Is it safe to get the Corona Virus (COVID-19) vaccine with PMR?

Posted by ncgal @ncgal, Nov 19, 2020

Just wondering if anyone has found out if it is okay to get the corona virus vaccine once it comes out. I'm 78, so past the 65+ age for early vaccinations, plus having the autoimmune diagnosis. I don't see my rheumatologist for another two months but guess I'll call him to find out if t comes to that. Just thought I'd see if anyone else has found out. I had no problem with the flu shot.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@johnbishop

Hello @golfbarmie, Thanks for the private message. I thought I would answer it in the discussion on PMR and Corona Virus (COVID-19) vaccine so that you could connect with other members who have similar questions. You mentioned your are searching for answers because you are currently on a low dose of prednisone. For your 1st Moderna vaccine you were on 3mg and had a big flare and jumped up to 7.5. Then came 2nd Moderna, no flare and now you are on 6mg, dropping to 5mg soon. Your question is are you protected from COVID given that you may be immunocompromised. You wanted to know how we can tell and that you are a healthy 75 year old male and feel fine.

Since you have had both Moderna vaccines, if it were me, I personally would feel that I've done all I can to protect myself from COVID and I would feel that I could safely visit with my grandchildren as you mentioned it is important for you to see them. @sueinmn and others may also have some thoughts or information that may be helpful for you to answer your question on being protected from COVID.

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Just sharing this - a close friend is an infectious disease specialist. He's in his late 60s, no autoimmune disorder and not taking an immunosuppressant drugs, like Prednisone. He told me he's not going to eat at any indoor restaurants until the Delta variant calms down. He advised me to eat outdoors in restaurant venues and not have contact with people who have not been vaccinated. Currently, in our state there's an uptick in COVID cases of the unvaccinated, particularly children. We do not know, at this point, if being on prednisone lessens the efficacy of the vaccines, but it may be wise to assume it does. Currently some studies are underway - of specific patient groups with autoimmune disorders on immunosuppressant drugs to see if they develop neutralizing antibodies after 2 doses and if they don’t whether a 3rd booster would help. Not a bad idea to be cautious and consider how you can meet with your grandchildren safely, particularly if they have not been vaccinated. All the best.

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@tsc

Just sharing this - a close friend is an infectious disease specialist. He's in his late 60s, no autoimmune disorder and not taking an immunosuppressant drugs, like Prednisone. He told me he's not going to eat at any indoor restaurants until the Delta variant calms down. He advised me to eat outdoors in restaurant venues and not have contact with people who have not been vaccinated. Currently, in our state there's an uptick in COVID cases of the unvaccinated, particularly children. We do not know, at this point, if being on prednisone lessens the efficacy of the vaccines, but it may be wise to assume it does. Currently some studies are underway - of specific patient groups with autoimmune disorders on immunosuppressant drugs to see if they develop neutralizing antibodies after 2 doses and if they don’t whether a 3rd booster would help. Not a bad idea to be cautious and consider how you can meet with your grandchildren safely, particularly if they have not been vaccinated. All the best.

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We are all vaccinated except our grandkids, but we have mainly limited our eating out to patios - the only exceptions are 2 neighborhood places with well-distanced tables and careful staff, which we visit during off-peak times.
It can be difficult to find a comfortable patio, though with high temps, high humidity, and poor air quality.
Sue

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@sueinmn

We are all vaccinated except our grandkids, but we have mainly limited our eating out to patios - the only exceptions are 2 neighborhood places with well-distanced tables and careful staff, which we visit during off-peak times.
It can be difficult to find a comfortable patio, though with high temps, high humidity, and poor air quality.
Sue

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Outdoor venues are in short supply here as well.

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@ste44

I was on 10mg of prednisone when I hd my Pfizer shots in March. I couple of weeks ago, I had an antibodies test, which indicated few antibodies. Now, I need a third shot and am waiting for the third shot to be approved. My prednisone is down to 8mg.

