PMR and Flu Vaccine

Posted by jed5 @jed5, Jul 30 9:42am

I contracted PMR October 2024, went through a very painful 2 months before getting it diagnosed in January 2025, and now successfully tapered off Prednisone after 6 months. My effected areas of hips, shoulders and neck while not painfully achey, they are not the same in terms of strength than before PMR. I have not ruled out that I contracted PMR from the flu vaccine I received in October 2024. Two questions:
1. Has anybody experienced post PMR body impacts such as tiredness or fatigue?
2. Do you get an annual flu vaccine?
John

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

Profile picture for paul767 @paul767

I have recently been diagnosed with PMR and they have started me on 20mg of Prednisone daily. I know it's early yet "day 13" but i have had no relief for the pain yet. I to am concerned about mobility issues as my knees are very sore and stiff in the mornings and throughout the day. I usually take a couple of Tylenol which provides some relief. (Tylenol has been approved by my liver specialist and Prednisone by my Rheumatologist) I have the pain in my upper back, lower neck, arms , on the pain scale out of 10 I would give most days a 5 to 6, but the worse is in the "Right" shoulder, left shoulder is mild pain. This pain wakes me up at night, it's a sharp pain, out of 10 i give it an 8 and it can last a few hours . I now take a couple of Tylenol later at night before going to sleep (1:00am) This gets me through the night until about 7-8 am the next morning, I'm unable to make any plans as I have no idea how I will feel after being awake for an hour or so. Life is very frustrating right now and I'm not understanding why. I have spoken with my my Rheumatologist concerning and they have told me to be patient and stay the course, sometimes Prednisone takes awhile to kick in I'm being told . That was a week ago and i don't see her again until October 17th along with my monthly blood work that i will provide. Is there anyone out there having the same problem with the Prednisone not working, extreme pain in the right shoulder. I have also began reading and investigating a condition called Referred Pain as i have also been recently diagnosed with liver cancer. At this time it seems to be one of the lower level cancers but i will be seeing a specialist in the coming weeks and hopefully be cured. I'm also reading about another condition called Steroid resistant. Bad thing with all this is that there are two many rabbit holes, don't over read and let the doctors do there jobs.

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Have you tried splitting your dose? There are a lot of threads in this forum about that. You could try taking 15 mg in the morning and 5 in the late afternoon, or some other combination. Taking the second dose later in the day might help you get through the night without pain. If that doesn't work your dose might be too low. My brother-in-law started at 30 mg.

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Hang in there the prednisone is the only thing that stopped my pain. I was in the same situation as you. Pain killers had zero impact on me. I'm not crazy over the side effects of prednisone and there are many and different ones for different people.
Once the prednisone kicked in I couldn't get over how much mobility I had lost over time and am very happy to have my mobility back.
I'm trying vitamin e and d to help offset some of the side affects.
I have just stopped 3 weeks of weaning myself off of the prednisone because my knee, back and hip pain and stiffness returned. I assume I may have to be on the prednisone one or two years to accomplish remission. Good luck.

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Profile picture for paul767 @paul767

I have recently been diagnosed with PMR and they have started me on 20mg of Prednisone daily. I know it's early yet "day 13" but i have had no relief for the pain yet. I to am concerned about mobility issues as my knees are very sore and stiff in the mornings and throughout the day. I usually take a couple of Tylenol which provides some relief. (Tylenol has been approved by my liver specialist and Prednisone by my Rheumatologist) I have the pain in my upper back, lower neck, arms , on the pain scale out of 10 I would give most days a 5 to 6, but the worse is in the "Right" shoulder, left shoulder is mild pain. This pain wakes me up at night, it's a sharp pain, out of 10 i give it an 8 and it can last a few hours . I now take a couple of Tylenol later at night before going to sleep (1:00am) This gets me through the night until about 7-8 am the next morning, I'm unable to make any plans as I have no idea how I will feel after being awake for an hour or so. Life is very frustrating right now and I'm not understanding why. I have spoken with my my Rheumatologist concerning and they have told me to be patient and stay the course, sometimes Prednisone takes awhile to kick in I'm being told . That was a week ago and i don't see her again until October 17th along with my monthly blood work that i will provide. Is there anyone out there having the same problem with the Prednisone not working, extreme pain in the right shoulder. I have also began reading and investigating a condition called Referred Pain as i have also been recently diagnosed with liver cancer. At this time it seems to be one of the lower level cancers but i will be seeing a specialist in the coming weeks and hopefully be cured. I'm also reading about another condition called Steroid resistant. Bad thing with all this is that there are two many rabbit holes, don't over read and let the doctors do there jobs.

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Hello @paul767, I would like to add my welcome along with @jeff97 and others. You might want to take a look at the discussion started by another member @cliffg26 - I’m Not Responding to Prednisone and I Need Advice: https://connect.mayoclinic.org/discussion/im-not-responding-to-prednisone-and-i-need-advice/.

