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My Arthritis Support Group Can’t Meet in Person Right Now, So Here’s How We’re Adjusting for Coronavirus Quarantine

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My Arthritis Support Group Can’t Meet in Person Right Now, So Here’s How We’re Adjusting for Coronavirus Quarantine

There are still going to be newly diagnosed people in desperate need of information about their condition. There are still going to be people who need regular contact with others who understand the complexities of their conditions and medications without judgment. Your group will still be needed; you might just need to change how it runs for a while.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Peer support groups are more important than ever during the coronavirus pandemic, but how do you run one when everyone is isolated at home?

I’m the co-leader of an arthritis support group for women in Australia. Though we have an active Facebook page, our core focus has always been our face-to-face, in-person meetings.

Thanks to the rampant and rapid spread of the coronavirus down here, in just one week we’ve gone from “how do we maintain hygiene and avoid close contact during our face-to-face meetings?” to “how are we going to stay connected while almost everything is in lockdown?”

We didn’t even get as far holding an in-person meeting.

Everything changed too quickly for that.

Revisiting the Purpose of Peer Support Groups (PSGs)

One option facing many PSG leaders around the world right now is to cease all activities and start up again when it’s physically possible to do so. This might be especially true for leaders of arthritis exercise groups or other groups that have only ever connected face-to-face.

I think it makes sense for leaders of support groups for people with chronic illness or disability to re-visit the values of your group. Why was it formed in the first place?

In most cases, it would have been to provide information and support to your target group and to help members feel less alone.

Yes, the venue where you normally meet might be closed now. Yes, most or all of your members (and leaders) might be in some form of self-isolation or lockdown due to COVID-19. But this isn’t the time to stop all forms of connection until the world returns to some version of normal. If it ever does.

There are still going to be newly diagnosed people in desperate need of information about their condition. There are still going to be people who need regular contact with others who understand the complexities of their conditions and medications without judgment.

Your group will still be needed; you might just need to change how it runs for a while.

And if you’re not currently in a support group for your condition, this could be a great time for you to set one up — virtually, that is.

How to Stay Connected with Your Group Members

There are ways you can maintain contact with your group from home even if you’ve never done so before.

In some ways, my group is lucky because we already have a large Facebook presence and e-newsletter set up. However, not all PSGs are in that situation. Many have older members who are not online or are less comfortable using technology. Others just haven’t needed to connect this way before.

Leaders of smaller groups can still phone members individually, but that is usually too difficult for larger groups unless there are volunteers to help make the calls. One way around this is to set up conference calls using apps such as GoToMeeting or Zoom. For a monthly fee, you can set up a phone number that your members can call at a specific time and link into a live group conversation.

Another option is to use one of the many free social apps on mobile devices. These allow your members to have ongoing discussions and to maintain individual contact with each other. Most are easy to set up and have tech support available.

You might like to find other support groups in your area, or with similar aims, and join forces to create an online community that benefits all. Your local libraries, community health centers, and neighborhood centers will probably be keen to share resources and to help facilitate connections as well.

Getting Started with Technology

Here are some ideas and resources to help your PSG transition into a fully connected model.

If you are not comfortable with using technology, it’s probably best to learn the basics yourself before setting up your group.

Websites such as GCFLearnFree.org, Home and Learn, and Udemy offer free or low-cost online courses on computer basics for beginners plus a range of other courses to suit everybody.

Have you got someone stuck at home with you who is “good with computers” (such as a bored teenager)? If so, rope them in — or bribe them — to teach you these computer/technology skills. Heck, if you are reading this, you can probably use some digital devices already and access the internet, so you are already part-way there.

My top tip for learning anything online is to use Google or YouTube and type in questions such as, “How do I _______ [insert: use Facebook, send a text message, use a food processor, or fix my car headlight?]”

Popular Social Apps That Suit Peer Support Groups

Facebook is still one of the world’s most popular social media platforms for managing groups online so I suggest that would be the best one to start with. You can create a closed Facebook group for your organization that allows the people you invite to interact at any time but excludes the general public.

The Facebook Help Center is full of step-by-step instructions for beginners and regular users. Many of the other websites mentioned above also offer tutorials on Facebook and other forms of social media.

Facebook Messenger is set up for private individual or group chats. You can link to this via the Facebook website or they are available as separate apps for your mobile phone.

Other excellent apps for group audio or video link-ups include WhatsApp, Zoom, and Skype. My group will likely start using apps like these to keep our regular face-to-face members connected in the coming weeks and months on top of our existing online work.

There is no set rule about which social media platform or app is better for different types of groups. I suggest you be open to different possibilities and use some trial and error.

You may need to send your members the links to these sites via text then talk them through the process over the phone.

What to Share with Your Peer Support Group

There are no rules here either, providing that the things you discuss meet your existing group guidelines and values.

Conversations could include how people are coping in general and whether they need any specific help to get them through the COVID-19 lockdown.

It doesn’t all have to be serious, though. You could encourage people to chat about their hobbies, send pet photos, play games, and more.

You could also share ways for people to keep physically active at home. Many physiotherapists, gym instructors, yoga teachers, tai chi instructors, and the like already have excellent videos that your group can share. Maybe one of you could consider leading the others through a stretching session via video linkup? This would not only be beneficial it could also be very entertaining.

Virtual dance party, anyone?

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A Thank-You Letter to the True Heroes of the Coronavirus Pandemic, from a Worried Rheumatoid Arthritis Patient

Many different ‘superheroes’ are tirelessly working to help those most vulnerable across the world.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Not all heroes wear capes. I love this saying now more than ever.

Right now, our world’s heroes are wearing scrubs and other uniforms. They don’t fight bad guys with super powers nor do they come with green skin like my son’s Hulk figurine. (Unless green scrubs count, that is.) Our current superheroes are spending their days and nights fighting the coronavirus pandemic wreaking havoc over our entire society — and, frankly, life as we know it.

These heroes are tirelessly trying to help those most vulnerable across the world.

In addition to doctors, nurses, emergency medical technicians, hospital administrators, and other health care professionals, today’s heroes might be wearing a uniform you may have never associated with heroism before. They are known as essential workers and they are courageously working to keep the world going while risking personal exposure to this growing COVID-19 outbreak.

While some of us have been laid off or asked to work from home for an eerily unknown amount of time, some don’t get the choice to stay in pajamas for days on end and snack all day on their quarantine food they hoarded in the pandemic rush. Some never had the opportunity to stock up on toilet paper because they were busy helping others. They are putting their lives at risk every day to keep the world in some semblance of order.

My coronavirus heroes include prestigious doctors and scientists, government officials and custodians, grocery store clerks and truck drivers filling those grocery stores with goods, and so many others who are keeping us moving forward. It’s not just the career of the person we recognize, but the heart and support they are giving back to their community during these unprecedented times is heroic.

Life Lessons from Chronic Illness

Living with rheumatoid arthritis for the last five years has taught me to really show gratitude for those who are treating my illness. They don’t have to do this job; they chose to. It is a job that not everyone is capable of doing.

My compromised immune system means I am not putting myself out there during this time. I wish I could, but my heroes are those who are keeping people like me safe and with the supplies and services we all need.

Chronic illness has shown me a lot of ugly in my life. I think we can all say that the coronavirus is leaving its dark and devastating mark on the world, but humanity has also shown some beautiful moments of love, kindness, compassion, and support over these past few months. This pandemic has brought many of us together because we can’t fight it unless we do this together (while social distancing, of course).

