Birth of a rheumatoid arthritis blog

This month the RA Warrior website—and blog—began its 12th year. In 2008, I dreamed of building a rheumatoid arthritis blog and website to bring better answers to people with RA that I’d already begun to know and love—and many thousands I was yet to meet. On May 17, 2009, I sat on a lawn chair next to 4-year old Roo on his swing and just started the blog. There were months of notes and lists and research… but I just typed a short blog post from my heart about how it felt sitting there with RA—unable to swing or build the rheumatoid arthritis blog that I dreamed of. (Here’s a link to that first RA blog post.)

Mission of the rheumatoid arthritis blog

The mission from day one: information and encouragement to fight RA! The RA Warrior website and blog focus on fighting back against rheumatoid disease and staying positive, but to do that we need to have the facts! Back then, medical websites almost never acknowledged extra-articular aspects of the disease or that treatments didn’t work well for a large percent of patients. What I learned from patients—whom I always believed—wasn’t reflected in most medical articles. And what I learned from medical journals hadn’t been collected and put together so that people—especially patients and doctors—could see the whole picture.

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Achievements of a rheumatoid arthritis blog—and team

That first year was full of long nights building new things on RAW or fixing the website after it crashed; most of which was done together with my daughter KB! There were the first few hundred fans on Facebook whose love only increased my courage. The front page of AOL! John who helped us connect with the ACR. After that, friends stood with me to found the Rheumatoid Patient Foundation (RPF) to advance the cause: improving the lives of people with rheumatoid disease. Dana Symons—the talented woman who served as VP at RPF for countless hours alongside of me (and even when I could not).

Challenges for a rheumatoid arthritis blog

Accomplishments only come because you meet challenges. One of the toughest challenges for people with rheumatoid disease is rampant misinformation about the disease. We’ve seen clear improvement in response to our advocacy. Many websites that claimed RA /RD is merely a “type of arthritis” have gradually updated their content to include some acknowledgement of extra-articular symptoms. But we must press on. Just last week I was looking at articles about ulnar deviation (since mine is getting more severe) and I was dismayed to see how a well-respected medical website treated lupus so differently from RA / RD. This article is an example of how poorly RA is handled. From Causes to Treatments to inaccurate images—I could do much better on my humble RA blog (and I probably will).

We’ve also contributed to progress in the roles of patient advocates. Advocates are more likely to be actually hired to help with a project and less likely to receive Dear Blogger letters asking us to do someone else’s job for them for free or just have our content stolen outright—but it still happens.

Now, in its 12th year, the RA Warrior Website still kicking butt and taking names (WWII idiom).
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7 Things you may be surprised to know about this RA blog & website

1. I met almost all of my best friends thru RAW—how about you?
2. I did not support working to change the name of RA (read why!)
3. My book, RA Unmasked was written after I read thousands of medical journal articles.
4. To answer questions people ask me, I use the RAW search box daily!
5. While they were kids, all five of mine were only known on RAW by their nicknames e.g.: Roo, Tiger, Bear…
6. The incredible dropdown Tags List is still the fastest way to read what you need on RAW.
7. In 7th grade, my science teacher gave me a C on a paper because he didn’t believe I could’ve written it. Some silly people think the same thing about RAW.

Happy Rheumatoid Arthritis Blog Birthday! KB calls it RA Warrior Day.

In some ways, this blogaversary feels more significant than my real birthday.

WHAT ABOUT YOU? HOW HAVE RA BLOGS—OR THIS ONE—MADE A DIFFERENCE?

Recommended reading

• 2009 Rheumatoid Arthritis can make you patient
• 2010 History of Rheumatoid Arthritis Warrior Blog
• 2011 Elephant Jokes for a Happy Two Year Birthday RA Warrior
• 2012 Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future
• 2013 Happy Birthday RAW! The Day I Could No Longer Stay Silent
• 2019 Best RA Blog Birthday Gift

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Rheumatoid Arthritis Blog Birthday is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Reducing stress with RA is important

Living with rheumatoid disease is tough. Almost always, it “progresses,” which means gets worse. Meanwhile it tends to make almost everything harder to do—even things we love to do! Like the old saying goes, it’s “not for the faint of heart.”

Warriors like us don’t just live with this disease—we fight it. This fighting to get as much out of life as possible and the symptoms of the disease itself make stress and rheumatoid arthritis a common need to address. Recently, Healthgrades asked me to write about 10 ways to reduce stress with rheumatoid arthritis. I know these steps will be helpful to you or someone you love who lives with a chronic illness.

