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?

@bridgegoddess

Yes good advice , but remember most doctors may be overwhelmed in the next few weeks.
Staying away from people is a really important step That May include family members who could have been exposed ,

Make a plan to amuse yourself if in isolation I decided today to visit one country every day via the internet It can keep me interested for a long time , just enjoying the beauty of the land and the culture

Added stress right now is not a good thing Everyone on this side can use the internet
We are more fortunate than a lot of people our age who do not use this wonderful tool !

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Hi @bridgegoddess, I second that. What a great idea. I'd like to ask you to start a discussion in the COVID-19 group to tell people about this idea. Perhaps you could post what country you're visiting and encourage others to join you. This way we can have a social connection while being social distanced.

Here's how:
1. Go to the COVID-19 group: https://connect.mayoclinic.org/group/covid-19/
2. Click the grey button START A DISCUSSION.
3. Enter a title that invites people to join you. Perhaps something like: Let's travel the world virtually: Join me on a trip?
4. Write your message about what you do, why, and how you do it. Then invite others to join you.

What do you think?

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@ethanmcconkey

Hi @ayjaydee you may have noticed I moved your post to this existing discussion on PMR and Coronavirus so that you can have your posts on this topic in one place and also so you can connect with others who haves similar concerns.

I also have added this discussion to Mayo Clinic Connect's new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The idea is to help Connect members cope and connect during these unprecedented times.

You may follow along with the COVID-19 group by clicking on +Follow. You're welcome to look at the discussions there and participate, including starting any new discussions on any COVID-19-related topic you'd like to talk about.

Back to you @ayjaydee, I thought @johnbishop, @bridgegoddess @maija and @mbm would be able to share their knowledge and thoughts on this topic. Have you had a chance to ask your doctor about this?

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I got the feeling he didnt really know but he was supportive of a plan to get off it if possible so i will try going down to 1 mg tomorrow and 1/2 mg in a week etc. he told me to just watch to ensure the pain doesnt become unbearable

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@kathylovgren

What is the advice for taking prednisone to help reduce pmr symptoms versus reduced immune system and this virus?

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Hello @kathylovgren, Welcome to Mayo Clinic Connect. There is another discussion on your question already. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion where you can meet other members with PMR and COVID-19 questions.

> Groups > Polymyalgia Rheumatica (PMR) > PMR and Coronavirus
https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/

You may also be interested in following the main PMR discussion here:
> Groups > Polymyalgia Rheumatica (PMR) > Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/

I also have PMR but it is currently in remission and I've been off of prednisone for close to 2 years now. I think you probably need to balance the benefits of taking prednisone – is it keeping you pain free, verses the risks – possible reduced immune system, which there are some things you can do to help reduce the risks. Have you had a chance to talk with your rheumatologist?

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@kathylovgren

What is the advice for taking prednisone to help reduce pmr symptoms versus reduced immune system and this virus?

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John Is there any information about once you are off prednisone how long it would take to have your immune system return to pre PMR if it was reduced during active PMR? Also do you have access to general information about reducing the risk. Thank you for your continued help you have been great.

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@alanbruce

John Is there any information about once you are off prednisone how long it would take to have your immune system return to pre PMR if it was reduced during active PMR? Also do you have access to general information about reducing the risk. Thank you for your continued help you have been great.

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Hi Alan @alanbruce, I haven't seen any PMR specific information for COVID-19. Mayo Clinic has a webpage dedicated to COVID-19 that has a topic for how to reduce your risks.
https://newsnetwork.mayoclinic.org/discussion/reduce-your-covid-19-risk-wash-hands-clean-cell-phones-and-workstations/
Did you see the new Group added to Connect for COVID-19? It has a lot of discussions that you might find helpful during this stressful time.
https://connect.mayoclinic.org/group/covid-19/

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What is the advice for taking prednisone to help reduce pmr symptoms versus reduced immune system and this virus?

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@kathylovgren

What is the advice for taking prednisone to help reduce pmr symptoms versus reduced immune system and this virus?

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Hi @kathylovgren @alanbruce @johnbishop I moved your discussion about prednisone, PMR and the coronavirus to this existing discussion on the topic. Click VIEW & REPLY to read through the past messages and to connect with others.

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There was a message from the rheumatology practice that I go to that told patients what medications they would have to stop if they were diagnosed with the Coronavirus. Prednisone was on the list, but only if you were taking more than 20 mg. (And said to call them for taper). At lower doses, I expect we are OK. And this was only if you were diagnosed. Otherwise, you were supposed to stay on your meds.

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@kathylovgren

When flare up of pmr occurs what should one do in face of Covid 19 and worries about it versus autoimmune response? Go back on prednisone at low level or what?

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Hi @kathylovgren, I see that your previous post with a similar question was moved by @colleenyoung to the following discussion. Did you get a chance to read through the discussion and find answers to your question?

> Groups > Polymyalgia Rheumatica (PMR) > Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19
https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/

I haven't seen any PMR specific information for COVID-19. Mayo Clinic has a webpage dedicated to COVID-19 that has a topic for how to reduce your risks.
https://newsnetwork.mayoclinic.org/discussion/reduce-your-covid-19-risk-wash-hands-clean-cell-phones-and-workstations/

Did you see the new Group added to Connect for COVID-19? It has a lot of discussions that you might find helpful during this stressful time.
https://connect.mayoclinic.org/group/covid-19/

Mayo Clinic News Network has a page on COVID-19 that is continually updated with helpful information, podcasts and question and answer topics.
https://newsnetwork.mayoclinic.org/category/covid-19/

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When flare up of pmr occurs what should one do in face of Covid 19 and worries about it versus autoimmune response? Go back on prednisone at low level or what?

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Hi @kathylovgren, you may have noticed I moved your post to this discussion that @johnbishop had referenced you post being put before so that you can connect with others with similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

I encourage you to read through the other posts in this discussion and also to look through the references John shared. How have you been feeling? Have you been able to send a message to your doctor to ask their opinion?

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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 am a hospital pharmacist. My thought is that low-dose 1 mg would not significantly alter your immune response to a virus. I’m currently on 10 mg and I think that could have an effect. But I appreciate all the comments on this. I’ve just been that much more cautious to prevent what we can.

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