The Top 16 Myths About Ankylosing Spondylitis Treatment
Medically reviewed by Leigh Ann Anderson, PharmD. Last updated on April 3, 2022.
1. Myth or Fact? Ankylosing Spondylitis (AS) Only Affects the Back
This is a big myth. Ankylosing Spondylitis (AS) is a form of inflammatory, painful arthritis that mainly affects the lower back and spinal joints (vertebrae). However, other joints such as the knee, shoulders, hips, ribs, heels and small joints of the hands and feet can be involved, too.
Even the eyes can be affected with a condition known as uveitis, and rarely, the lungs and heart, too.
- The word spondylitis refers to inflammation of the spine; ankylosis means fusion of two bones into one.
- The joints between the vertebrae, and the joints between the spine and the pelvis eventually grow together (fuse).
- This can limit movement and cause severe pain.
People with severe AS may stoop over due to the fixed position of the spine - this is termed kyphosis.
2. Myth or Fact? Ankylosing Spondylitis Only Affects the Elderly
This is also a myth. Ankylosing Spondylitis (AS) is uncommon and rarely begins after the age of 45.
- It occurs most frequently in white males 20 to 40 years old, although it can occur in children, too.
- Even though ankylosing spondylitis is a type of arthritis, it only affects about 1 in 1000 people.
The exact cause of AS is not known, but there does appear to be a genetic link as it does run in families. About 90% of people with AS also have a gene that produces a "genetic marker" - a protein called HLA-B27. However, having the gene doesn’t mean you will absolutely get AS - fewer than 5% of people with HLA-B27 get AS.
3. Myth or Fact? Ankylosing Spondylitis is Easily Curable
This is a myth, too. There is not a cure for Ankylosing Spondylitis (AS); however, there are FDA-approved medications that can reduce AS symptoms and help to manage the pain.
- AS is characterized by acute, painful relapses of back pain followed by periods of remission where symptoms subside.
- In some patients, pain may occur elsewhere - for example in the shoulders, hips, ribs, and small joints of the hands and feet.
- Pain may be worse in the morning and decrease during the day and with exercise.
AS is an autoimmune disorder, which is an illness that occurs when the immune system wrongly attacks tissues in the body. NSAIDs are helpful for pain and studies show TNF blockers can slow or halt AS disease progression.
Secukinumab (Consentyx), the first in a new class of medicines called interleukin-17A (IL-17A) inhibitors was FDA approved in 2016 to treat AS. Consentyx significantly reduces signs and symptoms of AS and increases overall mobility.
4. Myth or Fact? Diagnosis of Ankylosing Spondylitis Requires Many Tests
Not really, this is a myth. Usually the diagnosis is fairly straightforward. A rheumatologist, a specialized arthritis doctor, will usually make the initial diagnosis.
An X-ray or MRI can show if there is inflammation of the sacroiliac joints (the sacroiliac joints link your pelvis and lower spine). The doctor may also run a blood test for the presence of genetic markers, and symptoms and history help to make the diagnosis. They also look for:
- Evidence of low back pain and stiffness for a period of 3 months, which improves with exercise, but is not relieved by rest.
- Limits of lumbar spine motion while bending
- Limits of chest expansion when breathing.
5. Myth or Fact? Drugs Are the Only Way to Treat Ankylosing Spondylitis
This statement is a myth.
While medications are one component, they aren't used alone. The goals of treatment with AS are fourfold:
- Lessen joint pain and stiffness
- Slow disease progression
- Prevent joint deformity, such as kyphosis
- Maintain posture and daily work and life function
Joining an ankylosing spondylitis support group may provide benefits, as well, like discussion among your peers and keeping up with the latest news. However, support or chat groups should never replace the advice of your physician.
6. Myth or Fact? People with Ankylosing Spondylitis Should Avoid Exercise
Absolutely not, another myth. A defined plan of physical therapy and individualized exercise is important for everyone with AS.
Back stiffness, especially in the morning, is one feature of AS that often improves with activity. People who have this disorder may get worse if they do not exercise regularly. The physician may send the patient to the physical therapist who can develop a plan of stretching, deep breathing and range-of-motion exercises. Hydrotherapy (pools, whirlpool spas, hot tubs, and physiotherapy tanks) may be used as well.
Physical therapy can help to keep the back flexible, prevent stooping, make daily activities easier, and lower the chances of severe pain or further injury.
7. Myth or Fact? Drug Treatment for Ankylosing Spondylitis is Always Expensive
This is a myth, too. In fact, initial drug treatment can be quite affordable.
