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AS – Lesson 4 – Talking about ankylosing spondylitis treatments

Lesson 4 of JointHealthTM Education – Ankylosing Spondylitis looks closely at the treatment discussion you will have with your rheumatologist.

In lesson 3, you learned that having treatment goals and an overall treatment plan is very important to doing well with AS. Knowing which treatments are available and may be best for you takes an open discussion with your rheumatologist on the benefits and risks of each one. Most rheumatologists treat up to 1,000 unique patients in their clinics each year, making them highly skilled and experienced at prescribing and monitoring whether your treatments are working as well as they should and keeping a close eye on your safe use of them.

At the end of this lesson, you should understand what evidence-based treatments are, know which types of treatments are available to control your AS, be aware of the importance of sticking with your treatment plan, and know how and what to monitor in between your appointments with your rheumatologist.

Please read each section of this lesson carefully, and then when you are ready, take the Lesson 4 Quiz to test your new knowledge. The quiz is an interactive and printable PDF. 

Evidence-based ankylosing spondylitis treatments

  • Research done by leading, independent scientists in rheumatology make up a body of “evidence” that guides patients and their rheumatologists in considering and choosing treatments. Evidence-based treatments are those ethically researched through clinical trials or health research studies involving large numbers of patients with AS. In the case of medications, if the research findings indicate they are safe and effective in clinical trials, they are then approved for use in large populations of patients. Similar types of studies are also conducted on non-medication types of treatment, such as physiotherapy or occupational therapy, and counselling.
  • Ankylosing spondylitis medication treatments come in two main categories: a category of medications that help control symptoms and a category that helps control the disease and prevent permanent damage to the joints and complications of AS. You may need both in the early stages of your disease to get maximum control over your AS or run the risk of joint damage.
  • Medications to treat only symptoms include:
    • non-steroidal anti-inflammatories or “NSAIDs” (example: over the counter ibuprofen, naproxen)
    • COX-2 inhibitors, such as celecoxib (Celebrex®)
    • pain relievers, like acetaminophen (example: Tylenol®)
    • glucocorticoids or steroids (example: methylprednisolone)
    • opioids (example: codeine)
  • Medications to treat the underlying disease and symptoms of AS include disease modifying anti-rheumatic drugs (DMARDs):
    • csDMARDs: Conventional synthetic DMARDs include traditional medications such as methotrexate, sulfasalazine, and leflunomide
    • biologic response modifier:
      • adalimumab (Humira, Amgevita, Hadlima, Hulio, Hyrimoz, Idacio), certolizumab pegol, etanercept (Enbrel, Brenzys, Erelzi), golimumab, infliximab (Remicade, Avsola, Inflectra, Renflexis), or secukinumab
    • biologic response modifier are considered an “advanced therapy”. To learn more about advanced therapies and the process of transitioning to this type of medication, take the JointHealthTM Education course: Advanced Therapies
  • Non-medication treatments are important, too. They may include an exercise prescription, physiotherapy, occupational therapy, and counselling, among others. These therapy types are all well researched and patients with AS report that they are instrumental in helping them gain back their quality of life, physically and emotionally. Smoking cessation and maintaining a healthy diet and weight are also important for managing ankylosing spondylitis, as well as other types of arthritis.
  • For treatment of AS, exercise and physical therapy is particularly important to maintain joint function, a range of motion, flexibility, and good posture.

Making treatment choices with your rheumatologist

  • Research shows that when patients with AS agree with their rheumatologist on their diagnosis and treatment prescription, they actually do better on the treatment. Finding agreement on and having confidence in your treatment plan increases your willingness to follow (also called “adherence”) the treatment plan, and as a result, get better.
  • A very important research finding is that patients with AS define treatment success as no longer being in pain and seeing improvement in their quality of life. Rheumatologists think success is getting your disease into remission or at least low disease activity. They are one and the same, really. The treatment goals of disease remission or the lowest disease activity possible results in less or no pain and big improvements in quality of life.

