Sachi Arya is a Chronic Strength Champion, which means he doesn’t just take control of his pain — he battles back. Read to learn how Sachi has found ways to overcome his osteoarthritis. Continue reading Sachi Arya
A shortage of tocilizumab (Actemra) due to increased demand to treat COVID-19 cases may affect people with rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and other diseases who use the medication. Continue reading Actemra Infusions in Short Supply
Tune in to this episode for the latest on education rights and COVID-19. For an overview on recommendations and educational rights, like Section 504 plans and Individualized Education Plans (IEPs), check out episode 18 from July 2020: Back to School & College During COVID-19. Continue reading Back to School & College During COVID, Part 2
NASCAR driver and arthritis warrior Natalie Decker shares her formula to make it to the finish line in this Live Yes! With Arthritis Podcast episode. Tune in now! Continue reading A Formula for Success: Natalie Decker Is Driven to Beat Arthritis
The Arthritis Foundation is your trusted source for arthritis-related news and COVID updates that affect people with arthritis. Here’s a wrap-up of the headlines from this past month.
The Latest in COVID-19 News & Arthritis
Delta Variant Causing States & Counties to Consider Mask Mandates
The highly contagious Delta variant of COVID-19 is causing concern across the U.S. as some states are seeing an increase in cases and hospitalizations. Some areas are considering mask mandates again, especially indoors.
Stay up to date with your local health department guidelines and check the Arthritis Foundation’s website regularly for COVID-19 & Arthritis FAQs.
Fauci: Immune Compromised May Need COVID-19 Vaccine Booster
Dr. Anthony Fauci, director of the U.S. National Institute of Allergy and Infectious Diseases and the chief medical advisor to the president, says people who are immune compromised may need a COVID-19 booster vaccine. He stated that patients with transplants, undergoing cancer chemotherapy and people with autoimmune diseases who are on immunosuppressant treatments may all need a vaccine booster to increase antibodies to the virus, especially as the Delta variant continues to spread. He also said revised mask guidance by top health officials is under active consideration. Get the details.
Autoimmune Rheumatic Disease Does Not Influence Immune Response Against COVID-19
Despite suspicions that patients with autoimmune rheumatic diseases (AIRD) may have worse immune responses against COVID-19, research indicates that this patient population did not differ from the general population in protective antibody responses, according to a study published in Springer.
Vaccine Hesitancy for Some With Rheumatic Diseases Weighs Heavy
Despite guidance from the American College of Rheumatology, some patients with rheumatic diseases are still very concerned about getting the COVID-19 vaccine. Dr. Jeffrey Curtis, MD, MPH, a University of Alabama at Birmingham rheumatologist who leads the American College of Rheumatology COVID-19 vaccine task force, says the concerns are valid. However, the benefits to vaccination outweigh the risk of having severe COVID or the potential for disease flare. Read more.
For details on COVID-19 vaccine recommendations for people with arthritis, visit the Arthritis Foundation Care & Connect hub.
Study Suggests Lasting Immunity After COVID-19, With a Big Boost from Vaccination
After an infection with SARS-CoV-2, most people — even those with mild infections — appear to have some protection against the virus for at least a year, a recent follow-up study of recovered patients published in Nature suggests. What’s more, this and other research demonstrates that vaccinating these individuals substantially enhances their immune response and confers strong resistance against variants of concern, including the B.1.617.2 (Delta) variant. Read the study.
In Other Arthritis News
FDA & Arthritis Foundation Make OA Priority Discussion
The Arthritis Foundation partnered with the U.S. Food and Drug Administration (FDA) to host a workshop recently on developing new treatments with long-term benefits for OA. Learn more about what’s being done to tackle treatments for OA.
Taking a Step Toward Discovering the Cause of Joint Disease
A new study finds switches near GDF5 gene linked to knee osteoarthritis and hip dysplasia. This new information could lay the groundwork for targeted screenings and treatments. Read more.