A Huge Thank-You

So please join me in saying a huge thank-you to all the essential workers who are putting themselves at risk so we can have access to medical care, food, transportation, and other vital services.

Thank you to all those working in the medical field right now. Thank you to the doctors and nurses who have come out of retirement to save lives while risking your own. Thank you to the doctors having to make unspeakable decisions under extreme pressure. May we have the support system to help you after this worldwide tragedy. Thank you to those continuously putting themselves at risk to save lives. And thank you to those who have lost their lives to save others.

Let us recognize the pharmacists making sure people get their lifesaving medicine. Thank you to the first responders on the front line. Thank you for helping the victims of COVID-19, helping to maintain order in our communities, and stopping situations that would allow the virus to keep spreading.

Thank you to those who are creating telehealth services so that we can all maintain access to routine health care in these crucial times. And thank you to those who are switching to these platforms to help flatten the curve. Change is never easy.

Thank you to those who are staying at home in self-isolation to do their part in flattening this curve. Your actions are saving lives, like mine and those of millions of others across the globe. Thank you to the journalists and public health officials who spend countless hours keeping us informed with truthful news and advice to keep us safe, even when it is difficult to give.

Thank you to the under-appreciated and underpaid jobs such as cleaners. You help shield our immune system from invisible predators and save lives by doing so, you shine above any celebrity or athlete. Thank you to the grocery workers keeping our shelves stocked and helping worried customers to make sure they have their essential supplies. Thank you to the people who implemented restrictions to stop hoarding and special shopping hours for those most at risk. Thank you for showing us, the #HighRiskCovid19, that our lives matter.

Millions across the world have lost their jobs, with an uncertain future as to what to do next. Thank you to those who have made the change from doing something to which they were accustomed to assuming new roles in order to provide for their family and keep the community going through these unprecedented times. Thank you to those who are able to sew face masks as supplies on the front lines rapidly run out.

Please join me and the millions of #HighRiskCovid19 patients around the world in thanking those who are keeping us going during these difficult times.

Many communities have a set time each evening to cheer for our heroes on the frontline. Grab those pots and pans, use your voice, use an air horn, and — as long as you are staying in social distancing guidelines — each night cheer for those keeping us going. Grab some chalk and thank them on the sidewalk for a kind message they can see on their way to or from work.

Take to social media to express your thank-yous with such hashtags as #Cheer4HealthWorkers because #TogetherWeCanDoIt. Make sure you continue to give gratitude and cheer them on. They are getting all of us through this.

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Are Coronavirus Symptoms Different If You Have an Autoimmune Condition or Chronic Illness?

When you live with a rheumatic disease, you likely have daily symptoms that can mimic those of COVID-19, including shortness of breath, chronic, dry cough, muscles aches, fatigue, gastrointestinal woes, temperature spikes.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Fever. Fatigue. Dry cough. Difficulty breathing. Diarrhea. Loss of sense of smell and taste. Vision changes. As the list of potential COVID-19 symptoms seem to grow, so does our anxiety about whether we could have it. Many concerns are specific to people with certain chronic conditions. Over the past few weeks, we at the Global Healthy Living Foundation have heard such concerns as:

  • I take methotrexate every day and tend not to get fevers — what if they won’t test me?
  • I have chronic fatigue syndrome — how can I tell if my fatigue is from my condition, extra stress, or the actual coronavirus?
  • I have ankylosing spondylitis and shortness of breath and chest pain — is it from costochondritis, ramped-up anxiety, or could it be COVID-19?

Sound familiar? When you live with a rheumatic disease, you likely have daily symptoms that can mimic those of COVID-19, including shortness of breath, chronic, dry cough, muscles aches, fatigue, gastrointestinal woes, temperature spikes.

“The body has a limited number of ways to demonstrate illness, so many of the signs and symptoms are the same as those of rheumatic diseases,” says Susan M. Goodman, MD, a rheumatologist at Hospital for Special Surgery in New York City.

COVID-19 Symptoms in People with Autoimmune Conditions

So, what exactly should you be looking for?

“Unfortunately, I can’t say if you have symptoms one, two, and three you likely have COVID-19 and if you have four, five, and six, you have a bad cold,” says Uzma Haque, MD, assistant professor of medicine at the John Hopkins Arthritis Center. “We just don’t have enough data yet to say that our patients don’t present with fever, or our patients present with one core symptom, or our patients present with one symptom over another,” says Dr. Haque.

The Global Healthy Living Foundation spoke with multiple rheumatologists to help you better understand and navigate your symptoms. Here’s what we know now — and what you need to know about COVD-19 symptoms when you’re living with an autoimmune condition.

Defining the Symptoms of COVID-19

The three main symptoms of coronavirus are:

  • Fever (100.4 or higher)
  • Cough (dry)
  • Shortness of breath

These symptoms can appear two to 14 days after exposure, according the U.S. Centers for Disease Control and Prevention (CDC).

Less common COVID-19 symptoms include:

  • Cold and flu symptoms
  • Gastrointestinal symptoms (nausea and diarrhea)
  • Anecdotal reports of loss of taste, visual changes, and alteration of hearing

What you need to know: “To the best of our knowledge, COVID-19 symptoms are the same in patients with autoimmune disease,” says Dr. Goodman. “Rheumatologists have started to report cases among their patients, so we will be learning more over time.” In fact, certain groups of specialists — including gastroenterologists and rheumatologists — have launched new research registries to track coronavirus cases among specific high-risk patient populations, such as people with inflammatory bowel disease and inflammatory or autoimmune arthritis.

While you may be high-risk for COVID-19 complications, the data so far is reassuring. “In these difficult times, I understand that everyone is anxious but there is some good news: We are not seeing clusters of patients with rheumatic disease [getting the coronavirus at increased rates compared to the general population] and those who are getting infections are recovering,” says Dr. Haque.

1. Fever

Fever — defined as 100.4 F (38C) or higher —  is a key symptom of COVID-19. The virus typically causes your fever to rise in the late afternoon and evening, which is why experts recommend taking your temperature twice a day.

What you need to know: Again, since this is all new — to patients, to medical professionals, and to researchers — we can’t know for sure how each medication and each rheumatic disease will impact fever if you do have COVID-19. “There’s just not enough data, and we can’t hinge on one symptom,” say Dr. Haque.

In inflammatory arthritis and other conditions, fever can also be a sign of a flare or part of your normal disease activity.

Fever can also be blocked by or caused by certain medications.

Prednisone and non-steroidal anti-inflammatory drugs, or NSAIDs (aspirin, ibuprofen, diclofenac sodium, celecoxic, meloxicam) both block fever. Someone who is infected with COVID-19 may not have a fever if they are taking these drugs regularly, notes Dr. Goodman.

However, according to Brett Smith, DO, a rheumatologist with Blount Memorial Physicians Group in Alcoa, Tennessee, most patients on disease-modifying antirheumatic drugs, or DMARDs (methotrexate, sulfasalazine, leflunomide) and biologics and targeted therapies (TNF inhibitors, JAK inhibitors, abatacept) will mount fevers if they develop COVID-19.

Certain drugs can even cause low-grade fevers.

“Rheumatoid arthritis can be treated by a drug that blocks IL-6 — a protein that acts as a messenger in the body and directs the body to develop fever as well as other signs of inflammation,” Dr. Goodman notes. “There are now trials to see if blocking IL-6 in severely ill patients with COVID 19 is beneficial,” she says, “[but] there is no evidence that people taking Il-6 blockers are protected from the virus.”

