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

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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.

Advocacy Alert: Coronavirus Drug Shortages and Threats to the Health Care Supply Chain: What You Must Know

A ‘Buy American’ executive order may put patient lives at risk. Become a volunteer advocate with the 50-State Network to demand continued access to medications for all Americans.

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

The Global Healthy Living Foundation (GHLF), the parent non-profit organization for the CreakyJoints patient community, signed onto a letter yesterday urging President Trump not to take any action that would destabilize the health care supply chain at this sensitive time.

President Trump is considering a “Buy American” executive order aimed at discouraging drug supplies coming from overseas. The proposed order would mandate or encourage the U.S. government to only purchase drugs whose active pharmaceutical ingredients are made in the United States, with a similar rule for medical devices.

If signed, the executive order would threaten the health care supply chain in the midst of a pandemic that already has our health care system strained and scrambling. The Association for Accessible Medicines (AAM) says that if implemented, this requirement would:

  • Limit patient access
  • Increase risk of drug shortages
  • Increase the cost of medicine

Americans are already facing shortages of critical supplies needed to save lives during this coronavirus pandemic, such as face masks and diagnostic testing kits. A drug shortage would restrict access to essential medications, such as hydroxychloroquine, which would be especially detrimental for high-risk patients who rely on a consistent supply of their prescription medications to prevent complications of their chronic conditions.

Join our 50-State Network patient advocacy arm and DEMAND CONTINUED ACCESS TO MEDICATION AND DEVICES for all Americans during this public health emergency.

Submit the form below to sign up to be a volunteer advocate with our advocacy arm, the 50-State Network. Our advocacy team is monitoring this important issue and others.

We may need to call upon patient volunteers to share their experiences to effect change. We will work closely with you to find volunteer opportunities that make the most sense for you. This can include speaking with the media, sharing your story with legislators on Capitol Hill, writing an op-ed for local or national news outlets, and sharing important advocacy alerts with friends and family.

Make Your Voice Heard! Demand Continued Access to Medications During This Public Health Emergency

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By submitting the form above, you consent to receiving emails from the 50-State Network and the Global Healthy Living Foundation. You can unsubscribe at any time.

About the 50-State Network

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation.

It is comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. Through public and personalized opportunities to advocate for the chronic disease community, the 50-State Network mobilizes patients to voice their concerns about access to treatment, quality of care, and the need to prioritize the physician-patient relationship. Learn more at 50StateNetwork.org.

‘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.

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.

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.

The 75+ Things Making #HighRiskCovid19 Patients Anxious Right Now, According to Our Survey

Members of the Global Healthy Living Foundation and CreakyJoints patient communities have a lot on their mind right now, including many life-or-death fears over their COVID-19 risk and overall health.

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

More than half (51 percent) of respondents to a recent survey we conducted of Global Healthy Living Foundation (GHLF)and CreakyJoints patient communities reported feeling anxious or very anxious right now — and the reasons are more varied and surprising than you might think. More than 350 patients and caregivers took the online survey between March 19 and 23, 2020.

We thought it was important to share some of the common concerns that hundreds of survey participants wrote in about. All of the responses have been de-identified to protect peoples’ privacy.

If you are experiencing anxiety, we encourage you to join our GHLF COVID-19 Patient Support Program. This free program is for chronic illness patients and their families to access updated information, community support, and other resources tailored specifically to your health and safety.

We also encourage you to read these related resources:

Getting COVID-19 and Being High-Risk

“Getting the virus and having a hard time recovering from it.”

“Catching coronavirus due to my immunosuppressed health status, financial worries, my family being sick with coronavirus.”

“I’m concerned myself or a loved one will get the virus and will not be able to survive it.”

“Catching it and becoming a burden on our NHS [National Health Service, the publicly funded healthcare system of the United Kingdom].”

“Worried about getting it and not surviving.”

“How can I avoid [coronavirus], as I have various meds that are immunosuppressive? I fall into the vulnerable group.”

“Getting the virus and surviving the virus. Feeling the pain of RA with the pain of the virus.  Scare of reducing or getting off my medication.”

“I take [a biologic] and have had severe past lung issues. If I get the virus or pneumonia, I have very little hope.”

“On immunosuppressants. Anxious about falling ill when hospitals are overwhelmed and not receiving adequate treatment.”

“Getting sick and having a longer-than-usual recovery time because I have rheumatoid arthritis. And will I be able to keep my job when this is over? My insurance is through my employer.”

“Worried about catching it and ending up on a ventilator as I am in a high-risk group.”

“I have weak lungs so I’m scared to get it.”

“Catching this from my grandchildren.”

“Becoming ill from COVID-19 and being taken to hospital. Not being able to breathe.”

