Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19

Posted by asklizzie @asklizzie, Mar 11, 2020

I was wondering if we were more susceptible to getting sick than others since PMR is an autoimmune disease?

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

@dreamer38

In reply to @johnbishop "Hi Bill @charlie333, Welcome to Mayo Clinic Connect. I think all of…" + (show)
Hi John, when I had to go up to 20mg of prednisone, I was told by my Rheumy to stay indoors as prednisone lowers the immune system. Now I’m on 10 for a month & not sure what to do! Anyone have any idea?

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Hi @dreamer38, I agree with @astaingegerdm that it's best to avoid crowds and use social distancing, hand washing, etc. but I don't think you have to stay indoors.

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@johnbishop

Hi @dreamer38, I agree with @astaingegerdm that it's best to avoid crowds and use social distancing, hand washing, etc. but I don't think you have to stay indoors.

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Thanks, John. Took your advice…walked today…beautiful breeze, etc. People seem to be social distancing which is good. Not too many wearing masks…hmmmm. Boy, the taking of Prednisone and Gabapentin (for neuropathy in legs) sure makes one tired!! Must soldier on though!! Thanks again for advice.

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Hi Guys,
I have followed this chain for some time but am only now jumping in with a comment.
Three years ago, I too was diagnosed with Polymyalgia Rheumatica. For several months I could hardly roll out of bed in the mornings and then barely walk.
Finally my doctor was able to figure out that I had PR which resulted from a Flu shot. He put me on the steroids and after a couple of months it went away.
Since then, no PR, no problems and definitely no more Flu shots!!!
I had not worried about this issue until now, when I am faced with taking the COVID vaccine. I can't find anything about PR being a side effect, but assume since I was told only a very few folks get PR from a Flu shot, I suspect the PharmLabs didn't even test for this side effect?
I would love to hear from anybody with any thoughts on this subject?
Thanks

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Hi @vernl . I have not been able to trace exactly when or how I got PMR, but have had it around as long as I have been diagnosed with Mesenteric Panniculitis. I don't know if that is a coincidence or if there is a connection between the two diseases? I am currently on prednisone and methotrexate to try to help with the symptoms. My rheumatologist told me that I would be on these meds for a couple of years, so consider yourself lucky that your symptoms have eased! None of my doctors have said anything about side effects from the covid vaccine because of either disease, but like you, I doubt that the vaccine was specifically tested on people in my specific situation. At this point, I think we may have to balance the good that the vaccine will do compared with side effects. To be honest, I am willing to take a bit of a blind leap as I am very concerned about catching covid!

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@vernl

Hi Guys,
I have followed this chain for some time but am only now jumping in with a comment.
Three years ago, I too was diagnosed with Polymyalgia Rheumatica. For several months I could hardly roll out of bed in the mornings and then barely walk.
Finally my doctor was able to figure out that I had PR which resulted from a Flu shot. He put me on the steroids and after a couple of months it went away.
Since then, no PR, no problems and definitely no more Flu shots!!!
I had not worried about this issue until now, when I am faced with taking the COVID vaccine. I can't find anything about PR being a side effect, but assume since I was told only a very few folks get PR from a Flu shot, I suspect the PharmLabs didn't even test for this side effect?
I would love to hear from anybody with any thoughts on this subject?
Thanks

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Hello @vernl, I would like to add my welcome to Connect along with @kimh and others. I've had 2 occurrences of PMR but it's currently in remission. I still get my flu shot every year and when available I plan to get the COVID vaccine because I'm at risk by age and health conditions. There is some data about PMR being triggered by the flu vaccine but it's worth the risk for me.

"Immunization has been reported as a rare trigger for vasculitides; a recent review of 1797 adverse events (AEs) reported across three international databases found that PMR represented 9.2% of reported AEs and was more frequently associated with influenza vaccines (3).Dec 16, 2019" – Relapse of polymyalgia rheumatica following adjuvanted influenza vaccine: A case-based review:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7002008/
It sounds like your PMR is also in remission. Have you made any lifestyle changes like diet or exercise to help keep the PMR in remission?

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@vernl

Hi Guys,
I have followed this chain for some time but am only now jumping in with a comment.
Three years ago, I too was diagnosed with Polymyalgia Rheumatica. For several months I could hardly roll out of bed in the mornings and then barely walk.
Finally my doctor was able to figure out that I had PR which resulted from a Flu shot. He put me on the steroids and after a couple of months it went away.
Since then, no PR, no problems and definitely no more Flu shots!!!
I had not worried about this issue until now, when I am faced with taking the COVID vaccine. I can't find anything about PR being a side effect, but assume since I was told only a very few folks get PR from a Flu shot, I suspect the PharmLabs didn't even test for this side effect?
I would love to hear from anybody with any thoughts on this subject?
Thanks

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Hi, Verni and welcome. A couple of comments: PMR is idiopathic, meaning there is no known cause. There does seem to be some relationship with flu or Shingrix vaccines, and also with stress, but it is hard to know exactly what causes it in individual cases. Also, I’m afraid PMR doesn’t go away. If you have the disease, you will always have it. It’s symptoms can go into remission and usually do with the right dosage of Prednisone or related corticosteroid. If you’re really lucky, the symptoms won’t come back, but that’s the exception, not the rule. In fact the average time from first symptoms to remission without steroids is 5.9 years, so it’s a long haul disease for most. As far as the vaccine is concerned, the flu and Shingrix vaccines include inactivated or partial snippets of the virus they combat. The Pfizer and Moderna COVID vaccines approved thus far do not include any of the coronavirus; rather they are “messenger DNA” vaccines, meaning they are created in a lab to convince our immune system to fight the coronavirus. At least in theory they pose no risk of giving you COVID-19. That appears to be borne out by the tens of thousands in the clinical trials and the early reports from over 2 million vaccinations. In any event, check with your doctor about your situation. Like John said, i view the risk of COVID greater than the risk of side effects (I have PMR and take 10 mg of Prednisone a day after two flares when i thought i was off the drug) so I will be getting the shot when they get to me. I encourage everyone to strongly consider getting the vaccine unleaded their doctor feels otherwise.

