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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 readingLive Yes! With Arthritis Podcast-Episode 2-Mindfulness

Greyson Chess Keeps Plugging Away

这名来自俄亥俄州的10岁男孩不会让关节炎阻止他玩乐,因为他知道自己能应付得了。

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 readingGreyson Chess Keeps Plugging Away

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54 Million Reasons to Give on #GivingTuesday

想象一下:你正穿过当地的CVS Health商店。你的臀部和脚趾已经开始燃烧了。你唯一想做的就是回到车里坐下,但即使这样也是个挑战。当你走向疼痛通道时,你想要一些东西——任何东西——让疼痛消失。你把冷热敷布放在购物车里。但弯腰拿起泻盐将是一个挑战。你应该向在你旁边购物的陌生人寻求帮助吗?

Continue reading54 Million Reasons to Give on #GivingTuesday

OA Patient Guidelines

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

The editors ofArthritis Todaymagazine 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 torheumatic 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

根据她在ACR听到的一些研究,计划怀孕的风湿病患者会有更好的结果,所以山南希望其他像她这样的风湿性关节炎患者明白,与医生沟通和讨论计划生育是多么重要。她说,这说明有更多的支持病人参与到关节炎的医疗决策中来。

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 ofArthritis Todaymagazine 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 table长期以来,人们一直不确定饮食是否会影响炎性关节炎的疾病活动度。两项研究提供了一些证据来证明这一点。在一项研究中,17名活动性类风湿关节炎(RA)患者(定义为至少三个疼痛和三个肿胀的关节)遵循了两周的抗炎饮食。在测量氧脂素、参与炎症、疼痛和其他细胞功能的分子之前、期间和之后的血液测试。这种饮食添加了姜黄、抗氧化剂、益生元和益生菌。它消除了促炎成分,如乳糖(在日记中发现的)、面筋和红肉,并提高了omega-3和omega-6脂肪酸的比例。研究发现,这些受试者有良好的饮食坚持。14天后,一系列疾病指标显著降低,测试显示与血液中羟脂素水平的变化有关。作者的结论是,饮食有可能补充药物治疗和改善风湿性关节炎患者的生活质量。–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 Courtnayattended 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
对于关节炎患者来说,疼痛会影响睡眠并不奇怪;研究表明,更显著的相关性是失眠加剧疼痛。密歇根大学的Anna Kratz博士和英国阿伯丁大学的Daniel Whibley博士在一个名为“不再数羊:循证睡眠管理”的会议上讨论了睡眠不足对关节炎患者的影响和治疗方法。(惠布利说,事实上,数羊入睡要比放松想象多花20分钟。)他讨论了昼夜节律在不同人的睡眠模式中的作用(“早起鸟”vs.“夜猫子”),以及夜间睡眠的结构(夜间醒来几次是正常的)。他还说,患有风湿病的人通常“睡眠效率”较差——他们醒着躺着的时间比其他人睡着的时间更长。睡眠不足会导致精神障碍以及疼痛和疲劳,有睡眠问题的人应该筛查其原因,比如阻塞性睡眠呼吸暂停或慢性失眠——这两种情况在关节炎患者中很常见——或阿片类药物或其他药物的副作用。

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 Crowattended this session on sleep, which shestated 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.


“与普通人相比,在患风湿病的人群中,失眠和阻塞性睡眠呼吸暂停更常见,37-50%的人有某种障碍。我完全不知道。让我想去做评估。” – Cheryl Crow

她看到房间里有这么多风湿病专业人员在问问题,以了解患者的观点,这让她很感动,表明患者的参与对于提供更好的患者护理至关重要。

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 ourfellowship initiative.This year we announcedfour new fellowship awards.其中一笔奖学金提供给了纽约州立大学南部医学中心,该中心最近宣布,他们的奖学金已授予萨宾娜·拉特纳博士。

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:

在我们的生活中,可能被认为是不幸的事件往往会导致偶然的时刻。直到一场可怕的车祸,我被一辆车撞了,我意识到我有了第二次生命的机会,找到了我真正的使命。

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.

事故发生后,我去康复中心对我的左腿和脚踝进行物理治疗。在那里,我遇到了许多患有类风湿关节炎、骨关节炎、背痛、髋关节和其他关节问题的人。我同情这些病人。看到人们在痛苦和失去他们的功能性活动能力,让我意识到我想寻求一种职业,在那里我可以帮助减轻别人的痛苦和痛苦。我发现康复经验是非常有益的,并意识到,通过适当的治疗,人们能够恢复他们的功能,行动和独立。我对风湿病越来越感兴趣,所以我回到学校,获得了我的医学学位。

这段旅程的下一阶段是医学实习。我选择了进一步探索风湿病领域,并选择了尽可能多的选修课来了解这个领域。这次经历进一步激起了我的兴趣,帮助我认识到风湿病是多么迷人和复杂。

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.

虽然临床经验对我很重要,但我也对从事生物医学研究感兴趣。从根本上说,我对免疫系统很感兴趣。随着疾病修饰剂和新的免疫疗法的进步,我们可以改善患者的生活。这就是为什么我希望追随我的热情,成为一名风湿病学家,因为对我来说,看到我的病人回到他们的日常生活,享受他们的生活是非常值得的。

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

克里斯汀的姐姐劳伦·麦卡利斯特(Lauren McAllister)找到了自己的角色,并敦促JA的其他兄弟姐妹也这样做。

“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.

“她是不可阻挡的,”劳伦说。“她已经下定决心,她不会让这件事阻碍她去做她喜欢和想做的事情。作为一个家庭,我们100%支持她。我们让它工作。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.

“有些日子做起来比其他日子难,可能几周或几个月后你才会发现。但在每一种情况下,我们都试图从中找到快乐。我们一起度过了一段非常黑暗的时光。但我们选择了快乐。如果你一直找,你最终会找到的。”

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.

Make aDonation.改变关节炎的未来。