1. < Polymyalgia Rheumatica (PMR)

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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2021
In reply to @kspowell "After being fully vaccinated I developed IBS, pharyngitis, and PRM within several months so I am..." + (show)
@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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Hi Kathy @kspowell, You will notice that we merged your discussion with an existing discussion on the same topic - PMR and Corona Virus (COVID-19), so that you could meet other members with similar questions and thoughts. I have PMR but it's thankfully in remission right now. I also have small fiber PN, osteopenia, sleep apnea and lymphedema to name a few that I know about 🙂 I've had both Pfizer vaccines and the Shingrix vaccine and fortunately only had minor side effects that most people are reporting. I regularly got the flu vaccine but held off for a long time until I decided to get the Shingrix shot. Too many folks around me were getting shingles and I definitely did not want the pain that comes with it so I decided it was time.

My thoughts on autoimmune conditions and the COVID vaccine is that the benefits outweigh the risks for me which is why I got the shot. Things in our control that we can do as patients when you have autoimmune conditions is to learn as much as you can about the condition and any lifestyle changes you can make to help reduce the symptoms. After my second round with PMR, I decided I need to eat better and exercise more. I also needed to focus on eating more foods that are anti-inflammatory to hopefully keep the PMR in remission. Here's some information you might find helpful if you haven't already seen it - Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683

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debbieker | @debbieker | Sep 13, 2021
In reply to @marymv "Hello, My Dr. & I are pretty certain my strong immune response caused it. Never had..." + (show)
@marymv

Hello, My Dr. & I are pretty certain my strong immune response caused it. Never had a problem before the fever after the 2nd Pfizer Vac. Lived with pain & stiffness for 3 months. Prednisone helping 80% at 20mg. One thing I can’t get out of my head is that my Mother developed Gullain Barre after getting a flu in 1963. Paralyzed & trached for a cpl months. May be a genetic link?

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I had a yearly checkup with my family doctor this morning and asked him about having the vaccine. He highly advised not to have it as there have not been enough trials with Guillain-Barre. If you had a very light case of GBS it's probably okay however I had a serious case.

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1 reply
rebalancemassage | @rebalancemassage | Oct 3, 2021
In reply to @karinaph "so, being curious, I googled "covid antibody testing". came to the FDA site. Lots there, but..." + (show)
@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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I've been tested for antibodies. I have them, both T and B. I have NOT had any vaccine. I have been in close contact with at least 3 people that I know of who tested positive for covid. I have not gotten it again including the delta. New studies show that natural immunity lasts at least 1 year.

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taml | @taml | Feb 1, 2022
In reply to @debbieker "I had a yearly checkup with my family doctor this morning and asked him about having..." + (show)
@debbieker

I had a yearly checkup with my family doctor this morning and asked him about having the vaccine. He highly advised not to have it as there have not been enough trials with Guillain-Barre. If you had a very light case of GBS it's probably okay however I had a serious case.

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Hi. Severe back pains for months since Moderna booster ( brother with same) and neither any back problems before.
Question - Is there such a thing as a light case of GBS. Trying to get tested for Myelitis before more damage is done, but I guess they don't test for this unless some paralysis? What are symptoms of a light case of GBS?
thank you for your input

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abbeyc | @abbeyc | Feb 6, 2022

I asked my Rheumatologist this week about getting the Booster and he emphatically says yes to get it. I am reluctant as I am concerned COVID and flu vaccines a are what caused this to begin with.

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abbeyc | @abbeyc | Feb 6, 2022
In reply to @microbe1943 "I am 76. Newly PMR diagnosed 2 weeks ago or so. Sudden onset (March 13) of..." + (show)
@microbe1943

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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I agree with you vaccine suspicions. My meds were wearing off too before 24 hours. I asked about splitting dosage and my Rheumatologist says definitely not to do that as there will be worse side effects from Prednisone that way. Talk to your doctor first before doing that or anything on your own.

