All posts by Arthritis Foundation

Team PLC

This is the second of two profiles this month of people who are sharing their experiences as members of the Arthritis Foundation’s Patient Leadership Council (PLC). Learn how to apply to join the PLC at the end of this post.

By Laura Genoves

The Patient Leadership Council (PLC) was formed by the Arthritis Foundation in 2017.  I have been fortunate to serve as a member of this diverse group of individuals from across the country since its inception.

In the days before COVID-19 (remember those days?) I would volunteer in person at my local Arthritis Foundation Office in Seattle once or twice a month. A staff member mentioned the newly forming PLC to me and encouraged me to apply. At the time, I was just finishing up my Limited License Legal Technician (LLLT) studies at the University of Washington School of Law and working toward my passion for affordable access to justice. LLLTs offer affordable family law services to those living in Washington State. Being licensed as an LLLT has provided the opportunity for me to give voice and meaning to the stories of those who traditionally could not afford the full services of an attorney. Now I provide licensed and professional assistance to those not able to represent themselves.

Being a member of the PLC has also afforded me the chance to be a voice for others. As a mom of two young adults (and two rescue golden retrievers), I share my own personal experiences living with rheumatoid arthritis (RA) and now osteoarthritis (OA), but I also advocate for the millions of others living with arthritis and related diseases. As a group, the PLC has discussed such timely topics as access to health care, prescription drug copays, out-of-pocket costs and CBD, and we have reviewed proposals under development by the Arthritis Foundation. We share with each other in a safe, confidential environment and exchange tips, tricks and tears.

The feedback we, as the PLC, provide to the Arthritis Foundation often illuminates, and it always enriches the Foundation’s offerings. The Foundation listens to the diversity of our voices and includes our feedback in its materials and programs. It’s fulfilling to see that we are making a difference. I have learned so much from the other council members and have made friends I can reach out to across the country.

If you have a passion for ensuring diverse voices are heard and are willing to be vulnerable and share your experience, consider being part of the PLC.  All are welcome to the table and your lived experience is valued.

Interested in applying to join the Patient Leadership Council (PLC)? Applications are currently open! You can apply HERE. Deadline for application submissions is 11:59 p.m. Oct. 15, 2021. If you are selected for next steps, we will notify you by early to mid-November. Thank you for your interest! And spread the word! 

Cristina Schaefer

Cristina Schaefer is a Chronic Strength Champion, which means she doesn’t just take control of her pain — she battles back. Read to learn how Cristina has found ways to overcome her rheumatoid arthritis.

Seventeen years ago, my life changed when I was diagnosed with rheumatoid arthritis. As someone who had always been active and athletic, the diagnosis hit me like a ton of bricks. Some days, I’d wake up with my elbows completely locked in a bent position, or my knees would lock when I’d stand. After a few years on biologic treatments, I was able to live, work and play again with little to no pain most days.

When my husband and I decided to start a family, I had to get off the medication that had kept me active and relatively pain-free for over 10 years. It was a stressful and painful time, but ultimately when our daughter was born, it was so worth it. Within a week of her birth, my RA symptoms came back with a vengeance. All the required and loving tasks as a new mom — holding her, snapping onesies, changing diapers — suddenly became impossible. Soon after, I met with my doctor to start the process of a new treatment plan.

Staying in control

Now, almost five years later, my doctor is still working with me to get me back to the controlled state I was in. Some days are great, others are not so great. All I can do is take each day as it comes and fight. I’ve said that a good measure of control over my arthritis revolved around the ability to give my daughter a bath and braid her hair at night without pain after working a long day.

Recently, I was paired with a medication that has helped me regain some of that control. I’ve found that setting goals for myself helps me stay motivated and get even stronger. When the Arthritis Foundation launched the Vim app, I downloaded it right away and started tracking my progress. After crushing my initial goal, now I have my sights set on new weightlifting and other physical activity goals to support my physical health, so I can ensure my well-being for many active years to come as my daughter grows. For arthritis patients, it’s so hard to find fitness resources and goals that don’t feel out of reach, and Vim is catered to us and our needs.

When I have downtime or periods of rest and recovery between my exercise regimens, I have found getting back to the gym is easier when I use daily affirmations. Lately these include telling myself I’m doing my best, I believe in myself, all progress is progress and I will listen to my body.

