The American College of Rheumatology (ACR) strongly recommends consistent exercise for people with rheumatoid arthritis over no exercise and conditionally recommends aerobic, aquatic, resistance, and mind-body exercises. These recommendations are found in the first-ever ACR Guideline for Exercise, Rehabilitation, Diet, and Additional Integrative Interventions for Rheumatoid Arthritis. 

This likely doesn’t come as a surprise with numerous studies demonstrating the benefits of exercise for those of us with RA, as well as other types of inflammatory arthritis. Exercise has been found to reduce stress, fatigue, brain fog, inflammation, and body fat.  

But how do you know which type of exercise is best? And what about frequency, intensity, and duration? ACR has not formally defined this criteria, but instead, recommends that exercise should be tailored to each patient based on their:  

• Disease trajectory 
• Capabilities 
• Access 
• Other health conditions 

In other words, there is not one best exercise for all and it’s up to you to find what works for you. To help get you inspired to incorporate movement into your overall treatment plan, we’ve asked several people with inflammatory to share their routines.  

There’s Not One Best Exercise for All

The following people are all living with inflammatory arthritis  — but how and when they exercise varies immensely.  

Sara’s Routine: Fitness Classes 5-6 Days Weekly

Sara King-Dowling attributes sticking to a routine exercise program as a key factor in keeping her ankylosing spondylitis (AS) symptoms at bay. Her routine consists of attending group fitness classes five to six days each week. These classes incorporate a variety of cardio and resistance-based exercises targeting the whole body to improve endurance and strength.  

The workouts change every day, but some common movements include:  

• Romanian deadlifts 
• Kettlebell swings 
• Chest presses 
• Cycling 
• Jumping jacks 
• Burpees 

Exercise is a vital component of Sara’s wellness plan, and she recently documented her success in a Patient Perspectives poster for the American College of Rheumatology (ACR) convergence 2022 entitled “Exercise as a Supportive Treatment for my Ankylosing Spondylitis.”

If your exercise routine does not include much cardio or strength-training, you are not alone. Even people with similar conditions have their own unique set of attributes, including fatigue and pain levels, muscle strength, flexibility, stamina, and disability, which may hinder certain types of exercise.  

Elisa’s Routine: Hiking, Water Therapy, Stretching

Like many, Elisa Comer’s exercise routine changes based on good and bad days with RA. Her favorite activity: hiking an easy trail. Other exercises in her rotation include: 

• Warm water therapy 
• Stretching 
• Using gentle resistance bands 
• Floor exercises with a firm foam roller (to ease her back pain) 

Ashley’s Routine: Dance Class, Strength-training, Swimming, Walking

Ashley Newton was once a distance runner, obsessed with beating her best time, longest distance, and number of competitive events. Before being diagnosed with RA, her goal was centered on cardio, weight management, and personal growth.  

Today her routine changes based on how her body and joints feel.   

On good days, Ashley enjoys: 

• Hip-hop dance class 
• Barre with modified moves 
• Strength-training with light free weights 
• Swimming  
• Walking (for more than 30 minutes at varying speeds) 

When her body is not feeling as well, her activity includes: 

• Short walks at a slower speed 
• Gentle stretching with deep breathing 
• Physical therapy (PT) exercises 
• Walk laps in the pool 

 Adapting to New Forms of Exercise

Lauren Scholl’s career as a personal trainer requires her to bend over and pick up weights as she demonstrates exercises. A reverse lunge, for example, involves stepping back and bending the toes. “There are days where I can’t do it. I can’t demo that for someone,” she shares on the Psoriatic Arthritis Club Podcast.  

Lauren’s psoriatic arthritis symptoms make it challenging to demonstrate exercises for clients like she did in the past, so she demonstrates using her words. “I’ve tried to learn ways to work around it, I’ve changed my training style,” Lauren explains.  

For Lauren, like so many others with inflammatory arthritis, it’s about finding a good balance. “If I am flaring, it is hard, and I have to like, really listen to my body and know what I can handle.”

Find What Works for You

In the past, my own exercise level varies based on how I feel and my schedule — but the new ACR guidelines have redirected me toward more consistent exercise.  

When I feel unmotivated to exercise, I remember how great I feel after a good walk. If I step outside and walk around my neighborhood or on a path at the park, my energy level increases while my fatigue level decreases. On some days, I can hike on rough terrain up and down hills and other days I can only walk on paved surfaces on flat ground.  

It’s important to keep in mind that each person is unique. Even if we have similar conditions, there will always be differences between us all. A person’s pain and fatigue levels may be different and they may feel pain in a different part of the body. Since we can’t generalize how each person feels and reacts to treatment, we can’t generalize how each person should engage in exercise.  

When I see someone with a chronic condition on social media showing how they ran a marathon or participated in Zumba classes, I cheer them on, but I avoid comparing myself to them because everybody is different.  

Getting Started with Arthritis-Friendly Exercise

A good first step is talking to your doctor about your desire to exercise — and how you can approach movement without overtaxing your joints. In the meantime, here are some patient recommendations for getting back into a daily exercise routine. 

• Work with a physical therapist. A PT can help you choose exercises that do not cause additional pain or damage. 
• Think slow and steady. Do a few minutes of low-impact exercise and then lengthen the duration and intensity as your body becomes accustomed to the movement.   
• Consider arthritis-friendly aids. Wearing hand, wrist, or back braces or applying kinesiology tape prior to exercise can help support the joints and muscles.  
• Find the fun. Do something you love to do like biking, walking, stretching, tai chi, yoga, or swimming. Get more ideas on how to make exercise with arthritis easier. 

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

Imagine not being able to communicate effectively with your doctor, being misunderstood, and even devalued? The voices of patients matter in the creation of programs, services, and health care delivery — and yet often the patient voice is unheard or misunderstood, especially when language barriers and cultural barriers exist.   

“We know from the literature and clinical experience that there are significant disparities in outcomes for Latinx rheumatoid arthritis patients,” says study author Anna Balakrishnan, LMSW, Social Work Researcher in the Inflammatory Arthritis Support and Education Programs, at Hospital for Special Surgery. Delays in receiving a diagnosis from a rheumatologist combined with communication gaps as well as cultural lens contribute to Hispanic/Latino(a)/Latinx patients with RA experiencing increased pain, fatigue, disability, and depression.   

