Ankylosing Spondylitis

What is Ankylosing Spondylitis?

Ankylosing Spondylitis is an arthritis affecting the spine. ‘Ankylosing’ is not exactly an ordinary every day word, but it rolls off the tongue once you get used to it 🙂

  • ‘Ankylosis’ means ‘bent or crooked’:
  • ‘Spondylitis’ means ‘inflamed spine’:
    • it comes from ‘spondylis’ meaning ‘spine,
  • and ‘itis’ which is latin for ‘inflammation’.

The name is quite literal in translation as with untreated long term disease, the spine can become bent and crooked.

Who gets Ankylosing Spondylitis (AS)?

Ankylosing Spondylitis affects more men than women. It is 2-3 times more common in men. It is usually diagnosed when people are in their thirties or forties, but can occur earlier, or later.

Why do people get Ankylosing Spondylitis?

We don’t know why some people get AS. Some people think there is a role that a bacteria ‘Klebsiella’ plays, but it is not clear how as antibiotics don’t help! There is a gene that is associated with AS called HLA-B27.

90-95% of people with AS have HLA – B 27, but the gene is really common in the general population. Only 5-6% of people with the gene actually get AS!!

We don’t know how it has a part to play and why so few people with the gene get AS.

How does Ankylosing Spondylitis make you feel?

AS usually affects the sacroiliac joints (the joints at the back of the pelvis) and the spine. Back pain and stiffness is the most common feature of AS. It is usually worse at night and first thing in the morning, getting better with activity.

75% people get pain in the lower back as their first symptom of AS.

Other common features are:

Pain that moves from one buttock to then the other People waking at night with stiffness and/or pain

AS can also affect other parts of the body, and people can be affected by things such as:

Sternal pain, also known as costochondritis
Heel pain due to Achilles tendonitis
Pain on the bottom of the feet due to plantar fasciitis
Swelling, pain and stiffness in other joints
How do we diagnose Ankylosing Spondylitis?

Ankylosing Spondylitis is a clinical diagnosis which is confirmed by radiological investigations. There are X-rays that can be done to investigate this, but often in the early stages of disease, there are no changes seen on radiological imaging.

Symptoms of inflammatory back pain are what draw attention to the possibility that a person might have Ankylosing Spondylitis.

Typical symptoms are:

Back pain that is worse at night, disturbs sleep and worse first thing in the morning, getting better with activity. Often the pain is in the buttocks. Pain that moves from one buttock to another is classical of AS.

To investigate, your doctor will likely do X-rays of the spine and sacroiliac joint, looking for bony changes of AS. If nothing is apparent on X-rays your doctor will likely do an MRI to look more closely at the joints, looking for soft tissue inflammation. MRI looks closely at soft tissue, whereas X-rays only look at the bones. Blood tests will also be done looking for HLA-B27, and evidence of inflammation such as elevated ESR and CRP which are markers of active inflammation. If its considered that medications are needed to treat your symptoms your doctor will likely order other blood tests as well.

How do we treat Ankylosing Spondylitis?

Treatment depends on how much the disease impacts you.

Mild disease may require intervention with:

Anti-inflammatories when needed
Lifestyle changes, including exercise and stretching

More severe and consistent disease may require:

Regular Anti-inflammatories
Lifestyle as above

Biologicals are the most recent development in the treatment of AS, but most people don’t need them, and importantly you need to have very severe disease before you are eligible to get these drugs on a PBS subsidy. Your Rheumatologist can let you know more about this. If there is involvement of any part of the body other than joints and the spine, it is important that you see the appropriate specialist as well as your Rheumatologist.

Speak to your Rheumatologist to tailor a treatment regime that is right for your disease.

Can diet make a difference for Ankylosing Spondylitis?

There is a lot of information on the internet about various diets these days, and its hard to know what to listen to. When it comes to food, as it is with drugs, we are all unique in the way that we respond and the way things impact us. We all know that we are affected by food and it makes sense to want to look at this when we are not well. If there is a possibility that we can take less drugs simply by changing the way that we eat and live, then that makes sense!

When considering food, the best proof is not what other people tell you SHOULD happen. The best proof is in the way that your body feels when you make changes.

In terms of food specifics for AS:

A low starch diet has been found to make a significant difference in people with AS, reducing inflammation markers and pain and stiffness in the majority of people. (results published in Clinical Rheumatology in 1996). In my practice I have also found it replicated that a low starch diet is a big support for many of my patients. Not everyone responds, in the same way that not everybody responds to the same drugs.

As with all things it is a personal choice to decide to explore the impact of food and drink.

Given the positive results and the long lasting nature of AS, it makes sense to explore if there is a possibility that a way of living and eating can decrease the need for medications as well as improve symptoms. It is of course, always a personal choice.

In the experience in my practice, some people report to me that eliminating gluten has made a big difference for them and the same with eliminating processed sugars. There may be other things that you read on the internet that you may wish to try.

You may find it supportive to get assistance from someone who is skilled in the area of food and nutrition to guide you as to how to make changes. When we have eaten one way for a long time, it can be challenging to know what and how to eat when we are making changes.

I would suggest that the biggest proof for you in relationship to food is how your body feels. If it makes a difference, that is fantastic, if it doesn’t make an impact after a few months, then it doesn’t make sense to continue.

Whats the long term outlook with Ankylosing Spondylitis?

The outcome is different for each person and we can’t predict what is going to happen to each person.

Most people with AS have mild with symptoms or flares that can be well controlled when they occur.

It is only a small proportion of people who develop severe spinal problems.

What we do know is that there are good treatments these days for severe disease with the biological agents which have made a huge difference in the lives of many people with serious disease. We don’t yet know what the long term outcome is taking these medications as they haven’t been around for long enough yet..

The disease in AS can remain localised to the spine, or it can spread to involve other parts of the body such as:

Joints in the limbs
Eyes – causing Iritis
Gut – causing Colitis
Heart –  causing valve disorders
Lungs – causing fibrosis.

Most people with AS have mild symptoms that are well controlled, often with periods where there are no symptoms. It is not common for disease to involve other parts of the body as listed above.

If you have disease which involves the hip, other organs or other joints then your disease is more serious and the outlook long term is more serious.

Cigarette smoking has been found to increase the chance of having more serious disease.

Take Home messages for Ankylosing Spondylitis

It is important to see a Rheumatologist if you are concerned you might have AS. Investigation and conversation and support regarding treatments and following your progress are very important.

There are good treatments for AS with the biological agents, so keeping an eye on AS to get access to these treatments as soon as possible can make a big difference.

Your Rheumatologist is the best person for you to speak with about how to take care of your body with exercise, diet, and medications and is the central person in your care plan: part of an overall team which will include your GP, and other people who can support you in other aspects of your care.

Further Resources

The above is a short synopsis to help you to understand AS. If you would like to read more about it, these resources may interest you.