10 Ways to Reduce Stress with Rheumatoid Arthritis

Living with a painful chronic disease can lead to increased stress. In particular, stress and rheumatoid arthritis (RA) go hand in hand because RA is a progressive disease that can affect—and damage—almost any part of the body. RA can make performing daily tasks more difficult and create valid reasons to worry about your health.

It’s easy to see how living with RA increases stress: RA often means a lifetime of facing unexpected challenges, increased medical costs, and people who don’t understand—while at the same time managing difficult painful symptoms. Reducing stress with RA seems like a daunting task. And yet it’s especially necessary because stress increases pain and drains mental strength.

Key tips for reducing stress with RA

There’s no magic solution, but these straightforward steps can help reduce stress with RA.

1. Get real. Realistic expectations are your friend. Failing to meet expectations is stressful, especially when they’re your own. It’s hard to change what you expect of yourself, but adjusting expectations is not letting the disease win! It took me years to revise what I expected myself to do each day when I wake up in the morning, but I’m happier now.
Click here to read the entire article on Healthgrades.

More Warrior for you

• 3 Things That Control How Much #Rheum Can Steal from You
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• Five Keys to a Thankful Heart

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Reducing Stress with Rheumatoid Arthritis is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Trying to describe what RA is like—really

Shock and awe—things I felt as I learned first hand what RA is really like. Fourteen years later, I’ve taken thousands of pictures and written over 1000 articles, but I still can’t easily show someone what RA is like. When RA or our medicines are in the news (some possibly treat the pandemic virus), it’s obvious people don’t know.

Recently, I worked with Healthgrades on a series of articles to help provide supportive information about rheumatoid disease. I was eager to explore the topic “What It’s Really Like to Live with Rheumatoid Arthritis” because—as you know if you live with the disease—most people don’t understand what it’s like. Even people recently diagnosed with RA are often surprised to learn about how the disease affects almost any part of the body and how difficult it can be to manage.

What It’s Really Like to Live With Rheumatoid Arthritis

It’s mystifying that rheumatoid arthritis (RA) is a common disease—affecting about one in every one hundred people—and yet most people don’t know what it’s like to live with RA. Even though my own grandfather had the disease, I remember being stunned as I learned first hand what RA is like. There are good reasons why RA is so baffling. Most RA symptoms are not visibly obvious—at least early on. Not only can it vary a great deal in its severity, but its course can also change in the same person over time.

What’s it like to deal with rheumatoid arthritis?

RA is a progressive disease, usually worsening over time. But this progression can often be slowed by disease modifying medications. Living with RA is hard. It is…

1. Dealing with RA can be painful like no one can imagine. I’ve met men and women who say RA is more painful than a broken bone, kidney infection, or gunshot wound.

Click here to read the whole article on Healthgrades.

More Warrior on the Real RA / RD

• Rheumatoid Arthritis Signs and Symptoms
• 5 RA Facts Everyone Needs to Know
• What Does Rheumatoid Arthritis (RA) Look Like?

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What RA Is Like Really is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Parenting with RA is something many people are spending more time on with the school closures from COVID-19. As a mom of five, I know how different things have been since my disease became full blown 14 years ago. If you’ve been reading RA Warrior the last 11 years (that’s right—it’s almost year 12!), you know I learned some of these things the hard way—but usually with a smile.

Parenting with a chronic disease like rheumatoid arthritis can be even more challenging. When simple tasks become more difficult, parents with RA / RD may worry that their kids are missing out because of things they believe they “should” do for them. However, looking deeper at the question, we see that being a good or even a great parent with RA / RD is certainly within reach. What we need to focus on is what really matters and how to accomplish that. I hope you or a parent you know with a chronic illness will enjoy this encouraging article I recently published on Healthgrades.

Tips for Parenting with Rheumatoid Arthritis

Some of the difficulties common with the disease can make living with rheumatoid arthritis (RA) and parenting especially challenging. From parents of toddlers who enjoy playing on the floor with their little ones to parents of teens who join camping trips, it’s usually tougher with RA. Extra patience with yourself plus a little thinking outside the box can help ease the stress of parenting with a chronic illness.

Here are a few RA parenting tips to get you started.

1. Focus on what really matters. It’s not whether you can play soccer (if you can’t any more), but that you share their interest—the joy of the game.
2. Accept a new normal. What really matters to a child? Is it a perfect parent who provides perfect home, meals and activities? Or is it a parent with whom you share a warm and caring relationship? According to researchers, accepting a new normal is part of the process of managing a chronic condition.

