When I was in my 20s and early 30s, I was all about saying yes. Yes, I’ll take on that extra part-time position at work. Yes, I’ll sign up to be room-mom at my children’s elementary school. Yes, I’ll go to grad school to better my future. Yes, I’ll go on hikes during the day and go out dancing at night. I essentially measured my success by all the ‘yesses’ in my life. Being busy meant I was achieving something.

Little did I know, however, how drastically my life was about to shift. Soon, even saying yes to little things, like taking a shower or going to a necessary appointment, would become difficult.

A Changing Reality

At 34 years old, my life was good. I was newly remarried and had two young children. I had my dream job as a director of education in a prison and was halfway through a graduate program. I spent nearly every weekend performing or producing burlesque shows or going camping or hiking. I was keeping myself busy and enjoying the go-go-go of life.

Then suddenly, there was a shift. I started getting tired more often and more easily, and the periodic migraine episodes I had since I was 11 came back in full force. I assumed both were stress-related, the result of having just a few too many things on my plate. So I let go of a few obligations. But things didn’t improve. In fact, they got worse. I found it harder to get up in the morning for work; some days I was literally unable to get out of bed. When I did manage to get up, my muscles would spasm and cramp involuntarily, causing my limbs to twitch and jump as if I was dancing to music only I could hear.

But it wasn’t just a physical shift. Work tasks that had once come easily made my brain swim. I easily lost words as I was about to speak, as if they had just evaporated off my tongue and out of my mind.

As my body and mind slowly shut down, I had to give up more and more of the activities I loved. I started working from home in a part-time role (though I eventually had to quit altogether). I took a leave of absence from school. I turned most of my parenting duties to my spouse. I traded hiking and dancing for resting in hopes that I would regain some strength.

It was as if my body had ripped the ‘yes’ away from me, leaving me unable to do much of anything but lie in bed.

Fighting Against Myself

This, in my mind, was not acceptable. This was not who I was. I was Angie: Super-mom, career woman, performer. I was determined to fix this and return to the things that had, up until that point, defined me.

I fought against this mystery illness with everything I had. I saw specialist after specialist, each of whom ordered blood work and imaging, tests, and procedures. I tried medication after medication to try to get my symptoms under control.

A few months into my still-to-be-identified-illness I had a lumbar puncture which resulted in a cerebrospinal fluid leak. Anytime I was in a position other than completely horizontal my head would pound with extreme pain and pressure that made me want to pass out. I was scheduled to produce a show just a few days later, and instead of listening to my body and cancelling the show, I continued as if nothing was wrong. I thought that if I pushed myself hard enough, I could push through any obstacles my body set up in my way.

My spouse drove me almost two hours to the show location. I worked in three-minute increments before reaching such levels of pain that someone had to escort me to the parking lot, where I would lie completely flat on the pavement for a while before getting up and trying again. This repeated itself throughout the night, with me trying to push through and then my body slamming me down. I cried in frustration the entire way home.

In retrospect, doing that to myself was madness. But at the time I so desperately wanted my “old life” back that I was willing to put myself through sheer torture, ignoring all the signs my body was giving me and probably making my conditions worse in the process.

Learning to Listen to the Body

Eventually I was diagnosed with several conditions, including ankylosing spondylitis, fibromyalgia, and chronic intractable migraine. Even with these diagnoses, though, I somehow thought I could have my old life back; my life of yes where I was able to go-go-go and do-do-do.

My therapist kept saying, “Angie, your body is trying to talk to you,” but I didn’t know what my body was trying to say. Or, more accurately, I just didn’t want to listen. Because listening to my body would mean that I had to accept that my life was different now; that I was different now.

But resisting the messages of the body is exhausting. I found myself so tired and in so much pain that I simply had to stop, listen, and try to understand what my body was saying.

Slowly, and with much trepidation, I began listening to the messages from my body. Over and over it would tell me, “slow down and take care of yourself.”

So, after a lifetime of saying yes, I slowly began to practice saying no. No, I won’t force myself to do something when my body was already in pain. No, I won’t participate in something (even when I wanted to) because I know it will force me to be bed-bound for three days after.

I began to work with my body instead of fighting against it. In doing so, I realized my body was not some separate entity; my body was — is — me, and I owe it to myself to listen. I began to learn how to better care for myself and navigate my new life with chronic illnesses.

Sometimes this means that I spend days in bed, order takeout for dinner, and cancel plans because my body has told me it needs rest. Sometimes it means that I have to tell my boss I can’t teach another class this quarter because two is all my body can handle. It may mean I have to tell my teenager that I can’t go on a walk with them. Or it may be something small, like telling myself I can’t put on makeup that day because simply showering is going to take up all my energy.

And in saying no to some things, my body gets the care it deserves, which allows me to say yes to other things. Because I’ve allowed my body to rest for several days, I’m able to go for a short hike. Because I’ve learned to only schedule myself for about five hours of work a week, I’m able to teach again. Because I said no to going for a walk with my teen, I have the energy later that week to help them make a favorite dinner.

In learning to say no and listen to the messages my body is giving me, I have found a balance that I never had in my pre-illness life. I have learned to prioritize my wellness; to care for myself and pay attention to the things I need. I have learned to set healthy boundaries with myself and those around me in order to take care of myself. And most importantly, I’m no longer fighting against my body. By learning to accept when my body says ‘no,’ I’ve learned how to say ‘yes’ to myself.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

When it comes to inflammatory and autoimmune diseases, including inflammatory arthritis, women are generally at greater risk than men — with a few exceptions. For many years, experts believed that ankylosing spondylitis (AS) was far more prevalent in men than in women. AS is a form of axial spondyloarthritis (axSpA), a type of arthritis that mainly impacts joints in the lower spine and pelvis. Many people with axSpA eventually end up with AS, which is characterized by a partial fusing of bones in the lower spine. For years experts believed that young men were most apt to experience this problem, but that may not be the case.

A new study, published in the journal Arthritis Care & Research, upends the preexisting theories on this subject, finding that incidence of ankylosing spondylitis is about the same in women as it is in men.

To conduct this study, researchers from Stanford University analyzed data on 700,000 members of the U.S. military who had seen a doctor for chronic back pain between March 2014 and June 2017. They found that the incidence rate of ankylosing spondylitis was actually slightly lower for men than for women: 26.53 per 100,000 versus 31.36 per 100,000. (The difference, however, was not deemed significant enough to say women have a higher risk than men for developing AS.)

“Our results challenge the widely held conventional wisdom of a male predominance for AS risk in the U.S. population,” the authors wrote. “In contrast to the Olmsted study [a large study that looked at AS incidence in America between 1980 and 2009], which suggested that males were three times more likely to have incident disease than females, we found incident AS to be comparable for the sexes.”

The researchers suggested this new study might better reflect the overall makeup of the U.S. population. They also noted that the older Olmstead study used different criteria for the diagnosis of AS: The Olmstead study required “observable radiographic damage on plain X-ray,” whereas the new study allowed for X-rays or MRIs (which might show damage not visible on a more basic X-ray).

The authors of this new research also pointed that their study was not a random sample of the U.S. population, and that “in an all-volunteer military, individuals who select themselves for military service may be more likely to be physically fit and more willing to accept physical challenges,” adding that they “encourage additional investigations utilizing other populations.”

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Back pain of any kind can be frustrating and debilitating, and figuring out what’s causing the back pain isn’t always easy. Part of the challenge is that some back-related conditions, like ankylosing spondylitis and sciatica, share some symptoms in common.

Online tools like PainSpot — which can help you determine what might be causing your pain by asking a series of questions that helps differentiate different types of pain from each other — might help you narrow down potential back pain conditions, but ultimately you’ll need to see a doctor. This is especially important if you suspect you could have a type of inflammatory back pain like ankylosing spondylitis, which can be progressive and often requires different treatment from other common causes of back pain, like sciatica.

“Not all back pain is created equal,” explains Stuart D. Kaplan, MD, Chief of Rheumatology at Mount Sinai South Nassau and a partner at Rheumatology Consultants, LLP.  “There are different types of back pain that are very different in their etiology [cause] and in their treatment.” It’s important to try to diagnose and treat back pain properly as soon as possible to avoid unnecessary pain and disability, as well as other long-term complications.

If you’re wondering whether your back pain could be from inflammatory arthritis like ankylosing spondylitis or from sciatica, one way to start narrowing things down is to consider the type of pain you’re experiencing. Sciatic pain is often described as a shooting or burning pain that moves down your leg. It’s also fairly common. According to the Cleveland Clinic, around two in five U.S. adults experience sciatica at some point in their lifetime. Ankylosing spondylitis pain, however, often makes your lower back and pelvis feel achy and stiff. It’s an inflammatory form of arthritis that can also affect joints beyond your lower back, so if you’re also experiencing pain and stiffness in other places — such as the neck, shoulders, hips, ribcage, or feet — that may be something to consider.

If either of these types of pain sound familiar, read on to learn more about other differences between ankylosing spondylitis and sciatica, including how these conditions are diagnosed and treated.

Ankylosing Spondylitis vs. Sciatica

If you suspect you might be dealing with either ankylosing spondylitis or sciatica, you can learn more about the symptoms of each, the key differences, the treatments, the outlook, and the risk factors.

Ankylosing spondylitis (AS) is a form of arthritis that falls under the umbrella of axial spondyloarthritis (axSpA), which is an inflammatory form of arthritis that is associated with chronic lower back pain. Ankylosing spondylitis results from having an over-active immune system that causes inflammation of the spinal vertebrae, which tends to result in back and neck pain. It may also cause pain and stiffness in other joints, like your hips, shoulders, and feet. AS can cause bony growths on the spine. Over time, these growths can cause parts of the spine to fuse together, which limits mobility. Although ankylosing spondylitis can affect people of any sex, Dr. Kaplan notes that it is slightly more common in men than in women.