  • Although treatment will vary based on the severity of arthritis you have and the joints affected, rheumatologists generally follow treatment guidelines supported by ethical research over the past 50 years. The latest American College of Rheumatology AS Guidelines recommend the following approach for patients starting medication treatment:

    Step 1: A person newly diagnosed with AS may be initially given non-steroidal anti- inflammatory drugs (NSAIDs) such as ibuprofen (Motrin or Advil), naproxen (Aleve).

    Step 2: If the arthritis does not respond to NSAIDs, the patient may or may not be prescribed one or multiple conventional synthetic disease modifying anti-rheumatic drugs (DMARDs). These include sulfasalazine, methotrexate, cyclosporine and leflunomide. If the main axial disease and NSAIDs do not work, you may be asked to go straight to a biologic.

    Step 3: If the arthritis does not respond or does not respond well enough to the above combination therapy (i.e., their inflammation is not well controlled), a biologic DMARD should be started and is taken by infusion or injection. There are different DMARDs that can treat AS. With your order, you will determine which is best for you. Certain biologics may not be suitable if you have inflammatory bowel disease or iritis. If the biologic you are on is not working well enough, you may try a different one.

  • New clinical guidelines also include a strong recommendation for treatment with physical therapy for AS patients

  • The first 3 months of medication therapy monitoring are important for both you and your rheumatologist. Starting your medication treatment as early as possible after diagnosis (the “window of opportunity”), increasing the doses quickly if required, adding additional therapy, etc.

  • The fear of side effects sometimes keeps patients with AS from taking their medication as prescribed, or at all. Concern over side effects is understandable, but the most important things to know about side effects are these:

    • Untreated or undertreated AS poses a greater threat to you, your joints and your long term health and well-being than most medication side effects

    • The most common side effects of AS medications are the least serious, and the most serious side effects occur very rarely

    • Most side effects from AS medications can be managed by temporarily stopping it, or decreasing the dose and slowly increasing it again to the appropriate dose strength

Sticking with your ankylosing spondylitis treatments

  • Until scientists find a way to permanently “shut off” the inflammatory response that keeps AS active in your body, sticking with the medication and non- medication treatments that make up your treatment plan is very important to maintaining disease control and your quality of life.

  • In a recent global survey, over a third of patients with inflammatory arthritis report that they were not taking their medication exactly as prescribed. The most common reasons given for not taking their medication as prescribed were side effects and inconvenience, followed by the way the medication was taken or given and how frequently it needed to be taken.

  • Understanding the side effect profile of your medication(s) is important but should not cause you to fear taking it.

Monitoring the effectiveness of your treatments and treatment plan

  • You play an important role in monitoring the effectiveness of your treatments and progress against your treatment plan. You live with your disease every moment of every day, and the improvements or worsening of your symptoms can best be judged by you.

  • As part of your treatment plan, keep a journal that records symptoms and important quality of life measures such as your sleep patterns, ability to do daily tasks, attend work regularly, participate in leisure activities and sport, and other things that you feel are important measures of how well (or not) you are doing. The benefits of keeping a disease journal are well documented by research.

  • You will probably be asked to go to a lab for regular blood tests, monthly to begin with and then every two or three months as directed by your rheumatologist. Many patients with AS ask for copies of their lab tests so that they can include the results in their journal. Although blood tests cannot tell you if your AS is improving, they can assure you that the medications are not negatively affecting you in any way. This can motivate you to continue following your treatment plan.

  • Another helpful strategy for monitoring the effectiveness of your treatment is to ask those who live with you or see you every day what they notice about your symptoms. Sometimes, those around us are able to notice disease patterns that we don’t see ourselves.

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Arthritis Consumer Experts
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ACE thanks Arthritis Research Canada (ARC) for its scientific review of ACE and JointHealthTM information and programs.

ACE thanks Arthritis Research Canada (ARC) for its scientific review of ACE and JointHealthTM information and programs.