While there’s no simple way to determine what’s causing a fever, you can take comfort in the fact that if it’s caused by a flare there is also a pattern of symptoms — not just fever alone — that you’ll be able to recognize, says Dr. Goodman.

For now, rheumatologist want to know if you’re feeling feverish, especially if it’s something different than how you normally feel. If you have a fever of 100.4 F or greater, presume it’s infectious and call your rheumatologist or physician, says Dr. Smith.

“Do not go straight to an emergency room,” adds Dr. Goodman. “If you have a mild case [of coronavirus], there is no treatment except fluids, rest, and acetaminophen. And if you’re not infected, you’ll risk being exposed to the virus when you go in.”

2. Cough and Shortness of Breath

A dry cough — one that you feel in your chest — is another key COVID-19 symptom. You’ll feel like your bronchial tubes are inflamed and you won’t cough anything up, William Schaffner, MD, a professor of medicine in the division of infectious diseases at the Vanderbilt University School of Medicine in Nashville, Tennessee, told CNN.

Shortness of breath can occur with or without a cough and your symptoms won’t improve (and may worsen) after a week or so. If shortness of breath is severe and you experience any of the following signs, call 911:

  • Trouble breathing
  • Persistent pain or pressure in the chest
  • Sudden mental confusion or inability to arouse
  • Bluish lips or face (from a lack of oxygen)

What you need to know: Chest pain, shortness of breath, and even a dry cough can also be part of your chronic condition. Many people living with rheumatic diseases are also living with asthma or COPD. The same chronic, systemic inflammation that targets your joints can also affect your lungs and chest wall.

“Any systemic inflammatory disease can inflame the structures that comprise the chest wall, as muscles connect to tendons and bones to expand the chest wall in normal respiration, and all of those structures can become inflamed,” says Dr. Goodman. “For some systemic inflammatory diseases like lupus, the inflammation may be in the lining of the lungs, which is called pleurisy.”

Costochondritis, an inflammation in the costosternal joints — the segments of cartilage that connect the ribs to the breastbone — is common in inflammatory arthritis like rheumatoid arthritis, ankylosing spondylitis, or psoriatic arthritis. However, a patient with a flare or costochondritis will typically not report cough or shortness of breath, says Dr. Goodman.

“Patients should be alert to progressive shortness of breath, as this appears to be the harbinger of the moderate to severe COVID-19 cases,” says Dr. Smith. “The shortness of breath is very rapid in individuals with coronavirus, with progression over one to two days typically, which is highly atypical for [inflammatory arthritis].”

Any time you experience chest pain, especially if it’s accompanied by a dry cough and shortness of breath, you should call your rheumatologist or primary care physician.

Do not try to assess for yourself whether this symptom is from asthma, anxiety, heart attack, costochondritis, COVID-19, or something else.

3. Fatigue and Body Aches

While cold and flu symptoms don’t top the list of common COVID-19 symptoms, there have been reports of body aches and fatigue as well as headaches, digestive issues (nausea and diarrhea), runny nose, sore throat, and sneezing.

Most likely, however, experts say these symptoms alone — without fever and cough or shortness of breath — indicate cold, flu, seasonal allergies, or something else, not COVID-19.

What you need to know: “When you’re living with a chronic illness, there are innumerable reasons for chronic fatigue, so no one should assume they have COVID-19 due to only fatigue or body aches,” says Dr. Smith.

Instead, it’s best to just listen to your body. “Our patients are very savvy in recognizing their symptoms and being able to tease apart an arthritis flare or fibromyalgia flare [from other body aches],” says Dr. Haque. “I tell my patients if you have fatigue in a way that’s not common for you, or body aches that you’re not used to, or a little bit of a cough and feel down and awful, then reach out to your rheumatologist and primary care physician.”

There’s no such thing as being too vigilant about your health right now. “If you feel that anything is unusual — or different than your typical underlying chronic disease — bring it up to your doctor,” says Dr. Haque.

Monitoring Your Symptoms

If you feel anxious about your symptoms, consider tracking and monitoring them in a journal. Dr. Smith recommends documenting the following:

  • Temperature check (oral, axillary, forehead)
  • Time taken
  • Symptoms
  • Progressive symptoms (cough or shortness breath)

“If your symptoms haven’t budged in a few days, you may be reassured,” says Dr. Haque. Still, this approach isn’t for everyone and may make you feel more stressed out.  “I have patients who keep diaries and journals and others who don’t because it makes them more anxious,” she says. “Do what will make you feel comfortable and in control of your body and your disease.”

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.


Sources:

Interview with Brett Smith, DO, a rheumatologist with Blount Memorial Physicians Group in Alcoa, Tennessee

Interview with Susan M. Goodman, MD, rheumatologist at Hospital for Special Surgery in New York City

Interview with Uzma Haque, MD, assistant professor of medicine at the John Hopkins Arthritis Center

Symptoms of Coronavirus. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html.

The Myth of ‘Self-Soothing’ During the Coronavirus Pandemic: A Psychologist’s Perspective

This advice from clinical psychologist Laurie Ferguson, PhD, is a good reminder of the importance of staying virtually connected with others to fight loneliness and isolation.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

In our hyper-individualized culture we have created a story that everyone should be able to “self-soothe.” That phrase suggests that if we are evolved or mature enough, we can take care  of our mental and emotional needs for care and comfort all by ourselves.

For some psychologists, self-regulation and emotional self-reliance are a goal of childhood development. But further research on attachment and emotional growth suggests that it is actually co-regulation” that helps us maintain our emotional balance and our sense of safety in times of stress.

What does this mean about our present situation?

We are social distancing as a society right now. Those of us who have already had social contact limited by our physical limitations now have even less opportunity to engage with others. The isolation is frightening for many. Any subtle judgement that we ought to be able to “rely on ourselves” only heightens our sense of aloneness. There are fewer ways to “co-regulate” our emotional systems.

But it is the mutual sharing of support, care, and compassion that will help us balance and find a place of calm in the midst of this unfathomable storm.

There are ways to be in relationships with others right now that can help us manage the anxiety and isolation. Many of these suggestions you already know.  But even if we know what to do, we don’t always do it, or recognize the value.

I am underscoring the important fact that being with other people virtually — even though that is new and strange for many of us — makes a difference in our nervous systems and provides a sense of being okay.

Make it a point to be in contact with at least two people every day in some way that you can see or hear them. This means more than an email or text. Call someone so you can hear each other’s voices. Use a video platform like Zoom, Skype, Facetime, or Google hangout to look at someone else’s face. This activates your “mirror neurons” and helps to provide a connection to sustain us. If you don’t’ know how to use these software tools, there is no better time to learn.

One of my clients and a friend watched a movie together. In their separate homes they had the same movie on at the same time and connected through Google so they could comment to each other. Another client played a game on Zoom. There are lots of ways to “be together” that don’t involve just talking. Though of course talking is good too, as long as it helps you be positive.

Do something for someone else. This is a way to connect and help yourself feel better by focusing on someone in need. What’s up with your neighbors? What older person do you know who could use a call? How can you reach out? This connection helps us feel related to the wider world in positive ways.

Pets and nature count too. While we are wired for human contact in order to be at our best, when we hold a pet or touch a tree or smell a flower, that also helps.

If you can’t be in touch with someone personally, another “second best” is listening to the positive words of a favorite teacher or spiritual leader or someone you feel akin to. Letting their voice touch you — say, through a radio show, podcast, or YouTube video —  can be quite reassuring for your nervous system.

Let me know what creative ways you are finding to be in some kind of connected relationship, even as you maintain your physical social distance.

