Suzy Katz’s Rheumatoid Arthritis Story

When my right knee ballooned to twice its normal size in the summer of 2016, I didn’t know it yet, but it would start an eight-year medical mystery no one could solve.

It began as a dull ache, then developed into a stiffness, making walking feel awkward. Within days, my knee was swollen and hot to the touch. I went to bed and woke up in a panic when I couldn’t bend my knee and walk down the stairs of my six-floor walkup New York City apartment. I called an ambulance and was taken to the emergency room on a stretcher. 

At the hospital, I was poked and prodded with no answers on what was causing my mysterious symptoms. The doctor sent me home with a prescription for naproxen, a nonsteroidal anti-inflammatory drug (NSAID), and said I should see a rheumatologist, a doctor who specializes in conditions of the joints, muscles, and bones. 

The rheumatologist ordered blood tests and quickly diagnosed me with Lyme disease. This was surprising, but at least I had an answer. I had traveled upstate that November, and although I never found a tick on me or the telltale signs of Lyme, such as the bull’s eye rash. It wasn’t inconceivable that I had been bitten and infected during that trip. 

To help with the symptoms, the rheumatologist drained fluid from my knee. First, they numbed the area with a lidocaine spray. Then, they inserted a large needle just under my kneecap and removed clear synovial fluid, which lubricates joints so they can move easily.

The procedure was painful, but I was glad to relieve some of the pressure on my knee. I dutifully took a course of antibiotics, expecting a quick fix. My relief and feelings of well-being were short-lived when, a few months later, my symptoms returned. 

My knee was swollen and full of fluid again. I was becoming frustrated and upset when I could no longer walk long distances or keep up in my gym classes. I went back to see my rheumatologist, who ran additional blood tests and confirmed that my labs were clear of Lyme disease. 

I switched to another rheumatologist after not getting anywhere with the original doctor. This doctor also stated that he found no cause for the swelling in my knee. He attempted to prescribe anti-inflammatory medications and topical analgesics (pain relievers), which did not help. 

Eventually, after a lot of pleading on my end, I convinced the doctor to run additional bloodwork, and he said it showed I was still positive for Lyme disease, so I did another course of antibiotics.

When my swelling didn’t improve and it became increasingly difficult to move, I switched doctors again, looking for anyone who would agree to aspirate my knee. Over and over, I was told, “Your labs are normal. Maybe it’s overuse. Maybe it’s stress.” One doctor tried to convince me that the right knee was “always” bigger than the left.

I felt increasingly deflated about my health and frustrated by the medical professionals who were dismissive about my very real pain. I lost friends who didn’t want to be around someone who was always complaining about their knee.

Convinced that I was suffering from persistent Lyme disease, I read medical studies on Lyme disease and found support groups online. I was hoping to get new treatment ideas, including treatments I’d never considered before.

I spent hundreds of dollars out of pocket on alternative therapies like vitamin infusions and ozone therapy after physical therapy, cupping, and acupuncture did nothing to strengthen my knee or resolve the pain and swelling. 

An integrative medicine doctor put me on a lot of experimental treatments for Borrelia burgdorferi, the Lyme disease bacteria, despite not showing any symptoms for the condition aside from my swollen knee.

One treatment included a dose of Antabuse (disulfiram), a medication used to treat alcohol use disorder that is sometimes prescribed in small doses to treat Lyme disease. I developed neuropathy, tingling, and burning throughout my body, and promptly stopped all treatment. 

As a last resort, I found one additional rheumatologist who was well-versed in Lyme disease. She did something none of the other rheumatologists were willing to do: She listened and was open to trying something different. She agreed to aspirate my knee once again and tested the synovial fluid she removed for inflammatory markers.

Through blood test results, joint imaging analysis, and my history of symptoms, I was finally diagnosed with seronegative rheumatoid arthritis. It is a form of rheumatoid arthritis that does not show up in blood work but produces the same symptoms. She suspected that my Lyme disease may have brought on the autoimmune reaction that led to rheumatoid arthritis. 

With a diagnosis in hand, I started weekly injections of Enbrel (etanercept), a medication that reduces inflammation by blocking tumor necrosis factor (TNF) protein. The change was almost immediate.

For the first time in years, the swelling and pain disappeared. I could go through a subway station without strategizing where to sit. I got my life back in exchange for an unpleasant but tolerable weekly shot into my thigh.

Enbrel also lowered my immune response, so I had to be more cautious about avoiding illness. Still, the ability to move and return to the gym was worth it to me.

I wish doctors were quicker to say, “I’m not sure,” and consult other medical professionals before dismissing my pain as unimportant or psychological. If there had been more humility, more willingness to listen, and less medical paternalism (healthcare providers making decisions for patients without properly informing them because they believe they know best), perhaps I could have received my diagnosis and treatment years earlier.

Rheumatoid arthritis is an autoimmune disease that has no cure, but with early intervention, damage to the joints can be prevented, and effective management of the disease can keep patients comfortable and pain-free.