Two hands with rheumatoid nodules in on them.

RA Nodules: Knot a Big Deal?

Before my diagnosis of rheumatoid arthritis/rheumatoid disease (RA/RD) in 2000, I’d been repeatedly misdiagnosed for years. Doctors told me I had strains, sprains, tendonitis, and Reiter’s syndrome before I was finally referred to a rheumatologist.

A seronegative RA diagnosis

Like previous doctors, this specialist ran bloodwork to try to gain insight into what was causing all the pain, inflammation, and fatigue I was experiencing. However, unlike the other doctors, the rheumatologist wasn’t thrown by the lack of rheumatoid factor in my blood.

Instead, based on my symptoms and physical exam, he diagnosed me with seronegative rheumatoid arthritis. Some of the indicators included a presentation of symptoms in multiple sets of symmetrical joints, daily morning stiffness, and nodules.

Rheumatoid nodules on the knuckles of my hands

Of all the symptoms I was experiencing, the nodules on my hands were simultaneously near the top and the bottom of my list of concerns. RA nodules are firm lumps under the skin, often near joints. I had several of these knots on and in between the knuckles of my hands. Unlike my painful joints, these bumps caused me no physical discomfort whatsoever so, in that regard, they were not a big concern.

I was worried the nodules would get larger

However, they were obvious, prominent, and new, which did concern me. While many of my joints were puffy, the swelling wasn’t as noticeable as these small marbles under my skin were. To me, they were yet another signal that something wrong and abnormal was happening inside of my body.

Further, about five years earlier I’d had a ganglion cyst removed from my wrist, as it kept growing larger. I wondered whether these knots would follow suit and continue to increase in size until they too required surgery.

Is treatment necessary or required?

My rheumatologist quickly did away with most of my nodule concerns. He told me that typically they do not cause patients any problems, and therefore intervention is usually not required. As he explained that my symptoms were caused by a degenerative autoimmune disease without a cure, the nodules settled near the bottom of my growing list of concerns.  I didn't like the way they made my hands look, but pain reduction and range of motion became paramount.

In that first scary year of adjusting to my “new normal,” my grandmother bought me a hot paraffin bath in the hopes that it would soothe my hand pain. I remember joking with my sister who also contended with autoimmune disease, “Well, I don’t know if the paraffin is helping, but at the very least my nodules are silky smooth.” Laughing with someone I trusted was a way to cope with the way rheumatoid arthritis was impacting all areas of my life, including my appearance.

Nodules can develop in different parts of the body

While I didn't like having lumpy hands, my nodules could certainly have been worse. I did not develop them in multiple areas of my body, as some people get them on their hands, wrists, elbows, forearms, and hips.1

My nodules gradually disappeared

They never impacted my range of motion or caused me any discomfort, aside from the displeasure of seeing the bumps protruding from under my skin. In fact, after several years of RA treatment, the nodules actually disappeared. It was such a gradual process that I didn’t even notice they were getting smaller until they were nearly gone. While other symptoms have persisted, it’s now been several years since I’ve had nodules.

Problematic nodules may require surgery

As many as 30 percent of people with RA/RD have nodules and, for most of us, they are an issue of aesthetics.2 However, for a minority of people nodules can be more problematic, especially when they are located in sensitive areas of the body or obstruct mobility, such as when they are in parts of the hands that hold writing utensils. In these cases, surgery may be required. In rare cases, nodules can even form on organs such as the lungs, although this is difficult to diagnose.3

The role of methotrexate use

The majority of people with RA nodules have seropositive RA and the use of methotrexate can increase the occurrence of nodules.4 (However, I have seronegative RA and developed nodules before I was prescribed methotrexate.)

As with all RA/RD-related concerns, if you have RA nodules that are causing you discomfort or restricting your mobility, be sure to discuss this with your rheumatologist.

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