1. < Polymyalgia Rheumatica (PMR)

Two weeks in, frightened by meds, PMR and COVID Booster Shot

Posted by hurtinunit @hurtinunit, Oct 27, 2022

Hi! I’m 59 and WAS perfectly healthy and very active up until 2 months ago. Gosh, am I happy to have found you all. I was diagnosed (sort of) two weeks ago and was started on 25mg of Prednisone which provided great relief but I have many worries about side effects. I’m now down to 10mg and although still in less pain than before the meds, during the nigh the pain gradually returns. I take the meds in the morning and a few hours later I’m better again. Is this normal for PMR? Also, I’ve had 3 COVID vaccines and am due for the next booster but yesterday I happened to stumble upon some research on the correlation between the COVID booster shots and sudden onset PMR. Is this what’s happened to me?? I’m not anti-vax by any stretch of the imagination, just a little (lot) concerned. By the way, I’m seeing an internist next week to confirm diagnosis and discuss the way forward. Any advice, recommendations or help you can provide is welcome.

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

vandyms1974 | @vandyms1974 | Oct 31, 2022
In reply to @keelin "I believe strongly that my PMR is caused by the vaccines. ( 2 Pfizer and one..." + (show)
@keelin

I believe strongly that my PMR is caused by the vaccines. ( 2 Pfizer and one Moderna Booster). I am not alone as a lot of people have been getting this since the vaccines.
I would NEVER take another COVID vaccine!

Jump to this post

Agree!!!

REPLY
1 reply
marieameehan | @marieameehan | Nov 1, 2022
In reply to @vandyms1974 "Agree!!!" + (show)
@vandyms1974

Agree!!!

Jump to this post

Hi,
Since I also have PMR I dont plan on another covid vaccine!
I am now down to 5mg Methylprednisone and sm wondering if it is safe to take flu shot ????
Thank you,
Marie Meehan

REPLY
bb1 | @bb1 | Nov 2, 2022
In reply to @brad64 "My very first Covid vaccine caused my PMR. I got my first in June 2021 on..." + (show)
@brad64

My very first Covid vaccine caused my PMR. I got my first in June 2021 on my sons birthday. It took about 24 hrs and I felt like my neck was out. Pain throughout my hips back neck and headache. I am still battling, started with 15 mg prednisone, relapsed back to 20 mg and now down to 10 mg. It’s a long haul for most folks that I have read about on here. I too worry about side effects but what do you do? I am trying to ramp down by 1 mg every two to three weeks. Every time I drop 1 mg my body aches and pains flair for a day or two. Not severe, you just have to keep going and my body has been correcting. I Am told from 10 down will be the real hard times. Never give up. If you start hurting bad, go back up for A few days or a week and keep working at it. I split my 10 mg dose. I take 5 in the morning and 5 at supper time and that helps a lot.
I cannot do another vaccine as it scares the hell out of me. Good luck. Talk to lots of good folks on here. Lots of knowledgeable people.

Jump to this post

Hi there. From 10mgs,reduce by 1mg per month,mark your calendar at start reduction date.
If you mark your date each month, it gives you something to shoot for.
Good luck.

REPLY
papabearpaddles | @papabearpaddles | Nov 3, 2022

You said you went from 25mg of pred to 10mg in 2 weeks. That is a very rapid taper and the pain is likely due to the PMR activity still being higher than what your pred dose will handle. The American College of Rheumatology guidelines recommend 12.5 to 25 mg as a starting dose for 2-4 weeks and then if there is clinical improvement, tapering to 10mg over 4-8 weeks. Each clinician will have their preferred approach based on your presentation and their experience but if the approach is way off of the guidelines I would ask why. I started on 15mg and then dropped by 2.5mg per month until at 10mg at 8 weeks. Then 1mg per month taper until 5mg which is when it slows down. I am currently on 4mg for the past 4 days and seem to be doing well. The taper I am on now will take 6 months to go from 5mg to 0 assuming no flares.

Check out the guidelines here: https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

REPLY
hurtinunit | @hurtinunit | Nov 3, 2022

I’m actually doing well at 10mg but I had to split it between morning and afternoon in order to control the pain at night. I finally saw the specialist yesterday and he also found the taper to be quick but said that if it’s working to continue on this path. Hopefully it keeps up.

REPLY
1 reply
flymetothemoon | @flymetothemoon | Nov 3, 2022

There are more people with issues about the vaccines causing problems. I got PMR prior to vaccine but
I have other friends that developed other medical issues after second booster. One is no longer here and the other in ICU for month now. Not sure if there is a connection, nobody knows. I myself am not in a rush for that second one. Hospitals and doctors pushing that along with new vaccine that’s been tested on 8 mice. Who knows. Hope you feel better. Long journey. I’m going on almost 3 years and second taper. Down to 3 mg again and feeling ok but time will tell.

REPLY
sharonanng | @sharonanng | Nov 3, 2022
In reply to @hurtinunit "I’m actually doing well at 10mg but I had to split it between morning and afternoon..." + (show)
@hurtinunit

I’m actually doing well at 10mg but I had to split it between morning and afternoon in order to control the pain at night. I finally saw the specialist yesterday and he also found the taper to be quick but said that if it’s working to continue on this path. Hopefully it keeps up.

Jump to this post

I also found that splitting the dose was helpful. Best of luck to you!

REPLY
munchie | @munchie | Nov 4, 2022

first of all my professional opinion is that you went on a very rapid taper. secondly once you get to 5mg side effects are nil..i have had covid vaccines[all but the bivalent which is not due yet] without any flaring of pmr..i have had the pmr for 2 years and 3 months and am at 4mg a day..there have been ups and downs but this malady requires patience

REPLY
1 reply
cookiegirl1944 | @cookiegirl1944 | Nov 4, 2022

I was diagnosed a few months ago with PMR. The doctor put me on 30 mg ( offered me to start out at 25 mg) @nd then gradually reduced the rate/dose. I am afraid your provider has not followed standard guidelines accepted for reduction. Moving from 25 mg to 10 as quickly as you are doing increases your rate of relapse plus does not meet the standard of care. Now relapses can happen even if the provider uses the guidelines but the risk is lower. I suggest you google the dosing guidelines, read them and then make an appointment with your provider right away. Let me know how things go. I still have pain and stiffness and not sure how to get rid of it. Where is your pain?

REPLY
2 replies
cookiegirl1944 | @cookiegirl1944 | Nov 4, 2022
In reply to @munchie "first of all my professional opinion is that you went on a very rapid taper. secondly..." + (show)
@munchie

first of all my professional opinion is that you went on a very rapid taper. secondly once you get to 5mg side effects are nil..i have had covid vaccines[all but the bivalent which is not due yet] without any flaring of pmr..i have had the pmr for 2 years and 3 months and am at 4mg a day..there have been ups and downs but this malady requires patience

Jump to this post

Do you still have pain and stiffness?

REPLY
View MoreView Less
Please sign in or register to post a reply.