High Risk COVID-19

Getting COVID-19 with an Autoimmune Disease: My Experience

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Hey all! It’s been a while since I last wrote a blog post. And the reason for that is…after 2.5 years of this pandemic and being fully vaccinated, I finally got COVID-19.

Getting COVID was one of my worst fears during this pandemic. As someone with an autoimmune condition, I wasn’t sure how my body would react to getting the virus. I had read stories, such as this young woman with an autoimmune condition, who had caught COVID and ended up having to get a lung transplant. It’s really scary since some people report that their symptoms are more of a bad flu, while others end up with crippling long COVID symptoms or worse, end up passing away.

It’s been a few weeks since I first tested positive, and I’m on the mend. My main symptoms were a fever, chills, sore throat, dry cough, loss of taste and smell, fatigue, joint pain, muscle soreness and weakness. As you can imagine, it wasn’t a fun recovery!

My only symptom now, a few weeks post-COVID diagnosis, is a lingering dry cough. I have asthma, and although it’s a very mild form of asthma, it definitely flared up when I got COVID.

I wanted to share some of the things that helped me recover from COVID-19 quickly when you have a compromised immune system. Of course, always talk with your doctor before beginning any kind of treatment plan or modifying your health regiment.

1. Anti-viral medication

The first thing that helped me recover from COVID more quickly was getting on anti-viral medication. The medication, called paxlovid, was developed by Pfizer and is composed of two separate medications: nirmatrelvir and ritonavir. The medication is taken orally as six pills swallowed daily – three in the morning, and three at night.

Paxlovid isn’t available to just anyone, however. You have to be at high risk for severe disease if you get COVID-19. As someone with an autoimmune condition and asthma, I definitely fit that category. I was able to get a last-minute telehealth appointment with a family doctor, and he prescribed me paxlovid, as well as some prescription cough medication.

A clinical trial showed that taking paxlovid resulted in an 89% reduction in the risk of hospitalization and death. So, if you get COVID and you’re immunocompromised in some way, I would definitely talk to your doctor to see if you can get a prescription for paxlovid or another anti-viral medication to help you recover faster.

2. Heating/Cooling Pad

Another item that really helped me recover from COVID was a lavender heating and cooling pad. I’ve talked about using a lavender heating pad in the past on this blog for general muscle aches and joint pains, but it was definitely helpful in recovering from the virus as well.

For example, when I was running a low-grade fever, I was able to put the pad in the freezer to turn it into a cooling pad, helping me cool down when I was running hot at night. When I had bad muscle aches and joint pains, I would heat up the pad in the microwave and within a minute, I was able to get some relief.

There are many inexpensive heating pads that you can find online – for example, I found this lavender heating pad from Amazon for only $12.99. You can obviously get an unscented version if you prefer, but I do enjoy the floral aroma.

3. Humidifier

As someone with Sjogren’s syndrome, having a humidifier is always a good bet, since it makes the air feel less dry and helps moisturize your immediate environment. That being said, it also helped me to feel more comfortable when sick with the virus, since COVID gave me a bad dry cough as well, not to mention I had a flare up in many of my Sjogren’s syndrome symptoms, like eye, mouth, and skin dryness.

The humidifier I use is from the brand Crane, but you can find various humidifiers online in different styles and sizes that will fit your space best.

4. Throat Spray

If you’re like me and you experience a bad sore throat and cough when you’re sick with COVID, then I’d recommend looking into an over-the-counter throat spray to help relieve some of the soreness and discomfort. You can get throat sprays with a numbing agent, like phenol or lidocaine, at most major pharmacies. I ended up picking up this cherry-flavored throat spray from CVS, and it definitely helped me get through some of my worse days.

If you’re looking for more of a natural throat spray, you can try an echinacea throat spray such as this one on Amazon for less than $12. Echinacea is a natural compound derived from perennial flowers, and has been used among Native American populations for its healing properties. That being said, echinacea is believed to work by boosting one’s immune system (like Vitamin C), so if you have an autoimmune condition, just be sure to get the go-ahead from your healthcare provider before taking any herb or medication that could increase immune activity.

Those are the items that helped me the most to recover more quickly from COVID-19. Are you someone with an autoimmune disease or other chronic illness who caught the virus? If so, what helped you to recover? Let us know in the comments below!

Woman with Rare Autoimmune Disease Undergoes High-Risk Treatment

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Shelley Clark-Collins and her partner Mark Doyle have travelled to Ottawa, Ontario so that she can receive an innovative treatment for her rare autoimmune disease (Photo: CBC News)

Shelley Clark-Collins, a 56-year-old woman from Saint John, New Brunswick, Canada, is looking to undergo a high-risk procedure to treat her rare autoimmune disease.

Clark-Collins lives with dermatomyositis, an autoimmune condition in which her body’s own immune system mistakenly attacks her healthy cells, causing inflammatory, painful and degenerative changes to her skin and muscles. According to Johns Hopkins Medicine, symptoms of the disease include rashes and spotting on the skin, swelling, stiff joints, muscle weakness and aches, difficulty swallowing, voice changes, fatigue, fever, and weight loss. Dermatomyositis can also cause other autoimmune and connective disease conditions, like lupus, and increase the risk of developing cancer.

Dermatomyositis is extremely rare, affecting fewer than 10 in 1 million people, according to an estimate from the National Organization for Rare Disorders (NORD). The disease most often occurs in adults ages 40-60, and juvenile dermatomyositis occurs most commonly in children and youth between the ages of 5 and 15.

