1. < Polymyalgia Rheumatica (PMR)

Need to decide to get a Covid Shot while I have PMR.

Posted by johnhester @johnhester, Jul 8 10:28am

I am conflicted on when or if to get a Covid shot. I see from our group than some have had a very bad reaction withing 2 weeks of getting the Covid shot. If anyone here has had a Covid shot while having PMR, I would love to hear from you. Most comments I read are from people who had a bad reaction. I wish there were statistics for Covid shots and PMR. The CDS says to get the shot anyway because if you get Covid and have not had the vaccine you may have a very bad outcome.
I am 88 years old and in fairly good health otherwise. I am doing fine with my tapering. I am now at 8 mg prednisone, down from 15 mg in 4 months.
So there is my delemma. Any suggestion or advice would be greatly appreciated.

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

kerriihart | @kerriihart | Oct 27 4:52pm
In reply to @barracudacool "I’ve had PMR coming up on two years now. I have had Covid three times. Long..." + (show)
@barracudacool

I’ve had PMR coming up on two years now. I have had Covid three times. Long Covid combined with a few other things resulted in blood clots that almost killed me. Should have. Saddle pulmonary embolism. I am grateful I am not dead. 1st round of Covid left behind fatigue so bad I could hardly keep my eyes open for months. BEFORE PMR! This is a personal decision but my doctor has told me repeatedy I can not afford to get Covid again. It leaves something behind every time. For a lot of people. That’s why when someone says oh it’s just like the flu or a cold I almost jump out of my skin. No it’s not. It’s insidious. Hard choice but I’m getting the Covid vaccine. Last time only a few chills and a bad headache for the day.

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The new CDC guidelines for people with PMR or auto immune disease is to NOT get the Covid vaccine. This per my Rheumatologist. Three years ago I took the J & J vaccine, it put me in bed with writhing pain for six weeks while triggering a PMR major relapse. Today Im in a wheelchair unable to walk more than 25' or stand more than 5 minutes. Unfortunately, during the time of the new vaccine, the CDC took the J & J off of the market for 30 days for just this reason. Then, they put it back on the market because not enough of us were relapsing. It's been awful. Good luck!

REPLY
2 replies
megz | @megz | Oct 28 6:53am
In reply to @kerriihart "The new CDC guidelines for people with PMR or auto immune disease is to NOT get..." + (show)
@kerriihart

The new CDC guidelines for people with PMR or auto immune disease is to NOT get the Covid vaccine. This per my Rheumatologist. Three years ago I took the J & J vaccine, it put me in bed with writhing pain for six weeks while triggering a PMR major relapse. Today Im in a wheelchair unable to walk more than 25' or stand more than 5 minutes. Unfortunately, during the time of the new vaccine, the CDC took the J & J off of the market for 30 days for just this reason. Then, they put it back on the market because not enough of us were relapsing. It's been awful. Good luck!

Jump to this post

Interesting that the new CDC guidelines have changed to take account of possible bad reactions to the vaccine. In Australia the stated official position is still that overall the risks of not getting the vaccine outweigh the risks of having it, even if you have an auto-immune condition. Then they overstate the facts and say it is "safe and effective", implying that's the case for all who take it, though we know that to be untrue - and so do they.

It's just the government parroting the general principle that most vaccinations are beneficial for the community overall (true), and detrimental to some individuals who they're prepared to throw under the bus to achieve some benefit for the whole community. Individuals wear those benefits/risks, not the government. If we have an adverse reaction the government will just say they told us there were risks. I'm generally pro-vaccination but not while I have active PMR.

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1 reply
papas | @papas | Oct 28 7:56am

I am also conflicted about the shot. Had the Flu shot recently with no problems. I am currently @ 4mg Prednisone and a once a week Actemra injection. This past April lost some sight in my left eye and was treated for GCA (not confirmed by biopsy or blood work) Apparently I am one of a small percentage of PMR patients that does not present the typical blood/biopsy indicators. That being said my Rheumy suggested, if I decide to take the shot to choose Novavax and not Pfizer or Moderna. Currently, there are two types of COVID-19 vaccines for use in the United States: mRNA, (Pfizer and Moderna) and protein subunit (Novavax) vaccines. It is his opinion that Novavax would have less impact on my system and give me the best chance of not having PMR return. I have a meeting with him in a few days to decide on next steps for my taper and I will decide the shot question. All the best to you on your journey.