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this is so interesting to me. when I asked my rheumatologist about getting an antibody test, she said there isn't one that is really specific to COVID right now. Yet I'm seeing your post and others who are getting this test. Can you tell me more about the precise test you are getting? I've yet to hear about getting a third shot, but fully see how it may be needed. I took my Pfizer vaccines when I was at 9 mg as I recall. I'm very slowly tapering and just at 7 mg.

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@karinaph

this is so interesting to me. when I asked my rheumatologist about getting an antibody test, she said there isn't one that is really specific to COVID right now. Yet I'm seeing your post and others who are getting this test. Can you tell me more about the precise test you are getting? I've yet to hear about getting a third shot, but fully see how it may be needed. I took my Pfizer vaccines when I was at 9 mg as I recall. I'm very slowly tapering and just at 7 mg.

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so, being curious, I googled "covid antibody testing". came to the FDA site. Lots there, but here's an excerpt from the FDA:

"Recommendations for Health Care Providers

At this time, do not interpret the results of qualitative, semi-quantitative, or quantitative SARS-CoV-2 antibody tests as an indication of a specific level of immunity or protection from SARS-CoV-2 infection after the person has received a COVID-19 vaccination. While a positive antibody test can indicate an immune response has occurred (seroconversion), and failure to detect such a response may suggest a lack of immune response, more research is needed. Currently authorized SARS-CoV-2 antibody tests are not validated to evaluate specific immunity or protection from SARS-CoV-2 infection. SARS-CoV-2 antibody tests should be ordered only by health care providers who are familiar with the use and limitations of the test. For more information about antibody tests for SARS-CoV-2, see Serology/Antibody Tests: FAQs on Testing for SARS-CoV-2.
Be aware that vaccines trigger antibodies to specific viral protein targets. For example, currently authorized COVID-19 mRNA vaccines induce antibodies to the spike protein and not to nucleocapsid proteins that are likely detected only after natural infections. Therefore, COVID-19 vaccinated people who have not had previous natural infection will receive a negative antibody test result if the antibody test does not detect the antibodies induced by the COVID-19 vaccine. If you are considering antibody testing in vaccinated individuals, follow the Centers for Disease Control and Prevention’s guidelines for antibody testing. For more information about antibody test performance visit EUA Authorized Serology Test Performance."

So, based on this above statement, it does not appear that we (as patients/lay persons) can make a linear relationship between antibody test results and our protection from the virus.
Please enlighten me if you have more detailed and demonstrated data that would support getting this test. We all would love for it to be this simple but I'm not sure it is. So, we may be protected but the negative results may be making us think we are not protected.

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@karinaph

so, being curious, I googled "covid antibody testing". came to the FDA site. Lots there, but here's an excerpt from the FDA:

"Recommendations for Health Care Providers

At this time, do not interpret the results of qualitative, semi-quantitative, or quantitative SARS-CoV-2 antibody tests as an indication of a specific level of immunity or protection from SARS-CoV-2 infection after the person has received a COVID-19 vaccination. While a positive antibody test can indicate an immune response has occurred (seroconversion), and failure to detect such a response may suggest a lack of immune response, more research is needed. Currently authorized SARS-CoV-2 antibody tests are not validated to evaluate specific immunity or protection from SARS-CoV-2 infection. SARS-CoV-2 antibody tests should be ordered only by health care providers who are familiar with the use and limitations of the test. For more information about antibody tests for SARS-CoV-2, see Serology/Antibody Tests: FAQs on Testing for SARS-CoV-2.
Be aware that vaccines trigger antibodies to specific viral protein targets. For example, currently authorized COVID-19 mRNA vaccines induce antibodies to the spike protein and not to nucleocapsid proteins that are likely detected only after natural infections. Therefore, COVID-19 vaccinated people who have not had previous natural infection will receive a negative antibody test result if the antibody test does not detect the antibodies induced by the COVID-19 vaccine. If you are considering antibody testing in vaccinated individuals, follow the Centers for Disease Control and Prevention’s guidelines for antibody testing. For more information about antibody test performance visit EUA Authorized Serology Test Performance."