“As someone with asthma — who wakes up most mornings with a heavy phlegmy chest and gets chest infectious every winter — I can’t imagine having a respiratory condition like COVID- 19 has been described. I am also anxious about the changes to society in terms of things shutting down, people hoarding essential supplies and meds, and the economic situation with all the job losses as businesses close or temporarily shut down.”

“Am currently unwell — not because of COVID-19 — and on immunosuppressants so I don’t feel I’d stand a chance if I caught the virus. Also, I am caring for elderly parent with COPD.”

“Dying and leaving my children behind.”

Getting Subpar Treatment

“Getting the virus and not being treated because of my age.”

“Having no choice about where to have medical care in the event I do get COVID virus. The nearest facilities are horrible on a good day.”

“Fear that if I get sick and need hospitalization that I won’t get a respirator because I have chronic illness, my BMI is over 25, or because there aren’t any left.”

“My immune system’s ability to manage infection should I be infected. Worst-case scenario fear: that I will develop complications and require medical help I won’t be able to get because hospitals are overloaded. My greatest fear is not my body’s vulnerability, rather, it is that the U.S. health care system will fail me.”

Not Being Able to Prepare

“I recently broke my foot and it makes everything much harder with regard to making sure we are as prepared as possible.”

Exposure at Work

“I am a health care professional and am worried about exposure at work.”

“I work in health care and must continue to work even though I don’t feel safe with potential coronavirus exposure.”

“I am a nurse and working in a hospital. I do not have access to N95 masks and I am being exposed to COVID-19.”

“I’m a nurse working on a hospital and we receive one N95 mask we are to reuse indefinitely so I feel I’m at a high risk since I take [immunosuppressing medications].”

“My wife works in a factory. I worry about her becoming infected and passing it on to me.”

Feeling Isolated and Apart from Loved Ones

“Not being able to see my kids and grandkids.”

“Not seeing my grown children. We live over an hour away and my son is in retail. Getting the virus and having bad symptoms.”

“How long will we be social distancing? I need hugs…”

“Being alone; getting sick; how long this will last; what life will be like after.”

Others Getting Sick and Not Being Able to Help Them

“I am somewhat worried about getting sick, but I am more worried about being unable to help loved ones when they get sick.”

“My children and grandkids getting sick.”

“Getting sick. Or my mother getting sick. Or my daughter getting sick. We’re all immunocompromised … It will still be difficult to care for whomever eventually gets this virus. I’m not sure we’re all going to make it through unscathed.”

“Scared my 85-year-old parent will get this. Getting the disease with a low immune system and having to fight it off or giving it to someone else. Also running out of supplies and food.”

“That both my spouse and I will get seriously ill and no one will be able to take care of our kids. Also, death.”

Putting Others’ Needs First

“My child’s missed schooling and my own ongoing health needs taking a backseat.”

Lack of Medication and Supplies

“I worry now that president Trump is touting hydroxychloroquine as a cure for COVID-19 that I as an RA patient will be forced to be shorted on my supply.”

“People dying, hospitals running out of supplies.”

“Not being able to buy/source cleaning supplies or soap or hand sanitizer. Being more at risk due to autoimmune conditions. My husband having to go out to work. Being unable to shop online due to high demand.”

“Anxious about not being able to do simple things like grocery shop or finding certain items or how long we can last under this stressful way of life.”

“My infusion next week has been cancelled because Actemra is not available [as it is] being used for treatment in virus.”

“Worried I will get it and die. Or there won’t be enough ventilators.”

“Our local hospitals have said they’ve run out of intensive care beds and ventilators. I am high risk and they are talking about having to choose who gets the bed. I have children and I cannot go to the food shops, but they are empty anyway. I have made an online delivery order but keep being notified my items are out of stock. I cannot book another a lot as none are available for the next 30 days. I’m scared.”

“Being on a fixed income and running out of supplies, then not being able to buy some or afford them because of hoarding.”

“Not sure if my medications and other essential items will continue to be available.  Also, no face-to-face appointments with my rheumatologist. Only phone calls.”

“I am scared to go outside and get my prescription refilled. I don’t know if I can trust abled people to take appropriate precautions and not get me sick.”

Lack of Testing

“Not being able to access COVID-19 testing; and the economic implications of the stay at home orders.”

“Concerned for the lack of tests so I feel we don’t have an accurate picture of the spread of the disease. Concerned that it will affect our livelihoods.”

Not Understanding My Risk

“Uncertainty about my body’s immunity and whether I’m more susceptible to the virus or not. Uncertain whether my condition counts as being in the ‘high risk category.’”

Losing Control of My Health

“This past year I have finally been able to gain a sense of health. I am less anxious about the virus than I am about having to put my life on hold, having to separate myself.”

“Taking a biologic at this time and whether it’s better to stop it and live with a flare or continue with it.”

“My husband and I are both immune-compromised and worry about getting our 30-day supply of medications for chronic pain.”