AbbVie, Lilly Face Fresh Delays in FDA Approval for Expanded Use of Arthritis Drugs
JAK (janus kinases) inhibitors have come under the U.S. Food and Drug Administration’s scrutiny, after preliminary results from a safety trial of Pfizer’s JAK inhibitor drug earlier this year showed an increased risk of serious heart problems and cancer in patients. Learn more.
Association Between Psoriasis and RA
Mounting evidence suggesting an association between psoriasis and an increased risk of RA has underscored the need for prospective studies to enhance our understanding of the disease course and optimal treatments in patients who have both diseases. Read more.
Biologic Treatments Could Mitigate Psoriatic Arthritis Risk
A new study finds that treatment with biological disease-modifying antirheumatic drugs (DMARDS) for people with psoriasis may lower the incidence of developing psoriatic arthritis later. Learn more.
Low-Dose Steroid Use in RA May Still Cause Risk for Vertebral Fractures
A new study reports that patients with rheumatoid arthritis (RA) being treated with low-dose glucocorticoids are still at risk for increased vertebral fractures. Read the report.
Learn more about corticosteroids and arthritis.
3D-printed Knee Implants Could Cut Surgery Times and Improve Arthritis Treatment
Known as Tailored Osteotomy for Knee Alignment (TOKA), this treatment improves the operative procedure and fit of high-tibial osteotomy (HTO) plates used to realign a patient’s knee, making them more stable, comfortable and better able to bear weight than existing generic plates. Learn more about the technique and how it also simplifies HTO surgery, making operations quicker and therefore safer.
To kick off Arthritis Awareness Month in May, the Arthritis Foundation launched our new Vim app — a unique, personalized tool to help people with arthritis easily find resources they need to manage their pain. The app also helps keep track of conditions and treatments, set and achieve goals, and connect with others for tips and encouragement.
The app stems from input received from 40,000 survey respondents in the Foundation’s ongoing Live Yes! INSIGHTS study, which is summarized in our How It Hurts report. As Vim was being developed, we sought extensive feedback along the way — from arthritis patients, health care professionals and other experts in pain management.
The app helps users set SMART goals based on their own situations and needs; goals that are specific, measurable, attainable, relevant and time bound. Users can also get information and ideas on how to best manage chronic pain through a deep library of expert content in seven categories. Maybe best of all, Vim fosters a spirit of community with common experiences, bringing people together who listen and inspire each other to help make managing pain easier.
Fast-rising NASCAR driver Natalie Decker, who is an Arthritis Foundation Champion Ambassador — she grew up with arthritis and continues to battle its challenges — says Vim has helped her get into a meditation routine that puts her mind at ease, plus set physical goals like regular stretching exercises. She says: “I like that you can cheer on other people. That’s cool.”
Vim is made possible by Arthritis Foundation sponsors who believe it’s a great solution to help people with arthritis find their Yes.
A representative of Vim Inaugural Sponsor TYLENOL says:
“TYLENOL® is a proud partner of the Arthritis Foundation and an Inaugural Sponsor of the Foundation’s three-year plan to conquer pain. We have chosen to support Vim and the pain initiative because we believe in the power of encouragement and education as key tools in helping those who suffer from arthritis pain to lead fuller lives.”
A spokesperson for Flexion Therapeutics, another Vim Inaugural Sponsor, adds:
“As a company committed to bettering the lives of patients confronting painful osteoarthritis, Flexion Therapeutics is honored to support the Arthritis Foundation’s Vim app, which is a powerful tool aimed at helping patients with arthritis, including osteoarthritis, take both small and big steps in managing the chronic joint pain that debilitates so many with this disease.”
Joe Tolman, founder of HurtSkurt, Vim Participating Sponsor, says:
“Becoming a Partner with the Arthritis Foundation and being part of the launch of the pain initiative and Vim app was an absolute no-brainer for us. The goal of HurtSkurt® is to help people achieve pain relief in the most efficient way, and the goal of the Vim app is to help people suffering with arthritis manage their everyday pain. If we can help even one person per day to have a better day because our products, then we are doing something special. We couldn’t be more excited to be a part of this project.”