Click here to read the entire article on Healthgrades.

More Warrior Tips

• 7 Tips on Rheumatoid Arthritis Complications
• 7 Rheumatoid Arthritis Bathroom Complications
• 21 Tips to Prepare for a Biologic Infusion

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Tips for Parenting with RA is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Realizing everyone else is #AloneTogether too

My eyes filled with tears as I noticed the current hashtags on Instagram a couple weeks ago. Hashtags are the butt of many jokes, but we can’t deny they’re a shortcut to a longer story. After all, I did start the hashtag #rheum back in the hashtag heyday, in order to create a community on Twitter. Suddenly, the hundreds of people talking to me could all see one another.

That is the reason hashtags are still around today: CONNECTION. Click a hashtag and you’re instantly connected to hundreds—or hundreds of thousands—of people who have that one thing in common at that moment. People who are unrelated, who may never meet, who may be a world away, but people who GET IT. They used the same hashtag at that same moment because they were connecting to everyone else who used it. And the world sees it.

Always #AloneTogether with RD?

Some recent hashtags: #quarantine, #covid, #stayhome, #alonetogether, #socialdistancing, #untiltomorrow, and many variations remind me of the ways many of us with rheumatoid disease have managed—and thrived—for many years. We are almost always #AloneTogether. We have this one thing—rheumatoid disease—that connects us, no matter what else is different about our lives. In many ways we’re all alone—but I thank God that we are alone TOGETHER.

Benefits of solidarity from hashtags! #AloneTogether

We benefit from being #AloneTogether in many ways. Being #AloneTogether helps you find others’ images, links, or posts, where you experience:

1. Excitement: Yay! Someone else agrees!
2. Relief: Whew, we’re not crazy!
3. Empathy: That’s hard. I’m sorry.
4. Delight: That’s so sweet!
5. Solutions: What a great idea—we could try that!
6. Laughter: LOLOLOL
7. Ideas: Oh, that’s cool! Let’s get one of those!
8. Shared struggles: At least we’re alone together instead of alone alone.

Related content you might like:

• What a Wonderful World, and Nobody Knows the Trouble I’ve Seen
• 10 More Rheumatoid Arthritis Facts I Learned the Hard Way

Alone in a crowd vs #AloneTogether

One of my #QuarantineActivities has been turning off the news and exposing my soul to new music while I scrub pantry shelves or do my mini-workout. Yesterday, I noticed these words from Beautiful People by Ed Sheeran: “Surrounded, but still alone.” Have you ever experienced that? I’ve stood in a crowd where no one had any idea I could barely stand due to damage in my knees. Many pains or sorrows are invisible.

While we’re weary of COVID-19 #StayHome, let’s give thanks that we are #AloneTogether. Whether our hands are dry from repeated washing, our hearts are beleaguered by hearing death counts, or our minds are afraid from the target on our back with a compromised immune system, we know we do it #AloneTogether. As people with rheumatoid disease, we are used to surviving #AloneTogether and we will again.

WHAT DO YOU LOOK FORWARD TO THE MOST? I WANT TO HUG MY MOM! #TogetherTogether

The many benefits of #AloneTogether! People with #chronic disease like #rheum know it beats alone alone
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Recommended reading

• 10 Facts: Coronavirus & Autoimmune Disease
• Hydroxychloroquine Uses: 10 Facts
• Rheumatoid Arthritis Fevers

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#AloneTogether Hashtag is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

This is my second article addressing the current COVID-19 crisis. You’ll also want to read and share 10 Facts: Coronavirus & Autoimmune Disease. Today we explore the medication crisis being created by the epidemic. I have followed most of these facts as they unfolded in news reports and on Twitter, but I’ve tried to document the facts here with footnotes because there are many false reports related to COVID-19.

Usual hydroxychloroquine uses

According to Mayo Clinic, hydroxychloroquine (HCQ) is used in rheumatoid arthritis (RA) in cases of mild disease as a first-line DMARD because of its favorable toxicity profile.¹ This means that the benefits outweigh the risks of hydroxychloroquine use. The dose is often 400 to 600mg per day.² However with Lupus, hydroxychloroquine is used in virtually every patient to help prevent flares and damage, and improve long-term survival.³ Again, years of experience substantiate its use (200 to 400mg per day).

Hydroxychloroquine is also used to prevent or treat malaria. Doses based upon body weight are used in areas where there is high risk of malaria, often temporarily during travel.