“I need to get in to possibly get an injection for macular degeneration. I don’t want to risk being in the waiting room so am putting it off.”

People Not Following Public Health Advice

“Helping my teenage children understand and cooperate with self-isolation and social distancing.”

“The uncertainty of it all, the fear of myself or a loved one contracting the virus. Some people not listening or taking advice from countries going through the same thing, like China and Italy.”

“I’m anxious because I live in Broward County, Florida, where our governor allowed Spring Breakers to party and most likely spread the disease even more throughout my town. I’m anxious because my husband may lose both of his jobs and I can’t work. I’m anxious because my friends may die because selfish people aren’t taking social distancing seriously.”

“People not understanding the gravity of this situation.”

“I’m anxious because it seems like too many people aren’t taking COVID-19 seriously in my state. I really want everyone to do the right thing.”

“Other people — like my family — being inconsiderate and unconcerned about the dangers facing me.”

“I suspect it’s a matter of time before I get the virus. I live in an apartment so I have to go through shared spaces to walk my dog or go to my car. Neighbors are not taking this seriously. I’m supposed to move into a house soon which would be safer, but travel restrictions will prevent the move.”

“There are still many people who are not covering their mouth when they cough or sneeze and have no concept of personal space.”

“That people don’t stay home, medical services get overwhelmed, and people die needlessly.”

“I’m most anxious about those who are NOT taking this seriously.”

“That people aren’t taking precautions because people at high risk don’t matter.”

“People not taking this seriously.  And those who feel folks who are over age 60 are expendable.”

“Concerned about dying if I get COVID-19. Insufficient disinfecting supplies because of hoarding. Risk of using mass transit to see my doctor. Not leaving home except for necessary medical care. Upset that fools are still partying and crowding together.”

Dealing with Difficult People

“Acquiring the disease. Dealing with ‘difficult’ people if I need to go out in community briefly (market).”

Financial and Societal Issues

“Primarily the stock market and the actions of humans in a minor breakdown of society. I try not to worry about contracting COVID-19 because it’s relatively out of my control despite mitigating action on my part.”

“I am most anxious about the larger societal impact.  I am most anxious personally for the loss of income.”

“No income. I am a self-employed part-time personal assistant and need to self-isolate, not run around doing errands for someone else right now. Also anxious about catching COVID19 and others catching it and it not being controlled.”

“That the pandemic will get worse and those critical to our existence like grocery, pharmacies, restaurants, truckers, health care workers will be so affected that we get into a very dire situation.”

“Getting very sick and leaving my family to fend without my support and income.”

Government Response

“Lack of leadership in federal government. Hate mongering. Lack of necessary supplies.”

“I’m anxious that the general public isn’t taking it seriously enough. So many people aren’t social distancing, aren’t practicing basic hygiene, like hand washing and covering coughs, and have an attitude of ‘well, I’m young and healthy, so I don’t need to do anything,’ which is incredibly dangerous. I also don’t trust the Australian government to protect those most vulnerable as they’re far more concerned with economic outcomes.”

“At first I was anxious about getting the infection and not being able to fight it off because of the immunosuppressant I’m on, but now after not having set foot outside the house in three weeks, I’m anxious about the lack of governance [in my] state.”

“I am most worried that our federal government isn’t taking this seriously enough. They seem to view it as a stock market problem rather than a health problem. I see little concern or compassion for the public. I worry that if I get sick they will view me as not worth saving.”

News Coverage

“The news can be so scary. And finding food is so difficult. My husband doesn’t want me leaving the house and is trying to stay home himself so he doesn’t bring it here.”

Uncertainty

“The unknown of it all.”

“I live alone and there is so much uncertainty regarding coronavirus outbreak.”

“So many unknowns! Health concerns, frustration with social distancing, economy, etc.”

“Fearful of the unknown basically.  The What-Ifs. Also, I have questions that my rheumatologist could answer, but the office/hospital has not provided a number or site for such.”

“Just: When this will end?”

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.

20 Journal Prompts to Help Chronic Illness Patients Cope with All. Of. This.

Writing can help us admit to our feelings, accept our fear, manage our anxiety, and move through serious trauma.

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

When I was little, my grandfather and I used to sit at the kitchen table writing stories onto Post-It notes. Sometimes, when I was learning to write, we’d copy stories directly from books. I loved the way my handwriting shaped itself onto the page. I found myself covering post-it note after post-it note with little stories and poems and thoughts. I often wrote about the earth (I was a sensitive child, in tune with nature), about the way we should treat it, about islands and oceans.

I still have some of these sticky notes.

Tragically, my grandfather developed emphysema after he left the Navy and entered the workforce. He passed away at the young age of 63. As he was spending his last months on earth — unbeknownst to me in my blissfully ignorant child’s mind — he thought of ways to spend time with me before he left this earth.

