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

From what I've read it does appear that some people have come down with PMR right after having covid shots. Is it the cause for some? It appears that way but I'm not informed enough on that subject to say.
I am concerned that you have dropped your prednisone dose from 25mg to 10 in just a couple weeks. That flies in the face of any recommended reduction rate. Usually a reduction of 10% or less every 3-4 weeks is more common. This isn't a race to get off prednisone, it's reducing at whatever rate that keeps the PMR inflammation and pain under control. Reduce too fast and the pain will let you know! Don't control the pain/inflammation and you'll flare up and start over at a higher dose. Pain is usually an indicator that your dose is too low. I've read that the body introduces a new batch of inflammation every night about 3-4 am. I take my prednisone in the evening which has kept the pain at bay overnight and when I get up. The down side is prednisone is great at messing up sleep patterns at night if taken in the evening but the right dose should then keep the pain controlled. If you do have PMR this is something that is going to take time, carefully controlling the dose to avoid flares and setbacks.

I believe somewhere around 20-30% of those diagnosed are able to get past PMR in around 2 years time. The average was said to be over 5 years and I have talked to some long timers who have had it around 15 years! Doctors often seem to fixate on having one off of Prednisone in 2 years time. While that'd be great it often flies in the face of reality, that a person isn't able to control the pain and get off prednisone that quickly. The cThere's lots of valuable information at this site and healthunlocked.com for PMR sufferers.

Thank you for the info. I’m totally lost at the moment in this adventure. Your comments will help guide my questions and comments when I meet with the Internist next week. BTW, I also thought that the reduction in meds was a little quick. That said, I think that the GP that I saw was not terribly familiar with prednisone and wanted to spare me any unnecessary side effects while awaiting the consult with a specialist.

I’m on my 3rd bout of PMR, the first when I was 57. I was on prednisone for 2 years at that time and had a 12-year remission. It recurred in my early 70’s and I tried to reduce prednisone in 10 months, however, it started up a few months later and currently on 2 mg and approaching 3 years. When I was on larger doses (10), I split the dose between morning and evening, now take the 2 mg dose in the evening. My PMR started several months before Covid. I have had all the Covid vaccines, flu shots, etc, without it getting worse. My first bout of PMR started the day after I did a 5-mile run/walk at a faster pace than usual. I was stiff the next day and it got progressively worse until I was diagnosed. It is a mystery disease in many ways. At this point, I am almost 76, on 2 mg of prednisone and will soon start decreasing to 1.5. Not as worried on the small dose

Hi, I’m just a bit “ahead” of you: perfectly healthy, very active till about 3 months ago. And then bam! PMR! I researched and tried to stay off prednisone by fasting 2 days and adopting a Keto diet. It helped for a couple of weeks, but symptoms grew worse again, so I am now on 10 mg. prednisone (3 weeks into it.) It’s enough to make me feel almost 100%, just a little pain in one shoulder if I overextend it. So far no side effects!

Sticking with Keto as some people have had success getting of prednisone sooner with it.

I’ve wondered about the possibility of Covid and/or vaccine connection too. I had my 3rd shot in April, got Covid mid June, and PMR followed in July. I also had a lot of stress at that same time. Who knows?

I’m researching LDN as an option to wean off prednisone also.

i too was diagnosed with PMR after covid shot. I've had boosters (3?) but i am holding off on this last one. I was a very healthy active 75 yr old until these shots! I have tapered and now down to 5 (two more daze til 4) but so frustrated.... just find a rheumy that u can talk and discuss,(difficult to find for some reason) aside from these wonderful groups... wishing everyone well
Dianne

Thanks for the Keto plug. It's definitely something to consider along with the Prednisone. I think I'll also do some research on LDN although at this point, never having taken medication, I'm pretty much afraid of everything. As for the Covid shot, I have also been under a lot of stress with aging parents with dementia so this could have made me particularly vulnerable to any and all side effects of the vaccine.

Very often stress is mentioned by people as the "trigger" that started their PMR.

I am 64, active, healthy. I believe my PMR was triggered by my 4th Covid vaccine. I had 3 Pfizer shots but the 4th shot was Moderna. My symptoms started right after the Moderna shot. I started at 40 mg. Currently at 15 mg.
I am not getting any vaccines while I have PMR. May not get anymore Covid vaccines ever.

Tammy, I sent you some info about LDN by private message. My first time to try that so I hope you received it? Let me know if you did not.

Sue

what's LDN?