PMR Flair up From a Virus?

Posted by christopherc @christopherc, Jun 27, 2022

Has anyone with a Polymyalgia Rheumatica had a significant flareup that they think was triggered by a virus such as a cold, COVID-19 or the flu? I have and I was wondering whether anyone else has had this experience and if so, if they know why a virus might trigger a flareup or a relapse.

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@aspine

Hi, Christopherc, Okay, so this is how I understand it. A healthy person has working adrenal glands, which produce cortisol and send it out to your body as needed. So, when you become emotional, or active, or sick, the adrenals recognize this and they send out more cortisol to get you through your current "crisis". But when we take prednisone, your adrenal glands basically shut down and don't produce cortisol, because they sense that the prednisone is doing their job for them. The difference is, WE are controlling the amount of prednisone your body is getting and it's a stable amount every day. There is no producing more or less based on your changing needs each day. So if you get sick, or are more active than usual on a given day, or having something else that is stressing you out, the prednisone might not be enough to take care of those "special" occasions like your adrenal glands normally would. So this is why, it's a good idea when you're sick to up your dose of prednisone. (Of course, you would need to discuss this with your doctor.) Further it's also a good reason why you should pace yourself - not doing too much physical activity that is unusual for you two days in a row, and if your are fatigued, you need to allow yourself to rest. Recently I had covid, so I upped my prednisone by 5 mg/day (with my doctor's blessing) for 6 days. Then went right back down to my normal dose within 2 steps. No problem. I hope this answers your question. Just a little bonus aside - they also gave me Paxlovid and I rebounded on it. Covid for over 2 weeks. But again. All went well.

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I find everyone’s experience, so interesting and different from one another. My naturopath recommended Cortrex, which is an adrenal support complex. Thorn is the company that makes it. I believe this has helped my tapering off prednisone considerably. My PMR started in June 2022 and I started on prednisone in July going up to a maximum of 8 mg. I just tapered off as of the end of December 2022. The jury is still out but so far I’m feeling pretty good. Prednisone really messed with my bone density… down by 8% in some areas. If the PMR returns, I may consider naltrexone …my doctor suggested that. Does anyone have any experience with that?

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I had a flare up last April after getting Covid. I had weaned off prednisone from 20mg to 1mg and my Rheumatologist put me back up to 12 1/2 mg and I needed to wean off all over again. 😠 I’d be interested to know if others have had a flare up after Covid or any other virus.

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@elt

I find everyone’s experience, so interesting and different from one another. My naturopath recommended Cortrex, which is an adrenal support complex. Thorn is the company that makes it. I believe this has helped my tapering off prednisone considerably. My PMR started in June 2022 and I started on prednisone in July going up to a maximum of 8 mg. I just tapered off as of the end of December 2022. The jury is still out but so far I’m feeling pretty good. Prednisone really messed with my bone density… down by 8% in some areas. If the PMR returns, I may consider naltrexone …my doctor suggested that. Does anyone have any experience with that?

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Been on 2mg a day since mid 2019. (Tried 4mg and didn't seem to make a difference so went back to two.) I have Crohn's and pain when I wasn't using my muscles. It irradicated the pain in two days and healed my ulcerated small intestine in two months. I now have "normal" colonoscopies. After 45 yrs with Crohn's I would say that's pretty good. It does not fix the pain of PMR, however. (At least for me.) But I know it does help the immune system normalize. Of couse, I don't know where the non moving pain came frome. It could have been PMR related. It happened at the same time. I won't do without it. I'll be glad to answer any questions I can.

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@aspine

Hi, Christopherc, Okay, so this is how I understand it. A healthy person has working adrenal glands, which produce cortisol and send it out to your body as needed. So, when you become emotional, or active, or sick, the adrenals recognize this and they send out more cortisol to get you through your current "crisis". But when we take prednisone, your adrenal glands basically shut down and don't produce cortisol, because they sense that the prednisone is doing their job for them. The difference is, WE are controlling the amount of prednisone your body is getting and it's a stable amount every day. There is no producing more or less based on your changing needs each day. So if you get sick, or are more active than usual on a given day, or having something else that is stressing you out, the prednisone might not be enough to take care of those "special" occasions like your adrenal glands normally would. So this is why, it's a good idea when you're sick to up your dose of prednisone. (Of course, you would need to discuss this with your doctor.) Further it's also a good reason why you should pace yourself - not doing too much physical activity that is unusual for you two days in a row, and if your are fatigued, you need to allow yourself to rest. Recently I had covid, so I upped my prednisone by 5 mg/day (with my doctor's blessing) for 6 days. Then went right back down to my normal dose within 2 steps. No problem. I hope this answers your question. Just a little bonus aside - they also gave me Paxlovid and I rebounded on it. Covid for over 2 weeks. But again. All went well.

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Thanks for your helpful and clear explanation. I find both Covid and polymyalgia rheumatica are still not fully understood and your information helped me to put my current experience into context. I tested positive for Covid three days ago and started anti-viral medication. My Covid symptoms are light, but the PMR flareup is quite painful so I am also upping my cortisone as I've been instructed to do by my doctor when I have flareups.