Balakrishnan and her colleague Adena Batterman, LCSW, Senior Manager, Inflammatory Arthritis Support and Education Programs and Patient-Centered Qualitative Research, along with researchers from the Global Healthy Living Foundation, set out to take a closer look at these communication barriers and better understand the unique education and support needs of Hispanic/Latino(a)/Latinx patients with RA.  

“Patients benefit when providers customize care for their patients based on their needs,” says Balakrishnan. “We hope that the information learned through this study can help providers approach care in culturally tailored ways.” 

About the Study

To better understand the patient perspective, researchers interviewed 17 Hispanic RA patients via Zoom – in either English or Spanish (depending on their preference). The questions focused on the impact RA has on their emotional health and family life as well as the level of support they have (and need), cultural influence of medication and illness beliefs, and their main barriers to care. Interviews were semi-structured permitting patients to share freely via a video call.  Recruitment for patients is still in progress.

“Extensive research supports the need to include patients and patient input in the development of these types of programs early in the process,” says Batterman. “This study is an effort to incorporate and honor patient voices to inform all stages of this program’s development.”  

After the interviews, the researchers analyzed the preliminary data and identified nine major themes.  

1. RA’s impact on emotional health (connected to pain, loss of roles and abilities, stress) 
2. Willingness to seek mental health care 
3. Medication and illness beliefs affecting patients’ approach to RA management 
4. Essential features of a good patient-provider relationship, such as trust, kindness, and consistency 
5. Value of participating in a support group 
6. Impact on family 
7. Patient experience of systemic barriers to care  
8. Varied preferences on structure and format 
9. Varied preferences on outreach strategies 

The preliminary study findings were presented at the 2022 American College of Rheumatology Convergence (ACR).   

What’s Next

“We’re looking forward to final data analysis…and incorporating these findings into the development of our program and sharing these findings with the rheumatology community,” says Balakrishnan. “This program will join our successful models of support and education interventions for people living with RA that are grounded in evidence-based practice and patient perspective.” 

As researchers continue data analysis, they plan to provide culturally tailored support and disease-specific education for Latinx RA patients to support their self-management in ways most relevant to their experience, adds Batterman.  

Be Part of Research with ArthritisPower

Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.

For much of the pandemic, long COVID has been rife with mystery. Broadly described as COVID-19 symptoms that last weeks or even months after infection, long COVID piqued the interest of researchers.  

Now, a flood of data is changing our understanding of it, related symptoms, and potential treatments, according to Leonard H. Calabrese, DO, Head of Clinical Immunology in the Department of Rheumatologic and Immunologic Disease at Cleveland Clinic, who gave a presentation on the topic at the ACR Convergence 2022.  

“The whole field of COVID-19 has been very chaotic in terms of the flow of scientific information,” says Dr. Calabrese. “From the beginning, less than three years ago, there’s been over 300,000 articles that have been published on COVID-19 — and that’s just in peer-reviewed citations.”  

Because the research is emerging so quickly, much of it comes out in pre-print studies, or those that haven’t been peer reviewed yet. There are many tens of thousands of these articles being published.  

This poses both exciting possibilities for what we’ll learn about long-haul COVID in the months and years ahead, but also challenges. Here’s what you should know about the current state of research around long COVID, plus what it means for you if you’re living with an underlying condition like axial spondyloarthritis, psoriatic arthritis, or rheumatoid arthritis.

Determining a Clear Definition for Long COVID

One hurdle that researchers have faced when studying long COVID is that there’s not one widely accepted definition for it. In fact, Dr. Calabrese notes that there are at least 50 (and maybe more than 200) definitions that have been attributed to long COVID.  

“The problem is that with long COVID, many of the symptoms in isolation like fatigue, sleep disturbances, headache, bodily pain, or neurocognitive complaints are very common in the general population,” says Dr. Calabrese. “It’s a question of when it warrants the diagnosis of long COVID. 

This is a matter of refining the definition of long COVID. As just one potential example, tiredness associated with long COVID might not just be about feeling sleepy. Instead, it may be tiredness that’s not restored by restful sleep and that’s exacerbated by daily activities that wouldn’t bother someone ordinarily.  

Similarly, the timing of symptoms are important in defining long COVID. It may feel cut-and-dry enough if someone develops new symptoms after being infected with COVID-19, but for many people, certain symptoms existed before infection and are exacerbated after infection.  

Researchers also aren’t clear on how the diagnosis of long COVID may differ based on the combinations of symptoms patients have. For example, they don’t yet understand if there’s a difference between people who have brain fog, fatigue, and headache versus those who have brain fog, musculoskeletal pain, and breathlessness after COVID-19.   

“Then there’s the question of how we capture all of this data,” says Dr. Calabrese. “There have been efforts to capture it by reviewing people’s medical records. But if you have a medical record, that means you have health care and that you went to a practitioner and they coded your complaint accurately — so it’s a very weak tool for most long COVID complications.” 

Another way to gather data is to give patients questionnaires, but if someone had COVID-19 a year or two ago, they may not accurately recall all the details of their symptoms.  

To solve this, there are several large studies underway in the United States and worldwide that are prospective, meaning they look at people before they get COVID-19 and carefully measure data before and after COVID-19 infection. Once this research emerges, experts will have more tools to measure what signs and symptoms may be consistent among those with long COVID.  

“That will be the gold standard, but as anyone would recognize, that’s going to take a long time,” says Dr. Calabrese.  

One more important note to keep in mind: Generally, long COVID is known as persistent symptoms after COVID that don’t have an adequate pathologic basis that we can clearly understand. There’s another large group of patients who have had severe COVID-19, often in the hospital. These patients may experience blood clots, strokes, lung scarring, heart failure, and other complications after this severe form of COVID-19 infection. These are two different branches of post-acute sequelae COVID-19 that are often confused.  

“It may be that there isn’t a single definition that encompasses everything,” says Jeffrey Sparks, MD, MMSc, Assistant Professor of Medicine at Harvard Medical School and a rheumatologist at Brigham and Women’s Hospital in Boston. “There are different flavors of long COVID that may or may not be present in a given individual. Each of those might be driven by different pathologic factors, so I think it’s going to be a heterogeneous [diverse] entity that has many different manifestations and gradations of severity and duration.”  

The Data We Have Now and What’s Emerging

Researchers like Dr. Sparks are hopeful that research will continue to focus on long COVID, including its impact on rheumatic patients. Even though a flood of research is being published now, he acknowledges that some interest may wane as the pandemic enters a more manageable phase. 

