A diagnosis of ankylosing spondylitis (AS) can be overwhelming, stressful, and scary. Following a diagnosis, your healthcare professional will start you off with treatments to help slow it down and provide relief to pain and stiffness.
Here’s what you can expect as you navigate treatment.
It’s very likely that you’ve already met with a rheumatologist. These specialists work with people with joint, muscle, tendon, ligament, and bone issues and often provide your initial diagnosis of ankylosing spondylitis.
They’re the ones who will provide you with a majority of your medical treatment, like medications, and answer questions you may have about the condition in general or your treatment.
They’ll also likely refer you to a physical therapist.
Experts
They can also help you:
- find the best sleeping positions
- improve your posture
- reduce pain
- strengthen back and neck muscles as well as your core
They may be a good resource to ask questions about lifestyle changes, like diet, exercise, and use of supportive devices.
Occupational therapist
Along with physical therapy, you may find working with an occupational therapist plays an important role in helping to improve your mobility. These specialists help you to maintain or gain everyday life functions.
They can help teach you new ways to do everyday tasks to help protect your joints and conserve your energy.
Living with ankylosing spondylitis can cause a lot of stress, worry, and a mix of emotions. As you navigate care, you should make sure not to neglect your mental health care.
Adding a mental health professional, such as a counselor, social worker, or psychologist, to your treatment team may help. If you don’t know where to start, you can ask your rheumatologist for recommendations.
In some cases, you may also feel like you need additional support for anxiety, depression, or other mental health issues that may occur. You may want to consider seeing a psychiatrist to help you manage your mental health. They can help provide and coordinate medications to help address depression and anxiety.
Ankylosing spondylitis can affect several aspects of your health. Your primary care doctor or rheumatologist may refer you to specialists to help address specific concerns that are outside of their area of expertise.
Some specialists that may end up being part of your care team include:
- Educational nurses can help teach you more about your condition, provide tips and suggestions on self-care, and other services as needed.
- Dermatologists may be needed if you develop any kind of skin involvement.
- Gastroenterologists may be needed to address concerns involving your digestive tract.
- Ophthalmologists can help with inflammation of the eyes and other vision-related concerns.
As you add more specialists to your care team, a primary care doctor can help coordinate care between everyone. They may also serve as a point of referral as new symptoms or issues present.
When you first get diagnosed, a rheumatologist will likely start you out with more conservative or over-the-counter medical treatments that include pain relievers, like acetaminophen (Tylenol), and nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen.
If these don’t work to control your symptoms, they may recommend stronger, prescription medications.
There are two main types of prescription medications a rheumatologist may recommend.
The first is disease-modifying anti-rheumatic drugs (DMARDs). These help reduce overall inflammation throughout the body, but they may not work as well on spinal joint pain and stiffness. Your doctor may prescribe them if the joints in your arms or legs get involved.
The second medication class is known as biologics. These are made from living organisms. These medications help prevent inflammation when other medications don’t work. They can better target parts of the immune system responsible for your symptoms compared to older DMARDs. Some examples include:
- certolizumab pegol
- etanercept
- adalimumab
- golimumab
Steroids are a good choice for helping with immediate flare-ups of symptoms. You may receive an injection into your joint for fast relief, or it may get injected into your muscles for a slower release.
In some cases, your doctor may prescribe oral steroids. These are generally only used for a short period of time due to the risk of side effects.
If inflammation is in your eyes, your doctor may prescribe steroid eye drops. These deliver anti-inflammatory effects directly to the eyes.
When taking steroid tablets or other oral forms, you should let your doctor know if you experience side effects, such as:
- changes in mood
- weight gain and increased appetite
- issues sleeping
- stretch marks
- stomach pains, indigestion, or heartburn
- easy bruising
- thinning of the skin
Surgery is not the first line of therapy, and most people with ankylosing spondylitis won’t need it.
If you’re concerned about mobility or experiencing high levels of pain, you should consider talking with your rheumatologist about your concerns. They may recommend bringing in a new team member to the treatment team called an orthopedic surgeon, which is a doctor who specializes in bone surgery.
A lot of considerations go into deciding whether or not surgery is a good option for you. Some considerations include:
- your overall health
- whether benefits outweigh risks
- type of surgery recommended, such as total replacement or repair of your joints
A big part of your treatment will involve self-care and managing your lifestyle. Certain changes and steps can help to improve your physical, mental, and emotional well-being.
Some steps you can take at home include:
- getting regular exercise
- eating a nutritious diet that focuses on vegetables, fruits, whole grains, lean protein, and healthy fats
- maintaining a moderate weight
- avoiding or quitting smoking
- using supportive devices as recommended (a physical therapist or occupational therapist can provide you with instructions and recommendations)
- monitoring your symptoms and let your care team know if something changes (a primary care doctor or rheumatologist would be a good starting point)
- taking steps to manage your posture (talk with a physical therapist or occupational therapist for tips)
- learning ways to manage stress and mental health (members of the mental health care team can help with this)