Weighing the Risks and Benefits of COVID-19 Vaccines
I never liked group projects in school. Whenever one was announced, I’d groan and silently hope for the best. But the scenario always played out the same: slackers dumping the work on everyone else.
I wanted to believe the pandemic would change behaviors. With the stakes so high, maybe everyone would do their part. But 10 months in, this is our ugly reality: 49 states across America have unchecked community spread of COVID-19.
So, I’m no longer taking a wait-and-see approach with vaccines like I originally had planned. I’ll be getting vaccinated as soon as I’m given the opportunity. Because, much like those teams in the past, I feel a responsibility to do all I can so that everyone can succeed.
The speed at which vaccines were developed has filled me with gratitude, respect, and pride for those involved. But inklings of concern still tug at me.
After all, I have sarcoidosis, a disease that causes the immune system to go haywire for undetermined reasons. And the long-term side effects of these shots, if there are any, are still unknown. So is their safety and efficacy for immunocompromised and immunosuppressed populations, the Centers for Disease Control and Prevention reported last month.
So, I can relate to those unwilling to roll up their sleeves. But trust is building, with nearly 60% of Americans now on board with getting vaccinated against COVID-19, according to USA Today. I’m now one of them, because I believe the benefits outweigh the risks.
I’m currently not on prednisone, which suppresses the immune system. With the unpredictability of my health, another course could become necessary in the future, which would cancel the advantage I currently have and add to my worries.
Guarding against infection likely will become even dicier in the future. A variant strain of COVID-19 that seems to be more contagious has already made it to our shores. Getting individuals to forgo risky behaviors has been a problem throughout this crisis. I expect compliance to plummet drastically once people are emboldened with shots to protect themselves.
Acting sooner rather than later will also open up more job opportunities for me. Most importantly, I believe it will help stop the spread of the novel coronavirus and save lives.
I won’t be going into the process blindly. I plan to talk to my medical team and get my annual bloodwork done first. I’ll also continue monitoring for emerging issues and reaching out to those with firsthand experience.
What I’ve been hearing so far is encouraging. My sister, Antonia, didn’t have any side effects after receiving the vaccine, and she didn’t even feel any pain when it was administered. Others reported feeling under the weather for a day or two.
Yale Health has posted a helpful guide to who should and should not get the COVID-19 vaccine. Also, a fact sheet for Moderna’s COVID-19 vaccine can be read here, and a Pfizer-BioNTech COVID-19 vaccine fact sheet is available here.
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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.
- That’s what she said: A pop-up bar and restaurant inspired by the television show “The Office” arrives in Houston on Jan. 15. It will feature themed drinks, trivia, office karaoke, and of course, Dundie Awards. For info and tickets, go to dundermupplen.com.
- Logging into nature: If winter weather is keeping you from nature, check out these two soothing replacements: WILDwatch Live provides twice-daily live streams of three-hour safaris in South Africa. And you can ask the guides questions on YouTube and Twitter. Unify Cosmos offers soothing sound clips from 50 locations around the world. All it takes is the twist of a virtual dial to choose your escape. The ability to listen to waves in the Dominican Republic, raindrops falling in Scotland, or the sounds of bustling Venice from a gondola ride is just a click away.
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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.
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Comments
Maria Tsvetkova
My mum is diagnosed with Lung Sarcoidosis (an autoimmune disease) which has been inactive (in remission) for over 10 years. She is considered a key worker (a university professor), so she has been offered the Pfizer Coronavirus vaccine but we are not certain if it is safe to receive it given her condition. Could you please give us any insight on whether the vaccine is safe for her? Have there been people with her disease who have already received the vaccine?
Athena Merritt
Hi, I don’t know anyone with sarcoidosis that has received it yet. I’ll be checking with my physicians before I go, I encourage your mother to do the same to address her concerns. I‘m sorry I don’t have the answers you’re seeking, but will post more info in the future if I get it.
Also, here’s a link on the topic from the Foundation for Sarcoidosis Research: https://www.stopsarcoidosis.org/covid-vaccine/
Readers, if you have had the vaccine please leave a comment about your experience!
Jared Markham
I have received my 2nd vaccine shot today 2/16/2021. I have stage 4 pulmonary Sarcoidosis so fae so good but will update Tomorrow
Athena Merritt
Great to hear! Thank you for responding to the post!