“I think at the beginning of the pandemic, there were many researchers interested in how severe acute COVID was for our patients, so it was really impressive to see so much interest and we learned a lot quickly,” says Dr. Sparks. “Now, to me, it seems like a lot of people have gone back to their day jobs now, which is also important work.”  

Time and money restraints can limit the amount of research that’s possible and many researchers recognize how difficult long COVID is to study. However, researchers like those in Dr. Sparks’ group are still researching long COVID, specifically when it comes to its impact on rheumatic patients. 

There are three foundational papers from his group published this year that will help inform future research on long COVID for rheumatic patients:  

• In a study published in Seminars in Arthritis and Rheumatism, researchers surveyed patients with systemic autoimmune rheumatic diseases (SARDs) after they had confirmed COVID-19. The median time to COVID-19 symptom resolution was 25 days and prolonged symptom duration of 28 days or more occurred in 45 percent of patients. This may indicate that participants with SARDs are particularly vulnerable to persistent worsening quality of life (including more pain and fatigue), even beyond the initial infection period. 
• In a study published in RMD Open, researchers analyzed data from the COVID-19 Global Rheumatology Alliance Vaccine Survey (April 2, 2021 to October 15, 2021) to identify people with SARDs who reported test-confirmed COVID-19. They found that most people with SARDs had complete symptom resolution by day 15 after COVID-19 onset. However, about one in four experienced COVID-19 symptom duration of 28 days or longer — while one in 10 experienced symptoms for 90 days or longer. 
• In a study published in the Annals of the Rheumatic Diseases, researchers surveyed patients with SARDs from a large healthcare system who had been infected with COVID-19. Vaccinated patients with SARDs were less likely to experience lingering symptoms of COVID-19 compared with those not fully vaccinated. While the researchers note that they cannot rule out the possibility that findings may be due to varying long COVID risk from different SARS-CoV-2 variants, these findings support the benefits of vaccination for patients with SARDs. 

What’s more, other studies looking at treatments for COVID-19 and long COVID specifically may provide answers around how to ease long-term symptoms.  

“I’m very interested right now in therapeutic trials, which have grown from less than a handful a year ago to scores of trials launching right now,” says Dr. Calabrese.  

For instance, researchers are planning to measure the impact of Pfizer’s Paxlovid (nirmatrelvir and ritonavir) on long COVID next year in a clinical trial enrolling 1,700 adults, as part of the National Institutes of Health’s $1.15 billion RECOVER program, per The Washington Post. However, results are not expected until 2024. 

“That will be very exciting, because one of the leading hypotheses in long COVID is that there is some form of persistent viral infection that has been under the radar,” says Dr. Calabrese.  

A November 2022 pre-print study found that people treated with Paxlovid were less likely to experience several key symptoms associated with long COVID.  

There are also a number of other trials looking at alternative approaches to long COVID, such as nutraceuticals. “I’m very excited to look at the well-done controlled trials of integrative medicine that try to attack this with mind-body therapy, exercise, dietary or nutritional modifications, and beyond,” says Dr. Calabrese. “If the trials are done well, we’ll learn from them.”  

The Lessons We Can Take From Other Infections

Many people have suffered from post-acute sequelae caused by other infectious diseases such as the flu or Lyme disease for years. However, the long-term effects of diseases like these still are poorly understood.  

“This is a very difficult area to study, there was no interest in it, researchers who worked in this were marginalized, and patients who had it were often ignored or looked at as though they had some sort of ‘psychosomatic’ illness,” says Dr. Calabrese. “Those who ignore history are doomed to repeat its failures. Any lessons that have been learned in that area need to be well-appreciated and we don’t want to repeat mistakes.” 

For instance, similar to long COVID, “long flu” can cause lingering symptoms like anxiety, fatigue, pain, and abnormal breathing three to six months after infection, per a September 2021 PLOS Medicine study of nearly 115,000 influenza patients.  

Experts like Dr. Calabrese are hopeful that the scientific community will glean lessons from the lack of data on long-term effects of other infectious diseases and recognize that these conditions need to continue to be addressed in medical literature.  

What Emerging Research Means for the Immunocompromised

If you’re high-risk for COVID-19, there’s no denying the daily impact the pandemic has had on your life. To add on to this, long COVID may be more likely to occur in those who have experienced severe infection. Read about our new poll that shines light on immunocompromised experience with long COVID.

“It seems from previous research that the severity of the acute illness could be a risk factor for long COVID, and it seems like some of our patients may be at risk for having a more severe course — not just related to hospitalization, but also related to the severity of the acute symptoms and the number of organ systems involved,” says Dr. Sparks.  

What’s more, long COVID can sometimes confusingly mimic symptoms of your underlying condition. COVID-19 seems to encourage inflammation, antibody production, blood clotting issues, and fibrosis, all disease processes intertwined in patients with immune-mediated inflammatory diseases. “We know from that many other viruses and infections can trigger the immune response that could cause a flare of the underlying rheumatic disease, so it’s possible that it can be really hard to distinguish between a flare of, say, rheumatoid arthritis and long COVID,” says Dr. Sparks. “They have a lot of features that are overlapping.”  

As the current research emerges, health care providers will have a better sense of how to treat and prevent long COVID in high-risk patients. Although many of the questions around long COVID are still unanswered, Dr. Sparks notes that there are two main reasons to remain hopeful. “First, it’s really good news that we’re not talking as much about the really severe COVID, where people are incubated and dying — there are certainly still patients that this happens to, but in a way, it’s a positive that it’s not as prominent now,” says Dr. Sparks. “Secondly, by and large, most people with rheumatic diseases do really well with COVID. More people do not get long COVID than do and many patients return to normalcy.”  

Get Free Coronavirus Support for Chronic Illness Patients

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Is your rheumatoid arthritis (RA) in remission? That’s a tricker question to answer than you might realize, because “remission” might not mean quite what you think it does. Firstly, remission doesn’t mean that you’re cured, because RA is a chronic illness and relapses are always possible. It doesn’t mean that you should stop taking your medication, either, though your doctor might very well tell you to lower your dose or let you try going without meds to see what happens. Some people refer to this as a “drug holiday.” 