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Wearing Gloves During Errands Doesn’t Offer Much Protection Against Coronavirus (and Can Even Make Things Worse)

Wearing gloves when you’re out running essential errands doesn’t offer the protection you may think it does.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

In this time of social isolation, we all want to do the right thing to protect ourselves and our loved ones from COVID-19. We wash our hands many times a day, try not to touch our face, and frequently disinfect the high-trafficked areas of our homes. We only go out food shopping when absolutely necessary and try to keep at least six feet away from other people while doing so (which is sometimes impossible in the cleaning aisle or standing in line at the register).

So how to keep safe? Well, since hand sanitizer is pretty scarce these days, you might be wearing gloves — disposable surgical gloves if you have them, or dishwashing or cloth gloves if you don’t. And if you’re like most people, you probably go about your regular shopping routine, including checking the list on your phone, touching the produce, and pushing the cart, assuming that the pair of gloves is acting like a barrier between you and coronavirus germs.

How Wearing Gloves Can Be Problematic for Coronavirus Protection

The trouble is that pair of gloves isn’t necessarily keeping you safe from coronavirus — and may even be making things worse.

“The mantra to think of is, ‘a dirty glove is worse than a dirty hand,’” says Lucille Plantemoli, RN, MPH, vice president of wellness for HealthLink Advocates, a patient advocacy group.

Going out without gloves — on the, um, other hand — forces you to be mindful, to be more careful about not touching your face and making a beeline to the bathroom as soon as you get home to wash your hands, she advises.

“Perhaps because gloves create a false sense of security, people aren’t using them properly and so they may actually make the contamination worse for others as well as the person wearing them,” says registered nurse Audrey Christie, MSN, RN, based in Lake Dallas, Texas, who works with women with autoimmune and chronic health conditions.

“I like to use glitter as an analogy. Think of COVID-19 — or any other virus — as glitter on your shopping cart. You touch the shopping cart with your gloved hands and now the glitter is on your gloves. You go through the store, touching products, getting glitter on all of the products. You adjust your clothes and purse, check your phone, and maybe scratch your head as you wonder if you need frozen corn. Now the glitter is on your person and your items. You pay and put your groceries in the car, remove the gloves, and throw your purse in the seat next to you,” says Christie. “Your hands under the gloves are still fine, but now the glitter is still there and on all of the groceries, wallet, phone, and debit card.”

COVID-19 Protection Strategies That Are Better Than Gloves

Get help

Delivery and pickup services that drop things off at your doorstep or load the groceries directly into the trunk of your car are your best option, says Christie. If grocery delivery services become hard to utilize as more people use them, tap into your friends-and-family network for help getting essential items, at least occasionally.

Do not be afraid to ask others for help. Now is the time.

Go during special hours

Many grocery and big box stores are instituting “high-risk” shopping hours for those over age 60 and people with health high-risk conditions. Take advantage of them if you can’t get your groceries delivered. At the very least, there may be slightly fewer crowds at the store and the shelves may be less empty.

Ask your grocery store to change their policies

If your go-to grocery store has not yet instituted good social distancing practices (letting a few customers in the store at any one time, lining up people six feet apart) or isn’t offering hand sanitizer or cart-wiping stations at the entrances, bring it up with the manager or even your local board of health, advises Plantemoli, who also holds a certificate in infectious disease prevention. “You have to be an advocate for not only yourself but your fellow man,” she adds.

Carry hand sanitizer around always

It’s true that hand sanitizer is hard to find right now, but when you do score a bottle, put it in your purse or pocket and use it only when you’re outside your home.

“I put it in my pocket when I go to the grocery stores because I’m cleaning my hands several times,” says Plantemoli.

She also keeps disinfecting wipes in her car and swabs down the steering wheel and other high-touch areas in the car. You could use them to swab down your phone too if you had it out the whole time you were shopping.

Follow other best practices

Like other viruses, coronavirus enters the body through your mouth, nose, and eyes. Avoid touching your face while you run essential errands. If you don’t have hand sanitizer or wipes in your car, you can use a disinfecting spray to clean the doorknob, counters, and other areas you touched when you came in the house.

Spread the word

If you’ve got a friend or family member who’s doing the shopping for you, let them know that gloves won’t safeguard them, either.

The Right Way to Wear Gloves (If You Wear Them At All)

The only time you are supposed to wear gloves is when you’re handling fluids from a family member or partner with COVID-19, according to the U.S. Centers for Disease Control and Prevention.

You should wear disposable gloves. Once you’re done, you should toss them in the trash and wash your hands immediately after.

If you still want to wear gloves outside anyway, carry multiple disposable gloves and carefully pull them on and off, says Christie. “In nursing school, we used to do an exercise where we would paint the outside of the gloves, and in order to prove that you could put gloves on and off effectively—you had to do so without getting the paint on your skin. It takes practice.”

But even more importantly, don’t touch anything with your gloved hands — not your phone, face, purse, clothes, or debit card, adds Christie. “The bottom line is that gloves are ineffective unless they’re used very carefully.”

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Sources

Interview with Audrey Christie, MSN, RN, a registered nurse based in Lake Dallas, Texas

Interview with Lucille Plantemoli, RN, MPH, Vice President of Wellness for HealthLink Advocates

Centers for Disease Control and Prevention. Preventing the Spread of Coronavirus Disease 2019 In Homes and Residential Communities. https://www.cdc.gov/coronavirus/2019-ncov/hcp/guidance-prevent-spread.html

Methotrexate and Coronavirus: Does Methotrexate Make You High-Risk for COVID-19?

A side effect methotrexate is increased risk of infections. This is particularly important to understand right now in light of the current COVID-19 crisis.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

If you have rheumatoid arthritis (RA) or severe psoriasis, there’s a good chance you’re taking methotrexate (MTX). This disease-modifying anti-rheumatic drug (DMARD) has a long history of effectively treating inflammatory autoimmune conditions, yet it also has the potential to raise your risk of developing infections.

Does being on methotrexate right now put you at high risk for contracting COVID-19?

“We don’t know how much methotrexate may contribute to being more susceptible to coronavirus,” admits rheumatologist Joseph E. Huffstutter, MD, partner with Arthritis Associates in Hixson, Tennessee.

What we do know is that stopping this drug can have serious ramifications for the management of your condition: “If your disease flares you’ll have more trouble because you’ll need more medication to get a flare under control,” he explains.

Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida, agrees that most patients should continue taking methotrexate — unless they develop symptoms of COVID-19 (more on that shortly). 

How Methotrexate Works in the Body

Methotrexate was originally developed as a chemotherapy drug designed to kill fast-growing cancer cells, although it is important to note that arthritis and psoriasis patients take substantially lower doses than cancer patients. (Anywhere from 100 to 300 mg is a typical chemotherapy dose; patients with inflammatory conditions like RA are usually prescribed 10 to 25 mg.)

“Methotrexate keeps cells from dividing,” says Dr. Huffstutter. “When you have active rheumatoid arthritis, the fastest-growing cells are those in the immune system. That’s how it works to suppress the immune system in someone whose immune system is overactive. We’re trying to downregulate it and make it more normal.”

More specifically, methotrexate works by blocking some of the actions of the vitamin folic acid in the body. That’s an important part of how high doses of MTX work to thwart cancer, because folic acid is required to help cells divide and replicate.

Although the most commonly reported side effects of methotrexate are fatigue, nausea, stomach pain, and loss of appetite, methotrexate might also raise your risk of infections.