Connecting to resources and the Arthritis Foundation community

In researching pain management and sleep deprivation — the two areas I am often challenged with the most when it comes to my RA symptoms — the Arthritis Foundation has been a crucial resource in finding the helpful information I need. Over the years, this has included informative webinars, the Live Yes! With Arthritis podcast, blog posts on the topics, dietary resources and, most recently, in-depth information on using CBD to help with pain and sleep deprivation. I haven’t tried CBD yet, but I feel much more educated on it, the ways to use it and the pros and cons to the different methods/applications of it.

Since the beginning of my journey with RA, I have been involved with the Arthritis Foundation through Walk to Cure Arthritis. I have connected with so many helpful resources and met many inspiring and supportive people through this community. This year, I am honored to co-chair the National Walk to Cure Arthritis and bring my ideas and passion to the national level. When I’m not busy working as a social media professional or spending time with my family, I also serve as vice chair on the Foundation’s Houston leadership board and the patient leadership council.

Become a Chronic Strength Champion like Cristina. Head to ChampionSweepstakes.com to take the first step in conquering your chronic pain today.

Katie Roberts

Katie Roberts is a Chronic Strength Champion, which means she doesn’t just take control of her pain — she battles back. Read to learn how Katie has found ways to overcome her psoriatic arthritis.

When I was 17, I was told I wouldn’t live to see my 21st birthday. My immune system and vital organs were taking a hit from the impacts of psoriatic arthritis — a condition I’d already battled for many years.

And over the last three decades, I’ve had no choice but to learn how to not only manage my condition, but also to live a full life. Like a science, I’ve nailed down how to go about an active routine that involves yoga, meditation, photography and regular exercise — even stand-up paddle boarding. It’s not all fun and games, but fortunately, I’ve had support from the Arthritis Foundation to help battle against my pain.

Building my pain management toolkit

In my free time, I stay active with yoga, walking, Pilates and stand-up paddle boarding, as well as meditation, acupuncture, massage, guided imagery and aromatherapy for pain management. I’ve found that having several tools in my toolkit — some of which were inspired by the e-book, “60 Ways to Fight and Prevent Pain,” for staying active while managing pain — has been really important in maintaining my health overall.

To everyone living with chronic pain, I recommend using the Arthritis Foundation’s tips for making a pain management plan guide for getting started. This approach has helped me set goals and stick to them, while allowing me to customize my plan when unexpected pain creeps in.

For example, on days when I’m in a lot of pain, I know to scale back my yoga or SUP workout or to weave in other supportive measures like Epsom salt baths and heating pads. Having a variety of tools, resources and proven pain management techniques helps me be prepared for any challenges that arise, even if it means changing my plans.

Influencing change for good

One of the driving reasons why I’m a patient advocate volunteer with the Arthritis Foundation is the difficult time I went through as a child. At the time, there were no quality medications available to help treat my arthritis and related comorbidities. I want to make sure no one else ever has to experience what I went through in the early treatment stages.

I am so fortunate that today I have access to quality health care and the ability to afford it through my employer’s insurance. Thanks to innovations in medicine, I feel I have been given a second chance at life. I want everyone going through a difficult time with arthritis to feel hopeful that they, too, can get a second chance.

In my volunteer work as an advocate, I meet with legislators to help them understand the wide-reaching impact they make on various health care-related initiatives. It’s empowering to realize how one story — my story — has the power to influence change for good and give others hope. It’s what I love about being a patient advocate and why it’s my life’s mission to continue the work.

Become a Chronic Strength Champion like Katie. Visit ChampionSweepstakes.com to take the first step in conquering your chronic pain today.

Make Time for Mindful Movement

By Rebecca Gillett, MS OTR/L, Live Yes! With Arthritis Podcast Co-host | Sept. 1, 2021

When you live with arthritis, you know pain can be a daily occurrence or a regular state. But this month, Pain Awareness Month, we must raise awareness to others about the debilitating pain arthritis can bring and how it can affect our ability to do the things we want, need and love to do. By raising awareness about arthritis, we can advocate for our health care needs and advance research for better treatments — and eventually a cure.

It’s also a time to take a hard look at what we are actively doing to manage our own arthritis symptoms and revisit our treatment plans for keeping pain at bay. Has the stress of the pandemic gotten your routine off kilter? Are you moving more or less? Has your pain been better or worse? What are you doing to take control?

To be completely honest, I’m not doing enough. The past 18 months feel like a constant battle to just survive each day, struggling to balance work with taking care of my family, staying safe and healthy during a pandemic and actively doing the things I know help me manage my arthritis symptoms. Luckily, for the most part my arthritis pain levels are not so bad right now. My medication is keeping my pain at a very minimal level — thank you, science! — and I am physically functioning pretty well. Mentally, that’s another story that we’ll get to in a later episode.