So, based on this above statement, it does not appear that we (as patients/lay persons) can make a linear relationship between antibody test results and our protection from the virus.
Please enlighten me if you have more detailed and demonstrated data that would support getting this test. We all would love for it to be this simple but I'm not sure it is. So, we may be protected but the negative results may be making us think we are not protected.

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Thanks for the information. I made an assumption that any doc who would order such a test would already have read the information and been aware of the need to test for the correct antibody. I should know better. By the way Mayo transplant doctors have checked this for some of our members.
Sue

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@sueinmn

Thanks for the information. I made an assumption that any doc who would order such a test would already have read the information and been aware of the need to test for the correct antibody. I should know better. By the way Mayo transplant doctors have checked this for some of our members.
Sue

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Two of my Drs recommended the test. They do read and keep up with the info.

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After being fully vaccinated I developed IBS, pharyngitis, and PRM within several months so I am a little suspicious that the vaccine didn't play a role in amping up my immune system too much to cause more autoimmunity issues.
I don't really think anyone really knows the answer - feels like we are guinea pigs - but I would love to know what other people with PMR and autoimmunity conditions are doing and think about this. I have a range of docs and all traditional say to get them, and those who are on the edge of traditional leaning toward functional, etc say absolutely not.
Thank you! for your thoughts. Kathy

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@kspowell

After being fully vaccinated I developed IBS, pharyngitis, and PRM within several months so I am a little suspicious that the vaccine didn't play a role in amping up my immune system too much to cause more autoimmunity issues.
I don't really think anyone really knows the answer - feels like we are guinea pigs - but I would love to know what other people with PMR and autoimmunity conditions are doing and think about this. I have a range of docs and all traditional say to get them, and those who are on the edge of traditional leaning toward functional, etc say absolutely not.
Thank you! for your thoughts. Kathy

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I am 76. Newly PMR diagnosed 2 weeks ago or so. Sudden onset (March 13) of belly distress AND pain in back muscles that evolved to pains in shoulders, neck, trapezius muscles, wrists, elbows, hips when lying on them; inability to underess with arms overhead, reach for things in fridge or cabinet, or get off the toilet without using hands to lift up...causing more pain in wrists! I got the 2nd MODERNA vax on Feb 26,2021. So 15 days later this sudden onset of symptoms. I was sick for 3 days with the 2nd dose...fever, profound fatigue. SO, of course we don't know...if the vax generated this or not. But, it is, to me suspicious. Not provable. Now on 10 mg prednisone to start. Helping about 80% and I can reach, turn over without groaining, get up from sitting position without assistance. Muscles for 12-14 hours good. After that not as good. Will try dividing the dose AM/PM to see. Sharon

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@kspowell

After being fully vaccinated I developed IBS, pharyngitis, and PRM within several months so I am a little suspicious that the vaccine didn't play a role in amping up my immune system too much to cause more autoimmunity issues.
I don't really think anyone really knows the answer - feels like we are guinea pigs - but I would love to know what other people with PMR and autoimmunity conditions are doing and think about this. I have a range of docs and all traditional say to get them, and those who are on the edge of traditional leaning toward functional, etc say absolutely not.
Thank you! for your thoughts. Kathy

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My original entry to this Mayo group was due to my diagnosis of PMR by my primary physician about seven weeks after the J&J, although symptoms started about four weeks after the shot. Suspicion, since I was always practicing
healthy lifestyle habits. On prednisone, which helps alleviate pain but have recently lost weight - muscle mass, strength; subcutaneous fat in arms and legs ( bleed easily); vision changes, memory challenges. Is it PMR or the Covid shot or both? Laurel (74)

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