Fortunately, most arthritis patients who use this drug do not develop more infections, though if you’re also taking another DMARDs or an additional biologic agent, the risk of infections is greater.

You can read more here about methotrexate side effects.

To make sure that methotrexate hasn’t impacted your body’s production of red blood cells, platelets, and white blood cells (which help fight infections), anyone taking this drug should have a complete blood count every three months. (Here is more information about how doctors monitor for methotrexate side effects.)

While this blood test should give you and your doctor some indication of whether your immune system has been substantially impacted by methotrexate, it might be difficult to get routine blood work done during the COVID-19 crisis.

If you’re due for a check, call your doctor’s office and ask whether it is essential for you to get your blood test as scheduled or if you can put it off. Patients who have been stable on methotrexate for a long time may be advised to wait an extra month, says Dr. Huffstutter.

What If You Develop Coronavirus Symptoms While on Methotrexate?

Although most patients on methotrexate should continue taking it, if you develop COVID-19 symptoms, this can change the equation, says Dr. Domingues. Although there isn’t any solid data at this time, he believes that methotrexate might impair the ability to combat coronavirus.

The most symptom of COVID-19 is fever, which often goes hand-in-hand with a dry cough and shortness of breath. If you develop such symptoms, call your doctor for guidance. They may recommend temporarily stopping methotrexate to up your odds of fighting off the virus. Keep in mind that methotrexate is typically taken once a week, so it will take up to a week for it to get out of your system.

Be sure to consult your rheumatologist if you have any questions about whether you should stop methotrexate and when to start it up again if you are advised to take a break from it. You should also let your rheumatologist know if you develop COVID-19 symptoms or have had close contact with someone who has it.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.


Sources

Interview with Joseph E. Huffstutter, MD, partner with Arthritis Associates in Hixson, Tennessee

Interview with Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida

Major side effects of low-dose methotrexate. UpToDate. https://www.uptodate.com/contents/major-side-effects-of-low-dose-methotrexate.

Methotrexate. Medline Plus. U.S. National Library of Medicine. https://medlineplus.gov/druginfo/meds/a682019.html#why

Methotrexate (Rheumatrex, Trexall, Otrexup, Rasuvo). American College of Rheumatology. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Methotrexate-Rheumatrex-Trexall.

‘I Was Tested for COVID-19. I Almost Died While Waiting for the Results.’

Living with ankylosing spondylitis has trained me for paying attention to subtle changes in my symptoms and paying close attention to my body’s clues. Here’s what they told me when I was worried I had coronavirus.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

My name is Charis (pronounced like Ka-Reese). I live with ankylosing spondylitis (AS), an inflammatory disease that primarily affects my spine, but also other joints in different ways. AS can also damage organs like my eyes, heart, skin, and lungs. The medications I take for AS suppress my immune system, which makes me more susceptible to infection and less able to fight even minor illnesses. A common cold could rapidly turn into pneumonia. Throughout the year I often wear a face mask in enclosed spaces to protect myself from airborne germs.

As a child — before I was diagnosed with AS — I dealt with chronic strep throat, pink eye, and I nearly died in fifth grade after falling ill from three different forms of pneumonia.

All these factors make me #HighRiskCovid19.

***

I’m more likely to experience severe complications from the disease. From the earliest reports of COVID-19 spreading internationally, I have not been afraid of being mildly inconvenienced for a couple weeks if I get sick. But I have been afraid that I will die in the worst way I can imagine: suffocating to death with hardened mucus filling up my lungs, my organs exploding in a last hurrah as I lie alone in a hospital bed without loved ones by my side.

I already know what it feels like to not be able to breathe. My disease often causes inflammation in my torso, causing pain in my ribs that feels as though I’ve just finished running back-to-back wind sprints. Even years before I was officially diagnosed with AS, my body permanently developed its own survival mechanism in response to this inflammation:

Don’t breathe.

Well, don’t breathe a lot.

My body taught me to breathe shallow breaths, even though technically I could still fill my lungs with my oxygen saturation perpetually hovering around 98 percent. My body had enough oxygen, but I didn’t know how to use it. I haven’t known the feeling of being able to breathe deeply since middle school, perhaps since those 5th grade bouts of pneumonia. My body trained itself to not breathe in excess, even though it could breathe, because it hurt too much.

On the charts I seemed storybook healthy. How I felt was a different matter altogether.

Even as an athlete, a saxophone player, and a thespian (all activities that require a lot of breathing); I subconsciously learned to survive by not breathing deeply.

I got accustomed to being asked why I was upset because I sighed a lot, which was my body’s way of breathing. It was only after I was diagnosed with AS at age 26 that I realized my sighs were how I subconsciously adapted to painful inflammation.

Now, when new friends ask if I’m OK after I sigh, I say, “Oh, that’s normal. It’s just how I breathe.”

***

After being diagnosed with AS, my body began mimicking other diseases and conditions. AS is a full-body disease and I’m the kind of person who jumps in the deep end when I start something. I got AS, then I jumped in the deep end with it.

In the past few years, I have had my heart, lungs, intestines, arterial oxygen blood flow, and more things tested because of all the ways inflammation from AS impacts me physiologically. All those tests have shown a perfectly operational heart, lungs, intestines, oxygen flow, and more. But I still feel the rampant inflammation. It’s very real.

I haven’t known what it’s like to be without pain or fatigue since I was at least 13 years old. I live a life of pain and fatigue. The pain I tolerate each day would send almost any healthy person to the ER, begging for relief. The fatigue I actively push through daily feels like how I felt after running my first — and only — marathon years ago.

Even though my organs seem perfectly fine, I’m highly sensitive to the systemic inflammation AS causes. I feel everything. In a sense, I feel I am perpetually just outside detectable ranges for massive problems. I am perpetually “just healthy enough” — living within the confines of a very sick body, ravaged by a disease that has no cure.

***

I share all of this so you understand what it is like for me to live in fear of getting sick from the coronavirus. So many of my usual daily symptoms mimic those of COVID-19.

  • I always struggle to breathe.
  • I have a chronic, dry cough.
  • I am never without muscle and joint pain.
  • My gastrointestinal system is unreliable, varying between food poisoning-esque symptoms, diarrhea, lack of appetite, and more.
  • The as-needed steroids I take can cause flushing and temperature spikes, and I occasionally have “sweat-naps” where I sweat through layers of clothing and sheets.

Sound familiar? These are all possible COVID-19 symptoms.

In early March — across a span of about 10 days as I experienced new, worsening symptoms all at once (not one at a time, like usual) — my anxiety grew. It was as if all my occasional, non-pandemic-time symptoms were happening all at once and increasing in intensity to almost exactly match the new pandemic disease. I actively fought off fear, not wanting to go inside any medical environment even to be tested for the flu.

I didn’t want to be exposed.

I also didn’t want to somehow already have COVID-19 despite all the precautions I began taking a week before public officials began telling people to shelter at home in my state of California. Even while many people in my life were still claiming the flu is worse than coronavirus, I knew deep down that what we were dealing with was much, much different than the flu.

After I began sheltering at home, the only person I had physical contact with was my partner, whom I had not seen for over a month because of their job.

Despite all my precautions, I still developed the scary symptoms. And they got bad enough that I could no longer deny my rapidly deteriorating health.

***

Here’s how I almost died waiting for the coronavirus results.

For weeks I had been on the front lines writing essays for CreakyJoints about being disabled and immunosuppressed and feeling disposable. I helped co-found a hashtag (#HighRiskCovid19) that quickly went viral on Twitter and spent hours talking with fellow chronically ill colleagues about how best to advocate on a large scale for our community to be seen as valid. As I was being interviewed by multiple media outlets, I shared that I was planning for my own death, were I to somehow catch COVID-19.