Get started with Vim today. And see for yourself how much it can help give you back what chronic pain takes away.
Six Kennedys put their mettle to the pedal at this year’s 21st annual bike tour in support of family and millions who have arthritis.
What has more than 500 wheels and legs, covers 525 miles in eight days and raises more than $1 million for arthritis? It’s the award-winning Arthritis Foundation’s California Coast Classic Bike Tour, presented by Amgen! This year’s 21st annual ride — along California’s iconic Pacific Coast Highway (California Highway 1) from San Francisco to Los Angeles — includes six members of one family. “Team Chrissie” members are four brothers and two sons — Philip, David, John, Charles, and David’s sons, Kiel and Brandon Kennedy. They are riding to honor John’s wife, Christine “Chrissie” Parker-Kennedy, who has lived with rheumatoid arthritis (RA) for 30 years, and Charles’ wife, Malia, who has had two knees replaced due to osteoarthritis. They also ride to raise awareness and funds to support vital resources and research for their extended family and the more than 54 million other Americans living with the daily challenges of arthritis.
We recently caught up with Team Chrissie during their ride prep to find out what keeps their wheels spinning.
Q: What are your top three reasons for riding the California Coast Classic (CCC)?
David, an 8-year CCC veteran: Thirteen years back, I was interested in a supported ride down the coast. I found the CCC, and I haven’t looked back. 1) It is a spectacular ride with fabulous support. 2) The cause. Supporting the Arthritis Foundation is so worthy. One of the programs that truly touched me was the summer camping program for children with arthritis, regardless of their level of abilities. 3) The people — folks do this ride for a variety of reasons. Many have some type of arthritis. The level of commitment and camaraderie is heart-warming. Every ride, I make new friends and renew old friendships.
Philip, team captain: I agree. Supporting the cause and my brother’s wife, Chris Parker-Kennedy, make it all the more meaningful.
“Having lived with RA for 30 years now, I am well aware of the need for research into this disease. Much progress has been made and the Arthritis Foundation has been unwaveringly supportive and encouraging. The fact that my brothers-in-law, my nephews and my husband are taking on this incredible commitment to ride in my name is about as heartwarming as it can get. Thank you. “
— Christine Parker-Kennedy
Q: What made you all want to ride together?
Brandon: The extended Kennedy family is a close-knit bunch. I’m only surprised more didn’t join in!
Philip: We are a very close family and wouldn’t consider doing it any other way.
Charles: And it just seems like a great way to spend some quality time with my brothers and nephews. Plus, John and David can be quite pushy! [John has ridden the CCC three times.]
Q: How much training have you done to prepare for the ride?
Brandon: Riding three to five times a week, varying in intensity.
Kiel: I’ve been running daily for about a year, but no bike riding. Recently, my girlfriend and I joined “the cult” of Peloton, though, so I’ll be putting some hard miles in on that thing!
Q: What have you found to be most successful when it comes to fundraising for the CCC?
Kiel: Just putting it on Facebook got me a fair amount of donations right out of the gate. People want to help out. It’s nice.
Q: What about the ride are you looking forward to most?
John: The start of the daily ride!
Brandon: I’m looking forward to the entire event! Really, what I’m looking forward to most is the simplicity of the experience. Wake up, ride, sleep. Rinse, repeat. Having the opportunity to do just that over hundreds of miles with people I love supporting a cause I care about is going to be a real highlight.
Kiel: Hanging with my fam.
David: Well, this year is incredibly special. Riding with two of my sons, together with three of my brothers, is insane. Doesn’t get any better.
Charles: The camaraderie with my brothers and nephews.
Q: If you’ve ridden the CCC in the past, what have you gained from the experience?
David: Riding the CCC affirms to me the goodness of people. When we are raising money for the Foundation, people truly like the idea of supporting the Foundation. And I see examples of the goodness every day on the ride, too.
Q: What makes the CCC so special?
John: Highway 1!
David: The route. The route. And the route. It’s incomparable.