Exploring hydroxychloroquine uses with coronavirus

1. Evidence is poor for hydroxychloroquine use in coronavirus. The evidence of whether HCQ will be a successful treatment or prophylactic in COVID-19 is mixed and inadequate. This recent roundup from Newsweek cites several studies or case examples. A chemist writing for The Conversation agrees we don’t know enough. Studies not only need to be of sufficient size to be statistically significant, but also need to have highly controlled conditions, which usually include control groups. In the midst of a crisis, this is difficult, but stay tuned.
2. The new COVID-19 Global Rheumatology Alliance is up! The Alliance will be able to help guide doctors in treating people with rheumatic diseases. There is so much we need to know! Please help spread the word and tell your own doctor about this new resource. Doctors can enter COVID-19 cases directly and assist this worldwide research. There is also a patient survey. https://rheum-covid.org/
3. YOU can do more to improve evidence used to help others! A new brief survey—COMING SOON—created by Italian researcher Stefano Volinia, will help him study hydroxychloroquine uses in COVID-19. Please do the survey and send the link to everyone you know—WHETHER OR NOT THEY TAKE HCQ & WHETHER OR NOT THEY HAVE LUPUS OR RA! (NOTE: this is a different survey than previous ones I mentioned!) https://bit.ly/COVIDdrugs (Opens soon!)
4. Is hydroxychloroquine use approved for COVID-19? The U.S. FDA has authorized so-called “compassionate” use of hydroxychloroquine in patients who are hospitalized with COVID-19. This Emergency Use Authorization letter indicates that this is limited to that medicine obtained from the Strategic National Stockpile.

More news on hydroxychloroquine uses during COVID-19

5. Patients reported hydroxychloroquine shortages before it made news! I talk with #rheum patients every day and saw this coming. Shortages of HCQ began as soon as someone realized it might help COVID-19. I heard reports of people (non-rheum patients) asking their doctors for HCQ to “protect” them from the virus. Possibly, some of it was bought like the PPE that people attempted to re-sell at a high price. The ACR has responded with letters to alert government officials that many patients depend on HCQ for their health. Why were these letters needed? Early news reports only mentioned HCQ as a “malaria drug” and then Lupus was added; now some also mention RA. As I reported in my previous article, IL-6 inhibitors and JAK inhibitors are also being studied for coronavirus treatments. The ACR has written similar letters about these drugs (such as Xeljanz, Rinvoq, Actemra, Kevzara).
6. COVID-19 hydroxychloroquine use trials are being done. I found 51 trials for COVID-19 in the U.S. on clinicaltrials.gov—most of them drug trials, most of them still recruiting, most of them for hydroxychloroquine.
7. Are COVID-19 HCQ trials really necessary? Clinical trials conducted on one type of patient do not demonstrate safety or efficacy in another type of patient—especially when the immune system is involved. For this reason, we cannot assume that the safety or efficacy is the same with different hydroxychloroquine uses. While rheumatologists know how to use hydroxychloroquine in rheumatoid disease and lupus patients, what to expect, and what side effects to watch out for, this may be very different for people with coronavirus. Patients with psoriasis—another autoimmune disease with some similar treatments to RA—should not use hydroxychloroquine, according to the CDC, because it can result in symptom flares.
8. COVID-19 can affect many parts of the body—which means we need medications to treat it! “Manifestations” of a disease are the symptoms it can cause. Referring to research on COVID-19, a Mayo Clinic rheumatologist tweets: “A multi-organ system involving beast—Pulm, cardiac, GI, ENT, and now Derm manifestations- 1^st sign in 10% of patients, and present in 20%.” Do you know any other disease that can affect almost any part of the body? That’s right—RA! My own book, Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease, quotes hundreds of studies that show extra-articular manifestations are not simply “comorbidities.”
9. Hoarding resources—including drugs—harms others. I was stunned several times when I watched medical doctors tell news reporters that they have personally been taking HCQ as a prophylactic in case they are exposed to the virus. Simultaneously, I’ve watched patients on Facebook, Twitter, and Instagram despair over not being able to fill their usual hydroxychloroquine prescriptions. As I mentioned in my last article, drug manufacturers are increasing production to try to meet the need. Yet this does leave me with a sick feeling.
10. Don’t carelessly think that HCQ protects you! There is no clear proof that a Plaquenil prescription protects you. Please follow the guidelines meant to help keep you safe.

We can increase understanding about hydroxychloroquine use

YOU CAN HELP. Can we do more than wash our hands and stay home? YES! We can do two things right now to help improve the evidence!