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dam67 | @dam67 | Oct 8, 2022

My husband has just been diagnosed with PMR. His symptoms have built over the last three weeks to the point that he can barely move. He is 58 and normally very active. These symptoms started after he recovered from Covid three weeks ago. It was the first time he had Covid. He has previously had the Astra zenika And then the Pfizer booster back in April 2022. He has just been put onto Prednisone 20mg and is supposed to be having his combined Flu / Covid next saturday. Im not sure he should have it yet after reading many of the experiences that many of you have had. Worried it will hinder his recovery at this stage.
This is a new world for us as have no experience with this disorder.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 8, 2022
In reply to @dam67 "My husband has just been diagnosed with PMR. His symptoms have built over the last three..." + (show)
@dam67

My husband has just been diagnosed with PMR. His symptoms have built over the last three weeks to the point that he can barely move. He is 58 and normally very active. These symptoms started after he recovered from Covid three weeks ago. It was the first time he had Covid. He has previously had the Astra zenika And then the Pfizer booster back in April 2022. He has just been put onto Prednisone 20mg and is supposed to be having his combined Flu / Covid next saturday. Im not sure he should have it yet after reading many of the experiences that many of you have had. Worried it will hinder his recovery at this stage.
This is a new world for us as have no experience with this disorder.

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Welcome @dam67, Sorry to hear your husband has been diagnosed with PMR. I've had 2 occurrences of PMR but it is currently in remission. I've had both Pfizer vaccines and the booster without making my PMR flare up again. I would talk with his rheumatologist or doctor to see if there are any other considerations. It is a lot to worry when you read a lot of negative experiences and no positive ones. People with PMR who've had the vaccine and no bad side effects don't usually post about it. I'm not a medical professional so it's just my opinion.

PMR is a new world for you when you first are diagnosed. There are definitely things you can do to help with the diagnosis. Here are just a few of the PMR discussions you might find helpful for learning more about PMR:

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- PMR Diet: Foods to eat and avoid:
https://connect.mayoclinic.org/discussion/diet-and-pmr/
Here is an article that you may find helpful. 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Are you able to discuss your concerns with your husbands rheumatologist or doctor?

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1 reply
sharonanng | @sharonanng | Oct 8, 2022

Good point re folks having the vaccine with no bad side effect typically not posting.

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dam67 | @dam67 | Oct 8, 2022
In reply to @johnbishop "Welcome @dam67, Sorry to hear your husband has been diagnosed with PMR. I've had 2 occurrences..." + (show)
@johnbishop

Welcome @dam67, Sorry to hear your husband has been diagnosed with PMR. I've had 2 occurrences of PMR but it is currently in remission. I've had both Pfizer vaccines and the booster without making my PMR flare up again. I would talk with his rheumatologist or doctor to see if there are any other considerations. It is a lot to worry when you read a lot of negative experiences and no positive ones. People with PMR who've had the vaccine and no bad side effects don't usually post about it. I'm not a medical professional so it's just my opinion.

PMR is a new world for you when you first are diagnosed. There are definitely things you can do to help with the diagnosis. Here are just a few of the PMR discussions you might find helpful for learning more about PMR:

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- PMR Diet: Foods to eat and avoid:
https://connect.mayoclinic.org/discussion/diet-and-pmr/
Here is an article that you may find helpful. 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Are you able to discuss your concerns with your husbands rheumatologist or doctor?

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Thank you John for the links. I’ll have a look at them. He’s only just yesterday been told he has PMR. So very much getting his head around it. He has a very active job so this is very worrisome for him. Just started steroids yesterday and already his gums are bleeding.
He has further blood tests on Monday the back to doctor Friday where he will hopefully get a referral to a rheumatologist.
I’m hoping once he is in a better place with the pain we can seek out some alternative therapies to reduce further symptoms. Lots of research and learning to be done.

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