Coronavirus

Why Autoimmune Patients with COVID-19 Should Beware of the Cytokine Storm

Isabel2 Comments

As the SARS-CoV-2 virus responsible for the COVID-19 disease continues to infect people and claim lives across the globe, scientists and medical professionals are learning more about its impact on patients.

One interesting phenomenon that’s been observed is that some coronavirus patients experience relatively mild to moderate symptoms, while others experience severe, life-threatening problems that can land them in the ER. According to Sharp Health News, the virus itself may not be entirely to blame for this, but rather, an overreaction by the body’s immune system.

When a foreign agent, such as a virus, invades your body, your immune cells secrete cytokines, which are molecules that initiate an immune response. However, in some cases, immune cells continue to secrete cytokines, even after a sufficient immune response has been mounted. This is called a ‘cytokine storm’ and the overproduction of these molecules can cause a harmful inflammatory response in the body.

Certain people are more susceptible to cytokine storms than others; for example, there is evidence that those with genetic mutations in their immune cells are more vulnerable. According to creakyjoints.org, those with autoimmune conditions often have abnormally high levels of these cytokines, which is why autoimmune patients often take immune-suppressing medications. However, a cytokine storm isn’t the same as an autoimmune disease flare, though they can be related.

As detailed by creakyjoints.org, some autoimmune patients end up with cytokine storms unrelated to COVID-19. Dr. Randy Cron, a pediatric rheumatologist and author of the book Cytokine Storm Syndrome commented, “About 10% of patients with juvenile idiopathic arthritis will experience [a cytokine storm]; in some cases, multiple times.”

With regards to COVID-19, which is respiratory in nature, a cytokine storm can gravely impact a patient. Acute lung injury (ALI) is a common consequence of a cytokine storm occurring in the lungs, and if a lung infection is severe, the inflammation will spread to the rest of the body via one’s blood circulation and cause sepsis. In some cases, the immune response to an infection can even be deadly.

That’s why it’s important to ‘calm the storm’ and prevent a cytokine storm before it even happens. One type of treatment being explored for COVID-19 is hydroxychloroquine, which is an antiviral and immunosuppressant drug used to treat malaria and autoimmune diseases like lupus, rheumatoid arthritis (RA) and Sjogren’s. Although the medication is still undergoing clinical trials, many are hopeful that this drug will serve as a treatment to halt the progression of COVID-19.

Besides pharmaceutical therapies, Sharp Health News cites curcumin, a compound found in turmeric, as beneficial for its anti-inflammatory properties. A 2015 study states that in lab experiments, researchers found that curcumin blocked the release of the cytokines that are responsible for inflammation.

All in all, it’s important for autoimmune patients to guard against the coronavirus by adhering to strict hygiene guidelines, such as hand washing thoroughly with soap and water, avoiding close contact with others, and disinfecting surfaces routinely. Remember, prevention is the best form of treatment, and can help those with autoimmune disease to avoid a damaging cytokine storm.

April is Sjogren’s Awareness Month; Read My Story

Isabel5 Comments

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

Critical Autoimmune Treatment Becomes Scarce as Trump Touts Possible COVID-19 Benefits

Isabel3 Comments
A health care professional holds up Plaquenil, which is being explored as an experimental treatment for COVID-19 (Photo credit: The New York Post).

Last week, I stopped by the pharmacy to pick up my prescriptions – a normal occurrence for any autoimmune disease patient. As I waited in line, a heard a young woman ask for Plaquenil, an anti-malaria drug commonly used to treat autoimmune conditions such as lupus, rheumatoid arthritis (RA), and Sjogren’s Syndrome.

Unfortunately, the pharmacist responded that they were completely out of Plaquenil, and they weren’t sure when they were going to have the medication in stock again. The patient, looking upset, left the pharmacy empty-handed.

It’s no surprise that Plaquenil, and its generic counterpart, Hydroxychloroquine, is in short supply. During recent press conferences, President Trump claimed that the drug had potential to treat those suffering from COVID-19, the disease caused by the novel coronavirus. He was swiftly contradicted by his top infectious diseases adviser, Dr. Anthony Fauci, who said that the evidence that the drug was helpful for the virus was anecdotal at best.

Despite the experimental nature of the drug for treating COVID-19, this hasn’t stopped people from trying to stockpile the drug. In fact, a recent New York Times article stated that pharmacy boards have discovered that doctors are hoarding the medication by writing prescriptions for themselves and their family members. The situation is especially dire in the states of Idaho, Kentucky, Ohio, Nevada, Oklahoma, North Carolina, and Texas.

The American Medical Association’s president, Dr. Patrice Harris, denounced the practice, saying that the association “is calling for a stop to any inappropriate prescription and ordering of medications…and appealing to physicians and all health care professionals to follow the highest standards of professionalism and ethics.”

As a result, a number of pharmaceutical boards have imposed restrictions, such as barring pharmacies from dispensing both chloroquine and hydroxychloroquine unless the prescription includes a written diagnosis of a condition that the drugs have been proven to treat. Other rules include limiting the prescription to a 14-day supply unless a patient has previously taken the medication.

Still, not every state’s board has taken action to ensure that the drug is made readily available to autoimmune disease patients. As a result, the Lupus Foundation of America, Arthritis Foundation, and other medical associations have issued a joint statement urging the White House to ensure access to the medication during the COVID-19 crisis, citing the fact that it is the only known drug shown to increase survival in patients with lupus.

For Sue Hauk, a 48-year-old lupus patient from Conshohocken, Pennsylvania, Plaquenil has been a lifesaver. Her main lupus symptoms include: joint pain, chest pain, fatigue, and nausea, which this medication helps to keep in check. When she first heard reports of the medication being scarce, she contacted her pharmacy to request a refill of her prescription, but they couldn’t offer her more than a five day supply. She then called seven different in-state pharmacies, and then five out-of-state pharmacies – each were either out of stock, or refused to fill her prescription since she wasn’t an existing customer.

“I thought, that can’t happen to me, because I’m on this and this is my life-sustaining drug. If I can’t find more, once it’s out of my system I don’t know what will happen,” Hauk said. “I’m at a loss right now.”

Sue Hauk, a lupus patient, is concerned that she won’t have access to her life-saving medication due to the COVID-19 pandemic (Photo credit: PBS).

There are over 1.5 million Americans living with the autoimmune disease lupus, who could be adversely impacted by the unnecessary stockpiling of this medication. While it’s funny to joke about people stockpiling items like toilet paper, hoarding medication has much more serious consequences.

Samantha Wayne, another lupus patient who has been taking the drug for the last 12 years, said in her YouTube video that hydroxychloroquine ensures that her symptoms don’t flare up and cause more inflammatory damage. She says it also prevents many patients from having to utilize more intensive therapies, such as immunosuppressant organ transplant drugs or chemotherapy. She also points out that this may be the only treatment deemed safe for use for pregnant autoimmune patients. She concludes the video stating that while she’s concerned about finding a way to combat the coronavirus, “those of us with autoimmune issues, such as lupus, we matter too.”

Samantha Wayne, a lupus patient and YouTuber, is raising awareness about the consequences of autoimmune patients not having access to hydroxychloroquine (Photo credit: Live Hope Lupus).

Cindy Messerle, CEO of the Lupus Foundation of America‘s Philadelphia Chapter, echoed those sentiments, saying, “I do hope that a treatment for COVID-19 is found ASAP. If it happens to be with hydroxychloroquine, the important thing is that people who take in on a daily basis for lupus and other autoimmune diseases have uninterrupted access to their medication.”

To read more about our coronavirus coverage, check out the following blog posts: