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Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Living with arthritis can lead to major stress. Which can lead to more pain! It’s a vicious cycle that can leave you mentally and physically exhausted. Research suggests that mindfulness practices can help people living with chronic pain. But the idea of even practicing mindfulness and meditation to break that pain chain can be scary.

Continue reading Live Yes! With Arthritis Podcast-Episode 2-Mindfulness

Greyson Chess Keeps Plugging Away

This 10-year-old boy from Ohio won’t let arthritis stop him from having fun, because he knows he can handle it.

Even when his juvenile arthritis is acting up and his joints hurt, Greyson Chess just keeps plugging away and rarely complains about his pain. An avid soccer player and skier, this active 10-year-old also enjoys lacrosse, basketball, snowboarding and going to the beach. During spring break earlier this year, he got to travel with his parents and two sisters, Ava and Piper, to Costa Rica. Continue reading Greyson Chess Keeps Plugging Away

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54 Million Reasons to Give on #GivingTuesday

Picture this: You’re walking through your local CVS Health store. Your hips and toes have already started burning. All you want to do is get back into your car to sit, but even that’s a challenge. As you make your way to the pain aisle, you want something — anything — to make it go away. You put a hot and cold compress into your cart. But bending down to lift the Epsom salt is going to be a challenge. Should you ask the stranger shopping next to you for help?

Continue reading 54 Million Reasons to Give on #GivingTuesday

OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 3

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Continue reading Arthritis Today’s Snapshots from the ACR Meeting: Part 3

OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 2

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Genes Play a Role in Disease Changes in Pregnancy
What do women with rheumatoid arthritis (RA) expect when they are expecting? The rule of thumb has long been that RA goes quiet during pregnancy but flares after delivery. But that’s not true for everyone, and researchers in Copenhagen, Denmark, and Oakland, California, are trying to figure out why. In two small studies, they looked at gene expression profiles of women with RA who had similar disease activity pre-pregnancy, and then again during the third trimester and at three months post-partum. They compared these gene profiles to those of healthy women. Researchers found a pre-pregnancy genetic signature that predicted improvement or worsening during pregnancy. They also found differences between the RA and healthy groups in gene expression during the post-partum period. –MARCY O’KOON

Patient Partner Perspective: Shannan O’Hara-Levi attended a couple sessions related to rheumatic conditions and pregnancy. As a patient of child-bearing age, she is concerned about having enough resources and information about family planning with RA but also how any reproductive health legislation impacts rheumatology patients.

 “Rheumatology patients and their rheumatologists need to strengthen their conversations about their reproductive health.” –Shannan O’Hara

Rheumatology patients who plan their pregnancies have better outcomes according to some of the research she heard at ACR, so Shannan wants other patients with RA like her to understand how vital it is to communicate and discuss any family planning with their doctors. She says this states the case for even more support for patient engagement in the decision-making of health care for arthritis.

Is Remission That Important Anyway?

A presentation by members of EULAR (the European League Against Rheumatism), deconstructed remission – that is, the absence of disease activity in inflammatory types of arthritis (such as RA). Titled “The Road to Remission is Long and Bumpy but Worth It in the End,” the presenters first examined how remission is measured. (Doctors use 17 different combinations of function scales, blood markers and joint exam results.) Another presenter looked at the benefits of remission, including better function, less disability and joint damage and longer overall survival – but noted that there is a trade-off between the aggressive treatment needed to achieve remission (more medication, more doctor visits and tests) and the benefits of achieving it. A third presenter examined whether certain medications are better for achieving remission, or if it’s the overall strategy that counts. (Hint: it’s the strategy.) And the last presenter took a look in the crystal ball to see if doctors will be able to predict remission using molecular changes, similar to methods used for certain types of cancer. The answer? Yes, but not yet. –ANDREA KANE