Sciatica can also cause back pain, but in a very different way than ankylosing spondylitis. Sciatica is nerve pain from damage or irritation to the sciatic nerve, which branches from the lower back through the hips and buttocks and down through the legs. According to the Cleveland Clinic, the sciatic nerve is the longest and thickest nerve in the body, made up of five nerve roots. Samar Gupta, MD, FACR, a rheumatologist at Michigan Medicine, explains that sciatica can often be attributed to an inciting injury. “One example would be somebody picking up a heavy weight, and the posture not being right. It’s a mechanical issue, not an inflammatory disease,” he says.

When it comes to back pain, mechanical issues are anything that disrupts how the components of your back fit together and move. Some examples include throwing out your back while lifting something heavy or pulling a muscle while exercising. An inflammatory disease, on the other hand, is when your immune system is mistakenly attacking the joints — in the case of ankylosing spondylitis, the immune system is attacking the joints of your spine.

Another different between ankylosing spondylitis and sciatica: AS pain is chronic; once it starts, it may ebb and flow but never really go away. Doctors become more suspicious of AS when you’ve had back pain that came on gradually and has lasted for at least three months. Sciatica pain often goes away with treatment.

Do You Have Ankylosing Spondylitis or Sciatica?

Although ankylosing spondylitis and sciatica both present as back pain for many people, there are other distinct symptoms associated with each. Determining which set of symptoms you’re experiencing may give you a better idea of which ailment you’re dealing with, though of course, you’ll need to consult a doctor to get an official diagnosis.

The type of pain you feel is likely a clue as to what condition you’re dealing with. Ankylosing spondylitis pain tends to be duller and makes you feel stiff around the lower back and hips. Pain from sciatica is often a sharp, shooting pain that radiates down one side of your buttocks and leg.

The back pain and other symptoms caused by AS tend to have some subtle but unique traits and characteristics. Some of the more common ankylosing spondylitis symptoms include:

• Pain and stiffness in the lower back and hips
• Pain and stiffness in other joints, such as your neck, shoulders, or feet
• Pain between the base of your spine and your pelvis
• Pain that is worse in the morning that gets better as you move around
• Pain that improves after a hot shower
• Alternating buttock pain
• Difficulty breathing
• Fatigue
• Loss of appetite
• Abdominal pain, diarrhea, and other GI symptoms
• Skin rash
• Uveitis (eye inflammation)

Sciatica symptoms include:

• Sharp, burning pain that radiates from your lower spine down through your buttocks and the back of your leg, usually only on one side.
• Pain that is more felt in your lower leg compared to your lower back
• Pain that worsens when you cough or sneeze
• Pain that gets worse as the day goes on
• Numbness, tingling, or muscle weakness in the affected leg
• Difficulty controlling your bowels or bladder (if this is the case, you should seek immediate medical care)

One important distinction that can help you determine what you’re dealing with is the onset of the pain: Did it come on quickly, or has it slowly gotten worse over time?

Dr. Gupta notes that with sciatica, there tends to be a clear incident that triggered the pain. “[A person with sciatica may have] twisted their back, or bent in the wrong way,” he says. “Sciatica is very acute, like they were fine yesterday and today they’re feeling horrible. But ankylosing spondylitis comes on insidiously, they kind of have this little backache; now it’s getting worse.”

Does Ankylosing Spondylitis Cause Sciatica?

Although both conditions can cause back pain, one ailment doesn’t really cause the other one to occur, except in very unusual cases.

“Ankylosing spondylitis causing sciatica is not impossible, but it’s a very rare occurrence,” explains Dr. Gupta. “The vice versa is not true — sciatica doesn’t cause ankylosing spondylitis.”

He notes that sacroiliitis — inflammation of the sacroiliac joint, which is where the spine connects with the pelvis and is a common feature of ankylosing spondylitis — causing symptoms of sciatica have been reported in a handful of cases.

There isn’t necessarily any specific cause of ankylosing spondylitis, though genes are thought to play a role. There is one known genetic marker in particular, called the HLA-B27 gene, that is associated with an increased risk of ankylosing spondylitis. (However, you can also have AS without having this gene.)

Research suggests that AS can be triggered by something in your environment, such as an infection. As with other inflammatory conditions, AS is likely caused by a combination of genetic and environmental factors.

Understanding Sciatica

How Common is Sciatica?

Sciatica is a fairly common condition. According to the Cleveland Clinic, about 40 percent of U.S. adults experience sciatica sometime in their life. Some people, however, are more at risk of experiencing sciatic pain because of their lifestyle and other health conditions.

Outlook for Sciatica

Although sciatica can cause intense pain, it isn’t necessarily something that requires serious medical intervention. Dr. Gupta says the majority of sciatica cases resolve within 90 days. That said, Dr. Gupta also notes the importance of seeing a doctor if you suspect you could have sciatica, as it can cause permanent nerve damage if left untreated.

“If the back pain is the more prominent feature and if it is not improving with more conservative measures, go see a doctor,” he says. “And then consider a rheumatology referral to make sure there is nothing happening beyond run-of-the-mill sciatica.”

Risk Factors for Sciatica

There are certain medical conditions and lifestyle habits that increase your risk for developing sciatica.

• Previous Injury: Having a slipped disk in your back can cause pressure on the sciatic nerve. Similarly, other back injuries can cause you to develop sciatica.
• Weight: People who are overweight can also be at risk for sciatica because of the stress put on the spine.
• Job: There’s reason to believe that a labor-intensive job that requires you to twist your back or carry heavy loads might increase your risk for sciatica. That said, the Mayo Clinic also notes that there isn’t conclusive evidence of this link.
• Diabetes: Having diabetes increases your risk of nerve damage, which can make it more likely for you to have sciatica.
• Osteoarthritis: According to the Cleveland Clinic, as osteoarthritis breaks down the cartilage that cushions your bones, your body can grow bone spurs to try and repair the loss. It’s possible for these bone spurs to form in your spine and press on your sciatic nerve.
• Weak core: Having well-developed back and core muscles helps support the spine, which in turn decreases your risk for sciatica.
• Age: Age-related changes in the spine can be a common cause for sciatica, according to the Mayo Clinic.
• Smoking: Nicotine can damage spinal tissue and weaken bones, meaning people who smoke may be more likely to develop sciatica.

How Sciatica Is Diagnosed

If you suspect you may have sciatica, the best thing to do is to see a health care provider. They may do a physical assessment, which could include:

• Walking: You may be asked to walk on your toes or heels to see if the pain worsens, which can indicate sciatica.
• Straight Leg Test: According to the University of Maryland School of Medicine, the straight leg raise test can be used to help determine if someone has sciatica. If your doctor asks you to do this, you’ll lie with one leg down, while the other leg is kept straight up and raised by the examiner. If raising the leg between 30 and 70 degrees causes pain to occur and radiate down the leg, that can indicate that you may have sciatica. Your health care provider may also perform this test with you sitting down and stretching the sciatic nerve by extending the knee. If you feel pain that radiates to below the knee, this could be a sign of sciatica.

In some cases, such as instances where sciatica doesn’t resolve within a normal timeframe, your doctor may order additional tests. These could include:

• Spinal X-rays: If your sciatica pain doesn’t lessen after a certain amount of time, your doctor may order X-rays to see if there are bone spurs that are pressing on a nerve.
• MRI: Similarly, your doctor may have you do an MRI to get a detailed image of your bone and soft tissues, which can allow them to see things like herniated disks.
• Electromyography (EMG): Your health care provider may want you to get this test, which measures electrical impulses produced by the nerves and responses of your muscles. With regards to sciatica, it can confirm nerve compression caused by things like herniated disks.
• Myelogram: This test involves a dye being injected into your spinal canal through your lower back. It allows for the doctor to get a clear look at whether there is anything pressing against your nerves or spinal cord.

How Sciatica Is Treated

If your health care provider diagnoses you with sciatica, there are a number of treatment options they may recommend.

• Ice/Heat therapy: The Mayo Clinic recommends applying an ice pack to the painful areas for about 20 minutes multiple times throughout the day. After a few days of this, you can try using a heating pad on the lowest setting. You can try alternating warm and cold packs to see if this provides any relief.
• Physical therapy: Your health practitioner may recommend physical therapy to treat your sciatic pain. A physical therapist can perform and teach gentle stretches or exercises that will help build your core strength, which can help relieve your sciatic pain. They may also recommend light exercise, like walking or swimming.
• Medications: Some of the medications used to treat sciatica can include muscle relaxants, anti-inflammatory drugs, or painkillers, according to Dr. Kaplan.
• Spinal injections: It’s possible that your doctor might recommend getting epidural injections of a corticosteroid medication in the area around the nerve root that is causing you trouble. This can help suppress inflammation around the irritated nerve and reduce pain.
• Surgery: In severe cases, your doctor may consider surgery to treat sciatica. A severe case would be if you experience loss of bladder or bowel control or significant weakness, or if no other therapy/treatment has improved your condition. A surgeon may be able to remove the bone spur or portion of the disk that’s causing pain, but as Dr. Kaplan notes, surgery is a last resort.

Understanding Ankylosing Spondylitis

How Common Is Ankylosing Spondylitis?

Estimates vary depending on which studies you look at, but AS is not as rare as you might think. According to the Spondylitis Association of America, spondyloarthritis (which includes ankylosing spondylitis as well as other forms of arthritis) affects 3.2 million Americans, or about one in 100. And these numbers may be an underestimate, since AS tends to be misdiagnosed or people experience significant delays in getting a proper diagnosis.

Risk Factors for Ankylosing Spondylitis

There isn’t one specific cause of ankylosing spondylitis, but there are some groups who are more at risk for developing the disease than others.

• Sex: Ankylosing spondylitis has historically been considered a disease that predominantly affects men. However, more recent data suggests that while AS is more commonly diagnosed in males than in females, it does affect females and is more evenly distributed among the sexes than previously thought.
• Age: Symptoms of ankylosing spondylitis usually begin between before age 45 and commonly start in the teens, twenties, and thirties.
• Family history: People who have the HLA-B27 gene in their family are at greater risk of developing ankylosing spondylitis. That said, it is possible for people who don’t have this gene to develop the disease. And on the flip side, people who do carry the gene don’t always develop ankylosing spondylitis.