Michele A Staton
Hello and thank you, my husband has sarcoidosis and he has been having flare up lately but was concerned about getting the vaccine. I got both but I don't have sarcoidosis is it safe
Athena Merritt
A webinar hosted by the National Organization for Rare Disorders reported the Pfizer and 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 http://sarcoidosisnews.com/2021/01/27/covid-19-vaccines-pose-little-risk-to-rare-disease-patients-fda-cdc-officials-say/
Because individual health varies widely, I highly recommend consulting with your physician(s) about your concerns prior to getting the vaccine.
Kim
How did you do after your second vaccine?
Bobbi Bishop
Athena, I have had sarcoidosis for 12 years and it has mostly been dormant. I have it in my lymph nodes in my chest and I have had nerve damage in my ear from it. Many years ago, I had a subcutaneous granuloma grow into my wrist joint and it had to be removed because it was impinging on my ability to use my hand.
I had my first COVID vaccine in January and from that vaccine, a 7-inch long and very thick granuloma has grown subcutaneously in my forearm from the wrist almost to the elbow. The vaccine sent me into an outrageous flare and I'm also having trouble walking because of the pain in my joints. I had the nurse inject the second vaccine into the other arm. I now have a subcutaneous granuloma growing on that forearm.
I reported my reaction to the organization named on the back of the vaccine record card and to Moderna. No one has contacted me back. I'm waiting to see the doctor on March 5th. Until then, my sarcoidosis is going to continue to rage (and allow the granulomas grow bigger).
I receive the sarcoidosis news e-mails so I thought maybe you might want to let sarcoidosis patients know of my experience. Personally, I do not recommend it for anyone who has had granulomas in the past or any skin reaction to sarcoidosis. This population needs to know about my reaction. I wish someone had told me!!! I wouldn't have done it. Now I'm going to have to have surgery and probably go on steroids and methotrexate, which I've never had to use, ever.
People need to know.
Athena Merritt
Bobbi, thank you for sharing your experience with the vaccine. It’s shocking to hear. Please keep us posted. I hope you recover soon.
Readers, please continue to leave comments if you have had the vaccine.
John
Bobbi,
I hope you got your condition under control and back to being healthy
Athena Merritt
UPDATE: The two approved COVID-19 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.” The bigger question is whether they will be effective among this population. Here’s a link to the full article: https://alsnewstoday.com/news-posts/2021/01/20/covid-19-vaccines-pose-little-risk-to-rare-disease-patients-fda-cdc-officials-say/
Margaret Ogier
Hello I am Margaret and
I have sarcoidosis.
I had the 1st Covid vaccine on 7th January 2021. It was pfizer-Biotech. I had no noticeable signs after it.
I had a scan in 1985
And a very small round growth was seen in my right lung. I was healthy and asymptomatic.
I had an X-Ray in 2002
and several scans. I diagnosed my own condition by telling my Doctor.
“I think I have sarcoidosis as I had a bump on my arm”
He then walked me around to a Surgeon in his clinic. He looked at my arm and said “be here tomorrow morning for a biopsy”
I then got the results a few days later.
I had sarcoidosis. One of my many cousins also had sarcoidosis.
2017 I had my Right upper lung lobe removed for a large cyst I asked about the sarcoid granuloma.
5 weeks later I was called to the Hospital and told I had a large cancer with the cyst growing into it.
11cm for the cancer and 8x8.5cm for the cyst. The granuloma was thought to have been the primary tumour. However since the cancer did not show on the cancer scans but the cyst did show. How would the granuloma show on an X-Ray.
My lung was crushed but encapsulated which meant the cancer and cyst
Was intact and the lymph nodes had NO Cancer but there was inflammation.
I have been very lucky. I had no treatment due to the fact I no longer had the cancer and cyst which was growing for decades.
They told me the cancer was so rare it was unknown. There was no treatment for it but I was cancer free.
I have never ever smoked nor ever tried it.
I have inflammation and calcium in my body.
The only treatments I use
are thyroxine for
hypothyroid and eye drops for glaucoma.
I am now retired from 48 years of work. Over forty years in a career which was never dull and always busy.
I am still alive and following the safety rules of the pandemic. I am mobile, and don’t like staying in all the time.
I haven’t been in a shop for months now.
We are still in Tier 4 and new strains of virus now joined in.
I have lived with sarcoidosis for a long time
and never bothered with it and never used medication because I can’t. Steroids and anti inflammatory drugs are a danger to me. I reacted to them years ago.
Athena Merritt
Margaret, thank you for sharing your experience with the vaccine and with sarcoidosis. It’s uplifting to hear the struggles you have (and continue to) overcome. It speaks to your strength. Hopefully vaccines will return normalcy to our lives soon.