Machine Learning Used to Predict Flares
Doctors cannot predict which RA patients can successfully taper or stop biologics. A group of researchers set out to determine whether a machine could do better. They designed a computer algorithm that used real-world patient clinical data and analyzed variables, such as percentage change in biologic dose, disease activity, disease duration and levels of inflammatory markers. They found that a machine could learn to predict flares after tapering and saw its performance improve as more patients’ clinical data was added. The aim is one day to provide physicians with a reliable tool for guiding decisions about tapering medication. – MARCY O’KOON

Why Sky-High Biologic Prices?
Public spending in the U.S. on biologics almost doubled between 2012 and 2016 due mostly to drug price hikes over those years – not to more people getting access to them, one study found. Natalie McCormick, PhD, a post-doctoral fellow at Harvard Medical School and Mass General Hospital, and her team analyzed data from Medicare (Parts B and D) and Medicaid. In one analysis, for example, they determined that price increases for 11 biologics accounted for 56% ($1.7 billion) of the increased spending (after adjusting for inflation) in Medicare Part D, compared to 37% ($1.1 billion) for an increase in new users. Adalimumab (Humira) and etanercept (Enbrel), two of the oldest and most widely prescribed biologics, had the biggest increases in price. ––ANDREA KANE

Tapering Biologics When They’re Hard to Get
In the United States, people who take biologics and reach remission are often eager to taper off the medication, but in New Zealand, the decision is difficult, even though it’s recommended by EULAR. In her abstract session, “Rheumatoid Arthritis Patients’ Perspectives on Tapering of Biologics,” Lisa Stamp, PhD, of the University of Otago in Christchurch, explained that fewer biologics are available to people with inflammatory arthritis in New Zealand, where a government agency decides which drugs are subsidized. Patients must try and fail numerous other medications (from methotrexate to gold shots) for many months before qualifying for a subsidized biologic. “These people have been through a lot to get to a biologic,” Stamp said. As a result, they were anxious that if they tapered off it, they wouldn’t be able to get it again if their disease worsened. However, not having to get injections or infusions “makes you feel like you’re well.” Participants wanted to make the decision to taper with their rheumatologist, but better tools are needed to help patients make the decision and feel assured that their needs would be addressed. –JILL TYRER

Inflammatory Arthritis Infection Risks After Joint Replacement
Despite the good safety record of nearly 1 million total hip and knee replacement surgeries performed annually in the U.S., they are not without risk, including infections. A study presented by Susan Goodman, MD, director of the Integrative Rheumatology and Orthopedics Center of Excellence and the medical chief of the Combined Arthritis Program at the Hospital for Special Surgery, showed that rheumatoid arthritis (RA) patients are at a higher risk of developing a prosthetic joint infection compared to those with OA. In addition, the length of time after surgery that patients stayed at risk was longer for those with RA than OA. Dr. Goodman cited several reasons, including the use of medications such as immunosuppressants, having active RA, having disabilities, the implants themselves, tobacco use and revisions of previous implants. – BRYAN D. VARGO

Patient Partner Perspective: Laura Genoves attended this session, which brought up some major concerns for patients with RA like her.

 “Hearing that RA patients have an increased risk of infection after joint replacement surgery made me feel wary.” – Laura Genoves

Laura was glad to learn that researchers are trying to better determine what factors contribute to this increased risk of infection. People with RA must be aware of what can potentially happen post-surgery. All surgeries come with risks associated, but it’s a whole other level of risks to consider for people with RA, so Laura feels like this is definitely something patients should know and discuss with their rheumatologists.


OA Patient Guidelines

Arthritis Today’s Snapshots from the ACR Meeting: Part 1

The editors of Arthritis Today magazine were on the scene, collecting news and information to share with readers from the American College of Rheumatology’s (ACR) Annual Meeting, November 9-13, in Atlanta. Here are a few of the many interesting and enlightening research topics they learned about.

Anti-inflammatory Diet Improves Disease
Strawberries, apples, brussel sprouts on a tableThere has long been uncertainty whether diet influences disease activity in inflammatory arthritis. Two studies presented some evidence that it does. In one study, 17 patients with active rheumatoid arthritis (RA), defined as at least three tender and three swollen joints, followed an anti-inflammatory diet for two weeks. Blood tests before, during and after measured oxylipins, molecules involved in inflammation, pain and other cellular functions. The diet added turmeric, antioxidants, prebiotics and probiotics. It eliminated pro-inflammatory items, such as lactose (found in diary), gluten and red meat, and improved the ratio of omega-3 to omega-6 fatty acids. The subjects were found to have good diet adherence. After 14 days, a range of disease measures were significantly lower, and tests showed correlation with changes in blood levels of the oxylipins. The authors concluded that diet has the potential to complement medication and improve quality of life for patients with RA.  –MARCY O’KOON

Depression and Resilience
Inflammation has been shown to have a role in depression, but does that make depression an inflammatory disorder? No, emphasized Andrew Miller, MD, a researcher in Emory School of Medicine’s psychiatry department. Depression may be associated with the inflammation that’s at the heart of inflammatory diseases like rheumatic and psoriatic arthritis and lupus, but it’s not associated in otherwise healthy people with depression. (Biologics that have been used to target inflammation in depression have had no effect.)

In the same session, “Mechanisms & Mediators of Psychiatric Comorbidity in Rheumatology,” Afton Hassett, a psychologist and researcher in the University of Michigan’s Chronic Fatigue and Pain Research Center, explored the role of resilience in people with arthritis and pain. People with rheumatic diseases tend to have a more negative outlook than “healthy” people do, but positive emotions – which are key to resilience – are associated with less pain, less need for medications, earlier discharge from the hospital and other positive outcomes. The good news is that resilience can be learned. Hassett described some exercises, including these three: 1) Pick a future point, such as one or five years from now, and imagine being your best self, living to your full potential, then write about it in detail. 2) Every day write down three things for which you are grateful; as time goes on, you’ll become aware of even smaller things to appreciate. 3) Pick a day this week and do five kind things for others and one kind thing for yourself. – JILL TYRER

Patient Partner Perspective: Stacy Courtnay attended this session on pain, depression and anxiety and said it really resonated with her.

 “The more connections you have with people living in a similar situation as you, the better mental and emotional health you will have. Support groups are the key to managing your overall well-being.” – Stacy Courtnay

Stacy says “we need the support of each other” and being involved in the Arthritis Foundation has really helped her to make these connections since it is a big part of the mission. The Live Yes! Arthritis Network has played a huge role in helping her to get connected with people who understand her struggles.

The Problem of Sleeplessness
It’s no surprise to people with arthritis that pain interferes with sleep; research shows that the more significant correlation is that sleeplessness exacerbates pain. Anna Kratz, PhD, of the University of Michigan, and Daniel Whibley, PhD, of the University of Aberdeen in the U.K., discussed effects of poor sleep on people with arthritis and treatments in a session called “No More Counting Sheep: Evidence-Based Sleep Management.” (In fact, Whibley said, it takes 20 minutes longer to fall asleep by counting sheep than by using relaxing visualization.) He discussed the role of the circadian rhythm in different people’s sleeping patterns (“morning larks” vs. “night owls”) and the architecture of a night’s sleep (it’s normal to wake up a couple of times during the night). And he said people with rheumatic diseases typically have poor “sleep efficiency” – they spend more time lying awake relative to sleeping than other people do. Sleep deprivation leads to mental impairments as well as pain and fatigue, and people with sleep problems should be screened for the cause, such as obstructive sleep apnea or chronic insomnia – both of which are common among people with arthritis – or side effects of opioids or other medications.