Broadly speaking, remission means low or no disease activity. This usually translates to feeling very good. But now, thanks to recently updated guidelines from the American College of Rheumatology (ACR) and the European Alliance of Associations for Rheumatology (EULAR), it’s possible to feel like your RA is still impacting you a little, yet at the same time, still technically meet the new criteria for remission. 

Remission Then and Now

For more than a decade, the ACR and EULAR have defined remission based on provisional criteria that they expected might change pending new data. At the time (2011), these groups agreed upon two definitions of remission: One, called the index-based definition, says someone is in remission if they have an SDAI (simplified disease activity index) of 3.3 or less. SDAI factors in the number of swollen and tender joints as well as C-reactive protein (CRP) levels and two subjective measures that ask both the patient and provider to rate overall how well the patient is doing. This definition still stands today, in 2022. 

Back in 2011, however, the provisional criteria also allowed for an alternate definition of remission, which is known as Boolean. To be considered in remission per the Boolean definition, a patient had to meet remission criteria in several areas, including: 

• Tender/swollen joint count 
• A measure of function based on the Health Assessment Questionnaire (HAQ) 
• CRP score 
• A physician global assessment 
• A patient assessment of global disease activity (PtGA) 

Now, in 2022, most of these criteria remain the same. The only difference, per the new update, is that the cutoff for remission in the PtGA category has become slightly less stringent.   

PtGA isn’t as fancy as it sounds. All it entails is having you, the patient, answer a single question about how you’re impacted by your RA. It is generally phrased along the lines of “Considering all of the ways your disease affects you, how well are you doing in the past week?” and rated on a scale of 1 to 10, with 10 being worst. In the past, you had to rate yourself on the PtGA as less than 1 in order for remission to even be a possibility.   

Per the new update, a patient can give themselves up to a 2 and still potentially qualify.  

Why the Change?

This shift might not seem like big deal, but it means that a larger group of RA patients will now be deemed to be in remission. Previously, “remission rates based on SDAI [were] higher than those using the Boolean criteria, because summing several components permits 1 component, such as the PtGA, to be slightly elevated if compensated by a lower score in others,” the authors of the new guidelines explained.  

Defining remission as specifically as possible matters because rheumatologists generally use a “treat-to-target” approach. “Treat to target” means picking a disease management goal (such as low disease activity or remission) and working with your doctor to adjust your treatment plan as needed in order to meet that target. 

To make sure that changing the Boolean definition of remission was a good idea, the ACR and EULAR team analyzed data from four randomized trials to see how well the revised Boolean definition matched up with the SDAI (index-based) definition in terms of predicting later functioning and lack of radiographic progression (joint damage visible on X-rays). They concluded that “using the Boolean 2.0 criteria classifies more patients as achieving remission and increases the agreement with index-based remission criteria without jeopardizing predictive value for radiographic or functional outcomes.” 

The group also approved an additional definition of remission, which is the new Boolean definition without the inclusion of CRP.  

What This Means for You 

If remission is a goal for you, don’t be shy about letting your rheumatologist know. Your chance of hitting remission is higher if you’re proactive about it.  

Be Part of Research with ArthritisPower

Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.

There is a growing interest in using technology to improve patient care, which is evident by the several studies covering this topic being presented at the American College of Rheumatology Convergence this year.  

Of course, telehealth was a major focus during the height of the pandemic, but using technology to manage your underlying condition goes beyond checking in with your doctor virtually. It might also involve using smartphone apps to track your symptoms, accessing virtual reality to manage your condition, or leveraging the latest bloodwork technology to get accurate results and track the effects of medication.  

Here’s what you need to know about the latest research — and how it could help you manage your disease.  

The Smartphone App Functions Rheumatology Patients Prioritize

In a new study, researchers set out to determine what types of information adults with rheumatic and musculoskeletal disease (RMD) consider most important to know about their disease — and what functions they would use in a smartphone app, including the ability to access this information. 

An online survey on educational and app function priorities was completed by 2,159 patients of whom 78.3 percent were female, 81.2 percent were white, and the mean age was 64.2 years. The most common RMDs of survey respondents were rheumatoid arthritis (38.8 percent), osteoarthritis (15.6 percent), and psoriatic arthritis (13.1 percent). 

Five out of the 10 topics that more than 75 percent of patients considered extremely important had to do with medication options and expectations. Meanwhile, the one app function that a majority of patients (57.5 percent) would like to have in an app specifically for RMD was the ability to view their lab results. Other functions that were prioritized as being useful included scheduling/tracking medical appointments or medications, and recording symptoms or flares and sharing such information with their doctor between visits.  

“Patient education and health tracking, including lab results, are important to people living with rheumatic conditions, and these functions can be brought to patients via mobile apps, we found,” says study author W. Benjamin Nowell, PhD, Director of Patient-Centered Research at CreakyJoints and principal investigator of the ArthritisPower Research Registry. “Specifically, patients being seen in community rheumatology practices prioritized learning about their medication options and what they can expect from treatment in terms of how quickly it will work and the potential side effects they may experience.”  

It’s important to note that technology is not embraced by everyone who lives with RMD. A quarter of patients overall noted that they have no interest in using a smartphone app for their rheumatologic condition. The survey also asked whether patients own and use an activity tracking device such as an Apple Watch or Fitbit. Researchers found that more than half of patients neither own nor do they plan to get a smartwatch or activity tracker. However, if you are someone who does choose to leverage technology as part of your disease management, you are in good company. Apps and devices can be useful tools to keep you informed about your condition and to stay on track with doctor’s appointments and disease self-management.   

Key Uses for Home-Based Telehealth in Rheumatology

Home-based telehealth appointments became more common during the COVID-19 pandemic — and now, patients request these appointments, even when in-person visits are possible.  

In a new study, researchers selected 17 studies and four abstracts that met inclusion criteria to analyze how home-based telehealth can safely and effectively complement in-person care for certain rheumatologic conditions, particularly inflammatory arthritis and gout. 

Two studies supported the use of a telehealth pre-visit for new patients with inflammatory back pain and for early inflammatory arthritis. Meanwhile, two survey studies showed that providers were more accepting of home-based telehealth appointments for stable patients than for more active patients or those with more complex conditions.  

Four studies reported the successful use of remotely collected disease activity measures in low disease activity but not in patients with higher disease activity. Another study supported the use of protocolized uric acid management (when physicians decrease uric acid methodically using urate-lowering therapies) through telehealth visits.  

