#ACR20 – What A Year – A Rheumatoid Arthritis Patient Reports on The Virtual Event

Creaky Joints sponsored me to attend as as patient reporter for the virtual conference. If you would like to see their reports please visit the following 

What a year it’s been since last year when I attended the American College of Rheumatology conference I wasn’t hearing much of anything about coronavirus – the pandemic had yet to become a concern for those in North America but now it’s impossible to avoid as rates keep increasing and it to be at the forefront of everyone’s concerns. My takeaway from the conference last year was that the 20th century was about medicine but 21st century has to be about the patient though this year I can see a unpredencent shift to the impact of covid-19 as the main theme, understandably and unfortunately so. Opening lecture described the theme of the conference and just about how everyone at this point is feeling it – What A Year. 

This year was however quite the year in rheumatology research. ACR20 was attended by 16,400 people from all over the world, 700 speakers, 1,200+ posters. Being virtual it was much easier for myself as a rheumatoid arthritis patient to attend – I didn’t have to fly, lift luggage or deal with my annoying anxiety among many challenging aspects of illness. Life could resume back to normal, no jet lag no child care arrangements – Instead I got to dive right into the conference at the comfort of my own home and my own pace. Last year before flying to Atlanta I trained to make sure I would be able to handle the steps between sessions in the massive conference center, this year I had to make sure to get steps in between sessions and burn off the donuts from the ACRdonut challenge. 

However I really do miss the in person face to face connection, the adrenaline I felt fueled by last year and when I attend most conferences as a patient advocate. I still felt a bit of it this year because of my love for research and my fellow patient advocate friends involved but not even close to the same experience as attending in person. 

What I feel is my own interests and my communities interest included studies on exercise mental health, alternative therapies, diet, comorbidities, and CBD. For my advocacy interest or involvement in research I was also very interested in virtual health, patient engagement in research and health disparities outcomes. Considering how large this conference is, there was definitely a lot of opportunity to find out the latest and breaking research on all these topics and more. 

Covid-19 Highlights

Dr. Anthony Fauci broke the internet the same day Biden was elected the new president of the US. Not only was the conference a great learning opportunity but also a historical moment. Only a few days later Pfizer announces a vaccine that is 90% effective against covid-19 on the last day of the conference making it another monumental day in history. Even though we were connecting virtually, you could still feel the excitement, relief, and hope from everyone. 

Hydroxychloroquine trials showed no benefit for treatment of COVID19 and even the flu! But I’m sure we’re all aware by now however research suggests some of the drugs that treat rheumatoid arthritis reduce chances of being on ventilator or death when diagnosed with covid-19 or any viral infection

Global Rheum Covid-19 Alliance – Proof partnering with patients in research can really show some benefits including recruitment, spreading information and trust in the patient community.  GRA uniquely facilitated collaboration and conversation between both sides, serving as a model to involve patients from the ground up and provided critical information for both the health care providers and patients. 

Several studies have defined those at risk for covid-19 and outcomes of those with covid – rheumatic disease patients have actually been doing ok and the greater risks for covid-19 have been highlighted but so has the fact that everyone is still at risk for the virus and we must continue to do our part. Risks include men, age, obesity, smoking, moderate to higher disease activity, comorbidities such as lung disease or hypertension and ethnicity. 

Researchers have highlighted how virtual health has been well received and needs to become a regular thing after the pandemic. Considering more patients are actually showing up to their appointments says this is true.

Addressing What Patients Really Want and Need – Treat the Patient as a Whole – Not Just the Disease. 

One study outlined understanding the needs of patients provides significant opportunities for rheumatologists (and other health care providers) to better support and educate their patients. This includes offering a stronger recommendation on treatment path based on the patient’s specific needs and goals, and specific information on diet/exercise approaches. It also means listening to patient concerns and addressing the mental health aspects of RA including pain, depression and fatigue, and not just disease progression.

While another study noted 86% of rheumatic disease patients stated are unhappy with their medications and one third of patients felt unheard by their doctors. This caused them to seek help from complementary medicines. Moving forward in rheumatology care, research is proving healthcare providers need to connect with patients to reliable care for better outcomes – the are including but not limited to: 

Our Comorbidities Matter

Many of us need other specialists to determine comorbidities causing us pain outside of our arthritis diagnosis – for example fibromyalgia, depression, neuropathy, osteoarthritis or irreversible joint damage may be causing pain even though the original arthritis diagnosis is well controlled. In this study, because the prevalence of these overlapping disease processes is significantly higher in RA, it is imperative for clinicians to recognize and address these patterns of multimorbidity to achieve optimal long-term outcomes for patients with RA. 

This study states that patients with comorbidities like fibromyalgia have poorer outcomes and increased depression while depression can be causing a patient debilitating symptoms but they may not realize it. 

While this study says significant depression symptoms in RA are more frequent than depression diagnosed clinically, suggesting that some patients with depression may go undiagnosed. Depression symptoms predicted mortality in RA patients, while a clinical diagnosis of depression did not..

In this study, patients with psoriatic arthritis  that also have neuropathic pain have higher probability of not achieving moderate disease activity or remission and needs to be addressed regularly with all forms of arthritis. 

We Need Answers and Relief From Fatigue

Fatigue is one of the most complained about debilitating symptoms of many chronic illnesses, especially those with arthritis. Occupational therapists can really help patients pinpoint triggers for their fatigue and manage daily life easier but research also shows what also influences fatigue improvement in rheumatoid arthritis. A prospective cohort study suggests fatigue improvement was associated with female gender, non-smokers, lack of depression and higher levels of fatigue at baseline.

Baseline clinical measures and baseline patient-reported measures of functional status better distinguished the three fatigue trajectories. Patients with higher levels of pain, psychological distress, morning stiffness intensity also experienced more severe fatigue over time.

More Patients Need To be Tested For Obstructive Sleep Apnea

In one study they found 90% of participants with Rheumatoid Arthritis had some degree of sleep apnea identified, with over half having moderate to severe obstructive sleep apnea. This is linked to multiple health problems, including cardiovascular disease and fatigue. These results highlight the importance of future studies of sleep as well as the importance of considering obstructive sleep apnea as a risk factor with RA. Definitely something to bring up to your rheumatologist.

A similar study also states this is common with Fibromyalgia patients. 

This study examines how sleep disturbance was independently associated with greater pain severity and significantly increased risk for multi site pain with a long-term effect of sleep on pain in general, further suggesting beneficial effects of treating sleep problems on long-term pain control.

The Importance of Physical Activity

There’s no doubt that many different studies continue to show exercise benefits pain, sleep,  depression, fatigue plus more but safest and best overall exercises for various types of arthritis is still needed to be clearly outlined for us This study highlights that by saying “Despite evidence recommending strength and aerobic exercise for these clienteles, physical therapists underutilize these interventions, especially aerobic exercise. There is a need for better knowledge translation to physical therapists regarding the importance of strength and aerobic exercise for patients with RA and AS “

One study concluded moderate-to-high land-based aerobic exercise for at least 4 weeks is an effective intervention to improve fatigue in adult patients with rheumatoid arthritis. Physical activity may have a more potent effect on fatigue in women and elderly patients with rheumatoid arthritis.

This was also noted in a similar study for Lupus.

In this delphi study they highlight exercise as a beneficial non-pharmacological treatment for four symptoms of fibromyalgia, specifically pain, fatigue, sleep and depression. 

It’s A HIIT for RA Heart Health

Researchers concluded in RA, exercise training-related increases in cardiorespiratory fitness are associated with improvements in peripheral helper T cells and skeletal muscle oxidative metabolism, which are themselves related. Monitoring of cardiorespiratory fitness with individualized exercise prescription may be valuable in the management of chronic inflammation and cardiometabolic risk in RA.

Mental Health Needs To Be Addressed As Much As Pain

An alarming amount of those living with arthritis also struggle with mental health issues, especially heightened during the pandemic – There’s been an urge to address this by rheumatologists as patients with depression tend to have poorer outcomes. Social Workers not only can help with counselling but can help guide patients with social and financial support. A recent study suggests “Substantial increases in symptoms of both anxiety and depression were found when comparing scores from pre-pandemic to during the pandemic. Both COVID-19-specific and general stress levels were significantly associated with those changes. While the impact on disease outcomes remains to be seen, results suggest the need for assessment of stress in clinical settings and identification of effective stress management techniques.”

However, one study says “Although providers recognize the importance of co-morbid depression there remains a care delivery gap in this subset of patients even with the addition of extra protocols and resources.” 