Drug treatment with anti-inflammatory NSAIDs or analgesics are usually the first drugs used for ankylosing spondylitis treatment. Treatment might include one of these medications:
- ibuprofen (Advil)
- naproxen (Aleve)
- diclofenac (Cataflam)
- celecoxib (Celebrex)
- acetaminophen (Tylenol)
However, NSAIDs can be associated with serious side effects such as stomach bleeding, heart attack, and stroke - patients should discuss these side effects with their doctor, especially with long-term, chronic use of NSAIDs.
8. Myth or Fact? Ankylosing Spondylitis Leads to Severe Disability
Myth. Not everyone with ankylosing spondylitis has severe disease or physical disability - the disease course is variable and differs greatly among patients.
It is not a life-threatening disease and many people are able to work and function normally throughout their day. In most cases, AS is characterized by painful episodes followed by remissions, a time where the pain subsides.
Studies have shown that patients who have disease onset at an older age may be more prone to severe joint damage. In addition, smokers were more than four times as likely to have severe damage as nonsmokers.
For severe ankylosing spondylitis or other joint problems, surgery or joint replacement may rarely be required.
9. Myth or Fact? There is Little I Can Do to Help Myself
This statement could not be further from the truth.
Patients who are able to engage in an active lifestyle, maintain a regular exercise program and body weight, refrain from smoking, and keep up with clinic appointments and treatments will have a better outcome. A firm mattress may help to decrease morning stiffness. Some patients like to exercise in a pool or swim for exercise as it is easier on the joints.
Studies have shown a diet high in omega-3 fatty acids (found in cold water or oily fish like salmon, flax seeds, and walnuts) can reduce joint inflammation in rheumatoid arthritis patients, and there is some evidence it might be helpful in ankylosing spondylitis, as well.
10. Myth or Fact? If NSAIDs Don't Work, I'm Out of Options
Definitely not true. The biologics, or tumor necrosis factor (TNF)-alpha inhibitors (TNF blockers), can play a key role in those who do not respond to NSAIDs. TNF blockers can lead to less back pain, stiffness, and inflammation; they may also slow progression of AS. TNF blockers may be used in conjunction with NSAIDs for symptom control.
FDA-approved biologics for ankylosing spondylitis include:
Humira (adalimumab) and its biosimilars: Amjevita (adalimumab-atto), Cyltezo (adalimumab-adbm), Hyrimoz, (adalimumab-adaz), Hadlima (adalimumab-bwwd), Hulio (adalimumab-fkjp), Abrilada (adalimumab-afzb) and Yusimry (adalimumab-aqvh)
These agents are administered in the clinic or given by self-injection at home. Some patients with AS may see results as soon as 2 weeks, but for others it may take several months.
In an evidence-based Cochrane Review colleagues concluded that there is moderate to high quality evidence that anti-TNF agents improve clinical symptoms in the treatment of ankylosing spondylitis.
11. Myth or Fact? TNF Blocker Side Effects Are Very Dangerous
Not always. But you should educate yourself.
As with most medicines, TNF blockers have some serious side effects. However, most of the very serious side effects are also very rare. An increased frequency of infections, including tuberculosis (TB) or fungal infections, may occur. Prior to beginning treatment with TNF blockers, a TB test is given to rule out an active infection.
Also, a very rare side effect is the increased frequency of certain cancers, for example:
- leukemia (blood cancer)
- lymphoma (lymphatic system cancer)
- non-melanoma skin cancers (like basal cell and squamous cell).
Some agents have also been linked with a severe allergic reactions (facial swelling, difficult breathing, low blood pressure).
12. Myth or Fact? TNF Blockers Are All the Same
Wrong. All TNF blockers target an inflammation-causing substance called TNF, but there are some differences, too.
- Humira, Amjevita, Cyltezo, Enbrel, Erelzi, Cimzia, Simponi and Simponi Aria, Yusimry and Hyrimoz are all given as a self-administered subcutaneous (under the skin) injection.
- Remicade, Inflectra and Ixifi are given by intravenous infusion and may require a clinic visit every 6 weeks for maintenance treatments.
Costs can vary, too. Be sure to check with your insurance carrier for their covered TNF blockers (those that are on their formulary), which will save you money. Ask about the use of a specialty pharmacy, if needed. If you do not have insurance, call the manufacturer to inquire about patient assistance or CoPay card programs.
Remember, many patients experience significant improvements in their ankylosing spondylitis using a TNF blocker, no matter which one they use.