“There are some data that suggest that inflammatory arthritis and inflammatory back pain patients might be good patients to be selected for telehealth visits, if they meet certain criteria,” says study author Alexander Peck, DO. “We also found that the majority of rheumatology providers doing telehealth visits were most comfortable with established patients as opposed to new patients — and specifically for people with stable disease.”  

Two studies showed that telehealth satisfaction was generally high, but lower with increasing patient age. 

“Home-based telehealth definitely has a lot of promise as a viable modality for patient care,” says Dr. Peck. “As more literature comes out showing the effectiveness of, for example, disease monitoring of rheumatoid arthritis and telehealth visits, and adapting our typical [clinical] disease activity measures to telehealth, it’ll be a lot more incorporated.” 

Acceptance of Virtual Reality for the Management of Rheumatological Conditions

People with rheumatologic conditions are enthusiastic about using virtual reality to manage their disease state, even if they don’t have any prior experience with it, per a new study. Virtual reality refers to wearing a headset so that you see a screen and hear sounds in an immersive way that blocks out the real world. 

More than 500 adults with rheumatologic conditions completed an online survey, which covered topics like prior experience with virtual reality, perceived usefulness and potential enjoyment of using virtual reality, and willingness to use virtual reality to learn how rheumatologic conditions affect the body and what daily life might be like in more advanced stages of disease.  

Researchers also compared perceived usefulness, enjoyment, and willingness to use virtual reality in people with and without prior virtual reality experience.  

Most participants were female (86.6 percent) and white (88.3 percent) — and the mean age was 59.4 years. The most commonly reported conditions were rheumatoid arthritis (59.7 percent) and osteoarthritis (53.9 percent). 

The majority of respondents thought they could learn useful information about their condition using virtual reality, while just a small percentage did not think it would be useful.  

About one-third of respondents who had never used virtual reality thought it would be useful for learning information about their condition, while the majority were unsure. Three-fourths of respondents who did have prior experience using virtual reality reported that they thought they would enjoy using it to learn more about their condition, while only half of the respondents with no prior experience using virtual reality thought they might enjoy using it for this purpose. 

Almost all respondents expressed willingness to use virtual reality to manage their disease, regardless of prior experience.  

The most common uses of virtual reality that patients approved of were for exercise (77.8 percent), physical therapy (73.8 percent), and education (61.8 percent). 

“Knowing what patients think and feel about virtual reality, and how many of them are actually even familiar with the technology, will help us better understand how we can incorporate virtual reality interventions into rheumatic disease research clinical practice,” says study author Jeffrey Curtis, MD.

How Patients Perceive Lab Work for Rheumatoid Arthritis

Researchers wanted to examine how patients with rheumatoid arthritis perceive lab testing and the use of blood tests for treatment response and medication selections in a new study. 

In May and June 2022, 376 rheumatoid arthritis patients completed an online survey (86.4 percent were female, 89.3 percent were white, and the mean age was 58.1). Patients were on medications including csDMARD (75.1 percent), bDMARD (53.6 percent), and tsDMARD (17.8 percent). 

Patients perceived that their doctors order lab work in order to check for active inflammation (86.4 percent) or assess side effects of medications (81.6 percent).  

Other reasons included:  

• Checking for positive rheumatoid factor or other RA antibodies (67.8 percent) 
• Checking whether medication is working (59.3 percent) 
• Checking whether vitamin levels are good (55.3 percent) 
• Checking whether RA is progressing (54.3 percent)  

Patients reported that their rheumatologists most often ordered complete blood count, liver function tests, c-reactive protein (CRP), and erythrocyte sedimentation rate (ESR) to monitor RA, but felt that CRP was most helpful to themselves in understanding their disease activity.  

“People living with RA really pay attention to their blood work with the doctor’s help,” says study author Dr. Nowell. “Patients use RA-related blood work to keep an eye on active inflammation and to check for medication side effects, and most often mentioned that CRP was helpful to them in understanding changes in their disease activity.”  

Most patients were somewhat or very concerned that their current medication would stop working for them in the future (91 percent) or that they would waste time trying a medication that may not work for them (81.6 percent).  

If they needed to change treatments in the future, a majority of patients (89.4 percent) would be very or extremely interested in taking a blood test that could help predict whether the medication their doctor suggests will work well for them. Accuracy was more important to patients than both cost and wait time. (Read about personalized and precision medicine, which allows doctors to better tailor treatment plans and determine the right medication for you.)

“Given that patients prioritize the ability to view lab results in a potential app for rheumatic disease, this may be the feature that attracts patients to using an app. Once they are in the app, patients may then opt to learn about medication options and what to expect, or use it to track their symptoms with patient-reported outcome measures, especially if this was something suggested by their doctor as a way of checking on them between in-person visits.,” says Dr. Nowell.  

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This year at the ACR Convergence 2022, the annual meeting of the American College of Rheumatology, the voices of Hispanic patients have not gone unnoticed by researchers. The Global Healthy Living Foundation (GHLF) conducted one study and collaborated with other scientists on another study exploring the distinct health journeys, perspectives, and needs of Hispanic patients with rheumatoid arthritis.  

Exploring Patient Education Needs Study

The first study, “Exploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis,” aimed to discover how Spanish-speaking patients with RA learn best in a world full of different media options — from newspapers to podcasts to online articles, videos, and beyond. By understanding how patients learn best, they can promote greater self-insight and empowerment for Hispanic patients with RA. 

In addition, researchers set out to explore the potential impact of Spanish language-first (rather than translated) educational materials on RA diagnosis, treatment, and quality of care.  

This question is important given the lack of information surrounding the Hispanic experience with rheumatoid arthritis. “It’s estimated that less than two percent of publications on this condition are published in medical journals,” study author and Director of Medical Affairs and Hispanic Outreach at GHLF, Daniel Hernandez, MD, notes. “Still, Hispanic patients often turn to family or friends for advice on managing their condition rather than seeking professional care.” 

In fact, patients in the study cited the following unmet needs for better managing their RA: 

• Finding Spanish-speaking physicians, or staff that is well-equipped to support through translation. 
• Navigating insurance reimbursement for disease-modifying anti-rheumatic drugs (DMARDs) 
• Having trustworthy information regarding DMARDs, food/diet, exercise, and home remedies for RA 
• Having information on the emotional impact of RA (patients wanted to feel they were still seen as strong by their families) 

Using a Hispanic patient and rheumatologist advisory board, the researchers explored the collaboration of education materials that could lead to a better quality of life among Hispanics, “who may have gone undiagnosed or treated incorrectly due to inadequate information and outreach,” Dr. Hernandez explains. The study results indicated that Hispanic RA patients prefer “audio-visual (videos, podcasts, graphics, comics) over textual materials. 

