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When your treatment isn’t working


By Patrick Doherty, MD, as told to Kara Mayer Robinson

Ankylosing spondylitis (AS) is a condition that has a great impact on the spine. It literally means stiffness of the spine. You may have pain associated with stiffness, often in the sacroiliac joints, which are the joints between the spine and the pelvic bone.

AS usually progresses slowly, and symptom control is the main goal of treatment. Ideally, you should maintain your mobility and reasonably manage your pain control over time.

Your doctor may choose different treatments based on your pain, range of motion, and side effects. Over time, your first-line treatment may stop working. If so, your doctor will look into other treatment options.

First step: exercise

The general strategy I use to help my patients manage AS is to treat the symptoms to help with mobility and minimize pain.

The first treatment is usually exercise, which helps with stiffness. While you can’t directly relieve joint stiffness, keeping the surrounding muscles toned, stretched, and strong can improve your flexibility.

I encourage my AS patients to move, exercise, stretch, and consider yoga for flexibility and mobility.

This may involve a physical therapy program. A physical therapist can use muscle massage, traction, strengthening, and posture awareness to help you improve your flexibility and range of motion.

Activities like yoga are exceptionally helpful in maintaining strength and flexibility at the same time. You can increase your activities as long as you continue to strengthen and stabilize without causing pain or damage. You should avoid painful activities, but no specific activity is prohibited as long as you can do it without causing pain.

Obviously this is a process and it is best to start with any fitness or stretching program. If done safely, keeping your muscles strong can be the key to preventing injury, improving your range of motion, and helping to manage pain.

first line drugs

If you have advanced pain, your doctor may recommend anti-inflammatory medications such as ibuprofen and naproxen, which are often the first line of treatment.

These first-line agents are often quite effective in reducing pain and allowing for better mobility. Anti-inflammatories do not change the nature of the disease, but they do help with range of motion and activity.

Generally speaking, anti-inflammatories have minimal side effects. Minor side effects include abdominal pain, diarrhea, dizziness, headaches, indigestion, and drowsiness. Side effects that are more serious can include: heart damage, kidney damage, and stomach ulcers. But the risk of serious side effects is low, usually below 2%.

When treatment fails

Over time, it is common for first-line treatments to fail. At that time, your doctor will consider other options.

Signs that your treatment is not working include:

  • Decreased pain control
  • intolerable side effects
  • worsening stiffness

At this point, your doctor will want to know about your symptoms.

Your doctor may ask you questions like:

  • Is pain the biggest problem?
  • Is range of motion more important?
  • Are side effects preventing you from continuing with your treatment?

Your answers will help your doctor choose what to test next. Your doctor will also consider what he has seen in his own experience, such as what similar patients have tried in the past and how effective the treatments were.

Next steps

When your first-line treatment fails, your doctor may recommend treatments including:

  • Disease Modifying Antirheumatic Drugs (DMARDs)
  • corticosteroids
  • biological agents

DMARDS

Disease-modifying antirheumatic drugs help treat the symptoms of rheumatoid arthritis, including ankylosing spondylitis, and also help change the course of the disease. Examples of DMARDs are hydroxychloroquine and methotrexate.

DMARDs delay the progression of AD by preventing inflammatory reactions. They help prevent joint damage and can help preserve the structure and function of your joints.

As with any medication, you may develop a tolerance to these medications, and their effectiveness in treating pain and preserving function may decrease over time.

corticosteroids

Corticosteroids are drugs that are also considered DMARDs. They help reduce inflammation. They also help preserve the function of your joints by reducing the rate of damage to your joints.

biological products

If your first-line treatments don’t work, your doctor may consider trying biologics.

Biological agents target specific molecules on the cells of your immune system. They work in your joints and on specific receptors to slow the progression of AS. There are different types of biological agents that target different things.

Biologics used to treat AD include:

  • Abatacept
  • Adalimumab
  • Anakinra
  • baricitinib
  • Certolizumab pegol
  • etanercept
  • Filgotinib
  • Golimumab
  • infliximab
  • Rituximab
  • sarilumab
  • tocilizumab
  • tofacitinib
  • Upadacitinib

All of these are injected, usually under the skin.

Biologics are becoming more popular because they are becoming more effective and the side effects associated with them are improving substantially.

They are often added to other treatments and have specific goals with ankylosing spondylitis.

Work with your doctor

Everyone is different and it can take weeks or months to find the right treatment. Over time, your treatment may need to be adjusted or changed based on its effectiveness, side effects, cost, and insurance coverage.

The main point to remember when it comes to your ankylosing spondylitis treatment options is that there should be an ongoing conversation with your doctor. This helps make sure that over time your treatment remains effective, side effects are monitored, and interactions are evaluated.

As time passes, it’s not unusual to change treatments for a variety of reasons. It’s normal to feel frustrated, but understanding this can help you manage your frustration.

Remember that the ideal treatment is the one that is right for you, with the support of your family, friends and health care team. For the best outcome, be involved in your care, try to keep communication open, stay active, and have realistic goals.



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