13. Myth or Fact? TNF Blocker Injections Rarely Cause Skin Reactions
Definitely a myth. In fact, the most common side effect seen with the TNF blockers are injection site reactions on the skin.
- A localized rash, burning, or itching may occur and can last up to one week.
- Roughly 10% to 20% of patients (10 to 20 out of 100 people) might experience injection site reactions, which are usually described as mild. However, if the reaction still persists after one week, contact your doctor to discuss.
In addition, patients using TNF blockers should consult with their health care provider before receiving any "live" vaccine (for example: FluMist or BCG vaccine) as TNF blockers may make the vaccine less effective.
14. Myth or Fact? TNF Blockers Can't Help Slow Damage in AS
Whether TNF blockers can slow disease progression in AS has been a controversial question, mainly because longer-term studies are needed.
A study by Haroon and colleagues found that TNF blockers can reduce progression of spinal damage as seen on an X-ray by up to 50%. Researchers state that treatment needs to be started early and continued long-term.
- In the study, a benefit was seen at 4 years. Compared to patients who started treatment earlier, those who waited 10 or more years to begin TNF blockers were twice as likely to progress.
- In this study, NSAID use did not have a significant effect on progression; but patients may still need to use NSAIDs for 'rescue' pain control.
A large structured review of 23 studies, published in 2020, suggests that TNF inhibitors were able to slow down radiographic progression of disease in the spine.
- Patients were assessed using the modified Stoke Ankylosing Spondylitis Spine Score (mSASSS). Researchers found that mSASSS progression in patients with AS was generally minimal and slow with long-term TNF blocker therapy.
- Also, several studies suggest patients were more likely to progress in their disease when not using a TNF inhibitor.
- The rate of progression following continuous secukinumab (Cosentyx), an interleukin inhibitor treatment, was low and remained stable over 4 years.
15. Myth or Fact? There is No Way I Can Afford TNF Blockers
Think about this: TNF blockers are some of the most expensive drugs on the market today. For example, Humira can run over $6000 per month if you are paying out-of-pocket, even with a coupon discount.
Biosimilars may be more affordable, but your doctor may need to write your prescription specifically for the biosimilar, as most TNF blockers cannot be substituted (interchanged) at the pharmacy level without the doctor's approval. Once exception is Cyltezo, which can be interchanged for Humira by your pharmacist automatically. Ask your pharmacist about other AS biologic treatments that can be switched to help save you money, if needed.
There may be other ways to help offset the cost:
- Each manufacturer has a patient assistance program in place, so check their websites or ask your doctor about patient assistance programs.
- If you have insurance, check with your plan to determine the preferred treatments and copays for ankylosing spondylitis.
- The manufacturer may also be able to assist you with these copay costs as well, if you qualify. Call them to learn more.
16. Myth or Fact? If TNF Blockers Don't Work, There Aren't Any Other Options
Wrong. This is a myth for sure. TNF blockers are effective for many patients with ankylosing spondylitis (AS), but there are still other options for patients who do not respond or cannot use or tolerate them.
- In 2016, the FDA approved Cosentyx (secukinumab) for AS, offering a totally new type of treatment option.
- In August 2019, the FDA also okayed Eli Lilly’s Taltz (ixekizumab) injection for the treatment of adults with active ankylosing spondylitis (AS).
- In December 2021, the FDA approved Xeljanz and Xeljanz XR (tofacitinib) to treat adults with ankylosing spondylitis when at least one TNF blocker medicine has been used and did not work well or cannot be tolerated.
Local injections of corticosteroids, such as methylprednisolone (Solu-Medrol), can be used intermittently if there is evidence of local joint swelling. Long-term, chronic use of oral (systemic) corticosteroids is discouraged due to serious side effects.
Sulfasalazine, an oral disease-modifying drug often used in rheumatoid arthritis, may be used in AS patients with symptoms in other areas besides just the spine. In general, opioid pain medications should be avoided due to side effects and concern for addiction.
Cosentyx: Expanding Treatment Options for Ankylosing Spondylitis
Secukinumab inhibits interleukin-17A (IL-17A), effectively blocking the release of chemicals by the immune system responsible for inflammation.
Fever, headache, muscle aches, sore throat, fatigue and a stuffy or runny nose are common side effects. Cosentyx also increases your risk of infection and patients treated with Cosentyx should not receive live vaccines.