1) Fill out the new survey (COMING SOON) and send the link to everyone you know, especially if someone in their family has had the virus. https://bit.ly/COVIDdrugs

2) Then tell your doctor about the rheumatology case registry so they can add any patients who’ve had the virus. http://rheum-covid.org/

HOW ARE YOU DOING? HAVE YOU HAD COVID-19? DO YOU TAKE HCQ OR ANOTHER DMARD?

What you need to know & how you can HELP research for hydroxychloroquine, #COVID, #lupus and RA #rheum.
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Recommended reading

• 10 Facts: Coronavirus & Autoimmune Disease
• Trigger Finger in Rheumatoid Arthritis
• 10 Ways I Know RA Is Not Your Fault

FOOTNOTES
¹Matteson, Eric L. Current Treatment Strategies for Rheumatoid Arthritis. Mayo Clinic Proceedings, Volume 75, Issue 1, 69 – 74. Available from: https://www.mayoclinicproceedings.org/article/S0025-6196(11)64257-2/fulltext
² Medscape. Dosing and uses: hydroxychloroquine sulfate (Rx). Available from: https://reference.medscape.com/drug/plaquenil-hydroxychloroquine-sulfate-343205
³Chowdhary, Vaidehi R. Broad Concepts in Management of Systemic Lupus Erythematosus. Mayo Clinic Proceedings, Volume 92, Issue 5, 744 – 761. Available from: https://www.mayoclinicproceedings.org/article/S0025-6196(17)30138-6/fulltext

ABBREVIATIONS:
ACR: American College of Rheumatology
CDC: Centers for Disease Control (U.S.)
COVID-19: coronavirus disease 2019
FDA: Food and Drug Administration (U.S.)
HCQ: hydroxychloroquine (brand: Plaquenil)
PPE: personal protective equipment (like masks and gloves)
RA: rheumatoid arthritis (rheumatoid disease)

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Hydroxychloroquine Uses: 10 Facts is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

What about coronavirus and autoimmune disease?

If you are actually sick with coronavirus and have an autoimmune disease, please call your doctor and follow her / his advice about whether to continue your usual medications and whether you need specific medical care. Part of the reason that there is no cure yet for diseases like rheumatoid arthritis / rheumatoid disease is that we are not all alike, so follow what your doctor advises for you. For the rest of us who are just trying to be well informed, let’s look at some interesting facts related to coronavirus and autoimmune disease.

Facts about coronavirus and autoimmune disease

1. The American College of Rheumatology has advised patients with rheumatic autoimmune diseases not to stop taking DMARDs out of fear of coronavirus.

2. Small studies are showing hydroxychloroquine / Plaquenil may help treat or protect people from serious illness due to COVID 19.^1,2 This is possibly causing shortages of this drug used by many with autoimmune disease, so manufacturers have increased production.^3,4,5

3. Italian investigator Stefano Volinia has a short survey for any patients taking hydroxychloroquine / Plaquenil for an autoimmune disease or have had COVID-19. You can help by doing this survey and sharing this link: Click here for the short survey. UPDATE! NEW SURVEY HERE: https://bit.ly/COVIDdrugs

4. According to the US National Institutes of Health, 24 million Americans have an autoimmune disease, plus at least 8 million carry antibodies showing that such a disease will likely develop in the future (like the ACPA antibodies that indicate RA).⁶ These should be included in those with “underlying conditions” referred to so often in warnings about those more vulnerable to coronavirus.

5. People with autoimmune diseases will not all respond the same way to COVID 19. However having a malfunctioning immune system and being immune suppressed by our medications could likely make us more vulnerable to contracting the virus or becoming seriously ill.

6. Certain autoimmune disease medications may help people fight coronavirus. Small trials in China and Italy have shown that Actemra / tocilizumab, which inhibits IL-6, may help treat people who have pneumonia from COVID 19. Genentech has begun a Phase 3 trial called COVACTA. While this is one of dozens of drugs being investigated for the coronavirus, many with autoimmune disease already take this or another medicine that results in inhibition of IL-6 signaling (Actemra, Kevzara, and JAK inhibitors like Rinvoq and Xeljanz).

You might also like to read

• 20 Essential Medication Safety Tips
• 7 Tips on Rheumatoid Arthritis Complications

7. The newly formed COVID-19 Global Rheumatology Alliance is creating a secure international case reporting registry that will eventually be able to help guide doctors in assessing and treating patients with rheumatologic disease and evaluating risk of infection in patients who are immune suppressed. Stay tuned for more information and to learn how you can help. Other COVID-19 registries are also being formed, such as this one for IBD. UPDATE: The registry and survey are both open! You can help—complete the survey and tell your doctor about this registry!