How Ankylosing Spondylitis Is Diagnosed

If you are concerned that your back pain might be caused by ankylosing spondylitis, you should see a doctor. You may need to start with a general practitioner for initial testing, who would likely refer you to a rheumatologist, which is a doctor who treats musculoskeletal disease and systemic autoimmune conditions. There are several things that your health care provider might do in order to diagnose you with ankylosing spondylitis.

• A physical exam. The doctor will look for signs of spine fusion, inflammation, and limited range of motion in your spine and your other joints.
• Image testing. Your rheumatologist may order imaging tests, such as X-rays and MRIs, to get a better look at what’s happening with your spine as well as your other joints.
• Assess personal and family medical history. Your health care provider will likely ask you some questions about your own medical history as well as your family history. They will ask about the nature of your back pain and other symptoms: when they started, what makes them feel worse or better, etc.
• Blood work. A doctor may order blood tests to get more information about whether you are at risk of developing ankylosing spondylitis. These may include testing for the HLA-B27 genetic marker and looking for elevated levels of inflammation in the blood — erythrocyte sedimentation rate (ESR, or sed rate) or C-reactive protein (CRP).

Read more here about how ankylosing spondylitis is diagnosed.

Outlook for Ankylosing Spondylitis

Ankylosing spondylitis can cause pain that can be debilitating and have a big impact on patients’ sleep, mood, ability to work, and overall quality of life. It is not a life-threatening condition.

“The outlook for AS is very good if addressed early in the disease course,” Brett Smith, DO, rheumatologist with Blount Memorial Physicians Group in Alcoa, Tennessee, previously told CreakyJoints. “With appropriate comprehensive treatment, including physical therapy and exercise, NSAIDs, and biologics, many people have preserved function and minimal pain.”

That being said, some of the comorbidities associated with AS can be concerning. People with AS may be more likely to develop certain heart problems and osteoporosis. They may also be at risk for other inflammation-related conditions, such as inflammatory bowel disease (IBD), psoriasis, and uveitis (eye inflammation), as well as mental health conditions like depression.

How Ankylosing Spondylitis Is Treated

There’s no cure for ankylosing spondylitis, but there are different types of medication that can help relieve symptoms, reduce inflammation, and possibly slow the progression of the disease. Treatment for AS may include:

• NSAIDS. Short for nonsteroidal anti-inflammatory drugs, these are considered first-line treatments for AS. Medications in this category include over-the-counter drugs such as ibuprofen or naproxen, as well as prescription versions of NSAIDs. If they don’t work well enough to reduce AS symptoms, then doctors typically recommend advanced therapies, such as biologic drugs.
• Biologics. Biologics are medications (given by injection or IV infusion) that target specific parts of your immune system to reduce inflammation.
• Steroids. Corticosteroids are not recommended for long-term use because they can cause many different side effects, but they are sometimes recommended to help manage painful flares, or periods of increased disease activity.
• Exercise regularly and attend physical therapy. In addition to following a treatment plan from your doctor, regular exercise and physical therapy can help you manage pain from ankylosing spondylitis. If you experience stiffness and pain in the morning, doing flexibility and range-of-motion exercises when you wake up may help. You can also try deep-breathing exercises, balance exercises, and aquatic exercises.
• Get enough sleep. Getting a good night’s rest can help you manage your AS symptoms. However, pain from AS can make it very challenging to get high-quality sleep; many people with AS report “painsomnia” that interrupts their sleep. Make sure to tell your doctor if you are having difficulty sleeping. You may need adjustments to your medication regimen or try complementary practices, like meditation, to help improve your sleep.

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When you have a chronic illness, you can spend a lot of time trying to get people to acknowledge and understand your disease. You explain the mechanics of it, often stopping to define the medical jargon that’s become your second language. You describe, in great detail, the physical pain that turns the simplest tasks, like getting dressed or cleaning, into exhausting obstacles. You share how the illness has taken a toll on your mental well-being, causing depression, anxiety, brain fog, and other issues that get in the way of your happiness and productivity. If you’re lucky, many people will respond with empathy and sentiments of support. But, chances are at some point, some people will hear your story, take a look at how you appear on the outside and say some version of, “but you don’t look sick!”

In many cases, they mean this as a compliment of sorts — the implication being, it’s amazing that you look as well as you do given how sick you say you are. Sometimes, however, this phrase is weaponized to doubt or question the seriousness of your condition.

Regardless of the intent, these five words pack a punch that not only bruises a person emotionally but derails the work that patients and advocacy groups like the Global Healthy Living Foundation (GHLF) and CreakyJoints do to raise awareness about the challenges of living with chronic illness.

In May, as part of Arthritis Awareness Month, we asked members of our community to share some of the things they’ve experienced while living with a chronic illness. In sharing their stories, we hoped to make the invisible elements of their illnesses more visible. One experience many of our community members shared: being told “you don’t look sick” at some point in their chronic illness journey. For many of them, this phrase is a dismissive dagger that belittles their physical, mental, and emotional struggles.

“It’s not a compliment,” Rachel M. says of the phrase. “It’s heard as an undermining of the fact that I feel like poop. The reality is that I’m in pain and exhausted every single day.”

Dawnique S. echoes Rachel’s thoughts, noting that looks can be deceiving when you have a chronic illness. “People don’t understand how bad you are really feeling because you ‘look fine,’” Dawnique writes. “Yes, I look fine but I’m feeling like I’m dying.”

Some people, like Josie P., are so tired of hearing the phrase that they no longer discuss their disease in detail.

“I just say, ‘I have three autoimmune diseases,’ and leave it at that,” she shares. “It’s exhausting trying to get people to get it, and the process usually comes with judgments, assumptions, and bias. . . If people want to learn and ask questions, then I am here to educate as much as I can. But as soon as [people] start getting rude and judgy, we are no longer having a conversation.”

Here are some more community members’ thoughts on this controversial phrase, as well as their tips for responding to it and what they’d like to hear instead.

Why the Phrase ‘But You Don’t Look Sick’ Is Harmful to People with Chronic Illnesses

The way a person looks should not ­— and does not — define their wellness

“People assume that you’re fine because ‘you look good,’ or ‘you’re so smart’ when that has nothing to do with living with a chronic disease. One minute I can handle doing something that requires exertion. The next minute I’m unable to complete it.” — Teresa S.

“‘But you felt fine yesterday.’ People don’t realize how quickly, even over a matter of hours, that our diseases can knock us on our butt.” — Dawn P.

“No one realizes the pain I am actually in 24/7 [and] the constant fatigue, all because ‘you look fine to me.’” — @Dajoja

“I wish people could live in my body for 72 hours to really feel what I feel every single day, all day.” — @Kimmie_ann1

But it isn’t just friends, family, and strangers who dismiss patients’ pain based on appearance. Several members of the community said their doctors have also commented on whether or not they “look sick.”

“Most of the doctors I see are telling me what I can still do because ‘I don’t look that sick yet’ — doctors who can’t seem to read a chart and don’t believe their patients.” — @Freedomlei

“My doctor straight up told me wearing makeup is a sign it’s not as bad as I say it is… She doesn’t know the days I wear makeup are the days I need to hide my physical reality the most.” — @applez13

Saying someone doesn’t look sick can imply they are faking their illness, which can be harmful to their care

“I have been told I don’t look sick. I’m a part-time wheelchair user and when people see me walking, they think I’m faking the debilitating arthritis.” — @VenZenix

“People look at me like I’m faking [when I’m] in a motorized shopping cart. It’s so difficult to explain exhaustion. Before coronavirus happened, if I wore lipstick, people thought I was lying [about needing to] park in a handicap space.” — @Tmorse895

“[You] can’t look nice if you go somewhere or people think you are well because you look nice, not knowing what you are actually hiding or the struggles you are having.” — @Trujillo0827

“You try your best to live as normal life as possible because you can’t give in to this illness, but then people think you’re faking it.” — @haylsh

Questioning someone’s pain and wellness may result in the loss of that relationship

“I fell out with one of my closest friends last month. . . She said I was using my illness as excuse. Luckily I have some amazing support from other friends.” — @janebradley685rawarrior

“My husband literally closed the door on me because he didn’t know how to help me. He just closed the door in hopes of ‘out of sight, out of mind.’ It’s very cruel, but we have to care for ourselves and not stress about other[s] that just don’t understand that the pain is very real, and constant and never ending.” — @katramkapell

“[People] look at you like ‘whatever you look fine.’ Well guess what, if you don’t get it then I don’t need you in my life.” — @Mamabear5415

Dismissing someone’s pain keeps them from talking about it which, in turn, keeps them from raising awareness

“Since I know what the response will be (‘you look fine to me’) I don’t bother talking about [my illness].” — @kht718

“For years I felt so much shame for being called lazy, and then in the last year I realized when you’re in that much pain and overwhelmed and everyone is telling you it’s not real and that you’re lazy, of course you don’t seek treatment and self-advocate. . . It’s so damaging for people in this situation to be denied their experience.” — @Ms.stratford

How People Respond When Told ‘But You Don’t Look Sick’

Over the years, some members of the community have found clever ways to respond to those dreaded five words.

“I’ve decided to say, ‘Thanks, I’ve decided I’m going to look good in my grave.’” — @bodymindconsult

“I preempt them and say, ‘I may look normal on the outside, but I’m a HOT MESS on the inside.’” — @TheTaliMama

What to Say Instead of ‘But You Don’t Look Sick’ (and Other Phrases Like It)

As members of our community have explained, telling someone with a chronic illness that they don’t look sick comes off as dismissive and rude — even if that’s not the intent. That said, showering someone with an abundance of sympathy is also not necessarily the way to go.

“People [either] don’t believe your issues and don’t think it’s that serious or they pity you and don’t know how to talk to you without saying they’re sorry,” Jennifer W. says. “They’ll hide their struggles because they aren’t as bad as yours or they constantly talk about how bad your life is. It all just gets insulting when all you want is to be treated normally and talked to like a regular person.”