Good sleep hygiene (getting regular exercise; keeping a dark, quiet bedroom; keeping a regular sleeping schedule; shutting off blue-light electronics, etc.) helps many people, but people with rheumatic disease may need more help. The American Academy of Sleep Medicine discourages the use of sleep medications and recommends cognitive behavioral therapy for insomnia (CBTi) as a first-line treatment. In the U.S., however, it’s hard to find people qualified to practice CBTi. (Whibley and Kratz suggested rheumatology practices have someone trained in CBTi.) “The most important thing is to be regular in your sleep-waking patterns, and that includes weekends,” Whibley said. If you don’t sleep well, seek help. “Don’t assume that poor sleep in part of the condition.” –JILL TYRER

Patient Partner Perspective: Cheryl Crow attended this session on sleep, which she stated was a very informative and engaging session. She was surprised by some of the information she learned when it comes to sleep and the rheumatic disease population. Cheryl said having a patient on this sleep panel sharing her story was powerful to witness as a patient herself. 

“Insomnia and obstructive sleep apneas are much more common in the rheumatic disease population than in the average person, and that 37-50% have some sort of disorder. I had no idea. Makes me want to get assessed.” – Cheryl Crow

She was moved to see that so many rheumatology professionals were in the room asking questions to get the patient perspective, demonstrating that patient engagement is crucial in providing better patient care.

Standard PRO Measures Miss Younger Patients
Patient-reported outcome measures (PROMs) are routinely used by doctors as well as in research, but Erika Mosor, a researcher at the Medical University of Vienna, Austria, found that the standard measures may not get a true view of younger patients. In her session, “When You Read This, You Really Feel Old: Perspectives of Young People with Inflammatory Arthritis on Patient Reported Outcome Measures from a European Qualitative Study,” she reported that patients aged 18 to 35 said the PROMs of daily functioning and other issues “seem like they’re for old people.” They don’t address technology, childcare, social life, sex, loss of friends and other issues relevant to younger patients. Because their concerns are overlooked, results may be skewed so these patients appear to be doing better than they are; some patients said they considered marking worse scores just to get their concerns recognized. PROMs should be more tailored to patients so they can be used more effectively in shared decision-making, Mosor said. – JILL TYRER


Meet Sabina Ratner: One of Our Newest Foundation Sponsored Fellows!

Because access to care is not always guaranteed, we’ve been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. This year we announced four new fellowship awards . One of those grants was offered to SUNY Downstate Medical Center, which recently announced their fellowship has been awarded to Dr. Sabina Ratner.

Dr. Ratner will be a welcome addition to this program. She began her undergraduate training at Brooklyn College, followed by graduate training as a physician’s assistant (PA) at SUNY Downstate in NY. She earned her medical degree from American University of Antigua College of Medicine in Antigua and Barbuda.

Dr. Ratner explains how she became interested in rheumatology:

As we go through life, events that may be deemed unfortunate often result in serendipitous moments. It wasn’t until a terrible accident where I was hit by a car that I realized I had a second chance at life and found my true calling.

I worked as a PA at NY Methodist Hospital for seven years before my accident. During my employment, I covered a variety of services, and I discovered that there were many facets to medicine that were fascinating, stimulating and rewarding. My experiences helped sharpen my clinical acumen and appreciation and understanding of medicine. Initially, I worked with the department of surgery, which included general surgery and orthopedics. My duties included patient care in the clinic and floors, emergency room admissions, pre- and post-operative care and counseling patients. As a PA, I was inspired by the passion and wisdom of the people I worked with. My colleagues recognized my aptitude for medicine and strongly encouraged me to get my medical degree.

After my accident, I went to rehab for physical therapy for my left leg and ankle. There, I met many people who were suffering from rheumatoid arthritis, osteoarthritis, back pain and hip and other joint problems. I empathized with these patients. Seeing people in pain and losing their functional mobility made me realize I wanted to seek a profession where I could help alleviate the pain and suffering of others. I found the rehab experience to be very rewarding and realized that, with proper treatment, people were able to regain their function, mobility and independence. My interest grew more and more for the field of rheumatology, so I went back to school and earned my medical degree.