On March 19th, I sent the following message to several colleagues and friends:

All, I want to update you on me. I woke up yesterday feeling a bit congested. For several days now I’ve felt a faster heartbeat, more fatigue, and even two barely noticeable second-long waves of nausea, some feverish feelings but I haven’t had a temperature. And then there’s my normal chronic dry cough and usual trouble breathing (center of chest, ribs are sore) and dizziness/lightheaded. All those can be easily attributed to normal life or medication. But this morning I woke up with more congestion and immediately began coughing when I got up. No temperature. What I’m blowing out of my nose is even a little bloody (sorry, TMI. Also, could be dehydration).

After multiple phone calls to various doctors and a conversation with a triage nurse who didn’t seem too concerned about me because I didn’t have a fever, I made the decision to go to my usual urgent care walk-in clinic to (hopefully) be tested for COVID-19. I usually don’t run a temperature because of the medications I take that suppress my immune system. For me, running a “real” temperature would be extremely dangerous.

The clinic was a ghost town. Every other chair was taped with a big “X” over the arms to enforce some measure of social distancing. But no one was there except me, standing shakily, afraid to sit. It would be over 90 minutes before I left again, exhausted and sad that in my extreme fatigue I had let myself lie down on the exam table, exposing myself to the likelihood of even more germs. I was more afraid of the medical environment than the possibility I might have COVID-19.

I tested negative for Flu A, B, and AB before the doctor suggested a chest X-ray and a coronavirus test. Thirty minutes later a swab was stuck down my nose to the farthest reaches of my throat, in both nostrils. It burned like a needle gliding across bone. The doctor said, “Your symptoms are hallmark for COVID,” then, “We’re lucky we have tests in this facility.”

I nodded grimly, aware of my privilege to get tested when so many can’t be.

“Three days?” I asked, repeating what the phone triage nurse had said hours before about test results.

“Actually, more like five,” he said. I was horrified.

The whole office was worried about me. It felt nice, in a way, to be taken seriously for once.

***

By the next day, I believed I was in the beginning stages of dying. A group of my closest friends joined a video call to plan how to get my will and advanced directive signed. My breathing was so shallow I couldn’t say more than a few words at a time without needing a break. The conversation largely revolved around deciding when — not if — I should go to the emergency room.

My friends wanted me to go that same day, but I knew I wouldn’t be admitted I wasn’t in true acute respiratory distress (ARDS) yet. I didn’t want to unnecessarily expose myself to COVID-19 if I didn’t have it and I didn’t want to waste an exhausting trip to the ER when there was a possibility I would be turned away. I wanted others who were in worse shape than me to have a bed.

These are, unfortunately, the same decisions I make in non-pandemic situations many times a year. Having lived with a severe chronic disease for seven years means I have studied my disease, researched it (yes, led research), led support groups, attended medical conferences, spoken with media, lobbied Congress, educated my own doctors, and advocated for my own care constantly. I consider myself a medical expert because of my seven years of lived-experience education.

I’ve had plenty of bad experiences in the ER because I always have telltale physiological symptoms, but testing never shows anything wrong. The last time I went to the ER with breathing trouble — pre-coronavirus pandemic — I was met with the harshness of tired doctors who said nothing was wrong with me after testing, even though there I was in front of them barely breathing.

The lingering trauma over these unproductive ER trips makes the ER the last place I want to go, ever.

Medical trauma doesn’t fade when you live the reality daily. We with chronic diseases know we have to be in the worst shape of our lives to consider venturing into an environment where so many of us are met with stern denials of care and compassion as we calmly share our medical history. We don’t scream or moan because we’ve had years of practice shielding our pain from public exposure. ER doctors never know what to do with us because we never look like we’re dying, and even in level 8 and 9 pain we don’t cry and scream.

I am perpetually lurching forward in unknown territory. All the decisions I make about my life are complicated by the fact that my disease is unreliable, and because there is so little known about it by science or standard medical practitioners.

***

Later that afternoon my partner and their friend signed my will and my advanced directive in my driveway. I could barely breathe. I was barely aware of my surroundings. Everything was a blur. I had begun to feel scared, feeling the full reality of the last two days and the next couple weeks.

I didn’t want to suffocate to death by COVID-19. That wasn’t how I wanted to die.

At the same time, I told my friends I was ready to be a martyr. It fit my work on earth, my desire to be a voice for the silenced and change the world by telling my story.

My partner cleaned my gross kitchen sink and organized the counters. A sibling came to stay with me and take care of me because others didn’t want me to be alone. One friend voiced his fear that I would stop breathing overnight.

We were all expecting me to get worse. To die.

***

I was breathing a little better the next day. I “partied” that night with my sibling and partner, who both set up a bed for me to lie on while they built and nursed a fire in my back yard. I drank a small amount of whiskey. I knew I was pushing it, but I wanted this time with loved ones.

I was worse again the next day, the same day the urgent care doctor called with my results. It took four days, not five. I was still so sick.

I was negative for COVID-19.

Negative. I did not have coronavirus.

But I still couldn’t breathe. What was wrong with me?

I wound up going to the ER because urgent care wouldn’t let me come back. I knew I was risking my life to go to the hospital and be exposed to a disease I was surprised to learn I didn’t have. I knew I was risking the life of my partner and my friend who took me.

I hoped to get a chest X-ray. If the negative COVID-19 test didn’t quell my growing anxiety, then at least knowing I didn’t have pneumonia would help, I thought. I was hoping that reduced anxiety would help my breathing. I didn’t have pneumonia either, the imaging showed.

***

After returning from the ER, I joked with my sibling, Laura, who was staying with me, that I got “placebo-COVID” for practice. Now, my will is in place. My advanced directive is filed. My friends know the drill if I have to ring the alarm bell again.

When my friends text me to ask how I’m doing, I say, “Well, I’m not dying like I was three days ago.”

I still get dizzy when I stand. I still have diarrhea. I still feel temperature fluctuations. I still can’t breathe, and my heart rate still increases randomly.

I still can’t breathe.

I am left with knowing that, yet again, my body has developed a full-fledged attack against itself and I have no answers for it.

I think about how my body reacted to what I’m now thinking was a sudden flare in symptoms — albeit one like I’ve never experienced before — and it terrifies me to consider how my body would react if I were to actually get COVID-19.

I spent two days thinking I was in the process of dying. Friends and family were worried. We were planning my death. It felt real. It was real.

What would COVID-19 feel like for me? If I multiplied my “flare” symptoms by two? By five? By ten?

I am still terrified. But at least my loved ones and I know I am ready when — not if — the time comes.

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Denying Prescriptions for Hydroxychloroquine Can Be Life-Threatening for Lupus Patients: Multiple Rheumatologists Weigh In

‘Restricting lupus, rheumatoid arthritis, and other rheumatology patients from accessing hydroxychloroquine is wrong.’

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

After a BuzzFeed News story went viral about a lupus patient who could not get her prescription for hydroxychloroquine filled by her doctor, who is part of the Kaiser Permanente health care network, the Global Healthy Living Foundation took action to see what was happening.

Hydroxychloroquine (Plaquenil) is a commonly prescribed — and critically important — medication for rheumatologic conditions such as lupus and rheumatoid arthritis (RA). It is currently being studied as a treatment for hospitalized COVID-19 patients, which is leading to a nationwide shortage.