Instead, consider showing empathy for them and their situation. Rene M. shares some phrases that “make me feel like I’m important and my diseases haven’t made me invisible.” These include:

• I’m here for you.
• What can I help with?
• How are you feeling?
• I can’t imagine how you feel.

But it isn’t just about what you say to someone who has a chronic illness; it’s also about how you treat them.

“When I’m ignored, or told to quit acting, or when someone tells me to, ‘stop milking it,’ that makes me furious. [It] can add five points to the pain level and sometimes set me back on my acceptance of my own condition,” Elizabeth F. writes. “But when I ask for a little help and someone does it without me having to explain, it takes part of my pain away.”

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

Axial spondyloarthritis (axSpA) is form of inflammatory arthritis best known for causing chronic lower back pain. The disease often impacts the spine itself as well as the sacroiliac (SI) joints that connect the lower spine to the pelvis. Although axSpA tends to be progressive and degenerative, not everyone who has it takes disease-modifying medication. In fact, non-steroidal anti-inflammatories (NSAIDs), which ease inflammation but do not slow the progression of the condition, are often used as a first-line treatment, especially for patients who have the “non-radiographic form” of the disease.

Traditionally, axSpA has been divided into two sub-types: radiographic and non-radiographic. People with radiographic axSpA have damage to the spine or SI joints that is visible on an X-ray (radiograph), whereas those with non-radiographic axSpA do not.

Although some people with non-radiographic axSpA never progress to the radiographic form, delaying biologic disease-modifying therapy might be a mistake for members of either subgroup, according to recent research. A study presented at the EULAR 2021 Virtual Congress, the annual meeting of the European Alliance of Associations for Rheumatology, suggests that patients with either form of axSpA might fare better if they start a biologic as soon as possible — although it can take more than two years to see proof that it’s helping.

For the study, researchers analyzed the “sacroiliitis scores” of 301 participants from the ongoing German Spondyloarthritis Inception Cohort. The sacroiliitis score is a numeric “grade” assigned to axSpA patients to determine the severity of their sacroiliac joint inflammation. The researchers focused on patients who had X-rays taken two years apart. When the study began, 166 of participants had been living with non-radiographic axSpA for five years or less; the remaining 135 had been living with radiographic axSpA for 10 years or less.

Initially, only nine patients in the study were using a tumor necrosis factor (TNF) inhibitor, such as adalimumab (Humira) or etanercept (Enbrel), but that number grew to 87 patients during the study. These medications are typically prescribed to axSpA patients after first-line treatments, like NSAIDs, are not working well enough to control symptoms.

The researchers found that patients who had used a TNF inhibitor for at least 12 months during the previous two-year period had lower changes in their sacroiliitis score than those did not receive TNF inhibitors during the same previous two-year period.

The treatment was associated with slowing down erosion of bone in the sacroiliac joint.

However, when researchers looked at the current two-year period, comparing people who had been taking biologics for at least 12 months to those who had not, they did not observe the same decrease in the sacroiliitis progression score in those on therapy.

The authors concluded that using TNF medication early in the disease process is associated with slowing the rate of deterioration of the SI joints in axSpA patients, but the effect only became evident two to four years after starting treatment.

“The data indicate that TNF inhibitors have a late effect,” study author and rheumatology researcher Murat Torgutalp said in the Eular Congress News. “You cannot observe the effect of TNF inhibition on radiographic progression in the same interval [shortly after that treatment is started]. You have to wait to see this in the next interval.”

Since axSpA is a chronic disease that currently has no cure and that patients can have for the rest of their lives, it’s important for patients and doctors to understand not only whether therapies can help prevent disease progression, but to also have realistic expectations about timing and how long it takes to see such a benefit.

Track Your Medications with ArthritisPower

Join CreakyJoints’ patient-centered research registry and log your medications to track side effects and impact on disease activity. Learn more and sign up here.

The President of the United States recently mentioned that his late son, Beau Biden, lived with the same disease I have: ankylosing spondylitis (AS).

When I was diagnosed with ankylosing spondylitis (also known as axial spondyloarthritis, or axSpA) in 2013, I had only ever met one person with the disease: my dad. Health information websites told me the disease was rare, and I believed it (I learned later that isn’t true). When I told people about my diagnosis I first had to teach them how to pronounce it — ank-ih-low-sing spon-dih-lite-iss — then I had to explain it, and finally I had to prove I had it. Even to doctors.

Educating people about AS was only part of it; even worse, I also had to live with the disease. My life was dominated by constant debilitating pain, lack of sleep, extreme fatigue, infections, trouble breathing, and the hell of navigating the medical system.

I was a former college athlete, then suddenly I was barely able to care for myself. My life completely flipped upside down in mere months.

In the beginning, I felt isolated and hopeless with no promise of a cure or, more importantly, public understanding of what my body was doing to itself. My future was uncertain; there was no prognosis because spondylitis is unpredictable. I couldn’t imagine my life in five, 10, 30 years.

Without a prognosis, I had no timeline.

Without a timeline, I couldn’t plan.

Without a plan, I struggled to find meaning.

I began sharing what I was going through. I was desperate for people to acknowledge the hell that was this disease; I needed people to see how it had ruined my life. Over time I realized that telling my story gave others permission to tell their stories, too. And I learned I could use my story to affect larger issues in health care, disability, research, and policy.

The disease that had ruined my life also planted the seeds for something else: harnessing the tragedy and converting it into meaning and hope.

The Power of Sharing Your Story

If spondylitis was going to try to take me down, at least I would take it down with me by exposing it and making others aware of it. I made a life goal to make spondyloarthritis a household name. After a viral blog post in 2015, I was catapulted into life as a small-time public figure, all the while hoping that one day I could retire from my own story when I achieved my goal.

In late 2015, the lead singer of the band Imagine Dragons, Dan Reynolds, announced he had AS. Other public figures were already public about the disease, or later announced they were living with it: Mick Mars, Zach Kornfeld, Rob Wicall, Tanya Harrison, Alicia Graf Mack, Rev. Dr. William J. Barber II, and more. As more people in the limelight talked about spondylitis, and as the whole AS community became more vocal, it meant more awareness, and less isolation. It meant an easier time not only teaching people how to pronounce the disease, but how to offer support and understanding to those living with it.

Each new story nudged the spondylitis community outward, ever-so-slightly narrowing the nonsensical gap between awareness of spondylitis and its prevalence. Each new story had the potential to lead to the next level: more stories meant more awareness, which led to earlier diagnoses, which led to more stories, which led to more research, to more stories, to more treatment options, to more stories, and so on.

Momentum built on momentum.

The Ultimate Awareness

Eight years after my diagnosis, this momentum hasn’t yet translated to significant change — there’s still no cure, and I still have AS symptoms. But after eight years of advocacy, I have noticed my work has gotten easier in some ways. Now it’s less about how to pronounce the name of the disease and more about how the disease works and what needs to change for more awareness, earlier diagnosis, and better treatments.

That said, nothing prepared me for the sitting President of the United States to casually mention ankylosing spondylitis on May 28, 2021 during a speech to service members and their families.

It’s hard to explain the feeling of knowing that the President of the United States knows what my disease is, has a deeply personal connection to it, and can even pronounce it correctly — my disease that so many have never heard of, despite it affecting some 3.2 million Americans: That’s more than multiple sclerosis (MS), rheumatoid arthritis (RA), and amyotrophic lateral sclerosis (ALS) combined, according to the Spondylitis Association of America (SAA).

The easiest way to explain it is hope.

When I heard President Biden say the name of my disease, I felt hope that one day he would declare a war on rheumatic disease. I felt hope that he, and others in the position to do so, would say the name of my disease again and again until it became a household name. I felt hope that, one day, I could finally retire from my advocacy.

Clarification About a ‘Cure’

That said, misinformation about spondylitis is still rampant. I want to use this opportunity to interpret and explain some things President Biden said about spondylitis.

During his speech, President Biden said:

“But then he decided that — I kept on — he had contracted a — exposure to a virus in — when he was in Kosovo and in Turkey as a civilian. And he came back with a problem. But he kept going to Walter Reed. I couldn’t understand why he was — they finally found — it’s called ankylosing spondylitis. They finally found a cure. It prevented him from having what they call ‘bamboo spine.’ But he kept going back. I couldn’t understand why. I thought I knew why, but, Gov, he went back because he was trying to get an exemption to be able to join the United States Army.”

President Biden’s comments about Beau being cured are inaccurate and most likely the result of confusing and limited information. There is no cure for spondylitis, although there are treatments to help manage the condition. My curiosity about where the President might have gotten that information led to me digging into Beau’s story, hoping to find an explanation.

In Hunter Biden’s memoir, Beautiful Things, he writes about Beau returning from Kosovo with a virus that seemed to trigger his AS diagnosis in 2001: “[…] ankylosing spondylitis, commonly known as bamboo spine, a horrific genetic disorder that causes bones in the back to freeze up, like acute arthritis. Beau was treated with Humira, then an experimental drug.”

Humira belongs to a class of drugs called biologics, which are made from living organisms (which is different from other drugs, which are made chemically). They target processes in the body that cause inflammation, which is the central problem in inflammatory rheumatic diseases like spondylitis. Controlling inflammation means managing the disease and slowing it down.

In 2001, when Beau Biden was diagnosed with ankylosing spondylitis, biologics were only just beginning to be investigated as a treatment for spondylitis. In 2003, Enbrel was the first biologic to be approved by the FDA for the treatment of spondylitis. Humira, the drug used experimentally to treat Beau in 2001, wouldn’t be approved for the treatment of spondylitis until 2006.

When President Biden mentioned a cure being found for Beau, I suspect he believed that his biologic prevented “bamboo spine” (outdated language that refers to fusion of the spine from bony spurs), which seemed like a cure. It’s more likely that the medication was effective enough for Beau that it controlled his symptoms and helped halt his disease’s progression well enough to cause remission. In spondylitis, remission does not mean the disease has disappeared, only that it is well-controlled.