Q: What’s the funniest or craziest thing that has happened during the CCC or one of your training rides?
David: Brother John and I were riding together in Butte County. John rides a tricycle, with two wheels in front and a large drive wheel in the back. We were coming down a country road, when John made a left turn and unintentionally rode up on an opossum literally walking across the road. The opossum was as startled as John, and it took off running as fast as it could — between the front wheels. It kept this up for the time it took John to bring his trike to a stop, at which time the opossum was able to make its escape. Have you ever seen an opossum gallop?
Brandon: Craziest thing for me has just been the general realization that I’m physically capable of using my own human power to travel for hundreds of miles.
Q: What advice would you offer to anyone considering doing the in-person or remote ride?
Philip: Just commit, start fundraising and allow others to hold you accountable not only to your monetary goal but also your training goal.
Charles: Just stick to it! Riding with a buddy or finding a local club would no doubt help with the motivation factor.
John: Just do it!
Get the California Coast Classic Experience
Whether you’re a beginner, riding an electronic bike, or an experienced roadie who likes to race, you, too, can get the California Coast Classic experience. This year it will take place Sept. 18 to 25. And you now have options — ride the fully supported tour in California or the RR X CCC, a remote ride of your choosing done at your leisure. Ride your local roads, on a trainer, at your vacation spot or down a mountain — all at your own pace. Cycle 525 miles or any distance and log each ride via a fitness app while connecting with a vibrant ride community for support, tips, motivation, rewards and lots of fun. Register now or learn more about the California Coast Classic (CCC) and watch the official CCC video. Got questions? Check out the FAQ page. If volunteering is more your speed, visit the CCC volunteers page.
Jenna Becker takes no days off, and she wouldn’t have it any other way. She practices, trains and plays softball or volleyball every day. No one would guess she has battled juvenile idiopathic arthritis nearly all of her life. They only know her for fast-breaking curveballs and hard-hit overhand serves.
Today, Jenna’s primary position is pitcher. She also plays first and third bases and is confident she can play any position her coaches need. “It’s unusual for a player with JIA in their wrists and fingers to become a pitcher, but I wanted to prove that I could do it,” she says.
Jenna was diagnosed at the age of 18 months. She had a swollen finger and was developing a limp.
“I don’t remember a time when I didn’t have JIA,” says Jenna, who is now 15. “It affected my ankles, wrists and fingers. It hurt to get out of bed, and sometimes my ankles were so swollen I didn’t want to wear shoes.”
Jenna was prescribed a biologic medication and responded well enough to remain active. She had a slight skip to her run and some kids would shy away from wanting to hold her hand, but she was determined that JIA wouldn’t hold her back.
It didn’t. When she was 7, her father gave her a glove and ball and quickly discovered she had an affinity for throwing and catching. He signed her up for softball. She fell in love with it the minute she stepped on the field.
A careful balance of therapeutics, a healthy diet and regular physical activity helped Jenna to get stronger and manage the pain as she grew. Her parents kept sugary and processed foods and drinks away from her, and they iced her joints after physical activity.
Her family worried about her being on a biologic for so many years, but they saw results.
“I remember flying to UCLA Medical Center. We weren’t looking for a second opinion about my condition, but instead what the treatment should be,” said Jenna. “I was very young at the time, but one thing that I never forgot is what the doctor told my parents. She said, ‘If you do nothing, this girl will grow up to have physical disabilities and possibly end up in a wheelchair. If you try [a biologic], there’s a chance she will have a different outcome.’”
Almost immediately after receiving her first shots, Jenna’s inflammation started to decrease. She remained on the drug for many years, receiving weekly shots at home. With her immune system weakened by the medication, Jenna got sick any time a family member or classmate got sick. But as she continued to grow stronger and stick to her regimen, she saw improvement. Instead of pain every day, now she only experienced it some days.
Her shots were eventually reduced from weekly to every other week to once a month and, finally, to none. All that remained was chronic inflammation and a painful trigger finger in her left hand where the pain was constant, made worse every time she played sports.
