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) Support Group.

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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@johnbishop

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?

Jump to this post

Hi John,

Appreciate both the welcome and reply. As mentioned, an increase of 1 MG a day has done nothing and awaiting a response bfrom my Rheumatologist regarding what to do next. Know it's a touchy medication and will increase more only if instructed to do so.

Also, no recommendations regarding diet changes other than prescribed calcium and D3 supplements. The only lifestyle change is I can't do near what I used to.

Regarding tapering, again will follow my doctor's specific instructions.

Not sure whether the condition or a side effect of Prednisone, but often weak with no leg stamina plus now after a few months it seems everytime I bump something rough my skin tears easily with subsurface bruising.

Will read through the comments for any information.

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@maija

we may be more fortunate as we have known that we COULD BE more susceptible to virus and bacteria. We should have learned those basic rules of hygiene, as hand washing (often and well), being cautious of touching your face, nose, eye, etc, clean or avoid the surfaces that have been touched by others (door knobs), get adequate rest, eat your fruits and vegetables, remain hydrated, etc etc. Remember to get a flu shot each season........

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The thing to keep in mind is to keep wearing a mask regardless of vax status. The virus is not hovering in the air but passed through droplets from an infected person and on surfaces touched my someone carrying the virus. So feel free to open a window or sit on your balcony.

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It is likely that if you have one autoimmune disease you are likely to get another especially if autoimmune disease runs in the family. My family tree includes 2 Multiple Sclerosis, 1 Lupus, 1 Graves disease, 1 Asthma, 2 Arthritis and 1 PMR. Lucky me.

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Not sure which bord this should be on, but I'm dure John will direct it for me. I'm just curious to know if PMR affects the length of time it takes to get over Covid. Does PMR, being an autoimmune disease, stop your body from producing antibodies to stem off Covid? Going on 8 days now and still testing positive.

REPLY
@ncgal

Not sure which bord this should be on, but I'm dure John will direct it for me. I'm just curious to know if PMR affects the length of time it takes to get over Covid. Does PMR, being an autoimmune disease, stop your body from producing antibodies to stem off Covid? Going on 8 days now and still testing positive.

Jump to this post

Hi @ncgal, From what I've read, any autoimmune condition makes you more susceptible to COVID. I did find an article from last summer on the topic.

"Patients with immune deficiencies or autoimmune disorders are at a higher risk for infection with COVID-19, as they are frequently treated with anti-cytokine, glucocorticoids, and/or immunosuppressive drugs. The infection rate with COVID-19 among people with immune diseases is twice that of the general population[176]. The data derived from international registries of patients with rheumatic diseases (C19-GRA3) who encountered COVID-19 showed poor outcomes depending on their medications[177]. For example, patients treated with antitumor necrosis factor (TNF) showed decreased hospitalization risk, indicating the protective effects of anti-TNF monotherapy against severe COVID-19. Antimalarial drugs (such as hydroxychloroquine), non-steroidal anti-inflammatory drugs, and biologic therapies were not related to increasing the risk of hospitalization due to COVID-19. In contrast, patients who received moderate to high dose glucocorticoids had poor prognoses and clinical outcomes[177,178]. However, other factors may also play a role in the clinical outcome that need more studies.'
--- COVID-19 disease and autoimmune disorders: A mutual pathway:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9350728/.
You might also be interested in a couple of related discussions:
--- Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19:
https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/
--- Polymyalgia, Covid Infection, Anti-Virals:
https://connect.mayoclinic.org/discussion/polymyalgia-covid-infection-anti-virals/.
Did your doctor start any treatments when you first tested positive?

REPLY
@johnbishop

Hi @ncgal, From what I've read, any autoimmune condition makes you more susceptible to COVID. I did find an article from last summer on the topic.

"Patients with immune deficiencies or autoimmune disorders are at a higher risk for infection with COVID-19, as they are frequently treated with anti-cytokine, glucocorticoids, and/or immunosuppressive drugs. The infection rate with COVID-19 among people with immune diseases is twice that of the general population[176]. The data derived from international registries of patients with rheumatic diseases (C19-GRA3) who encountered COVID-19 showed poor outcomes depending on their medications[177]. For example, patients treated with antitumor necrosis factor (TNF) showed decreased hospitalization risk, indicating the protective effects of anti-TNF monotherapy against severe COVID-19. Antimalarial drugs (such as hydroxychloroquine), non-steroidal anti-inflammatory drugs, and biologic therapies were not related to increasing the risk of hospitalization due to COVID-19. In contrast, patients who received moderate to high dose glucocorticoids had poor prognoses and clinical outcomes[177,178]. However, other factors may also play a role in the clinical outcome that need more studies.'
--- COVID-19 disease and autoimmune disorders: A mutual pathway:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9350728/.
You might also be interested in a couple of related discussions:
--- Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19:
https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/
--- Polymyalgia, Covid Infection, Anti-Virals:
https://connect.mayoclinic.org/discussion/polymyalgia-covid-infection-anti-virals/.
Did your doctor start any treatments when you first tested positive?

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Thanks John. No, I didn't see a doctor as for the first three days I thought I had bronchitis. When it came back positive for Covid on day 3, I was not able to get to the doctor because of nausea and diarrhea and they wanted me to sit in the car outside and wait to be called (the usual waiting time is 30 mins) . From what I understand the anti-viral meds have to be given within 5 days of the start.
I appreciate all the information you provided. I still have a ways to go, but things are improving.

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@ncgal

Not sure which bord this should be on, but I'm dure John will direct it for me. I'm just curious to know if PMR affects the length of time it takes to get over Covid. Does PMR, being an autoimmune disease, stop your body from producing antibodies to stem off Covid? Going on 8 days now and still testing positive.

Jump to this post

I had tapered off Prednisone when I caught COVID and I had a mild case that lasted 7 days with 2 days of low-grade fever. Unfortunately, it triggered my PMR, so I'm back on 2 mg. Prednisone now.

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Do PMR symptoms worsen during Covid infection? Has anyone had to increase their prednisone during this time period? PJN

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