Last Covid Booster in August 2022 I’ve had severe pain. Probable PMR
It’s been a journey and a difficult one to even get to this point. My arm (right) pain after shot was unbearable. Then it spread to both shoulders and hands. PCP DR told me Lupus but it could also be PMR. Took me 8 months to see the second Rheumatologist who stated probable PMR. She said full treatment is 2 years on Prednisone. Initially when I started on Prednisone it was prescribed by my PCP. Then First Specialist (R) Dr. Wanted me off it which took 3 months. Now 6 weeks off pain was worse than before. I trust the 2nd R. Dr. stated they shouldn’t have pulled me off it in the first place. In addition to this my PCP is not wanting to subscribe my Hydrocodone
And making me jump through hoops to get off of the one thing that has helped. Anyone else experiencing the same or similar? Not sure what to do.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
When my Dr. suspected PMR, he said that if I took Prednisone and was better in 48 hours, that it would confirm the PMR diagnosis. I could tell an improvement on day 1 of Prednisone and was almost pain free by day 3 and at about 1 week, I felt like a new person. Never had to have any pain medication except NSAID that Dr. prescribed. I was on Prednisone for over a year. My understanding is that PMR cases can last different lengths of time, so the Prednisone taper is different for everyone.
It's a crazy journey. And literally, I feel your pain. A while after my first Moderna booster in late 2021, I started with back and shoulder pain. In early January 2022, my symptoms were crippling. Had little use of my arms, no strength and aches all over. It took months for a medical professional to finally converge on a PMR diagnosis. Finally weened off pretisone by year end. Then jumped into physical therapy to regain range of motion and strength. Slow journey. Still at it. Much progress though. Grateful for that. I appreciate now being connected to this group. Take care.
One more insight… the first year, no one wanted to even discuss the possibility that the onset of my PMR was at all related to the COVID vaccines. Don't know that the shot caused it, but likely activated it on my system.
Thank you for sharing. I felt better right as well. However
The first Rheumatologist said, my PCP make a mistake because everyone feels better on Prednisone. I knew I needed another opinion do waited the 7 -8 months to see Rheumatologist #2. She stated the fact I was off Prednisone 6 weeks and already had same more severe symptoms again I would need full treatment most likely 2 years of Prednisone and maybe lifetime. I tolerate it we’ll so I am grateful to be on it again and practically back to normal 💪🔜✅🙏
Yes same for me. They won’t admit the Covid /Booster is more common triggering PMR in adults s 65, especially at age 70!
Sounds identical to where my pain was. Both arms. Hands, especially shoulders. Couldn’t crochet even! I love that while watching TV to simply relax. So glad to hear your making great progress. I’m starting PT soon 🔜 too!
Good luck at PT. I've learned that overdoing it aggrevated my PMR. Also, after a solid PT session, I would consistently experience a low grade fever and fatigue for about 24 hours afterward. I'd describe it as a feeling Luke my body is trying to expell some toxin. I'd love to know more about why that consistently happens.
After prostate surgery I got the 5th Covid booster which triggered the PMR. I started a 40mg Prednisone dose, now down to 30 mgs a day. Pain was gone after first dose. Lost 20 lbs. in legs and arms but working on putting my the weight back on. C- reactive protein was 336, last test was 70. Slow process.
Happy you got results! Doctors tell us we need Prednisone for PMR and when it works they immediately want to decrease, then when it comes back full force they still are reluctant to state more than probable as there are no actual tests to confirm. What do others in this group communicate to to close family and friends about this condition?
And to Doctors who cannot commit to a diagnosis, but state it’s probable cause. It feels like a contradiction, as they also steer me away from questions about Covid Booster or shots as the cause. Especially in older adults. I am not sure what to say the next time I hear this ! It’s invalidating to have severe Symptoms of PMR in shoulders, hands, arms. Then of course , they tell me that there are no actual tests to confirm but I think you need to go back on the Prednisone to treat this PMR, and your previous Dr. took you off too soon! It’s hard to explain to others so they understand too what I am going through. Any advice of what you might have experienced and how you verbalized my situation to others? Appreciate any feedback.
Hi, I'm in Australia and have the same reaction from doctors regarding any connection between Covid Booster shots (Pfizer) and the onset of what's now been diagnosed as PMR. My original doctor's reaction when I presented with the pain was, "when was the last time you had Covid"? I informed him that "I've never had Covid, as far as I'm aware" and suggested a test to confirm so, or otherwise, would be a good idea – he didn't believe it was worth doing. I did finally get a tested and test confirmed I've not had Covid. (The test was only done because I took my husband with me to the next visit and asked again!)
After another visit when my distress and pain levels were obviously noteworthy to him he placed me on Prednisone 25mg and reducing over a period of a about a month. The pain returned when I finished this routine and he finally referred me to a Rheumatologist who diagnosed PMR and, reluctantly, I'm now back on Prednisone 15mg reducing over a 12 month period.
Complicating the issue a bit is I asked original doctor for a bone density test (I'm 65, was very active, vegan) and have been diagnosed with osteopenia in the hips and osteoporosis in the lumbar spine – the Prednisone can impact on this!
Like you, the PMR affects my right arm, shoulder to wrist, hip/pelvic area right and left side, front and back of both thighs and lower back – when not on Prednisone I had no quality of life – the pain was totally debilitating – personal hygiene and just daily activities were challenging.
Prednisone has given me back a level of quality of life I can live with.
I still get varying, usually brief, degrees of early morning pain/discomfort.
How to explain to others what I'm/we're going through? My girls looked it up and just their observations of who I was and who I am now (how I move, a gasp of unexpected pain) has given them some understanding.
Perhaps direct people you need to understand what's happening to this site.
I'm learning to moderate my exercise – when you get to experience "pain free" time it's so damned easy for YOURSELF to forget you ain't what you used to be and the actuality that "oh, yeah, I do have a medical condition, it's just well masked most of the time…slow down girl".
I get fatigued if I overdo the activity and hit the bed for a welcome break.
I try and walk every day for at least an hour and do some weight bearing exercises for the osteoporosis…am limited in range of movement in right arm and weight…I'm right arm dominant…do limited range of movement squats, deadlifts, lunges a couple of times a week with 5kg weights…bicep curls with 2.5kg weights when arm permits and carry the 2x5kg weights up the stairs and down whenever I go up & down.
Everyone will be different as to which exercises, which weights/bands/aids are suitable and how often they can attempt them.
I'm about to seek a dietitian's help to get onto a well-planned diet directed at both the PMR and osteoporosis.
It's difficult at times, but trying to maintain a sense of humour helps me and those around me, watching me…the me I am now.
When trying to explain over the phone to my girls what I looked like attempting to get out of bed in the morning, pre Prednisone, I explained that it's like watching an inebriated, one armed midget trying to breakdance in bed (did I mention I'm all of 5' 1 aaaaaaaand 1/4" TALL).
I wish you, all of you, better days, much better days and thank you all for your comments – I don't feel so alone or a nutter…what we're experiencing is very real.