The next stage of this journey was medical residency. I chose to explore the field of rheumatology further and opted to take as many electives as I could to learn more about this field. The experience further piqued my interest and helped me realize how fascinating and intricate rheumatology is.

There are many reasons why I want to join the field of rheumatology. I find it to be a very diverse field that is rapidly evolving and allows for the treatment of a broad range of conditions. Also, it is a specialty that can be challenging because a qualified physician must be able to treat different disease processes, solving medical mysteries. It is exciting and gratifying to help improve the quality of lives of others. I want to train and learn from the dedicated experts, which will give me the opportunity to broaden my understanding and knowledge about the disease progression and treatment with new agents that prevent further destruction in the body.

While the clinical experience is important to me, I’m also interested in pursuing biomedical research. Fundamentally, I am intrigued by the immune system. With the advances in disease-modifying agents and with new immunotherapies, we can improve patients’ lives. That’s why I hope to follow my passion and become a rheumatologist, because to me it’s very rewarding to see my patients get back to their routine and enjoy their life.

Thanks to the generosity of our donors, Dr. Ratner will be able to follow her dreams and become a valuable addition to the number of new rheumatologists through this fellowship program.


Sisters by Birth, Friends by Choice

Lauren McAllister, Kristen’s big sister, found her role and urges other JA siblings to do the same.

“We’re lucky to be sisters, but we choose to be best friends,” says Lauren McAllister of her relationship with her sister, Kristen McAllister.

(L-R) Kristen & Lauren

Kristen began a long and painful journey with juvenile idiopathic arthritis 15 years ago, when she was 10 years old and Lauren was 12. It hasn’t been an easy road.

“It is devastating to watch someone you love have to fight a battle that doesn’t have a cure,” says Lauren. “Where the medications that are supposed to help don’t always help. To have the doctors who are supposed to ‘fix you’ not know what to do. It’s a feeling of helplessness. Not only can I not help her, but neither can the physicians who are supposed to be the ‘fixers.’”

Previously an active child, Kristen had to give up dancing, cheerleading and gymnastics — activities that she had grown up participating in with Lauren.

“Growing up, she would follow in my footsteps and do the same activities I did,” says Lauren. “We started dance, then gymnastics, which we got to do together. It was neat to have those experiences together.”

But arthritis changed their lives. Kristen could no longer follow in Lauren’s footsteps.

“I didn’t know how to walk her through it. I didn’t know what the right words were, and I couldn’t take the pain away,” Lauren says.

Kristen had to choose her own path in this challenging landscape, with Lauren by her side.

“She is unstoppable,” says Lauren. “She has made up in her mind that she’s not going to let this hold her back from doing the things she loves and wants to do. As a family, we’ve backed her 100%. We make it work. She will get out of her wheelchair and crawl upstairs in a restaurant, and we’ll bring the wheelchair around so she can get right back in it.”

(L-R) Lauren & Kristen take a stroll

Lauren goes on: “Something I really admire about her is that she has every reason under the sun to take herself out of situations, not partake in activities or go certain places because it’s harder or inconvenient. But she won’t allow herself to live that way. We’ve been so fortunate with the support of our friends and extended family. We’ve all just wanted her to experience the life a 25-year-old should experience.”

While Lauren and Kristen have chosen to be sisters, they’ve also chosen to take a specific outlook on life. “We choose joy,” says Lauren.

“It’s harder to do on some days than others, and it may be weeks or months later before you find it. But in every situation, we try to find the joy in it. We’ve been through some pretty dark times. But we’ve chosen joy. If you keep looking for it, you’ll eventually find it.”

Arthritis is a life-altering disease for 54 million Americans like Kristen and Lauren. You can help conquer it on Giving Tuesday. Your generous donation fuels life-changing research and resources right away.

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