Patient Perspective: Misdiagnosis of nr-axSpA

Transcript: Sergio Schwartzman, MD: Tiffany, you’ve mentioned some of the diagnoses you’ve had. Can you expand on them? You were given at least 1 diagnosis of rheumatoid arthritis. Were there any other diagnoses, and was there any action taken based on those diagnoses?

Tiffany Westrich-Robertson: The only other diagnoses were the undifferentiated connective tissue disease, and at that time I was just simply told, “We can’t give you any treatment for undifferentiated disease.” As far as comorbidities, on my chart I have a disease mentioned, but I do not meet the diagnostic criteria for that. The purpose of it is, I did have some issues with canker sores in my mouth. I do know that can be part of gastrointestinal issues, so I was put on colchicine, and it seemed to do magic for me. Other than that, I have had just the rheumatoid arthritis diagnosis.

The reason I want to expand on why that is really frustrating as a person living with these diseases is that we want to know what we have. This is because of not only the potential comorbidities or what will potentially transpire as the disease progresses but also things from my experience, such as the hassle with the charts, going from rheumatologist to rheumatologist. If you change and then you have in your chart that you have rheumatoid arthritis, it is literally starting over.

That puts another significant delay into access to treatment. But as far as other diagnoses, the primary one was given was rheumatoid arthritis. That’s the one that kept sticking, and they kept saying that’s what it must be, rheumatoid arthritis, because it can’t be anything else. That’s what I kept hearing.

Sergio Schwartzman, MD: Was fibromyalgia ever considered as a diagnosis?

Tiffany Westrich-Robertson: The first rheumatologist did the classic fibromyalgia test and said I didn’t meet the criteria because I wasn’t feeling the pain points. So that was never considered for me.

Sergio Schwartzman, MD: It’s interesting. There was a Finnish study that looked at people with seronegative rheumatoid arthritis and followed them over time to see how many actually ended up developing classic rheumatoid arthritis or stayed in that category. If you look at the results over time, most of those patients do not remain in the seronegative rheumatoid arthritis or rheumatoid arthritis category. It’s what I would say is not a good category at all right now.

Tiffany Westrich-Robertson: That’s really interesting that you say that because I have the opportunity to speak with thousands of patients around the world based on what I do professionally. There are a lot of patients who are truly confused what their diagnosis is. They do still say they have seronegative rheumatoid arthritis, that’s how a patient will say it. It’s interesting because earlier in the discussion, we mentioned how the doctors are not necessarily differentiating that. But patients still say that. They are realizing that’s probably not what they have. So there are a lot of patients still walking around today thinking they have seronegative rheumatoid arthritis. I would be willing to challenge that.

Sergio Schwartzman, MD: Thank you.

Transcript Edited for Clarity