One thing that has helped me through this crazy COVID-19 pandemic is the practice of mindfulness. And one thing I have NOT been doing enough of is movement. I know, “Practice what you preach, Rebecca.”

Working from home has certainly lowered the number of steps I take each day. My routines are all off. I was doing a good job of walking and stretching at the start of the pandemic, but my stress levels peaked to an all-time high and I just stopped moving as much. Who is with me? Please tell me I’m not alone.

Recording this episode, Mindful Movement, Part 1: Tai Chi, was a good reminder to me that I needed to move more. I can incorporate the mindfulness techniques I’ve learned into movement and get back to being more physically active. Whether I’m having a lot of pain or not, tai chi is a great way to get moving in a gentle, mindful way.

Our guest expert, Dr. Paul Lam, the creator of the Tai Chi for Arthritis program, is a family physician and world leader in the field of tai chi for health improvement. His soothing voice alone helped put my co-host, Julie, and me at ease, bringing a sense of calm to our chaotic, frenzied day. His personal journey with arthritis since he was a young boy is incredibly inspiring. His passion to help others with arthritis is contagious. He has helped millions across the globe learn the practice of tai chi to manage arthritis, so I know he will be able to help you.

Tune in to this Tai Chi episode to learn more about the practice, the research behind its benefits and how you can get started right away. I’m new to this practice and just getting started. Join me on this journey and let’s get mindfully moving together.

FDA Strengthens Warnings for Xeljanz, Olumiant and Rinvoq

By Jill Tyrer | Sept. 3, 2021

The Food and Drug Administration has issued warnings about the use of tofacitinib (Xeljanz and Xeljanz XR) as well as baricitinib (Olumiant) and upadacitinib (Rinvoq). All three belong to a medication class called Janus kinase (JAK) inhibitors and are used to treat arthritis and other inflammatory conditions.

A large, randomized safety clinical trial compared the use of tofacitinib for rheumatoid arthritis (RA) with a different type of drug, called tumor necrosis factor (TNF) inhibitors. Results showed a higher risk of heart-related problems, including heart attack, stroke, as well as cancer, blood clots and death with tofacitinib than with anti-TNFs, according to the FDA’s announcement. As a result, the FDA will require a “boxed warning” on the package, its most serious warning.

But if you take one of these medications, don’t stop, doctors say. Not enough data is available to understand exactly how to interpret the announcement and who might be affected.

“There’s nothing in this that says there’s an urgent need to stop the drug, and people should absolutely not stop on their own without discussing with their rheumatologist,” says Eric Ruderman, MD, rheumatologist and professor of medicine at Northwestern University Feinberg School of Medicine.

Tofacitinib is approved to treat polyarticular juvenile idiopathic arthritis, psoriatic arthritis and rheumatoid arthritis, as well as ulcerative colitis. It is used off-label in certain cases for psoriasis and for hospitalized COVID-19 patients. Baricitinib and upadacitinib are each approved to treat RA.

Safety Trial

When it approved tofacitinib, the FDA required drugmaker Pfizer to conduct the safety trial in RA patients who were taking methotrexate to find out its risks for heart issues, cancer and infections. Trial participants were over 50 years old with at least one risk factor for heart disease. Researchers looked at two doses of tofacitinib — 5 mg twice a day, which is approved for RA treatment, and 10 mg twice a day.

The FDA earlier this year warned about an increased risk of blood clots and death only with a higher dose of tofacitinib. But with the conclusion of the trial, results show the risks are also increased with the lower dose. The FDA now will limit the use of these JAK inhibitors for use only in patients who have not responded adequately to TNF inhibitors.

The trial was designed as a “non-inferiority study,” trying to show that the risk of using tofacitinib was no higher than with TNF inhibitors. “Essentially, they didn’t meet that non-inferiority, so they weren’t able to say with certainty that Xeljanz was no worse than TNF [inhibitors] for some of these safety events,” Dr. Ruderman says.

Questions Remain

Rheumatologist Jasvinder Singh, MD, MPH, professor of Medicine and Epidemiology at University of Alabama, Birmingham, and director of rheumatology research at Birmingham VA Medical Center, is waiting for more information before drawing any conclusions about who should be concerned and to what extent. The study itself was not yet available.

“I’m an epidemiologist so I like looking at the numbers. That usually helps me in understanding what the true risk is. That’s why I’m a little skeptical about making any definitive conclusions,” he says. For example, a 52-year-old woman with hypertension and a 62-year-old man who smokes, has high cholesterol and diabetes, both fit the profile of those in the study. “But those are two very different profiles,” he explains. “So when we say cardiovascular risk factors, which ones, how many, how does that differ by age and sex?”

