Many people in the early stages of non-radiographic axial spondyloarthritis (nr-axSpA) think they have common back pain and do not see a doctor. However, nr-axSpA can be differentiated from common back pain based on when the pain occurs, how long it lasts and what age it begins. Read what is nr-axSpA? for more information on the symptoms of nr-axSpA.
It is important to have nr-axSpA diagnosed as early as possible to allow for effective treatment. A general practitioner (GP) will make an initial assessment and if they suspect you have nr-axSpA refer you to a rheumatologist for further assessment and diagnosis.
What to expect at a GP appointment
You will need a referral from your GP to see a rheumatologist. It is important to describe your symptoms in as much detail as possible, so your GP can properly assess you. Your GP may ask you about:
- How old you were when you first noticed symptoms
- How long you have had the symptoms for
- If your symptoms are worse in the morning and improve throughout the day
- If you have a family history or relatives with axial spondyloarthritis (axSpA)
- If you have any other symptoms that could indicate you have nr-axSpA, such as pain and inflammation in other areas of your body.
What to expect at a rheumatologist appointment
A rheumatologist will diagnose nr-axSpA based on an assessment of your symptoms, a physical examination, blood tests and imaging tests such as x-ray and MRI.
In people with nr-axSpA damage to the sacroiliac joints (SI) will not show up on an x-ray. However, Inflammation of the SI joints can be detected by an magnetic resonance imaging (MRI) scan. A number of other tests will help with diagnosis. These tests include:
- Blood tests that measure the level of inflammation in the body, such a C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). Your doctor may continue to do these tests over time to monitor disease activity.
- A blood test to check for the presence of a gene known as HLA-B27. nr-axSpA is less likely in a person with a negative HLA-B27 result (although it can occur).
- Imaging tests such as MRI to detect inflammation earlier than possible with x-ray.
How to prepare for your appointment
It is always helpful to prepare for your appointment to help get the most our of your time with your doctor. Here are a few suggestions to help prepare:
Track your symptoms even if you think is not related to nr-axSpA. Some other conditions, like uveitis and gastrointestinal conditions are related to nr-axSpA. People with nr-axSpA can have pain and inflammation in other parts of their body, so it is important to note where on your body you feel pain and/or stiffness and how long it lasts. Take note if the pain and
- stiffness improve throughout the day as you move around and feels worse when you are inactive or after sleeping. This can help your doctor determine whether your pain is inflammatory or because of an injury or strain.
- Note how long you have been experiencing symptoms (weeks, months or years) and if they came on suddenly or slowly over time.
- Write down any medications or supplements you take and whether they help make you feel better. Inflammatory arthritis conditions tend to improve after taking nonsteroidal anti-inflammatory medication (NSAIDs) such as ibuprofen.
- Write down any questions you want to ask your doctor about the types of tests you may need to have and what need to do to prepare for them.
- Ask your doctor about other types of health care professionals you may need to see to help manage your nr-axSpA, and whether these will be covered by Medicare or private health insurance.
- If you are diagnosed with nr-axSpA speak with doctor about your treatment plan, follow-up visits and ways to help self-manage your condition, like pain techniques and appropriate exercises.
Delayed or misdiagnosis
Getting a diagnosis as early as possible is important. However, reaching a diagnosis can take time and may not be as straightforward as you had hoped. Some of the reasons there is a delay to diagnosis include:
- Inflammatory low back can be confused with mechanical back pain. Low back pain due to the inflammation of the SI joints can be confused with mechanical back pain (pain that is caused by injury or strain). This confusion could delay you from making an appointment with a doctor which can delay a diagnosis.
- Varying awareness amongst physicians. Awareness of nr-axSpA varies among GPs and non-rheumatology health professionals. If a GP does not have experience with axSpA and they have a patient with low back pain they might think the pain is due to strain or injury, rather than inflammatory pain.
- Misconception that men a more affected than women. Although men and women can equally develop nr-axSpA, studies indicate that women take longer to be diagnosed with any form of axSpA than men. This could be due, in part, to a misconception that the condition affects more men than it does women.
- Varying symptoms People with nr-axSpA are more likely to develop other conditions like uveitis (inflammation of the eye) or inflammatory bowel disease (IBD). If you see a specialist to treat one or more of these conditions, they may not suspect you have nr-axSpA because they are not aware of the signs of inflammatory arthritis.
The earlier you receive the correct diagnosis the sooner you will receive appropriate treatment to help manage your nr-axSpA. Here are some suggestions that might help you to receive a timelier diagnosis:
- Don’t let your symptoms be ignored. If you feel that you are not being listened to by your doctor or that you have been misdiagnosed with a condition that doesn’t match your symptoms, look for another doctor who will refer you to a rheumatologist. It can be frustrating searching for the right doctor but reaching a diagnosis means you can start appropriate treatment sooner.
- Keep a diary of your symptoms. Tracking your symptoms is a good way to show your doctor the pattern of your symptoms.
- See your doctor when you are having a flare. Having your doctor visibly see any swelling and inflammation can help them have a better understanding of your symptoms.
- Don’t assume you don’t have arthritis because of your age. People often mistake arthritis as an ‘old’ person’s disease. However, arthritis can affect anyone at any age. In fact, axSpA is more common in young people with the average onset of the disease of people under 30 years of age.
- Try to determine if you have a family history. Many types of inflammatory arthritis have genetic links. Understanding whether you have a family history or not can help contribute to a diagnosis.