“You have RA!”
Padma: Growing up in Bombay, India in the sixties, my sister Rama and I definitely had our share of daily physical activity. We walked to the bus stop to get to school, played at midday, had a “drill” period, and played outdoor games again when we got back home. We ran, jumped, skipped, somersaulted, and ran hurdle relays. I was even a Games Captain! Fast forward to the late eighties. My husband and I had just arrived in Vienna, raring to see the city’s many delights. From the blue, I developed aches and pains so debilitating that my hotel room (and a few apple strudels) was all I saw of Vienna. No palace, no horses, no charming cafés. My journey with RA had begun!
Rama: My RA diagnosis came five years after my sister’s. I had been through a period of tremendous stress, and started experiencing severe body aches and pains. A few tests later, I learned I had RA. To this day, a part of me believes that, were it not for the stress trigger, I might have been spared this difficult disease.
Two sisters, Two trajectories
Padma: My RA came in like a lion, and took nearly 5 years to stabilize. While it has not yet gone out like a lamb, I would say it has been well controlled and broadly stable since those early years. I have been fortunate—and twice so to have had excellent doctors who have managed my disease with skill and compassion. Management has been important because, although I have fared well overall, I have had my share of flares and painful episodes of active inflammation. Early on, RA affected my hands and feet, the latter, seriously; finding shoes that fit has been the quest of a lifetime…leaving me with not a little sympathy for Cinderella’s stepsisters.
Rama: My initial years of RA were a breeze. But with time, I became more achy. My Methotrexate dosage, gradually being increased, was bumping up against the limit. I had a high regard for my early rheumatologists; but given Johns Hopkins’ outstanding reputation and my sister’s happy experience there, I felt that a switch at that juncture may be a good idea. Over the next two decades, my RA trajectory veered completely away from my sister’s. My inflammation trended farther upward, and with strong persuasion by my rheumatologist, I added a biologic to my regimen. My RA responded well. But four years later I had to switch to another biologic: the first one had affected my lungs. Along the way I also learned that my arteries had developed plaque, notwithstanding excellent lipid test results for years. “RA can do that!”, I was told.
Bonding over RA
RA is a serious illness; but being sisters with the same disease has allowed for some unique light moments between us. Going off together to distant Baltimore for a friendly visit with our Johns Hopkins rheumatologist was something we would look forward to—a sort of fun day trip. We have also enjoyed sibling rivalries of sorts (whose CRP was lower, or whose thumb shots were more painful). Sometimes we’ve laughed over our ability to cheat the pharmacist by sharing each other’s (identical) medications, when one of us ran out prematurely. And it has always been nice to have someone lend an empathetic ear—or produce a left wrist brace at a minute’s notice, for that matter! But sisters apart, moral and physical support from other members of the immediate family—husband and parents, in our case—has been paramount. Faith and Prayer have also given us a lot of comfort and strength.
Some Hard Truths…
We’ve learned some hard truths about RA over our three or so decades with the disease. It is a serious, systemic illness that can potentially affect major organs, not just hands and feet. It is not a one size-fits-all illness: it can affect even members of the same family in vastly different ways, as seen above. It is a risk factor; one is immuno-compromised and everything becomes more complicated when one has RA. And, it is not only RA but also RA drugs which can cause serious problems and need to be monitored.
…and the Johns Hopkins Difference
But RA is not a life sentence! With the excellent care and treatment we have received at the Johns Hopkins Arthritis Center, we have been able to lead normal, productive lives. We have had busy work lives and have also been able to participate actively in church and other social activities. We both used to travel for work, sometimes to quite remote places such as Vanuatu in the South Pacific or little towns in Madagascar, Africa. As long as Dr. Bingham gave us his blessing, we felt reassured. More generally, we feel blessed to have a world-renowned rheumatologist as our doctor, whose judgment and expertise we have come to rely on greatly.
Caring for our sick parents over a long, very stressful period is also something we were able to do under the watchful eye of Dr. Bingham. He advised us on precautions to take as well as the importance of caring for ourselves while doing the needful for our parents; he was also exceptionally supportive in multiple ways during this time, including in terms of being very accessible despite the heavy demands on his time. A close patient-doctor relationship matters greatly with a difficult, chronic illness like RA.
RA has to be managed. Management has entailed regular monitoring, or stepped up monitoring when there was an issue; keeping an eye open for changes and side effects of medications; and making adjustments as needed to keep inflammation under control, the bottom line. A case in point is when Rama’s lung CT scan showed some anomalies; working with a specialized pulmonologist, Dr Bingham traced the anomalies to the use of Enbrel and switched her medication, which is putting her health back on track. We look to Dr. Bingham to continue to help us manage our disease and navigate these very challenging waters.
The Need of the Hour: Research
As of now, there is no cure for RA. But the Arthritis Center at Johns Hopkins is leading the way, to find answers. The Center’s team of outstanding clinicians provides state of the art care—in over 4500 patient visits a year—and also conducts research; drawing on both, the team has made great strides in understanding and treating RA. New areas of inquiry continue, underpinned by seminal clinical trials. We are proud to say we have participated in some of the research.
Some of the new research is yielding real-time outcomes for RA patients. Notably, a 2024 study by Dr. Bingham of the COVID vaccination response of autoimmune patients helped inform national guidelines in 2024 for immunization of RA patients. Closer to home, the study allayed our own anxieties about the vaccine’s possibly worse effect on RA patients, allowing us to take booster after booster with an easy mind.
Still, fundamental questions remain, and there is considerable need for more study—and more resources. Particularly in today’s environment of reduced public sector money, the importance of private funds cannot be overstated. We believe that patients, as the primary beneficiaries, would do well to help bridge the funding gap; and indeed, our family has felt privileged to support the excellent research of Dr. Bingham and his team. It is only through such research that answers will emerge, with life-changing benefits for present and future patients of RA.
Finally, we would like to thank Dr. Bingham for this opportunity to share our experience of living with RA. More generally, we extend to him our heartfelt gratitude for his outstanding care, kindness, and consideration these many years. We would also like to express our deep appreciation to the nurses, researchers, and administrative staff for their excellent and compassionate care. A special word of thanks to Mrs. Penny Athanasiou, Clinic Coordinator: she has been not only a model of efficiency but also our trusted friend and supporter at the Arthritis Center for as long as we’ve known her.
On the lighter side…
RA trials
Ask me not to pull, push, press, squeeze or twist
I’d love to, but as the saying goes, it’s all in the wrist!
Bottles, jars, faucets—the worst—now I view with dread
Although, much worse, perhaps, is that contrary cabbage head.
Other enemies too there are, lying in wait at every turn;
Laundry, grocery, garbage bags – they make my stomach churn!
But we’ll get by, I know we will, thanks to our mighty mentor,
Our tried and true forever friend, Johns Hopkins Arthritis Center!
