum uric acid level who has multiple gout attacks a month, the same dose of urate-lowering therapy and expect they are cured?
What makes gout so elusive? We have largely ignored gout over the years and have variable levels of experience treating patients with gout as a medical community. No one single group claims gout as their disease, yet even rheumatologists disagree on how gout should be treated. Gout is the leading cause of inflammatory arthritis in the U.S., and we miss it all the time.
We are human, just like our patients, and our testing can fool us. Joint pain is chronic, especially as patients age. Lower extremity swelling and edema is often overlooked because patients stop complaining about it. Gout begins as episodic joint pain and swelling, and patients are rarely seen in the office during a flare. When they are, gout can look just like cellulitis, rheumatoid arthritis, psoriatic arthritis, or even an injury. Gout can look like a skin nodule, and these are sometimes removed by podiatry or dermatology. Gout can coexist with kidney stones, chronic renal disease, atrial fibrillation, and even chronic back pain.
Rheumatoid factor can be positive (albeit low-titer) in patients with any inflammatory syndrome, and particularly a portion of gout patients. Gout commonly coexists with psoriatic arthritis and even in transplant patients. Inflammatory labs such as C-reactive protein and erythrocyte sedimentation rate are typically positive during a flare and can be “normal” during an intercritical period between flares. The most helpful lab of all, serum uric acid, can actually be in the normal range. When labs are normal, we are more likely to sign off and move on. We tend not to adjust medication for normal levels, though normal uric acid for a gout patient may still be too high to adequately control their disease. Imaging is also imperfect to diagnose gout, and across the nation we have limited access to dual energy CT technology that can identify urate crystal deposition, which can allow us to diagnose gout without aspirating fluid.
Gout is great at hiding in the body, just as great as the patients are at hiding from us. Gout is good at hiding in all kinds of patients and among many health care professionals and specialists who come into contact with patients like Mr. H. The American College of Rheumatology has guidelines to help us treat a target uric acid goal of six or less. This means that with oral urate lowering therapy (like allopurinol, febuxostat, probenecid) or pegloticase infusions, a patient who has gout should ideally have a serum uric acid level of less than six to be considered at goal for disease control. But the reality is that most patients who have gout are only partially treated with a serum uric acid level of six. We often have to lower the uric acid level even more than that, especially for patients who have erosive disease, tophi, or gouty tendinopathy. And how can we agree on what number a patient’s uric acid level should be when rheumatologists do not regularly follow these guidelines? Not to mention, how would podiatry, nephrology, primary care, or emergency medicine physicians have a rheumatology guideline on their mind when a gout patient sits down? I suppose AI will eventually do this for us, but until then, we are still struggling in all health care specialties to treat gout patients.
And by struggling, our patients are struggling to identify gout as a chronic disease and seek treatment for it. Sure, we want to avoid more medication and polypharmacy concerns, but gout does not resolve with diet alone. Gout is a multifaceted disease of under-excretion of uric acid, overproduction of uric acid, and chronic inflammation, that drives development of metabolic syndrome, cardiovascular disease, and renal disease. Gout is an inflammatory arthritis that deserves to have the same attention as rheumatoid arthritis or psoriatic arthritis. Our patients who do not improve with treatment we expect to help them should be evaluated for gout. Gout is also not the patient’s fault. Mr. H, among all my gout patients, will tell anyone that no person would wish to self-inflict a gout flare upon themselves if they had that kind of control.
At our most recent visit, Mr. H is telling me how he played nine holes of golf with his buddies in the July heat. He is proud of himself and shows me how he can make a fist without pain this time. He even takes his shoes off to show me his ankle swelling has resolved. He does not have tophi, but that doesn’t mean that his gout is less severe than if he did. He is happy and I am happy for him. He tells me that golf was not initially his retirement plan, but once his wife had her stroke, he decided to keep playing because he feels depressed staying inside all day. He is now off his methotrexate and infusion and has a few extra hours every two months to do something else that brings him joy. “I just want to keep playing golf,” he says, “I wasn’t ready to give up just yet. Thanks for helping me stay out there, Doc!”
What complications have you experienced when treating/diagnosing gout? Share in the comments.
Dr. Brittany Panico is a rheumatologist in Phoenix, AZ. She is a wife and mother of three awesome boys and enjoys hiking, being outdoors, traveling, and reading. She posts on @AZRheumDoc on Instagram and Brittany Panico, DO, on LinkedIn. Dr. Panico is a 2023–2024 Doximity Op-Med Fellow.
Illustration by April Brust