Tammy Pope
Thank you so much for this information! You sound amazingly brave. I want to get the vaccine. I have sarcoidosis of the lungs and I will be checked soon to see if I have ocular sarcoidosis. I’m scared but I miss my daughter and want to visit her, so your experience has given me hope! Thank you.
Athena Merritt
I understand your fear. I just decided that I rather take my chances with the vaccine than with Covid. So far, everything I'm hearing about it from others is good. Please post about your experience if you get it. Thank you for commenting! Stay safe!
Tammy Pope
Will do! I agree and have appointment to get cleared by my doctor. I may have kidney cancer again, waiting for the final diagnosis, but this just pushes me even more to want the vaccine. Thanks and I will update as soon as I can.
Athena Merritt
My prayers are with you. It’s good to hear that you are staying on top of all aspects of your health, despite the pandemic. You are quite strong, and brave yourself. Stay safe.
Walter Katz
Thank you for information
Michelle
All, I had my second Moderna vaccine yesterday, and as with the first I feel like garbage - mild fever, body aches, soreness in my opposite shoulder joint plus the vaccine site. My doctors all told me to expect this, as did the tech who administered the shot. He told me to take pure aspirin or Tylenol, not ibuprophin.
My sarcoidosis has been in remission since we started diagnosis, but I still have skin reactions(vitiligo, bumps). I’m a little alarmed at the gentleman who had the severe reaction, but this disease is a weird one. I decided seeing my family and friends is too important, plus I know if I contracted the disease it would be much worse (the one constant for me is I cannot fight off infections without heavy-duty antibiotics or steroids). I should be back to normal in a day or two.
Athena Merritt
Thank you for sharing!
Michael
Thank you to all of you I get my first tomorrow the 18th, was a lot worried about it but after reading all comments it’s gave me hope. Thank you
Caleb Shah
Hi, I am from singapore.
I have Dinos with sarcoidosis
In multiple organs heart, longse,
Skin, muscle.
irregular heartbeat
Multiple times of Cardiac issues
Which closest my heart to functions to 30%.
I am not having CRTD Implanted
And high medical for past 2 year.
To bring down my immune system. And stay home.
While I am going through this treatment. There comes COVID-19 😔,
is it safe to take the vaccine?
Athena Merritt
A webinar hosted by the National Organization for Rare Disorders reported the Pfizer and 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 http://sarcoidosisnews.com/2021/01/27/covid-19-vaccines-pose-little-risk-to-rare-disease-patients-fda-cdc-officials-say/
Because individual health varies widely, I highly recommend consulting with your physician(s) about your concerns prior to getting the vaccine.
Caleb Shah
Can we have a telegram group,
Jeff
Hi. I am a 48 year old male will Sarcoidosis (dormant). I received my second Pfizer shot on 5/6/2021. So far all is well. I like others here was concerned about opening up the autoimmune can of worms with the vaccine. My thought was that I would be more likely to open up that can if I got the actual virus. In the end is was an easy decision for me to get the vaccine. Good luck to all.
James Bernard McCann
Hello Everyone,
I am 38 years old and was diagnosed with sarcoidosis (Lofgrens syndrome) when I was 35. I have 2 small granuloma on the lymph nodes in my left lung. I had my second Moderna vaccine yesterday. The first vaccine made my arm sore and my joints achy, but nothing unexpected. The second vaccine left me with a slight fever, chills, aching in most of my joints. It does feel a bit like a flare-up, but it has been about 26 hours since the vaccine and I seem to be tuning the corner. Wishing you all the best in health.
Bill Knupp
I was diagnosed with lung sarcoidosis 33 years ago. Some 10 years later had to go on a regiment of prednisone and placquenil for a some 15 years. Apparently in submission since I had Covid back in July 2020 with reasonably mild systems an no lung or breathing issues. I am skeptical about taking the vaccine not wanting to reactivate the sarcoidosis since apparently no trials were conducted with autoimmune diseases. It would be nice to know some accurate statistics about effects from the vaccine for those of us with the disease. I say accurate because the majority of the medical community are blindly promoting the vaccine when it has not been approved for use only emergency use. Please give us accurate information so we can make our own decision. Having the Covid for a few days is better than a long term sarcoidosis flair up.
Kim Parasiliti
I was diagnosed with sarcoid in 1983 when I was 28 and just after I had my third child. I had a bronchoscope to confirm the diagnosis. I was told I had the Scandinavian version - affecting my other organs and not my lungs. I was put on 60 mg of prednisone every day for over a year. It was years before I started feeling better.
I got both 1st and 2nd shots in February and March. I’m experiencing many digestive issues and dizziness since receiving the shots. My ankle joints hurt and remind me of when my sarcoid was active back in the day. Otherwise I’m doing good.