8. Respiratory viral infections like COVID 19 can increase the risk of developing rheumatoid arthritis in those who are genetically susceptible to autoimmune disease.⁷

9. People with autoimmune disease are more vulnerable in a health crisis for other reasons. They often suffer financial strain from high medical costs (my meds cost more than food). Lower incomes often result from disability. They have increased risk by greater contact with medical systems (infusions, medical appointments, lab visits, and so-called elective surgery—like joint replacements).

10. Despite progress, there is still a great need to improve awareness that rheumatoid disease is not a type of arthritis and that arthritis is just one symptom of RD. Over the past week, as hydroxychloroquine (Plaquenil) was in the news, I heard many doctors, scientists, politicians, and reporters referring to this disease as simply “arthritis.” Unfortunately the NIH page referred to above illustrates this disease by a drawing of deformed finger joints. (Something I have now in late stage disease, but most don’t!) Of course this disease is more than hands and does not usually start in the hands. For more examples of the preposterous way RD is described in the media, check out the RA Warrior Hall of Shame.

What to do: coronavirus and autoimmune disease

1. If you are worried or you live in a hotspot with a high COVID-19 infection rate, make a plan with your doctor ahead of time about what to do if you get sick.
2. If you have had COVID-19 or if you take Plaquenil / hydroxychloroquine, take the survey to help investigators learn more about how this medicine does or does not impact coronavirus. You can still share the link with other patients if you don’t take this medicine. https://bit.ly/COVIDdrugs
3. Follow the old-fashioned advice about hand washing and disinfecting surfaces as well as possible, eat healthy, and stay hydrated. And follow the modern strategy of lowering everyone’s infection risk through social distancing since research shows it is the most effective strategy.

Coronavirus and autoimmune disease: What can we do? Are we more vulnerable? #rheum #COVID_19 #Plaquenil
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WHAT DO YOU THINK ABOUT COVID-19 AND AUTOIMMUNE DISEASE? WHAT IS YOUR EXPERIENCE?

Recommended reading

• Why Rheumatoid Arthritis Frailty Matters
• Can Rheumatoid Arthritis Patients Get a Flu Shot? 15 Facts on Vaccinations & Autoimmune Disease
• Systemic Disease with Joint Symptoms

FOOTNOTES:

¹ Liu, J., Cao, R., Xu, M. et al. Hydroxychloroquine, a less toxic derivative of chloroquine, is effective in inhibiting SARS-CoV-2 infection in vitro. Cell Discov 6, 16 (2020). https://doi.org/10.1038/s41421-020-0156-0
² Wang, M., Cao, R., Zhang, L. et al. Remdesivir and chloroquine effectively inhibit the recently emerged novel coronavirus (2019-nCoV) in vitro. Cell Res 30, 269–271 (2020). https://doi.org/10.1038/s41422-020-0282-0
³ Dunn A. Business Insider. Elon Musk and Trump are touting a 1940s malaria pill as a potential coronavirus treatment. But supplies are already running short as prescriptions spike. (2020 Mar 20). https://www.businessinsider.com/chloroquine-hydroxychloroquine-shortage-coronavirus-treatment-lupus-arthritis-2020-3
⁴ Lockshin, M.D. Hydroxychloroquine (Plaquenil) and Chloroquine Shortage Caused by COVID-19 Coronavirus Claims. Hospital for Special Surgery (2020 Mar 21). https://www.hss.edu/conditions_hydroxychloroquine-plaquenil-chloroquine-shortage-covid-19-coronavirus.asp#shortage
⁵ Silverman, E. Teva and Mylan to jumpstart production of old malaria drug to fight the novel coronavirus. Stat News (2020,3 19). https://www.statnews.com/pharmalot/2020/03/19/teva-mylan-coronavirus-covid19-malaria/
⁶ Joo, Y.B., Lim, Y., Kim, K. et al. Respiratory viral infections and the risk of rheumatoid arthritis. Arthritis Res Ther 21, 199 (2019). https://doi.org/10.1186/s13075-019-1977-9
⁷ https://www.niehs.nih.gov/health/topics/conditions/autoimmune/index.cfm

Edits: updated survey info 4/14/20

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10 Facts: Coronavirus & Autoimmune Disease is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Taking on sleep problems in rheumatoid arthritis

I take pictures of posters at ACR meetings to help remember things I want to study more or write about for you! Two posters this past ACR were about sleep problems in rheumatoid arthritis. Sleep is one of those RA / RD topics people never stop asking me about.