Studies have shown that 61% of patients had an improvement of at least 20% in their ankylosing spondylitis symptoms after 16 weeks of Cosentyx treatment, with 36% experiencing over 40% improvement. Many of these patients had failed to respond to, or were intolerant of, biologics.
In June 2020, the FDA also approved Cosentyx to treat active non-radiographic axial spondyloarthritis (nr-axSpA). nr-axSpA is part of the axSpA spectrum, which is characterized by inflammatory arthritis of the spine associated with chronic inflammatory back pain, but may not show on X-ray studies.
Eli Lilly's Taltz Approved for Ankylosing Spondylitis
Like Cosentyx, Taltz is also classified as a humanized interleukin-17A antagonist. Taltz works to lower pain and swelling by inhibiting the release of pro-inflammatory cytokines and chemokines. It's also approved for the treatment of plaque psoriasis and psoriatic arthritis.
FDA approval was based on Phase 3 studies in 657 adults. At 16 weeks, patients achieved ASAS40 (improvement by at least 40 % in various signs and symptoms of AS) at the following significant response rates:
- COAST-V study (biologic DMARD-naïve group): 48% of patients treated with Taltz every 4 weeks versus 18% of patients treated with placebo.
- COAST-W study (inadequate response or intolerant to TNF inhibitors group): 25% of patients treated with Taltz every 4 weeks versus 13% of patients treated with placebo.
The safety profile observed in patients with AS treated with Taltz was consistent with the safety profile in patients with psoriasis. The most common side effects of Taltz include:
- Injection site reactions
- Upper respiratory infections
- Fungal infections
FDA Approves Pfizer’s Xeljanz (tofacitinib) for Ankylosing Spondylitis
In December 2021, the FDA cleared Pfizer's Xeljanz and Xeljanz XR to treat adults with active ankylosing spondylitis (AS) who have had an inadequate response or cannot tolerate one or more TNF blockers.
Xeljanz is classififed as a Janus kinase (JAK) inhibitor and comes as an oral tablet taken by mouth. The dose for adults with ankylosing spondylitis is Xeljanz 5 mg twice daily or Xeljanz XR 11 mg once daily. Dosage adjustments may be needed in patients with kidney or liver disease.
- In a Phase 3, placebo-controlled study, 269 adults with AS received Xeljanz 5 mg twice daily or a placebo.
- The primary endpoint was met at week 16: the percentage of patients achieving an Assessment in SpondyloArthritis International Society (ASAS) 20 response was significantly greater with tofacitinib (56.4%, n= 75) versus placebo (29.4%, n=40).
- In addition, the percentage of patients achieving an ASAS40 response was significantly greater with tofacitinib (40.6%, n=54) versus placebo (12.5%, n=17).
Xeljanz and Xeljanz XR carries a Boxed Warning for serious infections, mortality, malignancy, major adverse cardiovascular events (MACE) and thrombosis (clot formation). In AS studies, side effects were similar to that seen in rheumatoid arthritis (RA) and psoriatic arthritis (PsA) patients which includes: upper respiratory tract infection, nasopharyngitis (common cold), diarrhea, and headache
Finished: The Top 16 Myths About Ankylosing Spondylitis Treatment
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- Baraliakos X, Gensler LS, D'Angelo S, et al. Biologic therapy and spinal radiographic progression in patients with axial spondyloarthritis: A structured literature review. Ther Adv Musculoskelet Dis. 2020 Mar 4;12:1759720X20906040. doi: 10.1177/1759720X20906040
- Haroon N. et al. The Impact of Tumor Necrosis Factor α Inhibitors on Radiographic Progression in Ankylosing Spondylitis. Accessed March 12, 2022 at doi: 10.1002/art.38070
- Hyrimoz Product Insert. Sandoz Inc. Accessed Accessed Feb. 27, 2020 at https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/761071lbl.pdf
- Maxwell LJ, Zochling J, Boonen A, et al. TNF-alpha inhibitors for ankylosing spondylitis. Cochrane Database Syst Rev. 2015 Apr 18;(4):CD005468. Accessed March 12, 2022 at doi: 10.1002/14651858.CD005468.pub2
- Yu D, Sieper J, Romain P. Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). Up to Date. Accessed March 12, 2022 at https://www.uptodate.com/contents/axial-spondyloarthritis-including-ankylosing-spondylitis-beyond-the-basics
- National Institute of Arthritis and Musculoskeletal And Skin Diseases. Ankylosing Spondylitis. Accessed March 12, 2022 at https://www.niams.nih.gov/health-topics/ankylosing-spondylitis
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