“No doctors would operate because of the JIA,” says Jenna. “They gave me cortisone shots that didn’t work. One told me I didn’t need surgery; all I had to do was give up softball and the pain would go away. That was not an option.”
Eventually, her family found a great hand surgeon. There were risks, but Jenna wasn’t willing to give up on her dreams without trying surgery first. Once healed, for the first time in her life, it didn’t hurt to play.
“Kids with JIA have to work twice as hard as everyone else to remain competitive,” said Jenna. “We have to work just as hard when nobody is watching. There are days when it’s over 110 degrees here but I’m outside hitting and pitching because it makes me stronger.”
Her JIA has been in a clinical remission for five years now, and Jenna does not have chronic pain any longer. She has the occasional day when she feels stiffness and discomfort, but she does stretching exercises to keep her joints limber.
“When my dream of playing college softball comes true, I won’t just be playing for me, but for all of the kids with JIA,” said Jenna. “Arthritis may be a part of us, but it does not define us. Anything is possible if you believe in yourself.”
—BRYAN D. VARGO
Daughter of Chil Wellness founder has made major progress, thanks to her dad’s natural solutions.
At just 15 months old, Aspen DeMeritt of Malibu, California, started limping after getting up from naps. A few months later, she had shooting pain in her legs that made her unable to stand. She was soon diagnosed with juvenile arthritis (JA) and was put on multiple medications to control her inflammation. Continue reading Aspen Finds Her Peace and Place Living With JA
By Julie Eller, Live Yes! With Arthritis Podcast Co-Host
An arthritis diagnosis comes with so many questions. How can I manage my pain? What should I do about my morning stiffness? What treatments will work best for a patient like me? Sometimes it is hard to know if you’ve asked all the right questions of your doctor.
One question that many people don’t realize they need to ask is, “What other diseases do I have to worry about now that I’m living with arthritis?”
Unfortunately, when you live with arthritis you are at a greater risk of developing other conditions as well. Whether they are related to the type of arthritis you have and how it affects you, side effects from treatment, or the mental weight of living with chronic pain, other conditions can arise for people with arthritis. In the latest episode of the Live Yes! With Arthritis Podcast, Rebecca and I got to talk with Dr. Amanda Nelson, a rheumatologist and professor with extensive experience in arthritis research. During the episode we discuss some of the conditions that commonly go with different types of arthritis and how they are related.
This episode served as a helpful framing tool for Rebecca and me. As patients, hosts of the show and employees at the Arthritis Foundation, sometimes it feels like we eat, sleep and breathe arthritis. But in talking with Dr. Nelson, we heard the gentle reminder that arthritis is a whole-body disease, even if the word simply means inflammation of the joints. And as such, arthritis can affect other parts of our bodies, leading to additional diseases.
Dr. Nelson shared that people with autoimmune forms of arthritis have systemic inflammation that can affect many different organ systems and increase the risk for conditions like cardiovascular disease. She pointed out that rheumatoid arthritis carries the same level of cardiovascular risk as diabetes due to systemic inflammation.
But arthritis-related conditions are not limited to folks who live with an autoimmune form of the disease. For people living with osteoarthritis, pain often makes physical activity and even sleeping through the night more difficult. This can lead to related problems like weight gain or sleep disorders. And importantly, the cascading impacts of arthritis can add up to a heavy mental health burden.
This episode reminded me that my arthritis symptoms do not live in isolation from my total health, and that when I am experiencing heightened anxiety and feelings of depression, they are linked to my chronic pain. It was also helpful to think about the conditions that I am at a greater risk of developing simply by virtue of having an autoimmune disease. While there are so many things that I can’t control with my arthritis, knowing that my risk of heart disease is higher than average does motivate me to take control of other areas of my life, especially physical activity and diet.
Sometimes the hardest part of arthritis is figuring out what questions we should ask of our health care providers. This episode is special to me because it encourages listeners to learn more about how arthritis can impact their whole body and the steps they can take to mitigate their risk of developing other conditions related to their arthritis. Listen today!