In the past, I’ve written about strategies to take on sleep problems in rheumatoid arthritis / disease and overcome them as much as possible (some links below). But this time, we’re looking at the relationship between sleep problems and RA / RD. Does the disease contribute to sleep problems? Do sleep problems make disease symptoms worse?

Over the past 14 years, nothing has worked to suppress my own severe RD but steroids. SO, I definitely know I’m in for a great night’s sleep the days after joint injections or a Depo-Medrol shot. Or of course at the end of a particularly bad RD-day, extra prednisone could also help me rest. So there was never any doubt that my sleep quality and high levels of disease activity were related.

Let’s see what these new studies have to say:

More sleep problems in rheumatoid arthritis

The first poster, Self-Reported Sleep Disturbances in Rheumatoid Arthritis (RA), used survey data from FORWARD, the National Data Bank for Rheumatic Diseases (2623 people with rheumatoid disease / PRD). They determined that the RA population has more problems with sleep quality than the non-RA general population. The study shows that RA disease activity is consistently associated with sleep disturbances. They suggest that sleep disturbances might also contribute to increased disease activity through increased inflammation. They found both obstructive sleep apnea and restless leg syndrome to be more common in PRD than in the general population.

#Rheum disease causes sleep problems, which make RA/RD worse, which causes sleep problems which…
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The impact of sleep problems in rheumatoid arthritis

The second poster, Sleep Quality in Women with Rheumatoid Arthritis Is Associated with Disease Activity and Depressive Symptoms, concluded that sleep problems are prevalent in people with RA /RD. They surveyed 146 women with RA, asking them about problems including difficulty initiating sleep, maintaining sleep, and early morning awakening. They found that in addition to RA disease activity, depressed mood contributes to poor sleep. The study acknowledged that sleep problems impact quality of life and worsen other RA symptoms.

WHAT DO HAVE TO SAY ABOUT SLEEP PROBLEMS IN RA? DOES RA CAUSE SLEEP PROBLEMS? DO SLEEP PROBLEMS MAKE RA WORSE?

Recommended reading

• Rheumatoid Arthritis Sleep Issues
• Tackling Rheumatoid Arthritis Sleep Problems
• Sleep Quality Affects Disability in Rheumatoid Arthritis

FOOTNOTES

Katz P, Pedro S, Michaud K. Self-Reported Sleep Disturbances in Rheumatoid Arthritis (RA) [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/self-reported-sleep-disturbances-in-rheumatoid-arthritis-ra/. Accessed March 3, 2020.

Da Costa D, Szlachetka T, Lacaille D. Sleep Quality in Women with Rheumatoid Arthritis Is Associated with Disease Activity and Depressive Symptoms [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/sleep-quality-in-women-with-rheumatoid-arthritis-is-associated-with-disease-activity-and-depressive-symptoms/. Accessed March 3, 2020.

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Sleep Problems in Rheumatoid Arthritis is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Letters from newly diagnosed RA patients

As newly diagnosed RA patients find my website and write me letters, two things happen: 1) My heart is heavy for another life affected by this horrible disease. And, 2) I gather more information to add to the tens of thousands of experiences already shared with me.

Of course letters from rheumatoid disease veterans are also invaluable to learning about disease patterns and responses to treatments. Look for more on those topics coming soon in coverage of the recent ACR meeting.

Because the themes are SO common, I’m sharing this recent letter from a man newly diagnosed with RA / RD and my response to him (I changed his name):

Dear Michael, first off, thank you for writing! The many letters written by warriors like you have also been a tremendous benefit to me—helping me learn significantly more about the disease.

Newly diagnosed RA bewilderment

The letter on newly diagnosed RA continues:

I could write a blog post (and maybe a book!) in response to just this part of the letter! The most important things to tell you, Michael:

1) You can do everything right, and still become a victim of rheumatoid disease. A word I seldom use—victim—but I intend to emphasize the unfair, one-sided nature of this disease. It’s never the fault of the person who is stricken, who is often doing all the right things.

2) Onset patterns vary. Many medical professionals tend to doubt this particular pattern, but it’s very real. Every joint that you knew about—and some that you didn’t—refuses to work properly and responds with intense pain.

Treatment decisions and newly diagnosed RA

Here’s more of Michael’s letter. Read all the way to the end! These are things that thousands of people have written to me about.