In addition to assessing various Spanish-language education materials, the advisory board of Hispanic RA patients met weekly with GHLF staff to promote evidence-based RA information to the wider Hispanic community of RA patients. “The members have been retained at 100 percent and attended meetings more than expected, leading us to develop a poster for ACR, titled “We Became Advocates, Educators, and a Support System for Hispanic/Latino Patients with Rheumatoid Arthritis and Their Caregivers Through Involvement in a Virtual Patient Advisory Board,” on how these patients became patient leaders in their communities and online,” says Dr. Hernandez. “By treating patients as leaders-in-training and implementing cultural sensitivity into our patient education design, everything improved in our RA Hispanic community.”  

Patient Perspectives Study

The second study, “Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention,” describes insights from interviewing Hispanic RA patients about several health-related topics. The study was headed by Anna Balakrishnan, LMSW, Social Work Researcher in the Inflammatory Arthritis Support and Education Programs, and Adena Batterman, MSW, LCSW, Senior Manager, Inflammatory Arthritis Support and Education Programs and Patient-Centered Qualitative Research at Hospital for Special Surgery (HSS).

Learning more about the unique needs of the Hispanic RA community is important because without such knowledge, how could health care providers create culturally tailored interventions?  

And so, researchers set out to learn about patient perspectives by having a licensed bilingual social work researcher conduct interviews with Hispanic RA patients via Zoom in either English or Spanish, depending on the patient’s preference. So far, 17 patients have been interviewed and the following nine topics have emerged in the interviews:  

• The impact of RA on emotional health (connected to pain, feelings of loss about roles and abilities, and stress) 
• Willingness to seek mental health care 
• Medication and illness beliefs affecting patients’ approach to RA management 
• Essential features of a patient-provider relationship (trust, feeling cared for and heard, kindness, consistency)  
• The value of participating in a support group (sharing, connection, and feeling less alone) 
• The impact of RA on family (relationship dynamics, presence/absence, support) 
• Preferences on outreach strategies (postal mail, referral source, phone calls, emails, and social media)  
• Preferences on structure and format (group size, facilitator attributes, in-person or virtual) 
• Experiences of systemic barriers to care 

Having a greater appreciation and understanding of Hispanic RA patients’ perspectives and personal experiences with the nine topics above will allow researchers to implement such knowledge into future intervention programs. “Our aim is to identify unique education and support needs, as defined by [these] patients, as there is a gap in the literature in this area. This input will be integrated into critical elements of an intervention, including culturally tailored content areas, implementation, and outreach strategies,” write the study authors. 

Zooming Out to All Spanish-Speaking Patients with Chronic Illness

The researchers hope to expand these studies beyond Hispanic patients with RA with “the goal is to expand to other disease states and languages in the not-so-distant future,” says Dr. Hernandez. 

By gathering with health care providers and researchers, RA patients in the Hispanic community incorporated their values and perspectives into the research process. This partnership is mutually beneficial for researchers and patients alike because it promotes interventions that speak to the real-life experience of those with chronic illnesses.  

Hispanic RA patients continue to be an underserved community experiencing health disparities relating to pain, fatigue, disability, and depression. Promoting health equity is not only moral, but it is also full of preventative potential since underserved communities are most vulnerable to disease and worse outcomes. In this way, we hope the above studies mark a new dawn where research continues to elevate the voices of underserved communities.  

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Shilpa Venkatachalam, PhD, has the unique perspective of living with inflammatory arthritis as both a patient and Director of Patient-Centered Research Operations and Ethical Oversight at the Global Healthy Living Foundation (GHLF). Even after the workday ends, Shilpa continues to grapple with how to best treat rheumatoid arthritis, psoriatic arthritis, and other types of inflammatory arthritis. 

In a recent patient poster presented at the American College of Rheumatology Convergence (ACR) 2022, Shilpa shares what she’s learned from her non-linear journey of seronegative rheumatoid arthritis.  

 As a researcher and patient, Shilpa endeavors to bring the patient’s perspective into the work she does. She also wants to bring this perspective to the rheumatologists and clinicians at ACR so they may better understand the patient’s perspective at every stage of the disease, she explains.  

“Only the patient can provide the patients’ perspective on living with seronegative RA,” says Shilpa. “If we want to understand the lived experience — the fatigue and diminished quality of life many patients struggle with every day — we need to hear from the patients. Patient-reported data can come only through the patient.” 

Dealing with Denial

When someone is diagnosed with a potentially lifelong chronic illness, it is common to go through stages of grief. A diagnosis can bring relief in getting answers, yet it can be difficult to accept. Receiving a diagnosis of  seronegative rheumatoid arthritis can magnify feelings of denial because, unlike seropositive rheumatoid arthritis, seronegative RA does not show a positive rheumatoid factor (RF) in bloodwork.  

When Shilpa was initially diagnosed, she convinced herself that she did not have a chronic condition. “I think this is temporary so let me wait it out,” writes Shilpa in her poster. Despite the symptoms she had, such as fatigue, joint pain and stiffness, recurring tendonitis, and inflammation, Shilpa delayed treatment. She also feared potential side effects of medications and questioned whether the treatment was good for her holistically. 

From Denial to Acceptance

Three years after her initial diagnosis, Shilpa decided to get a multifactorial biomarker blood test, which showed inflammation and disease activity. The results helped her begin to accept her diagnosis and start treatment on a biologic Disease-Modifying Antirheumatic Drug (DMARD).

“Molecular tests and blood tests do more than just help the physician to understand the pathophysiology of a disease,” says Shilpa. “It helps those of us living with a disease to ‘see it and believe it.’ In turn, this helps with treatment decision making.” 

Finding Treatment

After five years of dealing with the frustrating process of trial and error to find the right treatment, Shilpa finally found a medication that worked for her.  

Yet, like many people living with chronic illness, Shilpa remained worried that her medication would stop working: “How can my care team know what will work for me? What if nothing works for me?” 