We emailed Kaiser for comment about their policy, and this is what they wrote back:

The safety and well-being of our patients have always been Kaiser Permanente’s top priorities. When it comes to the availability of plaquenil, there’s currently a severe nationwide shortage of this drug, which historically has been used to treat lupus, rheumatoid arthritis and malaria patients. 

Today, this drug has been identified as possibly having an impact in the treatment of severely sick COVID-19 patients who are hospitalized. As we face the real possibility of running out of the drug for everybody if we don’t take steps to mitigate the shortage, Kaiser Permanente, like other health care organizations across the country, has had to take steps to control the outflow of the medication to ensure access to severely sick patients, including both COVID-19 and those with acute lupus.  

Extensive experience and research show that hydroxychloroquine builds up in the body and continues to work for an average of 40 days even after the last dose is taken. By then, we expect the drug manufacturers to have ramped up production to meet the increased demand. Until then, we are no longer refilling routine prescriptions to ensure we have adequate supply to care for our sickest patients.

Without taking this necessary action, we could collectively run out of this medication. As such, we are focusing on taking the necessary steps to ensure the safety for our patients. Kaiser Permanente physicians and pharmacists are also working together on an evidence-based approach to identify alternative therapies for patients with lupus.

We followed up by asking for them to share the “extensive research” and got this response:

This is all we are releasing at this time, Jessica [name of our media relations staffer].

What Rheumatologists Say About This Hydroxychloroquine Policy

“Restricting lupus, rheumatoid arthritis, and other rheumatology patients from accessing hydroxychloroquine is wrong,” says Michael Putman, MD, a rheumatologist at Northwestern University School of Medicine and founder and host of the EBRheum podcast. “The data on taking this medication for conditions like lupus is very strong, while the data for using it to treat COVID-19 is of low quality. This is a panicked decision, not a rational one.”

“I do not feel that it is ethical to deprive lupus and RA patients of a known organ-saving medication to use an unproven remedy in COVID-19 patients,” says rheumatologist Robin K. Dore, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA.

“Lupus patients should not have the drug withdrawn, especially when there is no evidence yet that these drugs work in this virus,” says Lee Simon, MD, a rheumatologist and research scientist who has served as Division Director of Analgesic, Anti-inflammatory, and Ophthalmologic Drug Products at the U.S. Food and Drug Administration (FDA). “The studies [on hydroxychloroquine and COVID-19] are now just being done, we will know in about one to two months.”

All of the rheumatologists we spoke to — including some of the top lupus researchers and clinicians in the country — had many concerns and issues with policies like this one from Kaiser. For one thing, we could not find any extensive research that shows patients will do fine because the drug has a long half-life.

Concerns About Hydroxychloroquine Half-Life

“Hydroxychloroquine indeed has a long half-life, but saying everyone will do well for 40 days is misleading,” says George Stojan, MD, assistant professor of medicine in the division of rheumatology at the Johns Hopkins University Medical School and the co-director of the Hopkins Lupus Center.

He explains: “Half-life is the time required for the blood levels of hydroxychloroquine to reduce to half of its initial value. 1,000 ng/ml is the target blood hydroxychloroquine concentration (500 to 2,000ng/ml is considered therapeutic). [The Kaiser statement] assumes that all patients have blood levels between 1,000 and 2,000 ng/ml or more at the time when hydroxychloroquine is stopped so that their blood levels remains in a therapeutic range for the entire 40 days.”

He adds: “In a study done in our center, only 2 percent of patients had levels of 2,000 ng/ml or more; 44 percent of patients had levels below 500 ng/ml. I think a significant number of patients will definitely be at risk of potential flares without hydroxychloroquine for such prolonged periods of time.”

Lupus patients deprived of hydroxychloroquine could go down to a dosage that is no longer considered therapeutic within a week or two, depending on the individual, says Alfred H.J. Kim, MD, PhD, assistant professor of medicine at Washington University School of Medicine and director of the Washington University Lupus Clinic in St. Louis, Missouri.

“There is no evidence that hydroxychloroquine will continue to have its favorable effects on, for instance, rheumatoid arthritis or lupus, for this extended 40- day period of time after discontinuation,” says Andrew Concoff, MD, executive vice president, chief value medical officer for United Rheumatology, a rheumatology care management organization that serves more than 600 independent rheumatologists across the U.S. “Furthermore, the converse of this argument is also true: After the medication is stopped, it will take an extended period of time after the drug is restarted before it again has favorable effects.  All of this is of particular concern in lupus, where the use of hydroxychloroquine has been demonstrated to improve survival.”

Potentially Life-Threatening Consequences

“Lupus patients need to stay on hydroxychloroquine to prevent complications,” says Dr. Putman. “There is very, very good evidence that staying on this medication prevents flares and stopping this medication can cause flares.”

Let’s not let the word “flare” be misleading, either. Flares of rheumatic diseases like lupus can require hospitalization, lead to damage of major organs such as the kidneys, heart, lungs, and brain, and even be life-threatening for some people.

“For some very high-risk patients, stopping hydroxychloroquine can lead to potentially fatal complications,” says rheumatologist Leah Alon, MD, who practices in New York City. “Lupus patients with anti-phospholipid syndrome — a condition in which there are antibodies that cause blood clots to form in the legs, lungs, and brain, causing fatal strokes, pulmonary embolism, and other complications — need to take hydroxychloroquine every day. It is vital to prevent death.”

She continues, “for some rheumatology patients, hydroxychloroquine is the only medication they can take to treat their condition. It is one of the few rheumatic drugs that is not associated with an increased risk of cancer, so it is often preferred for patients who also have cancer. It is safe during pregnancy and thus is often the safest choice for lupus or RA patients who are pregnant.”

Lots of Questions About Hydroxychloroquine Drug Rationing

All of the rheumatologists we spoke to agreed that patients currently on hydroxychloroquine for rheumatologic conditions should ideally continue taking their medication without any interruption or change in dosage.

“It is very important for patients who take it for rheumatic conditions to maintain a steady-state dosage. The dose has to be correct or else the medication is not effective,” says Dr. Alon.

But if shortages are literally evaporating the medication from patients’ lives, clinicians who treat lupus and RA patients are discussing the best ways to help patients stay safe and avoid complications. In some cases — though everyone agreed this is less than ideal and needs to happen on a case-by-case basis with a patient and their provider — it may be best to ration your current prescription rather than running out and not taking it at all.

“We don’t want patients to have to reduce their dosage,” says Dr. Putman. “But it may be the case that taking half your Plaquenil now is better than taking none in a week or two from now.”

“Rationing is not a good thing. It is not a solution. But it may be something you need to discuss with your doctor,” he says.

If there is no hydroxychloroquine available in the U.S., “we don’t have a choice,” says Michelle Petri, MD, Director, Hopkins Lupus Center. “Some doctors are telling patients to reduce their dose to stretch it out.”

What to Do If You Take Hydroxychloroquine for a Rheumatologic Condition

“Patients should continue their hydroxychloroquine for as long as they have it at the prescribed dose and inform their rheumatologist if they cannot get it refilled,” says rheumatologist Gary Feldman, MD, medical director of Pacific Arthritis Care Center in Los Angeles. “Then individual patients can figure out with their doctors how to handle the situation with substitute medications or other strategies. Hopefully, we can get the production of hydroxychloroquine up in the next several weeks and get a system to specifically supply our patients with the drug they need and we know works for them.”