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Profile picture for linda7 @linda7

I can't comment on the first question because I am not over PMR yet. To the second question, no I do not get a flu shot. I got the shots yearly when I worked in health care because it seemed like the right thing to do to protect patients. About half the time I would have a reaction to the shot and feel ill for a couple of days. I always got the shot on a Friday so I would not have to work when I wasn't feeling well. In spite of the shots I twice got the flu, was sick for at least a week with temps up to 102. Then in 2020, the Covid year, I got my flu shot and had a worse than normal reaction, spiked a fever for 5 days straight. My Covid test was negative. In early 2021 I got the Covid vaccine and PMR shortly after. I told my rheumatologist that I am not getting any vaccines for the time being and he did not give me any flak about it when I explained my reasons. I think in general vaccines are good but they aren't always appropriate for everyone. I haven't had any colds or flu since 2021. I don't fly on planes. I do shop, eat in restaurants and attend meetings as much as I want.

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I just cancelled my vaccine appts after doing more research. I need more time to evaluate the risks for me. My PMR started three weeks after my Covid and flu vaccinations last November. It didn’t occur to me at the time they may be related. After much research and information from this group, I’m not willing to take the risk right now. I don’t mind wearing a mask in high risk situations or avoiding them altogether. My friends and family totally understand. I also have not been sick in the past five years. Fingers crossed!

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My turn…….I feel your pain!
My Rehumy suggested Tylenol for ARTHRITIS, 2, up to 6 per day as a supplement. I found I needed to do anything I could to get relief from pain.
Exercise, even if lite is critical, don’t sit/lay around for long periods.
Yes try splitting pred dose. Try Hot tub, Pool walking.
Read very everyone writes in this blog, it’s a savior .

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @paul767, I would like to add my welcome along with @jeff97 and others. You might want to take a look at the discussion started by another member @cliffg26 - I’m Not Responding to Prednisone and I Need Advice: https://connect.mayoclinic.org/discussion/im-not-responding-to-prednisone-and-i-need-advice/.

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Hi John,
Thanks for this. I made a couple of postings on the site.
Hopefully Cliff will be in a better place.
We have so much support out there, i never thought.

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Profile picture for jeff97 @jeff97

Have you tried splitting your dose? There are a lot of threads in this forum about that. You could try taking 15 mg in the morning and 5 in the late afternoon, or some other combination. Taking the second dose later in the day might help you get through the night without pain. If that doesn't work your dose might be too low. My brother-in-law started at 30 mg.

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Thanks Jeff,
I'll definitely reach out to my Rheumatologists on splitting the dosages.
Hopefully we can come up with the right cocktail.

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Profile picture for dlb3 @dlb3

I have always been vaccinated with a flu shot until last year. I was diagnosed with GCA and PMR in November 2023. I have mild PMR that occurs occasionally and on bad days I may take an Aleve. No more prednisone. Overall I have had some healing since 2023. I am reluctant to get the flu vaccine. As I have read studies that indicate it is sometimes the adjuvants in the vaccine that will cause our auto immune system to flare. My rheumatologist, who I no longer see is OK with the flu vaccine. I have also been seen by allergist/pulmonary physicians for 40 years. I am 72 years old. The allergist suggested that I get a “regular” flu shot and perhaps split the dose with two injections spread apart, he did not recommend that I get the “quad senior” flu shot. I am sitting on a fence post, still trying to make a decision as to what to do. I would like to prevent any possibility of a PMR flare.

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The year before I got PMR/GCA, I took the 'senior' flu shot. I got very sick and felt pretty bad. Since then, I tell the pharmacist that I don't want the 'old people's' flu shot. I take it in one dose and haven't had any issues. I am on monthly Actemra infusions, which probably helps prevent any potential flare.

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Profile picture for ropnrose @ropnrose

The year before I got PMR/GCA, I took the 'senior' flu shot. I got very sick and felt pretty bad. Since then, I tell the pharmacist that I don't want the 'old people's' flu shot. I take it in one dose and haven't had any issues. I am on monthly Actemra infusions, which probably helps prevent any potential flare.

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I had the high dose (senior) flu shot and the Pfizer covid booster both yesterday. My shoulder is a little sore from being jabbed with 2 needles. Otherwise, I haven't had any noticeable reactions since my immune system is suppressed from weekly Actemra injections. That's good and bad. It's good not having unpleasant side effects, but it's bad that the shots are less effective. But hopefully if I do catch either the flu or covid, it will be a milder case.

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Profile picture for susanalka @susanalka

my PCP said no vaccines while on prednisone.

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That's weird as my Rheumatology MD said no contraindications and said to get the vaccines. I've just been started on Kevzara. We always get the flu and covid boosters in the fall and have had zero side effects or problems. We never got Covid and haven't had the flu in years. Looks like a lot of people are trying to say vaccines caused PMR.

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