Plus, Dr. Ruderman adds, “having RA itself is a risk factor for cardiovascular events and blood clots and cancers. Is everybody high risk? We don’t know.”

Drs. Singh and Ruderman also want to learn more about the warnings for baricitinib and upadacitinib. Safety trials have not directly compared either of those to anti-TNFs, but because they work in the same way in the body that tofacitinib does, the FDA expects the same outcomes and extended the warnings to them.

“What [the FDA] said is they don’t have any data for Rinvoq or Olumiant, but since they’re kind of the same class with a similar mechanism, they don’t know that those don’t have the same issues, so they’re going to include the same kind of language in those labels as well,” Dr. Ruderman says.

Drug Options

Tofacitinib, approved in 2012, was the first JAK inhibitor approved to treat arthritis. Baracitinib followed in 2018, and upadacitinib the following year. They are seen as an alternative to biologics and are preferred by many patients because they are in pill form rather than injection or infusion.

Still, JAK inhibitors are not as widely prescribed for arthritis as other medications, including biologics, which have been around longer and have a more robust track record. Dr. Singh estimates about 10% of eligible patients use JAK inhibitors.

Several options are available if you and your doctor decide it’s a good idea to switch. But Drs. Ruderman and Singh are unlikely to advise their patients to make any changes until they have more information, they say.

“Until I see the final recommendations from the FDA and the data from the study on which they’re based, I don’t really know what to tell them, so I’m not going to change anybody’s medicine until I have more information,” Dr. Ruderman says.

What Should You Do?

If you take one of these medications, don’t stop taking it, but be aware of the warning, and reach out to your rheumatologist for guidance.

“All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks,” the FDA says in the statement. “However, if you are a current or past smoker, or have had a heart attack, other heart problems, stroke or blood clots in the past, you should tell your health care professional as these may put you at higher risk for serious problems with these medicines.”

The FDA recommends that you seek emergency care if you experience any of the following, which could be a sign of a heart attack, stroke or blood clot:

    • Discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back
    • Severe tightness, pain, pressure or heaviness in your chest, throat, neck or jaw
    • Pain or discomfort in your arms, back, neck, jaw or stomach
    • Shortness of breath with or without chest discomfort
    • Breaking out in a cold sweat
    • Nausea or vomiting
    • Feeling lightheaded
    • Weakness in one part or on one side of your body
    • Slurred speech
    • Drooping on one side of your mouth
    • Swelling of a leg or arm
    • Leg pain or tenderness, or red or discolored skin in the painful or swollen leg or arm

And tell your doctor if you experience any of these symptoms:

    • Swelling of lymph nodes in your neck, armpits or groin
    • Constantly feeling tired
    • Fever
    • Night sweats
    • Persistent or worsening cough
    • Difficulty breathing
    • Hoarseness or wheezing
    • Unexplained weight loss

Updated Sept. 5 with comments from Drs. Singh and Ruderman

Tonya Horton

Tonya Horton is a Chronic Strength Champion, which means she doesn’t just take control of her pain — she battles back.  Read to learn how Tonya has found ways to overcome her osteoarthritis.

I’ll never forget the surprised look on my new doctor’s face when she entered the examination room four years ago.

“I wasn’t expecting to see you,” she said. “Your X-rays show the knees of a 70-year-old woman.”

Yes, my osteoarthritis diagnosis was a surprise. But it shouldn’t have been. Osteoarthritis (OA) disproportionately impacts women — especially women of color. It isn’t uncommon for a Black woman like me to develop osteoarthritis, but this isn’t universally known.

That’s why I am dedicated to sharing my story to uplift other OA patients who may not know they have access to resources and the support of others who understand what they’re going through. I’ve turned this passion into conducting research on the inequities in patient care experienced by women of color. We still have a long way to go, but I’ve found that the more I can share my story, the better.

My journey through pain
Four years later, I have good days and bad days, but there are very few “no pain” days. To help reduce the bad days, I’ve found strategies to keep my pain in check. It’s a journey — but I do everything I can to take control of my pain so I can live life on my own terms.

My medication options are limited due to allergies, so I’ve had to learn complementary methods of pain management — a ton of which I learned through the Arthritis Foundation’s e-Books; my favorite is Coping & Comfort, which has a lot of firsthand advice from arthritis patients.