One day, he brought a calligraphy set home, set it upon the table, and taught me how to draw the letters. I found the act itself a place that felt like home. In writing, I found myself. To this day, it gives me a sense of comfort and family, a ritual act tied into my upbringing and true self.

After his death — and throughout my whole life; here I am, doing it again! — writing became a way to explore myself and to move through pain. It came naturally to me. I believe this was his parting gift to me — giving me a way to express myself honestly.

Now, I help others do it, too. I even wrote a book about using writing as a ritual and healing act.

Right before the COVID-19 pandemic hit, I started taking a Journal Therapy certification course, and I’m so glad I did. It solidified what I always knew to be the case: Writing can help us admit to our feelings, accept our fear, manage our anxiety, and move through serious trauma.

How Writing Helps Us Cope

According to the American Psychological Association, expressive writing (writing about your thoughts and feelings) has helped boost immune health and support overall health in patients with asthma and rheumatoid arthritis. Another study found that writing can help improve our resilience in traumatic times. There is even evidence that writing help connect us to a deeper spirituality.

It’s safe to say that COVID-19 is, in many ways, traumatizing us all in various ways — through sickness, anxiety and depression, financial loss, loss of routine, sudden change, and the impact it has on the chronically ill.

As someone living with ankylosing spondylitis (AS), a form of inflammatory arthritis, the coronavirus pandemic has destroyed many of the daily routines I rely on for self-care.

I can’t go to the gym or get as much physical activity as I normally do (movement is a huge part of how I manage my condition) and I definitely can’t go swimming, which has been the one thing I rely on to seriously manage my pain.

My AS pain levels have kicked up due to stress, and then the stress leads to more pain. A cocktail of grief, worry, and uncertainty has made it hard to get out of bed, throwing off my work.

It’s hard to be a chronically ill person on any given day; in this coronavirus world, we have to worry about staying safe and healthy, making ends meet, and caring for our high-risk bodies. It’s a lot.

So I’ve turned to therapeutic writing. It is my home, my safe space, my palace of introspection and strength. It’s free and it’s always available — at midnight when my mind is racing or between work assignments.

Journaling through the coronavirus pandemic was even offered as a counseling tool by counseling services at Connecticut College. Because it works. Whether you’ve never written before, kept a diary here and there, or are a diligent daily journal keeper, writing allows us to be honest and authentic in an uncensored environment for the sake of documentation and personal growth.

Research shows that when we’re honest with ourselves, we can begin to take action and find strength. More often than not, we are more resilient than we think we are. Writing allows us to get the worry outside of our bodies so that it doesn’t rule us. We can rule it.

When we’re stuck inside the house and dealing with fear on a global level, we all experience tidal waves of emotions. And they will probably change day to day, or even hour to hour.

I’ve vacillated between fear and anxiety and work, work, work to distract my mind. I feel sad and hopeless and then inspired and hopeful. And of course, each and every one of my emotions is connected to my body. When I feel safe and hopeful, my body, like a plant, reacts as if it’s been watered. I can feel my pain levels and fatigue decrease a bit. But when I don’t care for myself or obsess over the news, I can feel my back seize up. I can feel my body lose strength.

Journal Prompts for Chronic Illness Patients

So, here are some of the journal prompts I’ve been exploring. They intersect wellness, worry, and chronic illness. They won’t stop feelings of pain, grief, or fear. But I hope they will help you gain control, insight, and self-compassion.

You might do one or two a day, or return to the same prompt over time to see how you react to it and how your reactions change — especially as our time in quarantine goes on.

  1. Where are you feeling pain or exhaustion in your body? Is the pain associated with a specific feeling? For example, is anxiety making it hard to sleep? Have you felt more back or neck pain in quarantine? Tap into your body and acknowledge it. 
  2. Are there things that you can control — even from within quarantine — that can help reduce your pain or stress levels? 
  3. How does staying inside impact your physical and self-care routines? How can those routines be adapted to your quarantine and coronavirus reality? 
  4. Write a letter to your body. What would you say to it as it experiences fear, uncertainty, and anxiety? 
  5. What are the things that you can rely on to help you find stress relief? It’s often fun to write these onto a big piece of paper, colored in or designed with illustrations. List every single stress relief tool so that you can refer back to this page as a toolbox.
  6. How have anxiety and fear changed your relationship with your illness? 
  7. What have you endured, survived, and conquered in your life in with regard to your illness? What have those experiences taught you about survival, change, and traumatic experiences?
  8. Imagine a safe space that is inviting, calming, and recuperating. What does it look, feel, smell, and sound like?
  9. Write down your current emotional, physical, and mental needs. How can you find ways to fulfill them during the day?
  10. Do you have health anxiety? Is the coronavirus pandemic making it worse, or harder to cope? Can you explore some of the reasons why — along with some of the facts that keep you grounded? How can you prevent catastrophizing?
  11. Are you being kind to yourself in this hard time? How can you be kinder to yourself?
  12. When you begin to worry about your body and health, what can you do to get control and seek support? Who is part of your support team?
  13. Write a letter to yourself about adaptability and resilience. What has your body taught you? How can it help get you through worry around the coronavirus?
  14. Do you feel out of control? If so, why? What are some of the ways you do have control? How is control connected to life with a disease? Has your disease made control seem appealing, or has it inspired you to let go of control a little more?
  15. What are five things you can do right now that can support your mental and physical well-being after a night of falling into a bad news spiral? How can these things help your stress levels and your disease?
  16. In which ways do your mental health and your physical health connect? Do you notice changes in your pain or fatigue when you are stressed out?
  17. Is the quarantine causing accessibility issues for you? How is this making you feel — and what are the ways you can help some help?
  18. How are others making you feel about your quarantine experience and feelings? 
  19. What does it look like when you show yourself compassion, patience, and love during hard times? How does this benefit your body and mind?
  20. Picture yourself surrounded by joy. What is joy? What is its shape, color, sound, or texture? Picture yourself being encompassed by it and held up in its arms. How do you feel? How does this help to provide support for your body and mind? 