It’s also important to know that spondylitis is a systemic disease; it can impact organs in addition to other joints. Preventing “bamboo spine” is only one aspect of treatment for the disease. Spondylitis is a lifelong condition, and many people never achieve remission, even temporarily.

Including me. After eight years of treatment, I have never once been symptom-free. I don’t know what it means to be without pain, and my spine is slowly deteriorating while simultaneously growing new, fragile bone spurs, inching me more toward the “bamboo spine” that Beau Biden managed to avoid.

Advocacy Moments That Matter

In early 2021, when my Congresswoman, Doris Matsui (D-CA) introduced House Resolution 135, which would declare May Spondyloarthritis Awareness Month, I was excited about the thought that President Biden might one day sign it as a Presidential Proclamation.

I never imagined that President Biden might one day sign a Presidential Proclamation for a disease that his own son lived with.

There are moments in every chronic disease advocate’s career that change everything. President Biden’s mention of spondylitis feels like one of those moments to me. I don’t have the words to express how hopeful and relieved I am to know that the President of the United States has a personal connection to the disease that changed my life forever. And I can’t help but dream of meeting President Biden one day and having a conversation about the disease that his son and I share.

It feels like that life goal of making spondylitis a household name is within reach for the first time.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

Pronouncing axial spondyloarthritis (AK-see-ul Spaan-duh-low-aar-THRAI-tuhs, for what it’s worth) isn’t the most complicated thing you’ll face when learning about this inflammatory condition. Axial spondyloarthritis (axSpA) is tricky to learn about because it’s not exactly a household name — not many people have heard about it, let alone know much managing it — and because there are many myths about axSpA.

Misconceptions about who gets axSpA, its symptoms, treatment, and more can harm those who suspect they may have it or who are already living with it.

So let’s start with some basics: Axial spondyloarthritis (axSpA) is an umbrella term for types of inflammatory arthritis that primarily affect the spine and the sacroiliac joint, which connects the bottom of the spine to the pelvis. The term axial spondyloarthritis is actually fairly new, according to Petros Efthimiou, MD, a rheumatologist at New York Rheumatology Care in New York City.

“Before, we would only speak about ankylosing spondylitis. Then we realized that’s only one subgroup, and there’s an equally big, or even bigger, group that’s non-radiographic but on the same spectrum of disease.”

As Dr. Efthimiou says, there are two types of axial spondyloarthritis:

• Non-radiographic axial spondyloarthritis (nr-axSpA), which is when there are symptoms of axSpA, but damage to the joints is not visible on an X-ray.
• Ankylosing spondylitis (AS), which is when there are symptoms of axSpA and damage to the joints is visible on an X-ray.

Rajat Bhatt, MD, a rheumatologist at Prime Rheumatology PLLC in Richmond, Texas, says that nr-axSpa will eventually progress to AS in some patients, but not all.

This is just one of the many confusing elements about axial spondyloarthritis.

“We don’t know the natural history of the disease very well yet,” Dr. Bhatt says. Experts do know that there is no cure for this inflammatory disease with an impossible name. There are, however, a number of treatments that can ease pain, reduce joint damage, and may prevent or delay long-term complications. And increasing awareness — as well as knowing facts from fiction — may help people with axSpA get treatment sooner rather than later.

Below, we clear up some common axial spondyloarthritis myths that can be harmful to patients.

Myth: Axial spondyloarthritis is rare

Fact: AxSpA is about as common as rheumatoid arthritis

A disease is considered “rare” if it affects fewer than 200,000 people. According to a widely cited study that aimed to establish the national prevalence of spondylarthritis in the U.S., about 2.7 million Americans or more are affected by axSpA. That’s about the same as for rheumatoid arthritis, according to researchers. Within that group, half will have non-radiographic axial spondyloarthritis and half will have ankylosing spondylitis. What’s more, these numbers may be an under-estimate, according to researchers, because the data set on which they are based did not capture all the information included in common classification criteria for axSpA. (Classification criteria is a set of symptoms and characteristics that a patient must have in order to be considered to have a condition.)

Myth: Axial spondyloarthritis is a ‘man’s disease’

Fact: Women get axSpA too

It’s true that, historically, ankylosing spondylitis was considered a predominantly male disease. In fact, early studies estimated for every 10 men with axSpA, only one woman had it. Newer findings, however, suggest the male to female ratio is much closer at 3:1. Additionally, the prevalence of non-radiographic axial spondyloarthritis is equal among the sexes.

“We know now that nr-axSpA is just as common in women, so we don’t think of axSpA as man’s disease,” says Dr. Efthimiou.

That said, physician bias may exist, resulting in it taking longer for the disease to be diagnosed in women, as noted in a 2018 study published in PLOS One. For example, doctors may be less likely to suspect axSpA in women who present with symptoms; they may chalk it up to back pain due to other causes or another condition that causes widespread pain, like fibromyalgia.

But it’s not just the potential physician bias that causes delayed or fewer axSpA diagnoses in women. A 2018 review of axSpA patient data found that women may exhibit different symptoms of axial spondyloarthritis symptoms than men. For example, back pain may not be as prominent in women with axSpA; instead, they may feel more pain in their neck and shoulders, or in peripheral joints, like the knees. Additionally, the 2018 review found that women are more likely to exhibit extra-articular manifestations (EAM) — conditions and symptoms not associated with the musculoskeletal system — such as enthesitis, psoriasis, and inflammatory bowel disease (IBD). These symptoms may lead women to seek other kinds of treatment — say, seeing a podiatrist for inflammation of a tendon in the foot — and experience delays in getting diagnosed with axSpA.

Myth: Axial spondyloarthritis mostly affects older people

Fact: AxSpA typically starts young

When many people hear about symptoms like arthritis and back pain, they immediately assume it’s an “old person” problem. But that’s not the case with axSpA. In fact, getting chronic back pain at a young age is a red-flag symptom of inflammatory back pain, the kind involved in axSpA.

“[Axial spondyloarthritis] generally starts in people during their teens or in their twenties, or maybe in their thirties,” Atul A. Deodhar, MD, Professor of Medicine and the Medical Director of Rheumatology Clinics at Oregon Health & Sciences University in Portland, Oregon, previous told CreakyJoints. “Almost always, the disease starts before age 40.”

But being younger, combined with not knowing about axial spondyloarthritis, is also a recipe for being misdiagnosed. People in their teens, 20s, and 30s who start experiencing back pain may chalk up their symptoms to mechanical causes, like an exercise or sports injury. They may also be more likely to start treating their back pain with things like chiropractic care or massage therapy, further delaying the path to a diagnosis.

Myth: Axial spondyloarthritis only affects your back

Fact: AxSpA may also impact your feet, eyes, gut, and more

The most common axSpA symptom is pain and stiffness in the lower back, resulting from inflammation in either the sacroiliac joints, the spine, or both.

But other joints can be affected by axSpA too, including your neck and shoulders, hips and knees, and between the spine and ribs. It can also cause inflammation in the places where your tendons and ligaments attach to bones. This condition is called enthesitis, and tends to affect the back of your heel (where it can be mistaken for Achillnes tendinitis) and sole of your foot (where it can be mistaken for plantar fasciitis).

What’s more, axSpA isn’t just a joint issue. Systemic inflammation from AS can affect your eyes, leading to a painful condition called uveitis, which can cause redness, pain, and sensitivity to light. Fatigue and sleeplessness can also occur — back pain that disrupts your sleep, especially in the second half of the night is also a telltale axSpA symptom. anxiety and depression. AxSpA is also associated with dactylitis (a condition where fingers and toes swell to the point of resembling sausages), psoriasis, inflammatory bowel disease such as Crohn’s and ulcerative colitis, and an increased risk of cardiovascular disease. People with axSpA are also more likely to have

It’s important to be aware of all these other ways axSpA can affect the body, because seemingly unrelated symptoms can help clinch a diagnosis. For example, you might not think there’s any connection between back pain and psoriasis, or between your achy ankle and gastrointestinal upset.

Myth: Resting will ease pain and stiffness from axial spondyloarthritis

Fact: Rest may exacerbate or worsen your axSpA back pain

Axial spondyloarthritis is an inflammatory disease, which means the inflammation is a result of your immune system attacking your body’s own tissues. The inflammation causes axSpA pain is different than the aches and pains you feel after lifting something heavy or sleeping on a bad mattress. That type of pain is known as mechanical pain, which happens when there’s been a disruption in the way the components of the back (the spine, muscle, intervertebral discs, and nerves) fit together and move, according to the National Institute of Neurological Disorders and Stroke.

Since there are different causes of these two pains, it stands to reason that there are different approaches to managing the pain as well. With mechanical pain, for example, Dr. Bhatt says movement aggravates the nerve endings. If your pain is severe and you’re experiencing muscle spasms, Cleveland Clinic notes that your doctor may recommend short-term bed rest; otherwise over-the-counter pain relievers with some rest may be all you need. With inflammatory pain, however, “movement increases circulation which improves and washes out the painful cytokines,” explains Dr. Bhatt.

Learn how to tell if you’re back pain is inflammatory or mechanical here.

Myth: A simple test can confirm an axial spondyoarthritis diagnosis

Fact: No one test can be used to diagnose axSpA

The process for testing and diagnosing axSpA is far from simple. It’s not as though you can walk in, get a blood test, and find out you have axSpA, the way you can, say, with diabetes.

Research shows that it can take an average of almost seven years for someone to be diagnosed with axSpA, according to a recent review published in the journal Rheumatology. There are many possible explanations for this, starting with the fact that many people don’t know what axSpA is or suspect it as a cause of their symptoms.

“About 90 percent of adults will experience low back pain at some point in their lives,” says Dalit Ashany, MD, rheumatologist at Hospital for Special Surgery in New York City. “For physicians not familiar with [axial spondyloarthritis] or not actively thinking about it, they may not pursue the proper tests.”

But even if your physician is familiar with axSpA, or you go to a rheumatologist from the start, it still may take a while to get diagnosed because, according to Dr. Efthimiou, “there’s no diagnostic test or specific progression of axSpA.”

