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.

Very helpful – thanks!

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Hi, I am on my 3rd bout of PMR. I am 73. The first time was 16 years ago and it took me 2 years to get off prednisone. It didn’t recur until about 2 1/2 years ago and I got off prednisone in 10 months, but then it recurrred 10 months later. I have now been on prednisone since December 2019, with dose raised to 10 mg in January. I am now on 8 mg. In retrospect, I think I came off prednisone too quickly 2 years ago.. Either I am having a recurrence or it never really went away. I am going slow this time. My rheumatologist’s office sent out a notice saying drugs one would need to come off of if you got Covid. On the list was a dose of prednisone over 20 mg. So my 8 is well below that. I have always found it devilishly hard to make the small changes like going from 5 to 4 to 3, etc. I am taking my time this time, hoping I can get it back in remission. I think our goal is social distancing and avoiding Covid if we can. (In my case, it means social distancing from kids and grandkids, sigh).

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Great information.

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@asklizzie

My Rheumatoid doc confirmed the same. I chose not to go on prednisone from the beginning so he told me that my immune system was not at risk. I need to follow rules of the general population.

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I was on prednisone and it worked great expect for the potential side effects. If I get PMR again I am not sure what I would do. what did your Doctor put you on in lieu of Prednisone

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@ayjaydee

This Corona virus thing has me a bit on edge as prednisone is known to suppress the immune system. I'm only on 1 mg/day down from 2 mg/day taken for the past year and I havent tried stopping it completely yet. Anyone know if the immune system is heavily suppressed at this low dose?

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I just happen to see your post on the immune system in regards to 1 Mg of prednisone. I don't have an answer about that ,but I had PMR for about two years and have Totally weened myself off it. It was very difficult ,because every time I went down in dosage it returned. I decided when I was at about 3-4 mg,I would start reducing my doses by 1/2 mg.The pain would return but for a shorter time than 1mg. As I hit 1-2 mg I started going down in 1/4mg. I stayed at that dose until I felt the pain almost leave. It could be 5 days to 2weeks. My last dose was 1/4 mg and I told my body this is the last you are getting.Thought it might help you, since I know that every time I went down I had a relapse and wanted to go up again on my dosage.

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@mhewit

I just happen to see your post on the immune system in regards to 1 Mg of prednisone. I don't have an answer about that ,but I had PMR for about two years and have Totally weened myself off it. It was very difficult ,because every time I went down in dosage it returned. I decided when I was at about 3-4 mg,I would start reducing my doses by 1/2 mg.The pain would return but for a shorter time than 1mg. As I hit 1-2 mg I started going down in 1/4mg. I stayed at that dose until I felt the pain almost leave. It could be 5 days to 2weeks. My last dose was 1/4 mg and I told my body this is the last you are getting.Thought it might help you, since I know that every time I went down I had a relapse and wanted to go up again on my dosage.

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Hi @mhewit, Welcome to Mayo Clinic Connect. Thanks for sharing your experience tapering off of prednisone. Mine was very similar to yours. I've had two occurrences of PMR, the first time it took me 3 years to taper off and the last six months was back and forth between 1mg and 1/2mg prednisone.

Have you made any other lifestyle changes to help with your PMR?

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@johnbishop

Hi @mhewit, Welcome to Mayo Clinic Connect. Thanks for sharing your experience tapering off of prednisone. Mine was very similar to yours. I've had two occurrences of PMR, the first time it took me 3 years to taper off and the last six months was back and forth between 1mg and 1/2mg prednisone.

Have you made any other lifestyle changes to help with your PMR?

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The only change I really made was through exercise. I do a lot of yoga stretching and trying to stimulate chemicals in my body from exercising at least 30 minutes. That would include brisk walking weight lifting or cycling.
I do believe my PMR was brought on by stress. I am 69 years old. My PMR started when I was about 64

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@johnbishop

Hi Bill @charlie333, Welcome to Mayo Clinic Connect. I think all of us that have had PMR can understand wanting to get off of prednisone as soon as possible even before COVID-19 reared it's ugly head. My PMR has been in remission a little over 2 years now but it took me a year and a half to taper off of prednisone. The first time my PMR showed up was about 10 years earlier and took me 3-1/2 years to taper off of prednisone. I'm 77 now and a high risk if I were to contract COVID-19.

I have no medical training or background but I don't think being on prednisone has anything to do with contracting COVID-19 but think it would make getting infected with COVID-19 worse for us. Have you talked to your rheumatologist about your concerns?

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Hi. I’ve been on 20mg Prednisone for almost a week…have had severe pain in hands/wrists and had to go up from 2mgs. Rheumy advised me to stay in, no going out because of COVID-19. Have had PMR since Oct ‘18 and been up and down w/Pred. Hope this is of some help.

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I do believe the biggest problem with the reduction of prednisone is we go down two fast . The pain comes back and for too long.Then we increase Mgs.Try going down in .25 mg from 10mg once you have little or no pain go down another .25mg It could take 4 to 10 days for pain to leave.Please remember the pain will return as you go down even at this low reduction ,but the time of the pain will be less

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@johnbishop

Hi Bill @charlie333, Welcome to Mayo Clinic Connect. I think all of us that have had PMR can understand wanting to get off of prednisone as soon as possible even before COVID-19 reared it's ugly head. My PMR has been in remission a little over 2 years now but it took me a year and a half to taper off of prednisone. The first time my PMR showed up was about 10 years earlier and took me 3-1/2 years to taper off of prednisone. I'm 77 now and a high risk if I were to contract COVID-19.

I have no medical training or background but I don't think being on prednisone has anything to do with contracting COVID-19 but think it would make getting infected with COVID-19 worse for us. Have you talked to your rheumatologist about your concerns?

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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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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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@dreamer38 – Hi! I saw your post and just wanted to offer my opinion. At 10 mg Prednisone you are still immunosuppressed, even though not as much as at 20 mg. I would still be very careful being around many people. It seems as if the infective rates are going up again, since some social isolation rules have been relaxed. Better safe than sorry.

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