Experiencing Issues Accessing Hydroxychloroquine? Tell Us

If you are a patient living with a chronic illness and are having trouble getting access to hydroxychloroquine (Plaquenil), we want to hear from you. Click here to share your story with us.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.


Sources

Alarcón GS, et al. Effect of Hydroxychloroquine on the Survival of Patients With Systemic Lupus Erythematosus: Data From LUMINA, a Multiethnic US Cohort (LUMINA L). Annals of the Rheumatic Diseases. September 2007. doi: https://doi.org/10.1136/ard.2006.068676.

Durcan L, et al. Hydroxychloroquine Blood Levels in Systemic Lupus Erythematosus: Clarifying Dosing Controversies and Improving Adherence. The Journal of Rheumatology. November 2015. doi: https://doi.org/10.3899/jrheum.150379.

Interview with Alfred H.J. Kim, MD, PhD, assistant professor of medicine at Washington University School of Medicine and director of the Washington University Lupus Clinic

Interview with Andrew Concoff, MD, executive vice president, chief value medical officer for United Rheumatology

Interview with Gary Feldman, MD, medical director of Pacific Arthritis Care Center in Los Angeles

Interview with George Stojan, MD, assistant professor of medicine in the division of rheumatology at the Johns Hopkins University Medical School and the co-director of the Hopkins Lupus Center

Interview with Leah Alon, MD, a rheumatologist in New York City

Interview with Lee Simon, MD, a rheumatologist and research scientist who has served as Division Director of Analgesic, Anti-inflammatory, and Ophthalmologic Drug Products at the U.S. Food and Drug Administration (FDA)

Interview with Michael Putman, MD, rheumatologist at Northwestern University School of Medicine

Interview with Michelle Petri, MD, Director, Hopkins Lupus Center

Interview with Robin K. Dore, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA

Prednisone and Coronavirus: Do Corticosteroids Make You Immunosuppressed and Higher Risk for COVID-19?

A common side effect of corticosteroids like prednisone is increased risk of infections. This is particularly important to understand right now in light of the current COVID-19 crisis.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Prednisone — a corticosteroid that’s used by many people with inflammatory arthritis, asthma, chronic pain, and a variety of other conditions — has some major pluses and minuses. On the pro side, this drug tends to quickly and effectively relieve symptoms of pain and inflammation.

Some patients, in fact, feel so good when they’re taking it that they start using a higher dose than what was prescribed by their doctor (though that’s not advisable), says rheumatologist Joseph E. Huffstutter, MD, partner with Arthritis Associates in Hixson, Tennessee.

Unfortunately, taking more than your recommended dose can have some serious downsides; even taking a doctor-approved dose for an extended period can be problematic. Corticosteroids like prednisone have a laundry list of potential side effects, including high blood pressure; high blood sugar; glaucoma; issues with sleep, mood, and memory; weight gain; fluid retention and swelling; osteoporosis; and more.

Side effects tend to increase with higher doses and longer duration of use.

Another common side effect of corticosteroids like prednisone is increased risk of infections, including bacterial, fungal, and viral infections. This is particularly important to understand right now in light of the current COVID-19 crisis.

Is Prednisone Immunosuppressing?

“Prednisone is a broad immunosuppressant,” Dr. Huffstutter explains. Unlike targeted medications — such as TNF inhibitors and interleukin inhibitors — which home in on specific types of inflammatory molecules that are over-expressed in people with chronic autoimmune conditions, prednisone works to lower inflammation throughout the entire body.

It does that by imitating the corticosteroids that are naturally produced by the adrenal glands. When you put a synthetic corticosteroid like prednisone into your body, your adrenal glands stop producing their own supply. The resulting lower level of inflammation throughout your body is what helps relieve symptoms in joints or other trouble spots. But it may also end up suppressing your immune system function.

“There is good data that prednisone makes you more susceptible to a variety of infections, maybe even more so than biologics and methotrexate,” says Dr. Huffstutter.

Of course, as with other medications, the dose of corticosteroids matters a lot. At high enough doses, such as those sometimes used in chemotherapy, prednisone will actually kill off lymphocytes, a type of white blood cell. “Prednisone is very dose-dependent, and 5 mg is very different than 40 mg,” says Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida. “You’re going to have far more impairment if you’re taking higher doses.”

The Way You Take Prednisone Affects Immunosuppression

The method of delivery — or the way you take — prednisone matters too. People who use corticosteroids systemically (meaning orally or via injection) have a higher risk of developing immune system side effects compared to those who use the drug topically (such as for skin problems like eczema) or through an inhaler or nasal spray (such as for respiratory issues like asthma).

The more your immune system is suppressed, the greater your risk of contracting a contagious infection, including coronavirus. However, more research is needed on how taking corticosteroids specifically affects risks related to COVID-19.

Advice for People Currently Taking Corticosteroids for Chronic Conditions

First of all, do not stop taking any of your regular medications without first talking to your doctor.

“We’re not changing any recommendations for rheumatology patients [about medications to use or avoid] at this time based on this virus,” says Dr. Domingues. “There’s not enough data, and everything we say about the virus is preliminary.”

He also adds that people who are on a very low dose of prednisone, perhaps 5 mg, should not be terribly concerned about the drug putting them at increased risk. When in doubt, always call your doctor.

If your health is good at the moment — meaning, the condition for which you’re taking prednisone seems well-controlled — your doctor might discuss with you the idea of starting to wean off prednisone, especially if you’re taking higher dosages.

This drug is generally not recommended for long-term use anyway, and the additional threat of COVID-19 might be a good reason to consider slowly stop it.

Do Not Stop Corticosteroids on Your Own

And do not attempt to go cold turkey. In addition to risking a flare of the condition you were using your steroids to treat, such a drastic change could throw your body into adrenal crisis, which can be fatal, says Dr. Huffstutter. Steroids must always be tapered, rather than stopped abruptly, when you cease taking them.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.


Sources

Glucocorticoid effects on the immune system. UpToDate. https://www.uptodate.com/contents/glucocorticoid-effects-on-the-immune-system.

Interview with Joseph E. Huffstutter, MD, partner with Arthritis Associates in Hixson, Tennessee

Interview with Vinicius Domingues, MD, a rheumatologist in Daytona Beach, Florida

Prednisone and other corticosteroids. Mayo Clinic. https://www.mayoclinic.org/steroids/art-20045692.

Infographic: Coronavirus Survey Reveals A LOT About What High-Risk, Immunocompromised Patients Are Thinking Right Now

Here’s what 350+ high-risk patients are thinking, feeling, and doing to manage their health during this unprecedented COVID-19 health crisis.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

We at the Global Healthy Living Foundation, a non-profit organization whose mission focuses on education, support, advocacy, and research for people living with chronic illness, have been in 24/7 contact with our patient communities since COVID-19 started to spread across the globe in January 2020.

Our research team sought to understand what people who are at high risk for coronavirus complications are currently thinking, feeling, and doing with regard to many aspects of managing their health during this unprecedented health crisis. We surveyed more than 350 people between March 19 and 23, 2020. Below is an infographic that summarizes some of our main findings.

Key takeaways include:

High-risk patients have been doing a lot to prepare for self-quarantine but have not done as much asking help — such as with grocery shopping or getting other essential supplies — from other people.

High-risk patients have a lot of anxiety due to a lot of different reasons. Read more here about causes of anxiety.

High-risk patients generally feel supported by loved ones and friends. Of those who work, a majority report that their workplace is being supportive.

High-risk patients are craving more information from their health care providers.

High-risk patients think their state and local government is managing the outbreak better than the federal government is.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.