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

Glass O, et al. Expressive Writing to Improve Resilience to Trauma: A Clinical Feasibility Trial. Complementary Therapies in Clinical Practice. February 2019. doi: https://doi.org/10.1016/j.ctcp.2018.12.005.

 Murray B. Writing to heal. American Psychological Association. June 2002. https://www.apa.org/monitor/jun02/writing.

Sick Leave Options for Immunocompromised Patients in the Coronavirus Pandemic: What You Need to Know

Can’t work because you are sick with COVID-19 or don’t want to work because you are a high-risk patient and worried about your coronavirus exposure? This information is critical to know.

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

While many employers have adapted to the coronavirus pandemic and put in place work from home policies, many workers are still deemed “essential” and being asked to show up to work as usual. This is especially challenging for high-risk or immunocompromised people with chronic illnesses who are more vulnerable to coronavirus complications.

The Global Healthy Living Foundation and its CreakyJoints patient community has been fielding many questions about this from patients. Generally, people want to know:

What options do high-risk or immunocompromised patients have if they still *have* to go into work?

The answer can vary by state. Localities are working to provide more opportunities to call in sick and work from home. Given the current pandemic, states and the federal government are enacting new pieces of legislation and creating a rapidly changing landscape.

We will update this resource as needed to keep you informed.

Please reach out to your HR department or visit your state’s Department of Labor website for further resources.

Federal Paid Sick Leave

In terms of having a right to work from home, there is no federal law that gives employees the right to work remotely, or the right to ask to work remotely. However, the federal government is working on provisions for expanding employee benefits. The Families First Coronavirus Response Act, which was recently signed into law, has numerous such protections.

Here are the basics:

Businesses with Under 500 Employees

The Act requires all public employers and private employers with fewer than 500 workers to provide paid sick leave to employees affected by the coronavirus (exceptions for health care providers, emergency responders, and certain small businesses are allowed).

Businesses with More than 500 Employees

Businesses with more than 500 workers are exempt, but in some cases people could be covered under state legislation (more on this below).

Businesses with Under 50 Employees

Businesses with under 50 employees could be exempt from the tax, but these businesses would have to “prove” their hardship.

Federal Sick Leave Benefits

Under the law, full-time workers can get up to 80 hours of paid sick leave, while part-time workers can get sick leave for the average number of hours they work over a two-week period.

These federal emergency paid leave benefits are already implemented but more are on the way.

Immunocompromised individuals, if eligible, will be able to use these protections to stay home and reduce their risk of exposure while also ensuring up to three months of paid leave benefit.

Specifically, Section 5102 of the Act covers workers who have “been advised by a health care provider to self-quarantine due to concerns related to COVID–19.”

Who Qualifies to Take Paid Sick Leave?

This is covered in the Definitions of Section 601 of the Families First Coronavirus Response Act. This section defines an “emergency leave day” as a day in which an individual is unable to work due to one of four qualifying reasons related to COVID-19:

  • The worker has a current diagnosis of COVID-19.
  • The worker is quarantined (including self-imposed quarantine), at the instruction of a health care provider, employer, or government official, to prevent the spread of COVID-19.
  • The worker is caring for another person who has COVID-19 or who is under a quarantine related to COVID-19.
  • The worker is caring for a child or other individual who is unable to care for themselves due to the COVID-19-related closing of their school, childcare facility, or other care program.

What Is Required of Employers by the Families First Act?

