Do Long-haul COVID-19 Patients Provide Clues for Sarcoidosis Treatment?

Athena Merritt avatar

by Athena Merritt |

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Since the novel coronavirus emerged, what’s increasingly struck me are the eerie similarities between COVID-19 and sarcoidosis. The deeper we’ve gotten into this pandemic, the more I wonder if it might provide new clues for treating the sarcoidosis population.

Much like our illness, COVID-19 can come and go without some folks ever knowing it’s been there. In others, its presence can be brief, lingering, or even fatal. Sound familiar?

COVID-19 caught my attention even before it hit U.S. shores, because it initially attacks the lungs. That’s exactly where sarcoidosis chooses to set up shop in about 90% of us, including myself. 

Then cardiovascular complications emerged, which resulted in deaths and heart damage that may be more widespread than reported, the American Heart Association said. 

That mirrors the unsettling and tragic trend we’ve seen with cardiac sarcoidosis, which is going undiagnosed in many cases, causing fatalities, and is not as rare as once believed. 

And then there are what have become known as the “long-haulers,” or people who recover but continue feeling poorly. Many of those long-term effects of COVID-19 could serve as a checklist of our own. 

Shortness of breath, cough, fatigue, brain fog, and joint and muscle pain are all common complaints of COVID-19 long haulers. Some of them, like many of us, also now battle small fiber neuropathy, including postural orthostatic tachycardia syndrome.

As many as 8.4 million of the more than 28 million Americans diagnosed with COVID-19 are long-haulers, according to a report by NBC News. I found two encouraging bits of news in the article. 

For starters, more than 80 “post-COVID” clinics across the country are actively trying to help patients, NBC discovered. Secondly, Congress has approved $1.15 billion to study the problem. 

Much like our own lingering sarcoidosis symptoms, the article reported that no “magic medication” has emerged to cure the ailments. But I believe there is now more promise of finding answers. 

Just consider that fewer than 200,000 Americans have sarcoidosis. That makes it a rare disease, by U.S. standards. Now a slew of symptoms that many of us struggle with are being brought before doctors by several million people. And the National Institutes of Health has undertaken a four-year, billion-dollar effort to find out why the symptoms are sticking around.

I hope that brings additional insight and potential treatments for our community. But even if it doesn’t, at least more doctors are listening and trying to find solutions to problems that we have been voicing for so many years.

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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

  • Daily helpings: People have been able to get a free meal at Perfectly Frank, no questions asked, since the pandemic began, USA Today reported. Customers of the Virginia restaurant prepay for meals and leave receipts on a board for anyone in need to use once a day. One posted message states, “If you want more kindness in the world, put it there.”
  • Blossoming view: You don’t have to mill around with 1.5 million others to see the U.S. capital’s Yoshino cherry trees in bloom this year, Thrillist reports. Much of the National Cherry Blossom Festival, which runs through April 11 in Washington, D.C., will be online. A 24/7, real-time bloom cam is coming soon. So, don’t miss peak bloom, which is expected April 2-5!  

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

Cindy avatar

Cindy

I, too, became keenly aware of the similar symptoms of Sasrcoid and Long-haulers as early as last May. I got Covid mid-March of last year of which I never could get confirmed because of a lack of testing. I had all of the symptoms except for the extreme headaches. When the joint pain and aches continued long after I then thought it was my sarcoid flaring up again. I joined a long-hauler group on FaceBook and so many of them were describing symptoms that many of us have been facing for years. I didn't know who to contact, what medical group would be interested in looking into the similarities. Glad there is progress now.

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Maureen butler avatar

Maureen butler

Hi, I'm seventy yrs.of age. I have had sarcoidosis,I was diagnosed at the age of twenty three. It attacked my lungs first. Later it attacked my liver and left,calcification.
I would like to know. Is it safe, to get the vaccine shot? Please let me know. Thank you

Reply
Athena Merritt avatar

Athena Merritt

Hi, it was reported in January, that the Pfizer/BioNTech and Moderna vaccines "are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies.” Here’s a link to the full article https://sarcoidosisnews.com/2021/01/27/covid-19-vaccines-pose-little-risk-to-rare-disease-patients-fda-cdc-officials-say/

That being said, everyone’s health is different. So, I urge you reach out to your medical team and follow their recommendations.

Also, I wrote about vaccines earlier this year and there are some comments from readers that have been vaccinated. Here’s the link: https://sarcoidosisnews.com/2021/01/12/covid-19-vaccine-weighing-risks-benefits/

Hope this helps. Thank you for commenting.

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Citmo avatar

Citmo

I too would like to know the answer to that question.

Reply
Gwendolyn Brown avatar

Gwendolyn Brown

I suffer off and on with nose bleeding due to Sarcoidosis. I just got off a dosage of antibiotics and prednisone. I wonder just like Maureen Butler, will having the shot hurt or help plus Friday, April 02,2021, would waiting a couple of weeks be the best decision.

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Debra avatar

Debra

Thank you for writing this article, Athena. I think they probably could learn a lot from people with Sarcoidosis. Too many similarities (and sufferers) to ignore.

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Athena Merritt avatar

Athena Merritt

So true, Debra! Thank you!

Reply
Susan avatar

Susan

I have sarcoidosis in my lungs, but it’s in remission. I had the two Moderna Couvid-19 vaccine shots with no ill effects except a sore arm. I checked with my sarcoidosis specialist and he said it was fine to get the shot, so I did.

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