So how does your doctor determine if you have axSpA?  There are several tests they will perform, including:

• A physical exam in which your doctor will look for signs of spine fusion by testing your range of motion and chest expansion during breathing.
• Image testing, which will likely include X-rays and MRIs. The X-rays will be used to assess and potential fusion or damage to the joint and bones. The MRIs will help identify any swelling in the bone marrow and can pick up inflammation in the soft tissues in the bones and around the joints.
• Assessment of personal and family medical history
• Blood work to test for HLA-B27, a genetic marker for axial spondyloarthritis (more on that later, as well as inflammatory marker like CPR and ESR. 

Myth: A genetic test can reveal if you have axial spondyloarthritis

Fact: There is a genetic marker associated with axSpA, but you can have axSpA without the genetic marker

According to the American College of Rheumatology, HLA-B27 is the most common genetic marker associated with axSpA. It is a form of the HLA-B gene, which provides instructions for making a protein that sits on the surface of cells and helps your immune system determine which proteins it comes in contact with are from your own body and which are foreign and potentially dangerous, such as viruses and bacteria. It is unclear how HLA-B2 contribute to axSpA and other inflammatory or autoimmune disorders.

So if you test negative for HLA-B27 you’re in the clear, right? Wrong. Dr. Efthimiou says you can test negative for HLA-B27 and still have axSpA. Research has shown HLA-B27 occurs less in African Americans, for example, yet black people with AS have more severe disease, compared to white people or Latinos. And on the flip side, having the HLA-B27 gene doesn’t guarantee you will develop axSpA.

Bottom line: AxSpA is a complex disease that’s not caused only by one gene, but a mix of genetic, environmental, and other risk factors.

Myth: If you have non-radiographic axial spondyloarthritis, it will eventually develop into ankylosing spondylitis

Fact: Not everyone with non-radiographic axial spondyloarthritis develops ankylosing spondylitis

A 2019 study published in the journal Current Opinion in Rheumatology indicates up to 40 percent of patients with non-radiographic axial spondyloarthritis progress ankylosing spondylitis over two to 10 years. That means the majority of people do not develop structural changes in the SI joints and progress to AS, at least not quickly.

There’s no way to know for sure who will develop AS and who won’t, says Dr. Efthimiou. “There are patients who not only don’t progress, but the symptoms resolve on their own or the patient goes into remission.” Certain characteristics, however, may help predict worse outcomes, says Dr. Ashany. Risk factors for progression to AS include the male sex, elevated inflammatory markers, presence of the HLA-B27 gene and degree of inflammation seen on MRI of the SI joints. Still, even with these risk factors, not all patients progress, she says.

Myth: NSAIDSs won’t help treat axial spondyloarthritis

Fact: NSAIDs are the first line of treatment for axSpA, but they’re not your only option

Non-steroidal anti-inflammatory drugs, or NSAIDs, work to relieve pain and stiffness and reduce inflammation — and tend to be underused for treatment, says Dr. Bhatt. “Quite often, people think NSAIDs are not effective, but that’s not the case,” he says. In fact, NSAIDs (such as naproxen, ibuprofen, meloxicam, or indomethacin) remain the first line of treatment for axSpA, according to the American College of Rheumatology. That said, prolonged use of NSAIDs, especially in high doses, may come with side effects and risks. Some of the most commonly reported side effects, according to the Cleveland Clinic, include stomach and gut symptoms, like gas and bloating, stomach pain, and nausea. NSAIDs may also increase your risk of ulcers and bleeding in the GI tract, as well as heart and kidney problems, according to Harvard Health Publishing.

If NSAIDs aren’t effectively treating your symptoms, your doctor may suggest starting a biologic medication, such as a tumor necrosis factor (TNF) inhibitor or an interleukin-17 (IL-17) inhibitor. Examples of TNF medications include adalimumab (Humira), certolizumab pegol (Cimzia), etanercept (Enbrel), and golimumab (Simponi and Simponi aria), and infliximab (Remicade.

Examples of IL-17 inhibitors include ixekizumab (Taltz) and secukinumab (Cosentyx).

These medications target specific parts of your immune system to reduce inflammation and ease axSpA symptoms. They are given as either injections or infusions.

You should talk to your doctor about all the potential risks and side effects of your medications.

Myth: Only medications can ease axSpA pain

Fact: Physical activity is an important part of managing axSpA

“Many patients have an overoptimistic view of medications,” says Dr. Bhatt. “They don’t engage in physical activity, thinking meds will take care of all the pain. But medications need to be used in conjunction with physical therapy and home exercise.”

That’s because regular physical activity can help relieve pain through circulation, as Dr. Bhatt previously explained, and improve strength and flexibility. Exercises like yoga help to keep the spine mobile and build the core strength, which Dr. Efthimiou says is essential to maintaining your range of motion with axSpA.

Before beginning any new exercise program, talk to your doctor to make sure it’s appropriate and safe for you. Your doctor also may recommend working with a physical therapist, who can help strengthen your muscles and teach you techniques that protect joints from further damage.

Myth: You must follow a specific diet when diagnosed with axial spondyloarthritis

Fact: There’s no one diet for axSpA, but certain foods may help you feel better

“There are no well-done studies to show that any particular diet makes a difference in symptoms,” says Dr. Ashany. “However, if a patient tells me that if they eat a particular food they feel much worse, then I tell them to avoid that particular food.”

Eating anti-inflammatory foods, in conjunction with the right treatment, may offer additional benefits, adds Dr. Efthimiou. Consider the plant-based Mediterranean diet, which is high in fruits, vegetables, nuts, whole grains, fish, and healthy oils. And limit or avoid foods that cause inflammation, such as refined carbs, fired foods, red meats, and sugar-sweetened drinks.

Myth: Axial spondyloarthritis will leave you hunchbacked and in a wheelchair

Fact: Though axSpA can cause permanent damage and structural changes to the spine, this can be avoided

Ankylosing spondylitis is an inflammatory disease that, over time, can cause some of the small bones in your spine to fuse. This fusing makes the spine less flexible and can result in a hunched-forward posture. But AS doesn’t progress at the same rate or in the same way in everyone.

“Patients have variable courses,” says Dr. Ashany. “Some are never destined to develop progression or significant symptoms, and have quite a mild disease.”

And the outlook for patients with AS is much better today than it was even just, say, 15 years ago.

“These days we can do a lot to help prevent damage,” says Dr. Efthimiou. With a combination of medications, exercise, and lifestyle changes, you can manage symptoms and help delay or prevent progression. Earlier detection helps as well, Dr. Efthimiou says, noting that, “the earlier we can diagnose a patient, the more likely we can alter the natural pace of the disease and help prevent damage.”

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“Are others experiencing inability to get sulfasalazine???”

When a CreakyJoints member recently raised this concern with our Facebook community, the response was swift.

Anna L. shared that it took two months to get her prescription filled and she, “still couldn’t get the enteric-coated sustained release.” Katherine N. shared that her mail-order pharmacy has been unable to get it for three months and, “several local pharmacies say they have it on back order with no delivery date.”

“My rheum said it was national shortage,” said Kelli D.

According to the drug shortage database from the U.S. Food and Drug Administration (FDA), sulfasalazine (Azulfidine) has been in shortage since April 2020. But the issue seems to be getting worse more recently.

“Our clinic first began receiving messages from patients mid-last year that their pharmacies were unable to supply their regularly supplied sulfasalazine prescription, both immediate and delayed-release formulations,” says Norman Westervelt, PharmD, a rheumatology specialty pharmacist at the University of Alabama at Birmingham. “I would not say it was common enough then to be a major concern or warrant therapy change, but it did require a few patients to seek out another local pharmacy who might have had it in stock. More recently we have had patients who are experiencing much more difficulty.”

Walgreens also told CreakyJoints that there is a large supply constraint on this medication that is affecting both versions of sulfasalazine (regular and delayed-release).

This news may be alarming and unsettling for those who take sulfasalazine to manage their inflammatory arthritis, inflammatory bowel disease, or another chronic condition.

Here is what you need to know about the shortage so you can talk to your health care team — including your doctor and pharmacist — to ensure you’re managing your chronic condition as well as possible.

What Is Sulfasalazine?

According to the American College of Rheumatology, “sulfasalazine is considered a disease-modifying anti-rheumatic drug (DMARD). It can decrease the pain and swelling of arthritis, prevent joint damage, and reduce the risk of long-term disability.”

Sulfasalazine (Azulfidine) may be prescribed for rheumatoid arthritis (RA), axial spondyloarthritis (axSpA) or ankylosing spondylitis (AS), psoriatic arthritis (PsA), inflammatory bowel disease (IBD), and some other conditions. It helps lower inflammation in the body. It may be taken alone or with other disease-modifying drugs, such as methotrexate and/or hydroxychloroquine.

The medication comes in 500 mg tablets and people can take up to 3,000 mg a day (six pills). There are two kinds of sulfasalazine:

• Regular
• Delayed-release/enteric-coated

The delayed-release version may be used to help reduce some of the gastrointestinal-related side effects, such as nausea and stomach upset, that some patients experience.

Sulfasalazine is considered a slower-acting DMARD; it takes time to build up in your system and start working. It can take up to two to three months to see an improvement in symptoms after starting the medication, according to ACR.

What to Know About the Sulfasalazine Shortage

According to information on the FDA drug shortage website, some versions of sulfasalazine are expected to be out of shortage by July 2021; others not until Q4 2021.

Greenstone, part of the pharmaceutical company Viatris and formerly a subsidiary of Pfizer, distributes both regular and delayed-release versions of sulfasalazine. However, both are manufactured by a third party. The company shared the following information with CreakyJoints in a statement.

“We are working very closely with the manufacturer to improve the supply of both sulfasalazine IR [immediate release] and DR [delayed release] tablets. We anticipate receiving intermittent supply from the third party through the remainder of the year. While we expect to be in an improved supply position in the fourth quarter of 2021, in the interim, we encourage patients to speak to their health care provider about alternatives if they are experiencing an inability to access the product.”

Teva Pharmaceuticals manufactures only the regular version of sulfasalazine, though it is unclear whether or to what degree the medication from this company is in shortage. We reached out to Teva but did not hear back by the time this was published.

We will update this article with new information as we receive it.

What to Do If You Have Trouble Getting Sulfasalazine

First of all, don’t panic. From what experts and patients are telling us, the sulfasalazine shortage seems to be spotty. Some patients are experiencing it; others are not. Among those who are experiencing it, the supply issues are inconsistent — sometimes the drug is unavailable and other times it can be located.

The most important thing to remember is that you want to avoid disruption to your treatment, which could cause disease flares or an increase in disease activity. Because sulfasalazine is slow-acting — meaning, it takes a while to build up in your system — this likely would not happen overnight, but you can partner with your health care team to prevent this. Here are some options.

Call around to get sulfasalazine from a different pharmacy. If you’re told that your pharmacy is out of the medication, the first thing to do is shop around. If your pharmacy is part of a chain, like Walgreens or CVS, they can try to see if the medication is at another nearby location. You can also try local pharmacies. “I was having trouble at Walmart but am able to get it at another,” shared CreakyJoints member Barbara Q on Facebook.

Switch to the regular version. Some CreakyJoints members are reporting that they can get regular sulfasalazine but not the delayed-release version. If stomach-related side effects are not a problem for you, see if your doctor or pharmacist can switch you to the regular version. “My pharmacy had to change my enteric-coated to non-coated because of supply problems,” Ambra D. shared on Facebook.

However, this may not work if the regular version also becomes in short supply. “I first had to switch off extended-release and now can’t get at all,” Leslie B. told us.

If you can access sulfasalazine, ask for a larger supply. The medication is typically prescribed in 30-day doses, but depending on your insurance plan, you could get up to a 90-day supply. If sulfasalazine is available for you now, consider getting a longer-term supply so you don’t have to worry as much about accessing it over the next few months.

Talk to your health care provider about adjusting your dose. If your disease is stable, you can talk to your doctor about lowering your dose of sulfasalazine to make your supply last longer. For example, if you currently take 2,000 mg a day (two pills twice a day), you could possibly taper down to 1,000 mg a day (two pills, once a day). Or you might be able to take the medication every other day instead of daily. “If you’ve been stable on this drug for years and your doctor recommends it, you may not notice a difference in lowering the dose,” says Dr. Westervelt.

Never make a change to your treatment plan, however, without discussing it with your doctor.  “You don’t want to stop taking something cold turkey — you never know when you could have a flare-up,” says Juan Maya, MD, a rheumatologist in West Palm Beach, Florida. “Contact your provider to see whether it makes sense to taper your dosage or try an alternative treatment.” (Dr. Maya is one of the rheumatologists who provides care at the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic, which serves South Florida arthritis patients who cannot afford treatment, providing regular and free rheumatology care.)

Switch to a different medication. If difficulty accessing sulfasalazine has become a standing issue for you, consider this an opportunity to discuss trying a new therapy with your doctor.

“Sulfasalazine is a first-line treatment. These inflammatory diseases can be progressive and ‘overpower’ this medication over time,” says Dr. Westervelt. “Switching to something else could ultimately benefit the patient.”

Karen B., who was having issues on and off for months accessing sulfasalazine, said on Facebook that her “rheumy is switching me to a biologic.”

Two patients of Korey Ullrich, MD, a rheumatologist in private practice in South Florida, decided to switch to methotrexate because of difficulty accessing sulfasalazine. Dr. Ullrich also provides care at the John Whelton Arthur Virshup CreakyJoints South Florida Arthritis Clinic.

The bottom line: “The best thing to do when your drug is in short supply is to be proactive,” says Khadijah Khan, CPhT, Manager, Specialty Health Solutions for Walgreens. “Communicate with your pharmacy and your health care provider and make sure everyone is doing everything they can to make sure you stay on your therapy or find an alternative therapy.”

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Inflammatory arthritis — which includes conditions such as rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA), and gout — has long been associated with an increased risk of cardiovascular disease. In short, these forms of arthritis cause systemic inflammation that may damage your circulatory system.

While that damage can certainly put you at risk for a heart attack, the trouble doesn’t stop there. Changes in your vessels and arteries may also increase your risk of having a stroke (also known as a brain attack), which occurs when blood flow to your brain is impeded thanks to a blood clot or burst blood vessel.

This information isn’t brand new. In 2016 researchers writing in the journal Stroke concluded that having  RA or systemic lupus erythematosus (SLE) can increase a person’s risk for stroke by 60 to 100 percent compared to the general population. In recent years the evidence connecting stroke to rheumatic diseases has continued to mount.

To summarize the latest evidence, a group of scientists from China analyzed 52 international studies on stroke and rheumatic disease, culminating in “the most comprehensive systematic review and meta-analysis of published cohort studies to evaluate the stroke risk in arthritis.” Their findings were published in the journal PLOS ONE.

As the authors pointed out, the studies included in this analysis were observational, so they can’t prove that having inflammatory arthritis directly causes an increased stroke risk. But the researchers attempted to remove other possible confounding factors through their study selections. For starters, they only analyzed studies that had already adjusted for age and biological sex. They also focused heavily on studies that adjusted for at least one other traditional stroke risk factor, such as hypertension, diabetes, smoking, alcoholism, obesity, physical inactivity, and high cholesterol.

Overall, the researchers found that people with arthritis had a 36 percent higher stroke risk compared to the general population. When analyzing the risk of stroke by type of arthritis, researchers found the following:

• Rheumatoid arthritis patients’ odds of being at risk of a stroke were 1.38 times higher than the general population.
• Psoriatic arthritis patients’ odds of being at risk of a stroke were 1.33 times higher than the general population.
• Ankylosing spondylitis patients’ odds of being at risk of a stroke were 1.49 times higher than the general population.
• Gout patients’ odds of being at risk of a stroke were 1.40 times higher than the general population.

Though osteoarthritis (OA) is not a form of inflammatory arthritis, researchers also looked at the stroke risk for people with osteoarthritis. They found that OA patients had the same risk for stroke as the general population.

The authors also found that younger patients were at greater risk than middle-aged aged and older ones. That’s particularly notable because, in general, getting older raises your stroke risk.

“As young people ordinarily have fewer traditional [risk factors for stroke], we speculate that arthritis is an independent risk factor,” they wrote.

The researchers acknowledged that larger studies are needed to “explore the effects of different types of arthritis on stroke.” Additionally, they wrote that further studies are needed to identify improved treatments for different types of arthritis in relation to stroke risks.

Although the link between inflammatory arthritis and stroke risk can be alarming, patients are not powerless. Earlier studies have suggested that there are many ways to reduce this threat. Keeping your rheumatic condition well-controlled with biologic and/or traditional disease-modifying antirheumatic drugs should help by taming inflammation. Controlling other stroke risk factors, such as blood pressure and cholesterol by making lifestyle changes and, in certain cases, taking medication, is also important.

Rheumatic disease patients who are concerned about stroke risk should avoid smoking and use the lowest possible effective dose of corticosteroids and non-steroidal anti-inflammatory drugs.

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If you live with axial spondyloarthritis (axSpA), you likely have several questions about the COVID-19 vaccine — and what effects it could potentially have on your condition.

Here’s the bottom line: Most rheumatologists and public health experts recommend you get vaccinated against COVID-19 if you have axial spondyloarthritis. The American College of Rheumatology states that autoimmune and inflammatory rheumatic disease patients are at higher risk for COVID-19 hospitalization and worse outcomes than the general population, and should receive the vaccine when they’re eligible.

There are no known contraindications to the COVID-19 vaccine (reasons to not get it) for axial spondyloarthritis patients.

“I encourage all my axial spondyloarthritis patients to get COVID-19 vaccine as soon as it is available to them,” says Samar Gupta, MD, FACR, a rheumatologist at Michigan Medicine. “These patients are often on immunosuppressive medications, which may make them susceptible to COVID-19.”

Axial spondyloarthritis (axSpA) is a form of inflammatory arthritis that causes pain predominantly in the lower back and sacroiliac joints, where the spine connects with the pelvis (though it can cause pain in other joints too). AxSpa is an umbrella term that includes two subtypes:

• Non-radiographic axial spondyloarthritis (nr-axSpA)
• Ankylosing spondylitis (AS)

Patients with axial spondyloarthritis who experience structural damage in their spine or sacroiliac joints that can be seen on X-rays have what’s known as radiographic axSpA (r-axSpA) — or ankylosing spondylitis. Those who do not have these structural changes but have axSpA based on symptoms and other clinical features have non-radiographic axial spondyloarthritis (nr-axSpA).

Here’s everything you need to know about getting the COVID-19 vaccine if you have axial spondyloarthritis.

Is It Safe to Get the COVID-19 Vaccine with Axial Spondyloarthritis?

Yes, it is safe and encouraged to get the COVID-19 vaccine if you have axial spondyloarthritis. Of course, it’s important to discuss the COVID-19 vaccine with your doctor if you have questions, as everyone’s case is unique — but most experts recommend that axial spondyloarthritis patients receive the vaccine as soon as possible.

In fact, it may be particularly important to get the COVID-19 vaccine if you have axSpA, since immunosuppressive drugs may make you more likely to experience severe disease. Adults of any age who are immunocompromised may have a higher risk of severe illness from COVID-19 and may remain infectious for a longer period of time, per the U.S. Centers for Disease Control & Prevention. (Research is mixed and ongoing; current data suggests coronavirus complications may have more to do with age, other comorbidities, and taking steroid medications than axSpA alone.)

Axial spondyloarthritis is considered a combination of autoimmune and inflammatory disease. Having an autoimmune disease in and of itself can decrease your body’s ability to ward off infection. That’s because your body can become so preoccupied with mistakenly attacking your own cells that it doesn’t fight off invaders as effectively as it should.

Many patients who take medications that affect immune system function are concerned that certain vaccines could give them the virus. This could theoretically occur with vaccines like the MMR vaccine for measles and mumps, which is a “live” vaccine. That means it is a weakened form of the virus intended to cause a harmless infection that your immune system rapidly eliminates.

