Living With Gout
As a 23-year-old avid athlete, I was far from an obvious candidate for a gout diagnosis. When I started experiencing flares of severe pain in my foot, I wrote it off as a sports injury, not thinking it could be something more serious. Little did I know at the time, I was one of the 9.2 million1 people in America who was affected by gout. While many patients with gout can be successfully treated with daily oral therapies to keep their condition under control, some have uncontrolled gout that does not respond to these treatments and can cause continuous and debilitating pain.
I experienced multiple flares every year during my young adult life and through my medical residency. Diagnosed with a tibial sesamoid fracture, I decided to live with the pain until I could get it fixed later. Missing rotation days during residency due to my frequent flare ups was not an option, since there were few make-up days available. These ongoing flare-ups were very frustrating and would sideline me from normal, everyday activities – even getting up to go to the bathroom would be an arduous task. My days would include taking each hour at a time, waiting for my shift at the hospital to finish so that I could go home and rest. Mentally, this repetitive routine was exhausting. Even during phases where my gout was asymptomatic, I would avoid any activity that could trigger a flare.
It wasn’t until I was 27 years with my own podiatry practice that I finally realized that my chronic foot pain was likely to be due to gout and not a sports injury. I started the regular regimen of dietary changes and oral medications, including allopurinol, which reduced the frequency of the gout attacks. Multiple years passed, and I assumed everything was well controlled and that a fuller assessment of my gout wasn’t necessary.
However, 6 years ago, I started to experience more frequent gout attacks, once or twice a month, despite being on 2 oral treatments. Most of these aches and pains, I attributed to my age, but I wanted to confirm and check my serum uric acid level. To my surprise, the level was elevated. When the recurrent pain in the plantar of my foot became unbearable, I sought help from a colleague. Together, we were able to identify an abscess of tophaceous gout in the soft tissue of my foot. It was then that I realized that gout was continuing to affect my body, even with regular oral treatment – uric acid was building up in other organ systems, tendons, joints, and soft tissues.
It was around this time that I heard about an infusion therapy for uncontrolled gout during a journal club meeting. It piqued my interest and I started to ask questions of peers and local rheumatologists, and further research this treatment option.
I was still experiencing daily aches in my hands, making it difficult to perform surgery, as well as everyday activities like writing. That is when I decided to opt for the intravenous infusion therapy. In the first 3 weeks, I started experiencing relief from my symptoms, and by the end of the month, most of my joints were functioning better. I was even able to better move my hands, and surgery was no longer painful to perform. The infusions removed all my visible tophi, as well as the ones I wasn’t even aware were affecting my body.
Following treatment, practicing medicine and performing surgery was once again a joy. I continue to be vigilant and receive treatment for my gout to keep my uric acid level under control, and I am no longer experiencing the debilitating flare-ups and painful symptoms that I had become so used to.
It’s important for people to understand that when it comes to uncontrolled gout, you need to be aggressive with and continue treatments until uric acid deposits have completely diminished – not just when the symptoms go away and the tophi are reduced. Being cognizant of these things provides the opportunity to mitigate the long-term impact of the disease.
I am now a fierce advocate for patients with gout and for early treatment modalities. At least a few times a month, I see patients with pain as what I had experienced. Most flares in my patients go misdiagnosed for years, and unfortunately, many people think that gout is a condition that is caused by the actions of the patient, and this in turn creates a lack of urgency to treat. For me, this general lack of urgency resulted in some irreversible, destructive changes to my joints. But with aggressive treatment protocols, including lifelong use of oral therapies, to keep my uric acid level in check and my tophi resolved, I am leading a productive lifestyle once again.
I do my part to reassure patients who are affected by this condition that it can be controlled and should be aggressively treated as early as possible to prevent further long-term damage. Gout can cause damage to almost every organ system in the body. My treatment goals have changed from only “controlling flare-ups” to actively reducing the uric acid burden in the body. It is amazing how many patients feel better after receiving proper treatment, outside of just their joint pain. In my own experience, infusion treatment has saved my patients from amputations, chronic infected wounds, and helped them regain mobility and daily living function. By controlling elevated serum uric acid levels, I have been able to reverse or change the course of surgical interventions on my patients. Many patients can now have more minor surgical procedures for stability instead of an amputation.
I believe gout is an insidious disease, which left untreated, has severe consequences. Like diabetes, it effects multiple organ systems in a destructive manner, which is why it is critical to push for more preventative measures to avoid for gout to become uncontrolled. Why should we wait for the destruction of the musculoskeletal or other organ systems, and then seek treatment, rather than taking a heads-on approach to prevent damage? Prevention of the buildup of uric acid is key to good outcomes and longevity of patients. Over time, as treatment protocols have evolved for diabetes with stricter controls being implemented, we should apply the same concepts to gout. The accumulation of uric acid in multiple organ systems is usually undetected until later stages of gout, and can cause serious, systemic damage.
In my opinion, the incidence rate of gout may be underestimated, and physicians need to be educated regarding conducting the proper tests to identify uric acid deposition in a patient’s joints and to properly diagnose and treat gout early.
I want to share my story to let people with uncontrolled gout know they are not alone, and educate practitioners, like myself, that there is a better way to treat gout than just treating the flares and joint pain.
Patient and provider education are crucial in controlling and providing good future patient outcomes. I personally know, through my own experience and treating other gout patients, how treating the condition proactively can greatly change the course of a patient’s life, comfort, and even livelihood.
Xu-Chen M, Yokose C, Rai SK, Pillinger MH, Choi HK. Contemporary prevalence of gout and hyperuricemia in the United States and decadal trends: The National Health and Nutrition Examination Survey, 2007–2016. Arthritis Rheumatol. Published online January 7, 2019. doi:10.1002/art.40807