Without too much technical talk here, someone has given Michael bad information! With RD, the immune system is malfunctioning—that’s correct. But methotrexate (or other DMARDs) doesn’t stop it from working. It partially suppresses its activity. I’m sure Michael’s friends meant well, but they left him with the wrong impression that the medicines are more dangerous than the disease.

Truth about treating newly diagnosed RA

I started writing this blog post responding to Michael’s letter just after returning from the ACR meeting (yet another surgery delayed me). After a decade of attending these meetings, we still see new evidence on the value of early treatment in newly diagnosed RA—and the sad consequences of treatment delays.

1) One poster by a group from Hong Kong found that long term functional loss in RA can actually be prevented if remission is achieved early and sustained.[1] This study is great news because the disease usually does slowly progress, even in those who do respond to treatments.

2) A 2014 review of Treat to Target studies confirmed the ”window of opportunity” in treating newly diagnosed RA / RD.[2] Early aggressive treatment improves all types of outcomes of the disease.

This shows early and aggressive treatment is still the best bet to fight the disability and early mortality that the disease can bring.

Are the medicines scarier than the disease to you? #rheum Answers to Newly Diagnosed RA/RD
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You might also like to read:

• The ostrich article: Can I Delay Treatment for Rheumatoid Arthritis? part 1
• Wait to treat RA? Can I Delay Treatment for Rheumatoid Arthritis? part 2

Newly diagnosed RA — BOTTOM LINE

Michael asks, “Honestly, is it worth trying or not?”

Honestly? I would be much more afraid of what the disease can do to me than the treatments for it. I say that because I’ve read thousands of medical studies about RD and its treatment. I say that after communicating with tens of thousands of people with RD. But I also say it because my disease wasn’t treated properly early on and I have suffered a lot of damage and disability as a result.

WHAT DO YOU THINK? HAVE YOU SEEN THE DIFFERENCE IN EARLY OR LATE TREATING RD? ARE THE MEDICINES SCARIER THAN THE DISEASE?

Recommended reading

• Surgery, Stories, and Feet amid Stubborn Rheumatoid Disease
• Accomplishing Thankfulness via Thorough Commitment
• The Pursuit of Happyness When Part of Your Life Is Called Rheumatoid Arthritis

FOOTNOTES

[1] Chow E, Cheng I, Tam L, Hong Kong C. Impact of Achieving Early-sustained Remission on Preventing Long-term Functional Loss in Patients with Early Rheumatoid Arthritis [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/impact-of-achieving-early-sustained-remission-on-preventing-long-term-functional-loss-in-patients-with-early-rheumatoid-arthritis/

[2] Monti S, Montecucco C, Bugatti S, et al. Rheumatoid arthritis treatment: the earlier the better to prevent joint damage. RMD Open 2015;1:e000057. Accessed from: https://rmdopen.bmj.com/content/1/Suppl_1/e000057.full doi:10.1136/rmdopen-2015-000057

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Newly Diagnosed RA and Afraid is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.

Strategies to strengthen relationships with rheumatoid arthritis

Over the past decade, readers have commented and emailed me many times about their relationships with rheumatoid arthritis. Both relationships with significant others and with other family members, as well as friendships can be strained by the effects of RA. We’ve often talked about how others have trouble understanding the invisible symptoms of rheumatoid disease. The divorce rate is higher with RA and the disease can test other relationships as well. A diagnosis of RA can add pressure in significant areas like schedules, employment and finances that can broadly affect relationships.

Healthgrades asked me to write about strategies for people with RA to strengthen relationships. I know readers will enjoy this brief article on ways to ensure that relationships for people living with RD are as strong as possible.

Strengthening Relationships with Rheumatoid Arthritis

Rheumatoid arthritis (RA) and relationships is not the first thing one learns about managing the illness. But living with a painful progressive disease like RA does place extra stress on your relationships. Over the years, I’ve seen how RA strains both friendships and marriages. The divorce rate is higher with RA. And yet I have seen several marriages become firmly cemented through the process of managing RA. What kinds of things do people do to strengthen their relationships while living with RA?

How to strengthen a relationship when RA plays a part:

1.      Bring your partner with you to a medical appointment, such as an infusion treatment. This is an opportunity to see and learn more about the disease and appreciate it’s not something in your head.

2.      Share a blog post link or a social media page where you find support. They’ll learn by hearing from others with similar experiences to yours.

Click here to read the entire article on Healthgrades.

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Ways to Strengthen Relationships with RA is a copyrighted post from: Rheumatoid Arthritis Warrior by Kelly Young, RA Patient Insights, LLC.