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@frankuzui

Thanks for your helpful and clear explanation. I find both Covid and polymyalgia rheumatica are still not fully understood and your information helped me to put my current experience into context. I tested positive for Covid three days ago and started anti-viral medication. My Covid symptoms are light, but the PMR flareup is quite painful so I am also upping my cortisone as I've been instructed to do by my doctor when I have flareups.

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Hi, Frank, Yes, I imagine your poor body is working hard to keep up with you right now. If your adrenals were working they'd be pumping out that cortisol to help your body cope with the covid and the flare. I'm thinking the flare is actually a reaction to not enough steroid in your system for what it's dealing with. The Brits have a program they call "Sick Day Rules". It's basically instructions on how to up your dose based on what you're currently taking, for a short period of time, so that you don't have to slowly taper back to where you were before you got sick. You can find that at healthunlocked.com/pmrgcauk. Find the FAQ's and then look up Sick Day Rules. There's also a section on Flares or Steroid Withdrawal.

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My PMR started at the end of the worse flu of my life before the holidays and following a Fall where I had Covid, flu, and covid vaccine. I was feeling better from the flu and then one morning I couldn't walk. Definitely triggered.

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I had been off of Prednisone for about 2 months when I contracted COVID. It flared up a bit after having COVID, so I'm back on 2.5 mg now and think I can taper off .5 mg every 2 weeks. BTW, my first occurence of PMR was within a week after my 2nd Pfizer vaccination. It has always been relatively mild--no inflammation markers and only hurt at night while in bed.

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@janiceem

I had been off of Prednisone for about 2 months when I contracted COVID. It flared up a bit after having COVID, so I'm back on 2.5 mg now and think I can taper off .5 mg every 2 weeks. BTW, my first occurence of PMR was within a week after my 2nd Pfizer vaccination. It has always been relatively mild--no inflammation markers and only hurt at night while in bed.

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I totally believe the PMR was induced by Covid vaccines because of the time frame. May 2021 first Pfizer and then neck and shoulder pain started all summer - went through so many pillows only to find out it was not the pillows. Whet for Chiro, Massage and Physio (useless). Then August 4, 2021 second Pfizer, 10 days later full blown PMR (although I didn't know until Jan. 2022). CRP had gone up to 42 and now-retired GP got me an emergency referral to a Neurologist here in Halifax, who diagnosed the PMR after 5 long months of excrutiating pain. It is not genetic. You've done well with your tapering btw. I'm now up to 60 mg and being checked out for GCA. CRP jumped from 3 to 24 last week with head pressure, jaw pain (not claudication), some eye involvement. 🙁

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@milld835

I totally believe the PMR was induced by Covid vaccines because of the time frame. May 2021 first Pfizer and then neck and shoulder pain started all summer - went through so many pillows only to find out it was not the pillows. Whet for Chiro, Massage and Physio (useless). Then August 4, 2021 second Pfizer, 10 days later full blown PMR (although I didn't know until Jan. 2022). CRP had gone up to 42 and now-retired GP got me an emergency referral to a Neurologist here in Halifax, who diagnosed the PMR after 5 long months of excrutiating pain. It is not genetic. You've done well with your tapering btw. I'm now up to 60 mg and being checked out for GCA. CRP jumped from 3 to 24 last week with head pressure, jaw pain (not claudication), some eye involvement. 🙁

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Thank you for sharing. I have been dealing with this since second Pfizer shot. Dealing with a temporary flare up, and currently on 3 mg of prednisone daily. I am suppose to go down to two at the end of the month because of the flare up. I think the flare up is because I missed a couple of evenings with the 1 mg - it pays to diligently take your meds daily.

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@milld835

I totally believe the PMR was induced by Covid vaccines because of the time frame. May 2021 first Pfizer and then neck and shoulder pain started all summer - went through so many pillows only to find out it was not the pillows. Whet for Chiro, Massage and Physio (useless). Then August 4, 2021 second Pfizer, 10 days later full blown PMR (although I didn't know until Jan. 2022). CRP had gone up to 42 and now-retired GP got me an emergency referral to a Neurologist here in Halifax, who diagnosed the PMR after 5 long months of excrutiating pain. It is not genetic. You've done well with your tapering btw. I'm now up to 60 mg and being checked out for GCA. CRP jumped from 3 to 24 last week with head pressure, jaw pain (not claudication), some eye involvement. 🙁

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So sorry to hear your about how long it took to diagnose--It took 4 months to diagnose with me because my inflammatory markers were normal and I only hurt while lying down in bed. I started out with just 10 mg of Prednisone because of my mild case. I realize that 60 mg has many side effects, including increasing osteoporosis. While going through all of this, my hip starting bothering me and I ended up with a hip replacement. BTW, I suggest that you report your PMR in conjuction with the vaccine here: https://vaers.hhs.gov/
Wishing you well.

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