However, none of the COVID-19 vaccines currently authorized in the U.S. — Pfizer, Moderna, and Johnson & Johnson — are live vaccines. You cannot get coronavirus from the COVID-19 vaccine. It is safe for people with axSpA, including those who take immunosuppressant medication.

Having axial spondyloarthritis or taking medications to treat it is not a reason to skip getting the vaccine. According to the U.S. Centers for Disease Control and Prevention, the only contraindications to receiving the COVID-19 vaccine are:

• Severe allergic reaction (e.g., anaphylaxis) after a previous dose or to a component of the COVID-19 vaccine.
• Immediate allergic reaction of any severity to a previous dose or known (diagnosed) allergy to a component of the vaccine. See the ingredients in each vaccine here.

If you have had an immediate allergic reaction to any other vaccine or injectable therapy — like injectable biologics — it is a precaution but not a contraindication to receiving the vaccine, per the CDC. However, you will need to be monitored for 30 minutes after getting the vaccine rather than 15 minutes. For more information, refer to our full guide: Can You Safely Get a COVID-19 Vaccine If You Have a History of Allergic Reactions?

Will the COVID-19 Vaccine Be Less Effective if You Have Axial Spondyloarthritis?

How the COVID-19 vaccine works in rheumatic disease patients is an ongoing area of research, and experts are currently investigating whether or not these individuals have a less robust response to the vaccine (and thus less protection from the coronavirus).

In its guidance about the COVID-19 vaccine, the American College of Rheumatology notes that the expected response to COVID-19 vaccination for many autoimmune and inflammatory rheumatic disease patients on systemic immunomodulatory therapies is likely to be reduced compared to the general population, but this is not a reason to skip the vaccine.

Even if you have a somewhat more reduced response to the vaccine than another individual, some protection from the virus is better than none — and could help prevent hospitalization or even death.

“In recent studies, it has been shown that SARS-CoV-2 mRNA vaccines [like those from Pfizer and Moderna] lead to development of antibodies in immunosuppressed patients with chronic inflammatory conditions, including spondyloarthropathies like ankylosing spondylitis, without considerable side effects or induction of disease flares,” says Dr. Gupta.

That said, it’s still important to follow mitigation efforts after getting the vaccine. For more information, here’s what immunocompromised people should know about the recommendations for fully vaccinated people.

Are There Any Specific Vaccine Side Effects to Be Aware of with Axial Spondyloarthritis?

Some effects of the COVID-19 vaccine could resemble those of an axSpA flare. Monitor your symptoms before and after getting the vaccine, and talk to your doctor if you have any questions or concerns.

Symptoms of axial spondyloarthritis include the following, per the Mayo Clinic:

• Pain and stiffness in your lower back and hips (especially in the morning or after periods of inactivity)
• Neck pain
• Fatigue
• Pain in other parts of the body such as:
  • The places where your tendons and ligaments attach to bones, mainly in your spine, but sometimes along the back of your heel
  • The cartilage between your breastbone and ribs
  • Your hip and shoulder joints

Generally, these symptoms can be distinguished from side effects of the vaccine, though some may overlap. The CDC lists the following common side effects of the COVID-19 vaccine:

• Pain on the arm where you got the shot
• Redness on the arm where you got the shot
• Swelling on the arm where you got the shot
• Tiredness
• Headache
• Muscle pain
• Chills
• Fever
• Nausea

“The pain and the fatigue from the COVID-19 vaccine can overlap with axial spondyloarthritis symptoms, but the vaccine symptoms tend to be more widespread and usually not localized to singular joints,” says rheumatologist John Miller, MD, Instructor of Medicine in the Division of Rheumatology at Johns Hopkins Medicine. “Pain from the vaccine can come on fairly quickly, lasts a couple days, and then goes away as quickly as it started.”

For more information on distinguishing disease flares from vaccine side effects, here’s our guide on what to do after getting a COVID-19 vaccine if you’re immunocompromised or have an autoimmune condition.

Could the COVID-19 Vaccine Cause a Disease Flare?

Although the ACR guidance notes that there’s a chance for autoimmune and inflammatory rheumatic disease flare or disease worsening after COVID-19 vaccination, experts agree it’s not very likely — and that the benefit of getting vaccinated outweighs the risk.

“There have been a couple of reports in which we can see flares develop afterward, but generally speaking, those are few and far between,” says Dr. Miller. “From a public health perspective, we still think it’s better to get vaccinated. And it’s definitely safer to get vaccinated than to have a COVID-19 infection.”

What’s more, disease activity or severity is not a contraindication to getting the vaccine, according to the ACR guidance. In other words: If your axial spondyloarthritis disease activity is active, you can still get the vaccine.

If you have any concerns about getting the vaccine during a disease flare, talk to your doctor.

In extreme cases — say, you’re hospitalized or taking a very high level of steroids that you’ll be able to taper off of soon — your doctor may recommend you wait to receive the vaccine to improve your body’s response. Ideally, you would have the opportunity to get to lower disease activity, transition to a non-steroid therapy, and decrease your dosage of steroids under your doctor’s guidance before receiving the COVID-19 vaccine (which should then take place as soon as possible).

Do You Need to Modify Axial Spondyloarthritis Medications Before or After Getting the Vaccine?

It’s not likely: The ACR guidance does not recommend holding any biologics used for axial spondyloarthritis before or after receiving the vaccine.

“If you are taking a medication for axial spondyloarthritis, you should discuss the timing of COVID-19 vaccination with your rheumatologist,” says Dr. Gupta. “But it is recommended, in most cases, that patients who are to receive a COVID-19 vaccine continue their biologic or oral therapies for axial spondyloarthritis.”

The ACR does recommend that a few certain medications be temporarily stopped, or that the vaccine should be timed around dosing schedules, in order to help improve vaccine effectiveness — but these medications are not commonly used to treat axial spondyloarthritis. They include:

• Methotrexate
• JAK inhibitors (ex: Xeljanz, Olumiant, Rinvoq)
• Abatecept (Orencia)
• Rituximab (Rituxan)
• Cyclophosphamide infusions

Questions About Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

Many axSpA patients regularly take NSAIDs, such as ibuprofen, naproxen, and prescription versions, to treat their symptoms. They are considered a first-line treatment for axSpA.

At the same, time, many people take NSAIDs to treat vaccine-related side effects, such as fever and pain. But the CDC has recommended that people do not take NSAIDs before vaccination for the purpose of trying to prevent vaccine side effects, though they can take them after to treat side effects.

“There have been questions of whether NSAIDs may reduce vaccine response, so current recommendations are to avoid using them as a pre-medication,” says Dr. Gupta. “No specific studies of the use of acetaminophen or NSAIDs have been done to examine any impact on COVID‐19 vaccine immunogenicity [effictiveness] in adults.”

But if you take NSAIDs regularly to treat axSpA, should you avoid taking them before getting the vaccine? The answer: Talk to your doctor about whether or not you should hold them temporarily — and if so, for how long.

“I always try to avoid NSAIDs if possible around the vaccine, but I’m not sure if there’s striking data that says NSAIDs have to be discontinued for prolonged periods of time,” says Dr. Miller. “If someone is using it on a regular basis, there may not always be a justification for holding NSAIDS. It’s an individual decision.”

A March 2021 study published in the Journal of Virology found that NSAID treatment reduced the antibody production in response to SARS-CoV-2 infection in mice. Antibodies are proteins that the immune system uses to protect you from viruses like SARS-CoV-2, and they are created when you get infected with COVID-19 or receive the COVID-19 vaccine. However, much more research is needed to determine what the results of this research might mean for humans and the COVID-19 vaccine.

Until more clinical guidance is available, the decision about whether or not to hold routine NSAIDs before or after your COVID-19 vaccine will need to be made on a case-by-case basis with your doctor.

Are People with Axial Spondyloarthritis at Greater Risk for COVID-19?

This is an ongoing area of research.

Those with axial spondyloarthritis don’t appear to have a higher risk of contracting COVID-19 than the general population. That said, some data shows that having inflammatory rheumatic disease could lead to a higher risk of serious complications from COVID-19 — and immunosuppressive medications may also affect your risk of contracting or getting severely ill from COVID-19.

“Existing data suggests that patients with spondyloarthropathies have similar rates of COVID-19 infection as the general population,” says Dr. Gupta. “The likelihood of poor outcomes from COVID-19 is driven by risk factors associated with axial spondyloarthritis, such as concurrent illnesses including chronic heart, lung, or kidney disease and metabolic disorders such as diabetes and obesity.”

“We do worry that untreated moderate to severe arthritis does increase the risk of worse outcomes compared to an individual who does not have a rheumatic disease,” says Dr. Miller.

For more information, check out this summary of research on inflammatory arthritis and rheumatic disease patients and their risk for COVID-19 complications.

When Can You Get a COVID-19 Vaccine with Axial Spondyloarthritis?

It will be up to your state’s guidelines. The ACR has advocated for autoimmune and inflammatory rheumatic disease patients to be prioritized for vaccination before the nonprioritized general population of similar age and sex, due to their higher risk for severe outcomes from COVID-19.

Either way, you likely don’t need to wait long: The White House recently declared that all adults in the United States will be eligible for vaccination no later than May 1, and many states are making the vaccine available to all adults sooner.

To make this possible, government officials are increasing the number of locations where people can get vaccinated (including community health centers, pharmacies, and community vaccination centers), expanding the professionals who can administer shots (including dentists, optometrists, podiatrists, veterinarians, medical students, and more), and providing tools to make it easier to find vaccines (like websites and a call center), per The White House.

Public health officials and rheumatologists advise getting the first vaccine that becomes available to you.

“The important thing is that people are moving forward with getting vaccinated,” says Dr. Miller. “We’re really seeing that patients tolerate the vaccine well and it’s such a positive step to some normalcy. We’re not there yet, but at least we’re heading in the right direction.”

Once you get your vaccine, you still need to be careful to follow standard mitigation efforts. For more information, here’s what immunocompromised people should know about the CDC recommendations for fully vaccinated people.

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