Kimetrica Carter
Thank you for sharing that I also have sarcoidosis in my lungs (and I’ve also had two pulmonary embolism‘s one in 2012 and the other in 2015 I now take Xarelto for the rest of my life) but I don’t know which stage, it also affects my skin I have very severe skin rashes that comes on my feet face and hands and all over my back so thank you for the information I was considering the shot vaccine until I read this I want to continue to do my research but until then no vaccine for me
Riggs
I was completely healthy , no health issues at all. Decided to get vaccinated and Had moderna second shot 4months ago, after that got sarcoidosis and ended up in miserable state, every day since I’m having breathing and sleeping difficulties and when it flares up which is occasionally I’m literally choking to death. Ended up many times in IR, treated with steroids but helps only temporary. So far even doctors don’t know what to do. My advice is think really hard before you roll up your sleeve to get vaccinated ! I wish I learned from other people mistakes. I hope someone will learn from mine. Good luck to all ✌️
Jimbo
Hi i am 38 years old and had sacrcoidosis of the lungs diagnosed 6 years ago, was inflamed for 2 years on prednisolone 40mg per day, then had a bad skin reaction, and given medication by a dermatologist which cleared. The sarcoid has been dormant ever since but now have alot of allergies to foods, on a gluten free diet which stops wheezing.
I contracted covid over six months ago, very minor symptoms fever for a few days, energy loss. Then was back to normal within a week. I live in Sweden, where there is no mask wearing and life has been pretty normal throughout the whole covid situation, bar a few curfews which are now all lifted.
Victoria
My mom is in her 70’s and has had sarcoidosis for 30 years. She is in stage 3 and has had both Pfizer shots ending in March of this year. About 2 months ago she said her coughing has gotten worse and almost unbearable. Her doctor has added inhalers and different meds to try to combat it, but I feel the shots have aggravated her condition since she had been dormant for a long while before the shots. I am no doctor, but I know the shots trigger immune response so I dont know if she will feel better or not any time soon.
teresa boone
I have been in remission since 90"s for Sarcoidosis, I am fearful of taking the Vaccine because of the possible flair ups that could occur. I am fearful of the covid and flare ups. I stopped telling people on my job that I am not vaccinated because a lot of people do not understand or even know about Sarcoidosis. My job has a new standard now as of October 18th to be fully vaccinated or do weekly testing, I know eventually it probably will be to get vaccinated or no job. one minute I say I will get vaccinated and the next I get paranoid about the vaccination. I believe in my work unit I am the only unvaccinated person. I just do not know what to do because there are no sure answers of how it will effect me and I have to work to pay my bills. I read positive outcomes from sarcoidosis patents who have been vaccinated and I say okay I will do it and then I read about not so good outcomes of Sarcoidosis patents who have been vaccinated and I change my mind about getting vaccinated. sometimes I feel like I am all alone with this matter.
Julie Killingworth
Hi Athena, thank you for your insight since not many who are not are suppressants are sharing their views. I was diagnosed with Sarcoidosis in 2009 but the disease has been active in me since 1993. I just assumed I had a had a higher likelihood for strange and unusual medical events until a level 5 emergency lung infiltration (ARDS). My lungs filled up so fast the medical system had to acknowledge I had a very serious disease. I decided not to take prednisone after a horrific experience. My disease is progressive but at least it’s a familiar suffering rather than the suffering of steroids which is unbearable. I called the CDC (the agency doesn’t even list Sarcoidosis in their Disease and Conditions Index) NIH Heart Lung and Blood, and the FDA Biological research seeking answers regarding the vaccination effect on hyperactive immune system stuck on stupid and they have no answer but their standard talking points. I do read everything published regarding Sarcoid, the publications lately are very forthcoming. Dr. Judson and Dr. Culver are the dynamic duo. My Eosinophils are always elevated, my lymphnodes are chronically enlarged, liver enzymes are consistently high and I have ILD. I just had corrective surgery that has a 95.9% success rate backfire. Sarcoidosis has decided to be the guest in my body that will not leave. With all the bizarre events that have happened to me I’m more fearful of vaccination associated enhance disorder more than COVID. Once that vaccination is administered it cannot be undone. I think I feel a little bit more comfortable if the CDC would at least acknowledge Sarcoidosis exists before telling us they determine is medical safe for us. I may have had COVID but it’s hard since I react the same to every pathogen. I will not get vaccinated and continue to live in isolation and wear a mask the few times a month I encounter other humans until this virus is eradicated.