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.

Hello, folks. I'm another GCA patient. Regarding the Covid vaccine, I've been under the impression that I shouldn't have it
because my WBC and neutrophils keep crashing, and therefore my immune system is very compromised. I haven't checked with my medical team yet though. Are any of you in this same situation, and if so, have your doctors still okayed your hope to get the vaccine? I did have the regular flu shot in the Fall.
I'm not on Prednisone anymore, after 1 1/2 years, but am now on Actemra injections. They were weekly but because my WBC and neutrophils keep falling, I'm now bi-weekly IF the lab work is ok. Lab work is done weekly, or twice a week if results are falling. It's a real dance!

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@artist01

Hello, folks. I'm another GCA patient. Regarding the Covid vaccine, I've been under the impression that I shouldn't have it
because my WBC and neutrophils keep crashing, and therefore my immune system is very compromised. I haven't checked with my medical team yet though. Are any of you in this same situation, and if so, have your doctors still okayed your hope to get the vaccine? I did have the regular flu shot in the Fall.
I'm not on Prednisone anymore, after 1 1/2 years, but am now on Actemra injections. They were weekly but because my WBC and neutrophils keep falling, I'm now bi-weekly IF the lab work is ok. Lab work is done weekly, or twice a week if results are falling. It's a real dance!

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I have had WBC and neutrophil counts and they have been low for over 15 years. I don’t have GCA, but currently on my 3rd bout of PMR, currently working on reducing prednisone from 5 to 4 milligrams. I have seen 2 hematologists (changed jobs and health care systems so got work-up in both). A cause for low WBC never found, so now just monitor 2 times a year. During this time, I have had yearly flu shots, 2 Shingrix shots, DPT with no problems. I am more scared of Covid than vaccine.

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@virginiaj

I have had WBC and neutrophil counts and they have been low for over 15 years. I don’t have GCA, but currently on my 3rd bout of PMR, currently working on reducing prednisone from 5 to 4 milligrams. I have seen 2 hematologists (changed jobs and health care systems so got work-up in both). A cause for low WBC never found, so now just monitor 2 times a year. During this time, I have had yearly flu shots, 2 Shingrix shots, DPT with no problems. I am more scared of Covid than vaccine.

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Good information. I was diagnosed with PMR in April of 2019. Started out on 60mg of prednisone, quickly down to 40mg, then 20,10,5 and now for 3 months at 2.5 mg. I seem to be symptom free. Just started hydroxychloroquine, 400 mg a day. Feeling great.
Got the senior flu vaccine in October…no problems. Got the first shingrix vaccine in November and am waiting for the second. My big question that even my rheumatologist team has not yet answered: as PMR is an autoimmune disease, and the vaccines are designed to ramp up your immune system, will the COVID vaccine cause severe side effects and a return of the PMR symptoms? I am scheduled for the first Pszyer (sp?) shot tomorrow morning, and a little nervous.

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Personally, I think I would rather deal with PMR pain, restrictions and medications with their side effects, than catch covid. I'm not sure how my body would respond to covid, but I already know how it is reacting to PMR. I'm sticking with the devil I know! As soon as I am able, I will be getting the vaccine for covid. Just my opinion.

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Hello @chris1949 and welcome to Mayo Clinic Connect. I understand you have PMR and have some anxiety about if the COVID vaccine may cause a return of those symptoms. @kimh has replied and shared her thoughts with you.

Will you share an update with us post-vaccination? I am guessing you are already on your way or at your appointment this morning.

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Thank you. I just heard from my doctor's team (he is on vacation). They recommended that I get the COVID vaccine but then stop the prednisone and hydroxychloroquine for 2 weeks. And then again for 2 weeks after the second COVID shot. I guess I will be a guinea pig and suffer (or not) the consequences. I will stay in touch. First shot is scheduled for Thursday 1/7/21.

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@kimh

Personally, I think I would rather deal with PMR pain, restrictions and medications with their side effects, than catch covid. I'm not sure how my body would respond to covid, but I already know how it is reacting to PMR. I'm sticking with the devil I know! As soon as I am able, I will be getting the vaccine for covid. Just my opinion.

