Atypical Symptoms of Ankylosing Spondylitis in Young Adults

I am not sure if it is truly ankylosing spondylitis?

Hello Doctor, my son is currently 19 years old and has been diagnosed with ankylosing spondylitis at Chang Gung Memorial Hospital for over two years.
Initially, he only experienced pain in the sacroiliac joint in his buttocks, but recently he has started to feel pain in his lower back when leaning backward (there is no pain when bending forward).
However, neither the pain in the sacroiliac joint nor the lower back pain when leaning back is accompanied by morning stiffness, nor does he experience increased pain upon waking up or relief after daytime activities.
When he was first diagnosed at the hospital, he underwent an MRI (the report is below), tested positive for HLA-B27, and had elevated CRP and ESR levels.
I would like to ask the doctor, since my son is 19 years old and has been diagnosed with ankylosing spondylitis for over two years, and considering that online resources state that ankylosing spondylitis typically presents with morning stiffness and relief of symptoms with daytime activity, could it be possible that my son does not actually have ankylosing spondylitis? Thank you, Doctor.
The MRI report is as follows: MRI of the bony pelvis without contrast enhancement shows: 1.
General bulging discs in L4/5 and L5/S1 with minimal indentation on the thecal sac; no significant spinal stenosis nor neural foraminal narrowing is seen.
2.
Patchy bone marrow edema in the left sacral ala and ilium, along the left sacroiliac joint, accompanied by subchondral sclerosis and erosive articular surface, more severe on the iliac side, consistent with chronic sacroiliitis; axial spondyloarthritis is highly suggested.
3.
Similar edema in the posteroinferior corner of the right SI joint is also seen.
IMP: Bilateral sacroiliitis, more severe on the left side, consistent with axial spondyloarthritis.

Hao, 50~59 year old female. Ask Date: 2022/07/28

Dr. Zeng Guosen reply Internal Medicine

The symptoms described by the user, such as experiencing pain in the lower back when leaning backward (but not when bending forward), are not typical of ankylosing spondylitis.
There is no morning stiffness, no increased pain upon waking, and no relief after daytime activities, which indeed differs from common symptoms.
However, the MRI shows bilateral sacroiliitis, HLA-B27 positivity, and elevated CRP and ESR levels, indicating typical findings.
This suggests a discrepancy between the symptoms and the examination results.
Lastly, it's important to assess the treatment response; if there is a poor response to anti-inflammatory and analgesic medications, one should consider the possibility of other underlying causes for the back pain.
Thank you for your question.

Reply Date: 2022/07/28

More Info

Understanding atypical symptoms of Ankylosing Spondylitis (AS) in young adults can be quite complex, especially when the presentation does not align with the classic symptoms often described in medical literature. Your son’s case, having been diagnosed with AS for over two years, presents an interesting scenario where he does not exhibit some of the hallmark symptoms typically associated with this condition, such as morning stiffness or pain relief with activity.

Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects the spine and the sacroiliac joints, which are located in the pelvis. The disease is characterized by chronic inflammation that can lead to pain and stiffness in the back and hips. In many cases, patients experience significant morning stiffness that improves with movement throughout the day. However, AS can manifest differently in different individuals, particularly in younger patients.

In your son’s case, the absence of morning stiffness and the lack of pain relief with activity could suggest a few possibilities. First, it is important to note that AS can present with atypical symptoms, especially in younger adults. Some patients may experience pain that is more constant and does not fluctuate with activity or rest. This can sometimes lead to confusion regarding the diagnosis, as the symptoms may not fit the traditional mold.

The MRI findings you provided indicate bilateral sacroiliitis, which is a key feature in diagnosing AS. The presence of bone marrow edema and erosive changes in the sacroiliac joints supports the diagnosis of axial spondyloarthritis, which includes AS. The HLA-B27 positivity further corroborates this diagnosis, as this genetic marker is commonly associated with AS.

Given that your son does not experience the typical symptoms, it is crucial to maintain open communication with his healthcare provider. It may be beneficial to consider a multidisciplinary approach that includes rheumatologists, physical therapists, and possibly pain management specialists. This team can help tailor a treatment plan that addresses his specific symptoms and improves his quality of life.

In terms of treatment, nonsteroidal anti-inflammatory drugs (NSAIDs) are often the first line of defense for managing pain and inflammation in AS. If these are not effective, biologic therapies such as TNF inhibitors or IL-17 inhibitors may be considered. These medications can significantly reduce inflammation and improve symptoms for many patients with AS.

Additionally, physical therapy plays a crucial role in managing AS. A physical therapist can design a personalized exercise program that focuses on maintaining flexibility and strength, which can help alleviate some of the discomfort associated with the condition. Regular exercise is essential for maintaining mobility and preventing stiffness, even if it does not lead to immediate symptom relief.

Lastly, it is important to monitor for any changes in symptoms or new developments. AS is a progressive condition, and symptoms can evolve over time. If your son begins to experience new symptoms or if his current symptoms worsen, it may warrant further evaluation and adjustment of his treatment plan.

In summary, while your son’s symptoms may not align with the classic presentation of Ankylosing Spondylitis, the MRI findings and laboratory results support the diagnosis. It is essential to work closely with his healthcare team to manage his symptoms effectively and to remain vigilant for any changes in his condition. With the right approach, many individuals with AS can lead active and fulfilling lives despite the challenges posed by the disease.

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