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@johnbishop

Hello @vernl, I would like to add my welcome to Connect along with @kimh and others. I've had 2 occurrences of PMR but it's currently in remission. I still get my flu shot every year and when available I plan to get the COVID vaccine because I'm at risk by age and health conditions. There is some data about PMR being triggered by the flu vaccine but it's worth the risk for me.

"Immunization has been reported as a rare trigger for vasculitides; a recent review of 1797 adverse events (AEs) reported across three international databases found that PMR represented 9.2% of reported AEs and was more frequently associated with influenza vaccines (3).Dec 16, 2019" – Relapse of polymyalgia rheumatica following adjuvanted influenza vaccine: A case-based review:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7002008/
It sounds like your PMR is also in remission. Have you made any lifestyle changes like diet or exercise to help keep the PMR in remission?

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Wow, this paper is quite illuminating. Thank you for bringing it to our attention.

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@vernl

Hi Guys,
I have followed this chain for some time but am only now jumping in with a comment.
Three years ago, I too was diagnosed with Polymyalgia Rheumatica. For several months I could hardly roll out of bed in the mornings and then barely walk.
Finally my doctor was able to figure out that I had PR which resulted from a Flu shot. He put me on the steroids and after a couple of months it went away.
Since then, no PR, no problems and definitely no more Flu shots!!!
I had not worried about this issue until now, when I am faced with taking the COVID vaccine. I can't find anything about PR being a side effect, but assume since I was told only a very few folks get PR from a Flu shot, I suspect the PharmLabs didn't even test for this side effect?
I would love to hear from anybody with any thoughts on this subject?
Thanks

Jump to this post

That is certainly something to ponder. Can t offer any tips as I am thinking about the repercussions myself ,having temporal arteries . Good luck with your decision.

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Thx to all who responded.
I'm sure I will probably take the COVID vaccine when available as I am 72 and high risk. If it reactivates my PMR, I guess life with PMR is better than no life.
FYI for those still fighting PMR. I followed my doctor advice with the steroids and gradually tapered down the dosage. After feeling stable on 5 mg, I started alternating with the 5 mg one day and 3 regular aspirin the next day. Eventually I was able to reduce the steroids to once a week and aspirin daily. Finally went just aspirin every day. After a month I was off everything and no PMR since.

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@vernl

Thx to all who responded.
I'm sure I will probably take the COVID vaccine when available as I am 72 and high risk. If it reactivates my PMR, I guess life with PMR is better than no life.
FYI for those still fighting PMR. I followed my doctor advice with the steroids and gradually tapered down the dosage. After feeling stable on 5 mg, I started alternating with the 5 mg one day and 3 regular aspirin the next day. Eventually I was able to reduce the steroids to once a week and aspirin daily. Finally went just aspirin every day. After a month I was off everything and no PMR since.

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Wow that is fantastic

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New to the site. Diagnosed with PMR in March and with another underlying condition told it likely an immune system response to the first Pfizer CoVID shot. Doc says this can be treated and still better off being vaccinated.

Prescribed a Prednisone regime with a 1 MG stepdown each 30 Days. After feeling OK (not great) for several months, symptoms started to return when starting the 8MG a day about six weeks ago, becoming much worse now six months into the program at 7MG per day. Called my Rheumatologist this past Monday who suggested going back to 8MG for a couple weeks before continuing the step down.

Symptoms continue to return and now as troublesome as first diagnosed. Have a call in to the doctor hoping to hear back tomorrow. Also planning to schedule a "second opinion visit" with another physician next week.

Haven't read through all the site responses here yet, but has anyone else experienced the steroids losing effectiveness?

Thanks

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@georgev

New to the site. Diagnosed with PMR in March and with another underlying condition told it likely an immune system response to the first Pfizer CoVID shot. Doc says this can be treated and still better off being vaccinated.

Prescribed a Prednisone regime with a 1 MG stepdown each 30 Days. After feeling OK (not great) for several months, symptoms started to return when starting the 8MG a day about six weeks ago, becoming much worse now six months into the program at 7MG per day. Called my Rheumatologist this past Monday who suggested going back to 8MG for a couple weeks before continuing the step down.

Symptoms continue to return and now as troublesome as first diagnosed. Have a call in to the doctor hoping to hear back tomorrow. Also planning to schedule a "second opinion visit" with another physician next week.

Haven't read through all the site responses here yet, but has anyone else experienced the steroids losing effectiveness?

Thanks

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Hello @georgev, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. When it comes to tapering off of prednisone slow and easy is the way to go. You mentioned your rheumatologist suggested tapering down 1 mg every 30 days. My first round with PMR took me 3-1/2 years to taper off of prednisone with the last six months going back and forth by-weekly between 1 mg and 1/2 mg. What really helped me was keeping a daily pain scale and dosage log. It was recommended by my rheumatologist and left up to me to determine my pain level between 0 and 10. I generally tapered down only if my pain level was 2 or lower and tried it for a few days. If it got worse I went back to the previous dosage.

You might be interested in reading what other members have shared on tapering in the following discussions:
— PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
— Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/

Have you made any diet or lifestyle changes to help with your PMR symptoms?

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