Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I'll be brief replying to Steve. 75 year old, male. 6 year with PMR
I have a parallel experience. PMR, 3mg pred. Moderna first, shot, 2 weeks ago.
Almost instant pain returned worse than before. Refused to beleive it could be vaccine so just limped around in pain from hips and knee. After 12 days I had enough. Moved up to 10mg Pred and relief in 5 hours. But now what? Clearly i will get down as best i can. In Canada here the 2nd jab is 4 months after the first.
The big question is the efficacy of the vaccine now that the connection between the Pred and the Vaccine has revealed itself. It's a bit late for me to go back for a degree in epidemiology.

I am glad to have found this place. I am Ken, 75 years old. Living on Vancouver Island. I was diagnosed with GCA about 6 years ago. This was treated and turned into PMR. I have been unable to get prednisone down below 3mg/day.

Hello @golfbarmie, Welcome to Mayo Clinic Connect. Thank you for sharing your journey with GCA and PMR. My PMR is currently in remission but my rheumatologist was always concerned about the possibility of me also having GCA. When my PMR was active he was also checking me for symptoms of GCA. I've had both Pfizer COVID vaccines but fortunately no flares in my PMR.

There are a few other discussion for GCA that you might be interested in:
- Giant cell arteritis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/
- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/temporal-arteritis-1/

Have you tried going down in your prednisone dosage by 1/2 mg? I had trouble tapering below 1 mg for my first occurrence of PMR and my rheumatologist suggested splitting 1 mg tablets to see if that helped tapering. So I went back and forth between 1 mg and 1/2 mg for six months before I was finally able to taper off with only minimal discomfort on my pain scale.

Thanks for your reply. I have tried all sorts of trickery to drop below 3mg but am ok with 3mg It doesn't worry me though my rheum. doc is not happy at my attitude.
I am more concerned now with the way Moderna caused a big flare up. I am not given to react the way I did with a jump to 10mg pred. The question of course is when someone is taking pred do we have protection from Covid after the vaccine. And if one reacts the way I did by upping the Pred is that making efficacy lower.
So far I have not come across any answers here. Tomorrow I call my rheumatologist and to be honest I will be surprised by an answer. This is all new.

@golfbarmie, some of your questions regarding prednisone and vaccine efficacy were answered in a recent Q&A with Mayo Clinic's Dr. Gregory Poland, an infectious diseases specialist.

Watch the video to hear his answers to these questions:
Q: 4:52 Should people who are immunocompromised or have immune diseases be vaccinated?
Q: 6:12 For the immunocompromised should they be tested for antibodies to make sure that their
vaccine was effective?
Q: 6:47 Should those with immunosuppressants should they take medicines like Prednisone?

- Rapid pace of COVID-19 (3/15/2021) vaccinations https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/rapid-pace-of-covid-19-vaccinations/

Also see these related questions and answers in this video.

Q: 4:05 What are normal reactions to the vaccines? How do I know that my reactions are
normal? How do I know what to do about it?
Q: 7:05 How do you know the difference between what is an immune response, which is what
we want, and what is an allergic response?
Q: Does the second dose promote more of a reaction or are we getting something different? Why
do we react differently?
Q: 10:20 How do you explain not having a response or a very mild response?

Tackling the Latest about Covid-19 (2/16/2021) https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/tackling-the-latest-covid-19-topics/

Hello Coleen, Thank you pointing a video out however which video are you referring to. The doctor has several.

If you click each of the links in my previous post, you'll be taken to the videos. But allow me to embed them here:
Rapid pace of COVID-19 (3/15/2021) vaccinations
https://youtu.be/xwLoR4o5CuQ

Tackling the Latest about Covid-19 (2/16/2021)
https://youtu.be/SlKse3_WvDw

PMR is a difficult diagnosis..i say this as a physician[retired] because it is not an inpatient diagnosis, unlike GCA..it is seen in our training as an outpatient if you do a rotation through rheumatology elective..i myself suffer from PMR and almost underwent hip replacement because of misdiagnosis by an orthopedist..A rheumatologist made the diagnosis literally in 3 minutes..some caveats learned are if you have any joint pains whatsoever, seek the help of a rheumatologist and secondly embrace the idea of a prolonged slow tapering of steroids

I'm new to this group and am glad to be part of a discussion by people that actually have PMR and know what it is like to live with this. I was diagnosed in January 2021, primarily by my own research online and mentioning it to my primary care physician, then by a rheumatology specialist. At this point I could barely walk, couldn't drive, barely could comb my hair. I initially was put on 20 mg. prednisone, which relieved my symptoms within 48 hours. I am currently on 10 mg. prednisone daily and 300 mg. hydroxychloriquine daily but am having a lot pain in my upper inner thigh. Getting up from sitting is agony and walking if very painful. Mild pain in neck and shoulders also but is manageable. I did increase prednisone to 12.5 mg. this morning so will see if that helps.
Does anyone have experience with turmeric helping the inflammation? I tried it but didn't see much difference. I'm hesitant to try any OTC anti-inflammatory remedies as you never know just what is in them.

Hello @arribasally, Welcome to Mayo Clinic Connect. One of the big problems a lot of us have when we are diagnosed with PMR is trying to taper off of the prednisone too quickly. Each of us are different but the name of the game when tapering off of prednisone is to listen to your body and not go down too fast. Since you were diagnosed in Jan 2021 and started at 20 mg prednisone and are now at 12.5 (up from the 10 mg) did the pain show up when you dropped to 10 mg or had you been at 10 mg for some time? Did your rheumatologist suggest a specific tapering schedule?