1. Myth or Fact? Ankylosing Spondylitis (AS) Only Affects the Back
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. Even the eyes can be affected (uveitis), and rarely, the lungs and heart.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. Ankylosing Spondylitis Primarily Occurs in the Elderly
This is a myth. AS is uncommon and rarely begins after the age of 45. It occurs most frequently in white males 20-40 years old, although it can occur in children. 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 get AS – fewer than 5% of people with HLA-B27 get AS. Two new genes, IL23R and ERAP1, have recently been discovered and may also carry a genetic risk for AS.
3. Ankylosing Spondylitis is Easily Curable
Wrong. There is not a cure for 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 – 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. In 2016, secukinumab (Consentyx), the first in a new class of medicines called interleukin-17A (IL-17A) inhibitors was FDA approved to treat AS. Consentyx significantly reduces signs and symptoms of AS and increases overall mobility.
4. Diagnosis of Ankylosing Spondylitis Requires Many Tests
Not really. 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 joint. The doctor may also run a blood test for the presence of genetic markers, and symptoms and history help to make the diagnosis.
- 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. Drugs Are the Only Way to Treat Ankylosing Spondylitis
Wrong. 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/life function
Treatment for AS involves a multi-stepped approach: medication, exercise and/or physical therapy, applying heat/cold for muscle relaxation and to relieve joint pain. Joining an ankylosing spondylitis support group may provide benefits.
6. People with Ankylosing Spondylitis Should Avoid Exercise
Absolutely not. 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 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. Drug Treatment for Ankylosing Spondylitis is Always Expensive
Not initially. Drug treatment with anti-inflammatory NSAIDs, for example, ibuprofen (Advil), naproxen (Aleve), indomethacin,diclofenac (Cataflam), celecoxib (Celebrex) and analgesics likeacetaminophen (Tylenol) are usually the first drugs used for ankylosing spondylitis treatment. These drugs are readily available either over-the-counter or with a prescription and most come in low-cost generics.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. Ankylosing Spondylitis Leads to Severe Disability
That depends. 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, in fact, 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. 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 weight, avoid 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.
10. If NSAIDs Don’t Work, My Treatment Options Are Limited
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 biosimilar Amjevita (adalimumab-atto) approved in September 2016, Cimzia (certolizumab),Enbrel (etanercept) and its biosimilar Erelzi (etanercept-szzs),Remicade (infliximab) and its biosimilar Inflectra (infliximab-dyyb), and Simponi (golimumab). They are given in the clinic or 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.
11. Aren’t TNF Blocker Side Effects Dangerous?
Not always. As with most medicines, TNF blockers have some serious side effects. However, with TNF blockers most of the very serious side effects are also very rare. An increased frequency of infections, including tuberculosis (TB) or fungal, may occur. However, 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), or non-melanoma skin cancers (like basal cell and squamous cell). Remicade (infliximab) has also been linked with a severe allergic reaction (facial swelling, difficult breathing, low blood pressure).
12. TNF Blockers Are All the Same, So It Does Not Matter Which One I Use
It might matter.All TNF blockers target an inflammation-causing substance called TNF, but there are some differences, too. Humira, Amjevita,Enbrel, Erelzi, Cimzia and Simponi are all given as a self-administered subcutaneous (under the skin) injection. Remicadeand Inflectra 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, which will save you money. If you do not have insurance, call the manufacturer to inquire about patient assistance programs. Remember, many patients experience significant improvements in their AS using a TNF blocker, no matter which one they use.
13. 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 percent of patients (10 to 20 out of 100) might experience injection site reactions, which are usually described as mild. However, if the reaction still persists after one week, contact your doctor.In addition, patients using TNF blockers should consult with their health care provider before receiving any “live” vaccine (for example: FluMist, BCG vaccine) as TNF blockers may make the vaccine less effective.
14. TNF Blockers Can’t Help Slow Damage in AS
This is a controversial topic.Several studies have suggested no effect of TNF blockers to slow disease progression in AS. However, a 2013 study (Haroon) suggests 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.
15. 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. These drugs can run from $3000 to $4000 per month if you are paying out-of-pocket.However, there may be ways to help offset the cost. Eachmanufacturer has a patient assistance program in place, so check their websites or ask your doctor about patient assistance programs. Check Spondylitis.org for a listing of additional resources.
If you have insurance, check with your plan to determine the preferred treatments and copays for ankylosing spondylitis. The manufacturer may be able to assist you with these copay costs as well, if you qualify.
16. If TNF Blockers Don’t Work, There Aren’t Any Other Options
Wrong. TNF blockers are effective for many patients with AS, but there are still other options for patients who do not respond or cannot use them. Local injections of corticosteroids, such asmethylprednisolone (Solu-Medrol), can be used intermittently if there is evidence of local joint swelling. Long-term, chronic use of corticosteroids is discouraged due to side effects.Sulfasalazine or methotrexate, oral disease-modifying drugs often used in rheumatoid arthritis, may be used in AS patients with symptoms in other areas besides just the spine. However, a Cochrane review suggests that methotrexate use in AS may not be effective.
In 2016, the FDA approved Cosentyx for AS, offering a totally new type of treatment option.
Cosentyx: Expanding The Range Of Treatments For AS
Cosentyx is the brand name for the drug secukinumab and is administered by subcutaneous injection, usually every four weeks. 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 AS 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.