Because of its rarity, Clark-Collins had a difficult time getting diagnosed. As a hairdresser, she suddenly found that she was so weak, she could no longer hold up a blow dryer or stand for long periods of time. She was falling down frequently, couldn’t get out of the bathtub, or lift her bed sheets. She was later diagnosed with multiple sclerosis (MS) after a neurologist found a lesion in her brain.

“But what he was treating me with [for MS] wasn’t working,” explained Clark-Collins. After seeing numerous specialists, she was diagnosed with “everything but the kitchen sink,” she recalls, including cancer, arthritis, and Grave’s disease. A dermatologist even told her that she should see a psychiatrist for Empty Nest Syndrome as a result of her kids moving out.

Despite these setbacks, Clark-Collins was eventually correctly diagnosed with dermatomyositis through blood work and muscle biopsies. Since then, the disease has affected her health and wellbeing substantially. Prior to developing the disease, she was an avid marathon runner and outdoor enthusiast, enjoying kayaking, rock climbing, and skiing. Now, she says that walking to her car is a feat. She sleeps in a chair because getting in and out of bed is too difficult with her muscle weakness. She has difficulty swallowing and talking, and has suffered irreparable damage to her heart and lungs. She’s had a stroke, blood clots, and a life-threatening sepsis infection.

Dr. Harold Atkins is pioneering a new treatment designed to help patients with dermatomyositis, a rare autoimmune disease.

However, Clark-Collins has found hope in a new procedure being pioneered by Ottawa, Ontario-based Dr. Harold Atkins. The innovative procedure is a combination of intense chemotherapy and a blood stem cell transplant. The chemotherapy will destroy her diseased immune system, and the stem cells from her bone marrow will be removed, purified and re-injected into her body. It’s a risky and aggressive procedure that aims to reset her immune system – but there are no guarantees that it will work. With the COVID-19 pandemic still raging, re-setting her immune system also leaves her extremely vulnerable to contagious diseases, meaning she could easily die should she catch the virus.

Despite the risks, Clark-Collins says she’s “very excited,” and is looking forward to the possibility of reclaiming her life. As a mother of two adult children, she says “it’s been hard on [my kids] to watch me decline like that.”

Plus, she’s running out of options. She has developed a resistance to several of her medications already, she can’t take large doses of steroids for much longer, and her opioid painkiller can cause an addiction. She also goes to the hospital once a week for plasmapheresis, a procedure in which her plasma (the liquid part of the blood) is separated from her blood cells, and is replaced with new plasma. But this treatment isn’t guaranteed to work forever.

With this new treatment, the hope is that her dermatomyositis will go into remission. Clark-Collins says she dreams of being able to regain her independence, start running again, and just to be able to hug her children without excruciating pain.

“Just maybe [I’ll] get a little big of my life back,” she said hopefully.

To learn more about Clark-Collins’ battle with dermatomyositis, read the full story on CBC News.

Can I get the COVID-19 vaccine if I have an autoimmune disease?

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Is the COVID-19 vaccine right for autoimmune disease patients?
The COVID-19 vaccine is expected to roll out to members of the public in early 2021. Image courtesy of the BBC.

As the COVID-19 vaccine rolls out across the nation, many members of the public are wondering if getting vaccinated against the coronavirus is right for them. More specifically, those with autoimmune disorders, a disease class in which one’s own immune system mistakenly attacks the body’s own tissues, wonder if they are candidates for the COVID-19 vaccine.

Dr. Shafinaz Akhter, Physician at Chester County Hospital in Philadelphia, PA, states, “Our advice has always been that there is no harm to getting it. It is very unlikely that you’re going to have an adverse reaction or worsening symptoms from your underlying disease based upon receiving the vaccination.” For this reason, she says that at her hospital, they are recommending that anyone with an autoimmune disease, such as lupus, rheumatoid arthritis, or Crohn’s, get vaccinated.

Furthermore, Dr. Akhter adds that many autoimmune disease patients take immunosuppressants or other immune-modulating prescription drugs, which are medications designed to decrease immune system overactivity and the damaging inflammation that comes along with it. These medications may reduce the vaccine’s ability to stimulate your body to mount an immune response against the virus. For this reason, it’s important to speak with your healthcare provider regarding the timing of when you take your medications and when you receive the COVID-19 vaccine. Examples of such medications include methotrexate or rituximab.

Dr. Anthony Fauci, the country’s top infectious disease expert, weighed in on the subject, stating, “It is clear that if you are on immunosuppressant agents, history tells us that you are not going to have as robust a response as if you had an intact immune system that was not being compromised. But some degree of immunity is better than no degree of immunity. So, for me, it would be recommended that these people do get vaccinated.”

The CDC, for its part, has stated that those with autoimmune conditions may receive the COVID-19 vaccine, while also acknowledging that no data currently exists with regards to the safety of these vaccines for autoimmune disease patients. 

The CDC adds that it is expected that the risk of the COVID vaccine for autoimmune disease patients to be minimal, based on the vaccine’s mechanism of action. This is because none of the COVID vaccines use a live virus, nor do they include an adjuvant, which is a substance that enhances the body’s immune response to an antigen. Finally, none of the available vaccines become incorporated in your own genetic material (i.e. DNA), since they are mRNA vaccines.

As with any new medical treatment, it’s encouraged to speak with your healthcare provider before making a decision on whether or not to get the vaccine, so that they can advise you based on your specific situation. To learn more about the COVID-19 vaccines, visit the CDC website.

Are you planning to get the COVID-19 vaccine? Let us know in the comments below!