  • Requires all employers to allow employees to gradually accrue seven days of paid sick leave and to provide an additional 14 days available immediately in the event of any public health emergency, including the current coronavirus crisis;
  • Requires all employers to provide an additional 14 days of paid sick leave, available immediately at the beginning of a public health emergency, including the current coronavirus crisis;
  • Ensures paid sick leave covers days when your child’s school is closed due to a public health emergency, when your employer is closed due to public health emergency, or if you or a family member is quarantined or isolated due to a public health emergency;
  • Reimburses small businesses — defined as businesses with 50 or fewer employees — for the costs of providing the 14 days of additional paid sick leave used by employees during a public health emergency;
  • Enables construction employees to receive sick pay based on hours they work for multiple contractors; and
  • Makes the bill effective immediately so that employees in areas covered under a qualifying Public Health Emergency, upon the date of enactment, can take 14 days of paid sick leave in order to address COVID-19.

How Much Will Workers Be Compensated?

Workers who are sick or quarantined get full pay while on coronavirus leave, up to $511 per day ($5,110 in total).

Workers caring for another person or on leave because of an HHS-specified condition get two-thirds of their normal pay while on leave, up to $200 per day ($2,000 in total).

After this two-week period (10 days), workers receive two-thirds of their regular salary while on coronavirus-related FMLA leave, but compensation is capped at $200 per day and $10,000 in total.

State Paid Sick Leave

Twelve states and Washington D.C. have enacted laws (prior to the coronavirus pandemic) to require paid sick leave. You can read more about this from National Conference of State Legislators, but we summarized it here:

  • Connecticut was the first state to require private-sector employers to provide paid sick leave to their employees, with a law enacted in 2011.
  • California became the second state to enact paid sick requirements, with the passage of the Healthy Workplace, Healthy Families Act of 2014.
  • Massachusetts was the third state to require paid sick leave, as voters there approved the Earned Sick Time for Employees ballot measure during the 2014 general election.
  • The Oregon Legislature enacted a law during the 2015 session.
  • The Vermont Legislature did so during the 2016 session.
  • During the 2016 general election, voters in Arizona and Washington approved ballot measures requiring employers to provide paid sick leave.
  • The Rhode Island Legislature was the only state to pass a paid sick leave law in 2017, which took effect in 2018.
  • In 2018, Maryland, New Jersey, and Michigan enacted paid sick leave measures.
  • Two more states, Nevada and Maine, enacted paid sick leave laws in 2019. Nevada’s paid sick leave law took effect at the start of 2020, Maine’s does not take effect until 2021.

Here is a chart the outlines how paid sick leave benefits vary by state.

State Covered Employers Sick Leave Accrual
Arizona Private-sector employers and local governments One hour of sick leave for every 30 hours worked. Maximum of 40 hours per year.
California Public and private employers One hour of sick leave for every 30 hours worked. Employers may cap total paid sick leave at six days per year.
Connecticut Employers with more than 50 employees One hour of sick leave for every 40 hours worked. Maximum of 40 hours per year.
D.C. Public and private employers Employers with 100-plus employees: One hour of leave for every 30 hours worked. Maximum of seven days per year.
Employers with 25-99 employees: One hour of leave for every 43 hours worked. Maximum of five days per year.
Employers with 1-24 employees: One hour of leave for every 87 hours worked. Maximum of three days per year.
Maryland Public and private employers with more than 15 employees One hour of leave for every 30 hours worked. Maximum of 40 hours per year.
Massachusetts Public (not federal) and private employers with 11 or more employees One hour of sick leave for every 30 hours worked. Maximum of 40 hours per year.
Michigan Public (not federal) and private employers with 50 or more employees One hour of sick leave for every 35 hours worked. Maximum of 40 hours per year.
Nevada Private employers with 50 or more employees 0.01923 hours of sick leave for each hour worked. (Approximately one hour of leave for every 52 hours worked.) Employers can limit leave to 40 hours per year.
New Jersey Public and private employers One hour of sick leave for every 30 hours worked. Maximum of 40 hours per year.
Oregon Public and private employers Employers with 10-plus employees: One hour of sick leave for every 30 hours worked.
Employers with fewer than 10 employees: One hour of unpaid leave for every 30 hours worked.
Rhode Island Public and private employers with 18 or more employees in previous years’ two highest employment quarters One hour of sick leave for every 35 hours worked. Maximum of 40 hours per year.
Vermont Public and private employers (New employers exempt until one year after hiring their first employee) One hour of sick leave for every 52 hours worked. Employers can cap leave at 40 hours per year.
Washington Public and private employers One hour of sick leave for every 40 hours worked. Employees must be allowed to carry over up to 40 hours of unused sick leave per year.

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

H.R.6201 Families First Coronavirus Response Act. Congress.gov. https://www.congress.gov/bill/116th-congress/house-bill/6201/text. 

Paid Sick Leave. National Conference of State Legislatures. https://www.ncsl.org/research/labor-and-employment/paid-sick-leave.aspx.

Telehealth for High-Risk, Immunocompromised Patients: How to See Your Doctor Virtually During the Coronavirus Pandemic

Telehealth visits for routine care can help keep patients safe, make them feel connected to their doctor, and quell fears during the coronavirus pandemic.

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

As we learn new things daily about the coronavirus — and how to stop the spread — it’s no wonder that our heads are swirling with new questions, concerns, and worries every day. For many of our CreakyJoints and GlobalHealthy Living Foundation members, one of those questions is: Is it safe to go to my doctor’s office right now?

The recommendations here have been changing quickly over the past few weeks and will likely continue to change, so we will be updating this resource as needed. You should also note that what’s right for you will depend on your geographic area and how prevalent the community spread of coronavirus is near you.

Our team of patient advocates has been speaking with many different types of health care providers — rheumatologists, dermatologists, cardiologists, gastroenterologists, and others — over the last week and all of them are strongly urging patients to use “telehealth” appointments for routine care instead of seeing the doctor in person.

Some clinics are switching as many patients as possible over to telehealth visits and reserving in-person visits only for very serious issues.

What Is Telehealth?

Telehealth, or telemedicine, means seeing your provider over a video/audio service, like FaceTime, Skype, or a specific app intended for this purpose. It can also include phone calls.

“With telehealth, doctors see patients face to face instead of touch to touch,” says Lynette Byrnes, senior vice president of practice management services at United Rheumatology, a New York-based rheumatology care management organization that serves more than 600 independent rheumatologists across the U.S. “Patients need to stay connected with their physician right now and continue their care. Changes in how doctors are providing telehealth services is allowing this to happen in new ways right now.”

For patients with chronic illnesses — such as inflammatory autoimmune conditions, who are accustomed to seeing a provider every few weeks or months to check on their condition, make medication adjustments, and more — the thought of not having in-person access to your provider can be a little disconcerting. You may be wondering: Will you be able to still get the level of care you need?

We talked to rheumatologist Alvin F. Wells, MD, PhD, director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin, who has been helping to pioneer telemedicine for rheumatology clinics for years — and has been offering these services to patients prior to the COVID-19 pandemic — about how virtual doctor visits can help to quell fears during the coronavirus pandemic.

The biggest benefit of telehealth, says Dr. Wells, is that you get immediate access to your health care provider without any potential exposure to the virus. “Until we get more widespread testing, we don’t know who might be sitting next to you in the waiting room — or which provider may have been exposed to the virus,” he says.

New Rules on Telehealth

Telemedicine is far from new, but it is becoming more top-of-mind as public health experts continue to look for ways to “flatten the curve” and protect high-risk patients from potential COVID-19 exposure.

Under the President’s emergency declaration, the Centers for Medicare & Medicaid Services (CMS) recently loosened HIPAA health privacy laws for telehealth. This allows health care professionals without HIPAA-approved platforms to use the following apps to diagnose and treat patients:

  • Apple FaceTime
  • Facebook Messenger video chat
  • Google Hangouts video
  • Skype

Doctors may also utilize specific telehealth platforms through their electronic medical record software.

CMS created new billing codes specifically for telehealth appointments, which means doctors can be reimbursed for these visits similarly to how they would get paid for regular in-person appointments. Both of these changes are critical for the fast and widespread adoption of telehealth.

In other words, these new changes have removed a lot of the red tape that used to prevent doctors from being able to easily adopt telehealth and make it part of their practice.

While the current changes only apply to Medicare, typically private insurance companies follow suit and adopt similar policies.

“Temporarily if a doctor wants to chat with you on Facetime or Skype, it is no longer considered a HIPAA violation,” says Lawrence Green, MD, clinical professor of dermatology at George Washington University School of Medicine in Washington, D.C. “[Telehealth] is an excellent way for your doctor to see you, but make sure to do a live interaction, not an email chat.”

Ways to Utilize Telehealth Right Now

Some doctors, such as those in primary care, may be using telehealth to screen patients for coronavirus symptoms and decide whether people need to come in for testing.

And in addition to using telehealth for regular check-ups for managing chronic health conditions, telehealth can also be used for one-off minor health issues to avoid needing to go to the doctor in person — say, for a rash or a GI complaint.

Telehealth services can also provide virtual mental health support for any coronavirus-related depression or anxiety you’re currently experiencing.

Consider some of the many ways you can use telehealth:

  • Video chat about your symptoms or medication side effects
  • Send over a picture of a rash or other symptom of concern
  • Check in to see how you’re managing your inflammatory arthritis, or other chronic health condition
  • Have a therapy session
  • Get a prescription refill
  • Get a referral to another specialist
  • Get a second opinion

How Telehealth Actually Works

Dr. Wells, who is licensed to practice telehealth in Wisconsin, South Dakota, Montana, Illinois, and North Carolina, says he has seen an uptick in telehealth visits during the coronavirus pandemic so far.