I’ve also found that stress can make my symptoms even worse, so one thing I started doing is meditating. Whether it’s a one-minute or five-minute meditation, I find taking a few minutes out of the day to reset can help ground me, take my mind off my pain or help me feel a little better after a sleepless night.

As another form of self-care, I practice yoga as often as I can. Hatha yoga, especially, has been great for my pain relief because it helps me move and stretch in ways I never could’ve imagined.

In addition to making tweaks to my daily routine, I had to make big lifestyle changes to accommodate my situation: I relocated to a single-story home to avoid using stairs and purchased an arthritis-friendly car to make my day-to-day easier.

Support from others
Right after my diagnosis, I was hesitant to open up about my arthritis to others — even to my family. It may seem backwards, but I found strength by first connecting with total strangers. I’ve found community through the Arthritis Foundation, and now I’m a member of their Patient Leadership Council. Talking about my story with others who “get it” has given me the confidence to talk to my family, friends and co-workers. There are Live Yes! Connect Groups in a lot of places, completely run by volunteers. People come together virtually and in person, when safe to do so, to share stories.

Another way I find support is through the new Vim app — a tool I wish I had when I was first diagnosed. Through the app, I’m able to focus on my physical pain while assessing my mental health as well. Mental health isn’t often top-of-mind when dealing with a physically debilitating disease like arthritis, and the app’s social networking component allows me to connect with even more people facing similar battles.

At the end of the day, my biggest mantra is I don’t have to sacrifice the fullness of my life because I have arthritis. For those living with a chronic illness, they sometimes reduce their life to the bare minimum, but I refuse to do that. I can, and do, live a full life with arthritis.

Become a Chronic Strength Champion like Tonya. Visit ChampionSweepstakes.com to take the first step in conquering your chronic pain today.

How to Find Trusted Arthritis Info

By Arefa Cassoobhoy, MD, MPH, Chief Medical Editor, VP Medical Affairs, Everyday Health Group

Hello everyone! My name is Dr. Arefa Cassoobhoy, and I’m honored to be the guest expert on Episode 41: “Finding Trusted Arthritis Info” of the Live Yes! With Arthritis Podcast. I’m an internal medicine doctor and the chief medical editor at Everyday Health, a digital health information site. My No. 1 priority in this role is for people like you to be well-informed as you make decisions and take action along your health journey each and every day.

The key in providing quality health information is to create content that’s useful, easy to read and interesting — and never boring! At Everyday Health, I work with a talented team of journalists and medical experts to produce articles, videos and infographics about a range of health topics, including the various types of arthritis. The content is up-to-date and grounded in evidence-based medical information and real-world patient and clinician experiences.

Aside from the Arthritis Foundation and Everyday Health, I know it can be challenging to find a  trustworthy health website. But online health information is valuable as you familiarize yourself with medical terms, understand how your body is or isn’t working properly, follow through with self-care and lifestyle changes, and even in helping you sort through your treatment options.

And because time with your doctor is usually limited, it’s necessary to be a savvy patient and come prepared with questions — and to leave ready to do some online homework to better understand what your doctor told you. Online health sites are a great source for this prep work and follow-up and, importantly, can also be a place to be inspired by other people’s stories and experiences.

During this episode, I share with Rebecca and Julie how to evaluate a health article for credibility and where to go to find the latest information about your type of arthritis. Some quick tips:

  • Look closely at the page. Is there a date on the article that allows you to see if the information is up-to-date?
  • Is it written and reviewed by qualified experts, and do they list their sources to show they’ve done their research?

Another key tip: If something sounds like an advertisement, it probably is. You may need to dig deeper by going to the About page of a website to find out if they are committed to educating the public about a health issue — or do they seem to be raising awareness about a product to sell? If you’re in doubt after a quick check, disregard the information and leave the site. It should be easy to tell that medical information is solid on your go-to trusty sites.

We also talk about how to find the latest research information about arthritis. Your doctor is the best place to start in terms of asking what online sources may be most relevant for you. Then when you dive in, there are some cool tricks on Google to focus your search and get to relevant scientific articles fast. For those of you who need to understand a specific research study, I also share tips on how to navigate and understand the various sections of a study. And depending on what kind of information you’re looking for, your best option could be to read expert-written “review” articles that doctors consult for information and practice guidelines on how to take care of a patient with a specific condition.

The most important thing to remember is that you don’t have to become a medical expert to take care of your health. With a few helpful tips, you can harness online sources to learn about your condition, which can lead to more productive and satisfying conversations with your health care providers and inspire and enable you to live a healthier life on your terms.

Take action today. Tune in to the podcast now.