Now, seven years later, she wishes she took a more aggressive approach to treatment early on and wants to prevent others from making the same mistake. “Even if they do not see outward signs of disease progression, chronic inflammation is still at work,” says Shilpa, who urges patients to research and understand their diagnosis.  

There are people working for us, looking for new medications, so we aren’t left without options,” she says. “You can live a good quality life if you take targeted medications regularly, combined with a healthy lifestyle — eat well, sleep well, keep moving — and build a support system. Ask for support.” 

Shilpa finds it helpful to relate to the patient community within CreakyJoints and to keep communication lines open between herself and her doctor. 

Messages of Hope

Here, she shares three lessons learned during her treatment journey — and hopes other patients take them to heart as they figure out what works to better manage their inflammatory arthritis.

• Don’t wait to get treatment. By resisting treatment, Shilpa says she lost her “window of opportunity” to achieve early remission. Joint damage is happening even if you don’t “see” it, and targeted medications are designed to slow the progression.
•  It may take time to find the right medication for you. Shilpa acknowledges that it can take months for some people to find effective treatment. She suggests that those who are newly diagnosed speak to other patients who have been through a similar experience. “There’s a high and low feeling of finding a targeted medication that works for a while, but then needing to find a new medication when something stops working,” says Shilpa. “It’s important to know you’re not alone.”
• There is ongoing research to treat inflammatory arthritis, an autoimmune condition that affects people whether they are seropositive or seronegative. “There’s a whole team of researchers, physicians, and other clinicians, working to develop better, more targeted, medications with fewer side effects,” Shilpa reassures patients. “Keep that in mind and don’t give up hope.”

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Research is changing for the better. Where once research exclusively included the voices of academics and only focused on the experiences of a narrow segment of society, today research is increasingly including the voices of patients belonging to several racial and ethnic communities. 

Just ask patient advocate Wigna Cruz, who will be presenting her poster: “We Became Advocates, Educators, and a Support System for Hispanic/Latino Patients with Rheumatoid Arthritis and their Caregivers Through Involvement in a Virtual Patient Advisory Board” at ACR Convergence 2022, the annual meeting of the American College of Rheumatology. Wigna’s research is about her experience taking part in an advisory board for Spanish-speaking patients with rheumatoid arthritis.  

Wigna, along with seven of her patient peers on the advisory board, were invited to participate by their rheumatologists in collaboration with the Global Healthy Living Foundation, or enrolled via GHLF’s Spanish-language website CreakyJoints Español, or with an associated WhatsApp.  

In her poster, Wigna describes the potential of patient advisory boards to improve care and educational initiatives for Hispanic patients worldwide. Through participating in the advisory board, Wigna and her fellow patient peers provided feedback on various Spanish-speaking materials to make them more “patient-friendly” and relatable to the Spanish-speaking public. As part of her work with the patient advisory board, she helped develop ways of reaching Hispanic patients with RA, such as by creating a musical RA campaign, posting educational videos on CreakyJoints, and partaking in local interviews.  

By providing her insights on a patient advisory board, Wigna is not only uplifting others in the Hispanic community on their disease journeys, but she is also noticing benefits in her own life. “It’s healing for us and helpful to others,” says Wigna. “We have formed a strong bond and consider each other friends who make up a strong support system. Some of us have experienced flares, COVID-19, and other challenges during our participation, and we have felt supported and heard by this community.”  

Eventually, the patient advisory board evolved into a flourishing support group that helped patients in both good and hard times.  

What Wigna Learned – And What You Can Learn Too 

Here, we talk with Wigna about her experience submitting a patient poster for ACR and what she hopes others will take way from her learnings (translated from Spanish): 

CJ: What do you hope people will learn from your session? 
Wigna: “We are a large Hispanic community and have needed to find education in the Spanish language, but it is not always easy to find access to content and resources or know what to trust. The importance of having support from peers helps us feel empowered. Spanish-speaking patients have different experiences so we can be directed to sources and have conversations or ask questions in a safe and familiar environment.”   

CJ: Why is it important for patients like you to share their own research at ACR? 
Wigna: “I realized that at first, I was motivated to learn about my condition to ensure that my family, friends, and others understood what I was going through. As I kept attending the group meetings, building a bond through shared stories, and learning from credible sources, the group has become a type of therapy where I get support, learn new things, and have people part of my community that have become like family.”   

CJ: What are you most looking forward to at ACR22? 
Wigna: “I hope this information will show people that the Hispanic community is looking for ways to be seen, heard, and supported. We are representing different parts of the world, but we come together to share our experiences because it is healing for us and helpful to others. This is a great opportunity to share this message with those who may not have Spanish-speaking patients and who are not aware that we also represent patients going through challenges and are in need of services and support in our language.” 

CJ: What piece of advice would you give other Spanish-speaking patients on their health journeys? 
Wigna: “Learn to speak up and find support. It’s okay for people to be aware of personal and medical challenges. Rely on your doctors, family, and friends, but also find group support of others who are having similar experiences. Be sure to find evidence-based information and have a source where you can share your concerns or happiness. Opening yourself this way will help you to be mentally healthy to deal with challenges, and you will become a better communicator to advocate for yourself at the doctor’s office and within your community as well.” 

CJ: What is the best part of being part of a patient support group? 
Wigna: “We are making a change in not only our lives, but we are also bringing awareness to the needs of our community through video projects, surveys, interviews, songwriting, etc. We are reaching people who need to see someone who looks like them and has similar challenges and still says; it’s okay. Although there isn’t a cure, you can find help and support to get to remission and, along the way, you will learn about your condition and be able to focus on the positive things in your life as well.”  

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Living in a rural area creates unique challenges for Vanessa Kerr, who lives with rheumatoid arthritis (RA) and has sought effective care for her disease for years. After years of treatment delays and miscues, she became empowered as her own advocate to drive far to find the care she needed and deserved.  

Vanessa shares her journey in a poster, “Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment,” presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology.  

Getting a Diagnosis

Vanessa, a third-grade teacher, mom of five children, and wife of James, a farmer, first noticed that something was wrong after the birth of her fourth child. She was too weak to pick up her newborn out of the crib. “When I did, it left my hands, arms, and shoulders aching to the point that I’d walk around holding them up and crying,” Vanessa writes in her poster.  

She sought help from her family physician who suspected RA and referred her to a local rheumatologist who was only available once a week, making it difficult to get an appointment. She had a brief period of remission while she was pregnant with her fifth child. But her symptoms came back — and, this time, it took her six months to find a rheumatologist. Her previous doctor moved away.  