“Many patients have called saying things like, ‘I’m on a biologic and have a cough and low-grade fever — and I’m not sure what to do?’” says Dr. Wells. Telehealth visits allow him evaluate patients’ symptoms and determine what to do next — without you having to take multiple trips outside your home. “Fifteen minutes and you hang up the phone. It’s that simple and easy,” he says.

For a routine rheumatology visit, a patient will call Dr. Well’s practice and log in using Zoom (a video-conferencing technology) on their computer or phone. They have a dedicated 30-minute appointment. You are able to see and hear the physician — and the physician can see and hear you.

“We spend the first one or two minutes discussing the patient’s complaints — ‘I have pain and stiffness’ or ‘I can’t sleep at night’ — and then we do a virtual joint exam,” says Dr. Wells.

This includes asking the patient to do the following:

  • Make a fist
  • Motion like you’re writing
  • Make a claw-type gesture
  • Make the prayer sign

Next, Dr. Wells asks whether the patient is experiencing any rashes, mouth sores, or GI issues like nausea or vomiting. The last five minutes is spent summarizing and documenting the information. “You get a dedicated time to address questions and the patient hasn’t left the home; it’s very efficient,” he says.

Naysayers of telehealth often cite the lack of a physical exam as being problematic, but Dr. Wells notes that a virtual visit is not the end of the line.

“You’re still a physician and you’re going to use your medical knowledge. You know what’s routine and expected on the medication versus what’s out-of-the-ordinary and when the patient may have to come into the office,” he explains. “The virtual visit is the trigger. It helps us understand whether a patient may need to get X-rayed or have labs done. Then, we can reconnect tomorrow, and based on the results, determine if you need to come in or if we can prescribe medication over the phone.”

“You don’t necessarily have to touch to treat,” says Byrnes. “It can be a more limited exam, but it’s an important way for the patient and doctor to stay connected, review labs, make sure patients are staying on their therapies, and answer any questions — especially about COVID-19 — that they may have.”

What to Ask Your Doctors About Telehealth Services

If you have an upcoming appointment scheduled with your doctor and they have not yet proactively reached out to you about it, it’s a good idea to call and ask whether the appointment can be conducted as a telehealth visit.

“Each practice will have its process for using telehealth,” says Byrnes. “You need make to sure you understand from them what to expect and how you will log on to speak with the doctor.”

Importantly, says Byrnes, “do not cancel upcoming appointments. Call the office and find out how you can work together to be seen.”

You should ask what to expect in terms of insurance coverage and payment. You will likely still have your usual coinsurance or copay; though it might be less than usual if your appointment is more limited in scope.

You can also contact your insurance carrier to inquire if they offer any telehealth services as well as what is (and what isn’t) covered outside of these services. To help keep at-risk seniors safe during the coronavirus, Medicare (administered by CMS) will allow health providers to waive or reduce cost-sharing for telehealth visits.

There are also several private companies that offer basic telehealth services for primary care through mobile apps, including MDLIVE, Amwell, Doctor on Demand, Talk Space and others. HealthLine has a list of highly rate telemedicine apps, though the Global Healthy Living Foundation has not vetted these and cannot recommend any of them specifically.

Telehealth is a smart way to reduce your exposure to the coronavirus and to stay safe, but take heart. Even if you do have to schedule an in-person visit with your doctor, they are likely taking extra precautions to keep their patients safe. They should be using social distancing recommendations for health care settings.

“We only allow two patients in the waiting room at one time. If there are four, we ask two to wait in their car,” says Dr. Green, who wears a mask and gloves when treating patients and gives the exam room a top-to-bottom cleaning with special antiseptic wipes after each visit.

“We go overboard between patients,” he says. “I want my staff and my patients to stay healthy.”

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

ACR Telehealth Provider Fact Sheet. American College of Rheumatology. https://www.rheumatology.org/Portals/0/Files/ACR-Telemedicine-Fact-Sheet-2020.pdf.

Interview with Alvin F. Wells, MD, PhD, rheumatologist and director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin

Interview with Lawrence Green, MD, clinical professor of dermatology at George Washington University School of Medicine in Washington, D.C

Interview with Lynette Byrnes, senior vice president of practice management services at United Rheumatology

Notification of Enforcement Discretion for Telehealth Remote Communications During the COVID-19 Nationwide Public Health Emergency. U.S. Department of Health & Human Services. March 23, 2020. https://www.hhs.gov/hipaa/for-professionals/special-topics/emergency-preparedness/notification-enforcement-discretion-telehealth/index.html.

Timmons J. The Best Telemedicine Apps of 2019. May 22, 2019. https://www.healthline.com/health/best-telemedicine-iphone-android-apps.