Patients Want A Holistic Approach Added Into Our Treatment Plan Supported By Our Rheumatologists 

What we eat matters, it really does. 

It’s no wonder it appears more and more studies are showing the Mediterranean diet and the Anti-Inflammatory diet are showing benefits for inflammatory conditions.  In this study researchers describe how RA patients exposed to an anti-inflammatory ITIS diet had improvement of clinical outcomes. 

Wondering What Supplements To Take? Latest Research Says…

Get Your Vitamin D

Not only can vitamin d help with fatigue but if you are deficient right now is an important time to get your daily dose of vitamin d in. A study found deficiency of vitamin D serum levels seem associated with more severe lung involvement and longer disease duration in COVID-19 patients suggests this study from Europe.

The Ever Common Curcumin/Turmeric – Does it Really Work?

One study notes patients with RA and PsA who were taking curcumin in the study population perceived associated improvement in pain and other symptoms. There is an interesting association between perception of symptomatic improvement in patients taking curcumin and treatment’s frequency, dosages (200-1000mg), and length (years). These results suggest curcumin’s efficacy for symptom alleviation in patients with RA and PsA. 

Have an Inflammatory Autoimmune Disease? Consider Not Taking Spirulina

Spirulina, a popular herbal supplement, stimulates the immune system. In this study that examined recent epidemiologic data suggest that Spirulina is associated with the onset or exacerbation of pre-existing autoimmune skin diseases, such as Dermatomyiositis . Their preliminary results show that Spirulina increases production of key inflammatory cytokines because it has immunostimulatory effects.The findings provide a potential mechanism by which Spirulina use may lead to disease onset or flare in susceptible patients. 

Don’t Recommend Us Doctor Google? Recommend Us Something Reliable

Health care providers need to help guide patients to reliable online sources for patients: including patient run organizations, useful apps, patient blogs or other social media outlets that provide relatable content. In this study they highlight There is a clear need to increase the understanding and awareness of systemic lupus erythematosus and highlight the prognosis, treatment options, and preventative measures. Healthcare providers should emphasize the impact lupus has on people living with lupus and provide more insight into the disease and spread education materials and videos. We should also advise the patients to obtain information from reputed sources. This can be carried over for many different types of arthritis. 


Results from a Canadian pilot study on use of a 30-day smartphone mindfulness meditation application for patients with rheumatic disease revealed that this is a feasible and acceptable non-pharmacologic modality to target health related quality of life. Participants with higher baseline stress, anxiety, pain, and PGA scores were more likely to complete the mobile MBI program. Among completers, preliminary results showed improvements in fatigue and perceived stress. More rigorous study on mindfulness application use and barriers, as well as potential effect on health related quality of life, is needed.

Interesting Topics That Caught My Eye 

Breast Implants Do Not Cause Autoimmune Disease

One study suggests that breast implants do not cause 26 different types of autoimmune diseases including rheumatoid arthritis. 

Chikungunya Virus

This study found that there seemed to be an increase in inflammatory arthritis following the Chik 2006 epidemic in this otherwise robust population of India.

Moving Forward: Future Research Topics and Trends I Want To See More Of. 

Research Lacks Diversity

One thing I noticed from across the globe is recruitment can be difficult. For example not very many men participate in research. Some studies were 100% female participation or with only 10% male participation. Having been a patient partner in research for a few years I’ve noticed this barrier pop up numerous times but would like to see more studies applicable to everyone. This makes me wonder how we can change these recruitment barriers? How can we continue to set this culture change of more patient engagement and participation in health research? 

There’s Research Into Reproductive Guidelines But What About After The Baby is Here?

There seems to be a trend about safety during pregnancy with our medications and reproductive issues for women with inflammatory arthritis but I don’t see enough research addressing the help women may need once the baby has arrived and parenting throughout the child growing up as the disease progresses. The real challenge is parenting with arthritis. Taking care of the child takes a lot longer than growing the child. 

A Final Note

What a year in arthritis research. Thank you to the American College of Rheumatology for putting together such a smoothly run event in an unprecedented time. Thank you and congratulations to everyone who presented from across the globe. Thank you to the patients participating in our life changing research. Thank you Creaky Joints for sponsoring me to attend the event. 

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