She was finally placed on a Disease-Modifying Anti-Rheumatic Drug (DMARD) and offered steroid shots during flares — but it wasn’t enough. “There were times that I couldn’t work, and my family had to help me dress. My rheumatologist never discussed treatment change options.” says Vanessa.  

Seeking Better Treatment 

Her quest for better care began when her cousin, who worked in autoimmune research, suggested finding a more proactive rheumatologist. Vanessa found a new doctor an hour away, but the long drive was worth it. The new rheumatologist placed her on a biologic along with the DMARD and took her off the steroid.  

“My symptoms improved dramatically,” Vanessa writes in her poster. “I was given a direct line to the nurse resulting in quick response times when flaring. The office is open four days a week and nurses are available on the fifth day to order refills and convey special needs to him.” During the pandemic, Vanessa met with her rheumatologist over Zoom. 

The experience of seeking better care helped empower Vanessa to advocate for herself and take control of her RA treatment. It also taught her to better prepare for her appointments between visits. She now comes equipped with a list of concerns, questions, and symptoms — and a loved one to lend support and another set of ears. “I remember that I know my body, pain level, symptoms, and what is working for me,” she writes in her poster. “If I feel my concerns are being dismissed, I say so or look elsewhere.” 

What Vanessa Learned — And What You Can Learn Too

Here, we talk with Vanessa about her experience submitting a patient poster for ACR and what she hopes others will take way from her learnings: 

CJ: What was your motivation for submitting a patient perspectives poster?  
Vanessa: “I wanted to share a perspective with the general public and the medical community to give them information about the struggles we have in the rural community, as well as to give support to others who struggle to get the care they need.”  

 CJ: What are you most looking forward to at ACR22? 
Vanessa: “I will attend virtually, and I look forward to hearing from other patients to get more tools and information which I can use in times of flares or in monitoring my own care.” 

CJ: Why is it important for patients like you to share their own research at ACR? 
Vanessa: “We research things which are vitally important to us, things which may be unintentionally overlooked by the medical community. We are also our best advocates and need to empower others with RA to advocate for themselves, too.” 

CJ: What did you learn about yourself and your health journey by working on your poster? 
Vanessa: “It is empowering. In the patient chair, you often feel like the victim. By taking more personal responsibility for your own care, by educating yourself, all those things empower you to take control of your disease. Now I take notes and look back at my own health record logs.”  

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Ashley Krivohlavek, 30, who lives with psoriasis and psoriatic arthritis, is no stranger to medical mishaps. From being misdiagnosed with fibromyalgia to searching for a new provider in a rheumatology desert with few options, Ashley has weathered several challenges along her health journey. “Initially, I was not able to achieve well-controlled disease. I had pain, swelling, fatigue, and brain fog,” says Ashley. 

Today, she has found meaning in her health journey and is sharing her patient poster, “Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis,” at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, to help others steer clear of these same challenges. 

The Journey to Find the Right Provider

Ashley was frustrated with her current rheumatologist, who dismissed her concerns that her medication was no longer working. Determined to find a new provider, she began doing independent research and actively asking for referrals. 

Finally, she found a nurse practitioner who specialized in rheumatology to support her. “The first thing my new provider said was that she expected me to be a collaborator in my health journey. I was the captain of my ship, and she was there to support me.”  

Fast forward to 2021, Ashley’s health has improved tremendously and she’s been able to reclaim her life. “Gone is the constant fatigue and brain fog and aching in my swollen joints.” In fact, these days Ashley has re-started graduate school and has been volunteering in local health advocacy.  

She largely owes her healing to the two-way relationship she shares with her provider. In hopes of encouraging others to cultivate a similarly supportive dynamic with their health team, Ashley’s poster lists “Patient Communication Principles” that can guide patients, before, during, and after an appointment. For example, patients are advised to “bring a list of all current medications, frequency, dosage, and what they are for” before the appointment, “clearly state goals” during the appointment, and “research provider’s recommendations” after the appointment. Ashley also created a five-step guide to help patients change providers.  

What Ashley Learned — And What You Can Learn Too

Here, we talk with Ashley about her experience submitting a patient poster for ACR and what she hopes others will take way from her findings: 

CJ: What was your motivation for submitting a patient perspectives poster?  
Ashley: “My motivation stemmed from my goal to help others through their health journey. I had such a difficult time with getting a correct diagnosis, navigating treatment options, and finding the right medical team that I never wanted anyone else to go through what I have. Everything I do through patient advocacy is to create a network so that others don’t feel so alone.”

CJ: What are you most looking forward to at ACR22?  
Ashley: “Everything — from communicating with other presenters to the people viewing them, I am excited for every aspect of the process. I will be attending virtually this year but I plan on going in person in the future. This is just such a wonderful opportunity for other patient advocates to reach out to each other and to help our community as a whole.”

CJ: What do you hope people will learn from your session?
Ashley: “I hope that my session will empower others to communicate with their physician without feeling overwhelmed or timid. I want people to come out of their appointments with a sense of strength and clarity for their future.” 

CJ: Why is it important for patients like you to share your own research at ACR?
Ashley: “The importance of having patients present at a scientific conference like ACR is that it gets providers and patients together outside of the exam room to collaborate and be heard. That experience of seeing a patient or a doctor outside of the health care setting can humanize and give empathy to one another. It is also wonderful learning from each other.”

CJ: What did you learn about yourself and your health journey by working on your poster?
Ashley: “When I started writing my ACR poster, I was stretched thin. I was finishing a very difficult and busy semester of college. I also have many doctor’s appointments for my own chronic illnesses and my mother was recovering from a total knee replacement and my father was having corrective cataract surgeries. It was, to say the least, a very long, arduous time in my life. I saw my own strength. My power to endure.”  

The Provider-Patient Tango

Ashley’s message is one full of empowerment, encouraging patients to be more involved and proactive in their treatment. Through her poster, she demonstrates how the partnership between doctor and patient is far from a one-man dance; it is a tango involving two parties. As Ashley says, “I communicate with my provider about my needs and PsA goals and she listens and provides constructive feedback.” 

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. 

Be Part of Research with ArthritisPower

Join CreakyJoints’ patient-centered research registry and participate in voluntary studies about managing arthritis. Learn more and sign up here.