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I'm with you, @kimh. I spoke to my rheumatologist yesterday as to whether or not, as an immunosuppressed person, I should risk taking the Covid vaccine. I have multiple serious conditions, including a 2nd blood clot December 21st. There's so much info to say we shouldn't take it and its very confusing and worrisome.
I have GCA and was on Prednisone for one year and then coupled with Actemra since November, 2019. My WCB eventually crashed at 0.9, and neutrophils at 1.2 so was stopped both, as well as Clozapine, immediately. Brutal 6-week withdrawal but ok now. Back on only Actemra every two weeks rather than weekly, as long as my lab results remain steady. I get a weekly lab workup to monitor.
My rheumatologist yesterday decided that getting the vaccine is worth the risk for me. Better the vaccine side effects than getting Covid, she said. She's very knowledgeable on the subject, having been to seminars as well as doing her own research. I trust her implicitly. My G.P. told me I would never survive Covid, and my rheumatologist agrees.
I hope this helps you. Good luck to you with your difficult decision.

P.S. Just to clarify, my rheumatologist said the doctors just don't KNOW at this time how the Covid vaccine will affect immunosuppressed patients because no studies have yet been done on that. In the UK, they've immunized frail, older people but not immunosuppressed people, as such, with few problems. We have to make our individual decisions, with the guidance of our medical teams. I guess we're guinea pigs, but in my case I feel it's worth the risk.
Good luck and best wishes.

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@chris1949

Thank you. I just heard from my doctor's team (he is on vacation). They recommended that I get the COVID vaccine but then stop the prednisone and hydroxychloroquine for 2 weeks. And then again for 2 weeks after the second COVID shot. I guess I will be a guinea pig and suffer (or not) the consequences. I will stay in touch. First shot is scheduled for Thursday 1/7/21.

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Good luck!!!

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@chris1949

Good information. I was diagnosed with PMR in April of 2019. Started out on 60mg of prednisone, quickly down to 40mg, then 20,10,5 and now for 3 months at 2.5 mg. I seem to be symptom free. Just started hydroxychloroquine, 400 mg a day. Feeling great.
Got the senior flu vaccine in October…no problems. Got the first shingrix vaccine in November and am waiting for the second. My big question that even my rheumatologist team has not yet answered: as PMR is an autoimmune disease, and the vaccines are designed to ramp up your immune system, will the COVID vaccine cause severe side effects and a return of the PMR symptoms? I am scheduled for the first Pszyer (sp?) shot tomorrow morning, and a little nervous.

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Best of luck tomorrow. I wonder that myself. My original onset started after a flu shot.

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@artist01

I'm with you, @kimh. I spoke to my rheumatologist yesterday as to whether or not, as an immunosuppressed person, I should risk taking the Covid vaccine. I have multiple serious conditions, including a 2nd blood clot December 21st. There's so much info to say we shouldn't take it and its very confusing and worrisome.
I have GCA and was on Prednisone for one year and then coupled with Actemra since November, 2019. My WCB eventually crashed at 0.9, and neutrophils at 1.2 so was stopped both, as well as Clozapine, immediately. Brutal 6-week withdrawal but ok now. Back on only Actemra every two weeks rather than weekly, as long as my lab results remain steady. I get a weekly lab workup to monitor.
My rheumatologist yesterday decided that getting the vaccine is worth the risk for me. Better the vaccine side effects than getting Covid, she said. She's very knowledgeable on the subject, having been to seminars as well as doing her own research. I trust her implicitly. My G.P. told me I would never survive Covid, and my rheumatologist agrees.
I hope this helps you. Good luck to you with your difficult decision.

P.S. Just to clarify, my rheumatologist said the doctors just don't KNOW at this time how the Covid vaccine will affect immunosuppressed patients because no studies have yet been done on that. In the UK, they've immunized frail, older people but not immunosuppressed people, as such, with few problems. We have to make our individual decisions, with the guidance of our medical teams. I guess we're guinea pigs, but in my case I feel it's worth the risk.
Good luck and best wishes.

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Thank you for sharing this. Wishing you well tomorrow. I too ha e GCA and PMR and have some trepidation about the vaccine, but know that I must take it too. Not offered in my community in my age bracket, so I’m likely several weeks away, if not a few months. Stay well everyone.

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