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Joanne Kearsey | @jojobarrk | Oct 28 2:55pm
In reply to @barracudacool "Talking to people who have had this or are caring for those that do is the..." + (show)
@barracudacool

Talking to people who have had this or are caring for those that do is the only way to go. Not dumping at all. Hugs for you and your husband. This is tough stuff.

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We saw rheumatologist today and he confirmed my husband’s PMR inflammation markers are elevated. So he upped the prednisone to 20mg daily plus added methotrexate. Hopefully he can tolerate this new med.

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art43 | @art43 | Oct 29 9:32am
In reply to @kerriihart "The new CDC guidelines for people with PMR or auto immune disease is to NOT get..." + (show)
@kerriihart

The new CDC guidelines for people with PMR or auto immune disease is to NOT get the Covid vaccine. This per my Rheumatologist. Three years ago I took the J & J vaccine, it put me in bed with writhing pain for six weeks while triggering a PMR major relapse. Today Im in a wheelchair unable to walk more than 25' or stand more than 5 minutes. Unfortunately, during the time of the new vaccine, the CDC took the J & J off of the market for 30 days for just this reason. Then, they put it back on the market because not enough of us were relapsing. It's been awful. Good luck!

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Here are the CDC guidelines.
https://www.cdc.gov/vaccines/covid-19/clinical-considerations/interim-considerations-us.html
Perhaps I am missing something, but I am not seeing anywhere in there that anyone with an autoimmune disease should not get a Covid vax. The exact opposite appears to be the case.
Also, we should be asking whether PMR that is clearly in remission constitutes “having PMR”.
I have tapered successfully to 2.5. I have no PMR symptoms. My rheumy says we are no longer treating PMR. Do I now have PMR ? I think not.

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nancy53 | @nancy53 | Oct 29 10:48am
In reply to @megz "Interesting that the new CDC guidelines have changed to take account of possible bad reactions to..." + (show)
@megz

Interesting that the new CDC guidelines have changed to take account of possible bad reactions to the vaccine. In Australia the stated official position is still that overall the risks of not getting the vaccine outweigh the risks of having it, even if you have an auto-immune condition. Then they overstate the facts and say it is "safe and effective", implying that's the case for all who take it, though we know that to be untrue - and so do they.

It's just the government parroting the general principle that most vaccinations are beneficial for the community overall (true), and detrimental to some individuals who they're prepared to throw under the bus to achieve some benefit for the whole community. Individuals wear those benefits/risks, not the government. If we have an adverse reaction the government will just say they told us there were risks. I'm generally pro-vaccination but not while I have active PMR.

Jump to this post

I was advised by all of my medical advisors to have the Covid vax.

Two weeks ago I was brave, got the shot, and am very happy to report that I had no adverse reaction.

I do believe that a reaction would be far less harmful to my health than a bout with Covid!

REPLY
1 reply
wellsbjt | @wellsbjt | Oct 29 2:18pm

The covid vaccine causes inflammation. There are 2 scientific papers on Pubmed (which is part of the National Institute of Health) that summarizes studies showing a higher than normal incidence onset of pmr shortly (within 30 days) after covid vaccines. The most useful paper was published in Great Britain in 2023. I can provide a link to the paper if you are interested.

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art43 | @art43 | Oct 29 5:34pm

CBS News:
“COVID-19 was blamed as the "underlying" primary cause for 49,928 deaths in 2023.”
There was no mention of PMR or a PMR flare caused by a Covid vax being a primary cause of death.
PMR is treatable. Covid is not always so.

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megz | @megz | Oct 29 5:39pm
In reply to @nancy53 "I was advised by all of my medical advisors to have the Covid vax. Two weeks..." + (show)
@nancy53

I was advised by all of my medical advisors to have the Covid vax.

Two weeks ago I was brave, got the shot, and am very happy to report that I had no adverse reaction.

I do believe that a reaction would be far less harmful to my health than a bout with Covid!

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You can still get Covid after the vaccine. People often let down their guard and think the vaccine protects them from getting it. It doesn't. Protective measures against getting Covid still need to be taken, especially people with lowered immunity like us.

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1 reply
nancy53 | @nancy53 | Oct 29 6:40pm
In reply to @megz "You can still get Covid after the vaccine. People often let down their guard and think..." + (show)
@megz

You can still get Covid after the vaccine. People often let down their guard and think the vaccine protects them from getting it. It doesn't. Protective measures against getting Covid still need to be taken, especially people with lowered immunity like us.

Jump to this post

I know that. But, you don't get as sick as you might without the vax. I'm careful -but won't live in fear. At 71, I'm going to live it up!

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