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.

@johnbishop

@majryan61, Some members have suggested splitting the prednisone daily dosage and taking some in the morning and some later in the day/afternoon to help with the morning stiffness. For both my occurrences of PMR I just took one dose in the morning normally between 6 and 8am before or with breakfast. I kept a daily pain log also and I was normally at 0 or 1 when I first got up in the morning and some light stretching and moving around took care of the early morning stiffness.

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Thank you and I did do that at the direction of my PCP but when I told my Rheumatologist he got mad and ask that return to once a day. He didn’t elaborate too much when I asked why, he said it has something to do the physiological make up of how cortisol releases in our body in the morning. It did help. Wondering if I should consult a PharmD?

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@marieirene

I’m beginning to think stress plays a role in flare ups. When my spouse was diagnosed with Lewy Body dementia I had a flare up

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Hi Marieirene,
I definitely agree. Stress seems to send me into an automatic flare! Hope we can both tame the beast!

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Hi,
I developed PMR within 36hrs of receiving my 2nd Pfizer Covid Vaccine. I was 58. Have been on Prednisone since April of 2021. If u have time take a look at my story. Pain & stiffness worsens with inactivity thus the increase at night. This is one of the hallmark signs of the disease. Best of luck to you.

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@marymv

Hi,
I developed PMR within 36hrs of receiving my 2nd Pfizer Covid Vaccine. I was 58. Have been on Prednisone since April of 2021. If u have time take a look at my story. Pain & stiffness worsens with inactivity thus the increase at night. This is one of the hallmark signs of the disease. Best of luck to you.

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More and more proof that the untested Vaccines are the major cause of inciting PMR....
Inactivity provoked by extreme fatigue is what makes PMR so difficult to combat. In a state of complete exhaustion, I'm up walking with a cane at 1:30AM-3:00AM, along with a prescription anti inflammatory....to relieve pain and stiffness. Falling into a recliner (that I was forced to purchase due to this PMR), I am then hopeless to sit more than 1/2 hour before having to shove this nasty body back up to walk some more.
Driving, even for 10 minutes shoots pain up my right shin....I'm learning how to utilize my left foot for the gas pedal.
This is all INSANE. I regret that I didn't follow my GUT, and say NO to the vaccines. I've not taken any vaccine since i was a child, and remained healthy. No flu. No pneumonia. No Shingles. But our government all but FORCED it upon us, and in some cases, actually DID force it upon many. (they are still doing it) Pfizer/Moderna have become rich, along with certain other people I will not name here. Curses to all of them.

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To each of us who have relapsed (and I am in that group) please research and try MSM. I am sure that it has prevented my relapse again due to other challenging situations. (physical injury, diagnosis and surgery for cancer, stuff). It has lots of research, no side effects that I have experienced and is easy to get. Needs no prescription.

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@flymetothemoon

I also had a similar situation to yours. My PMR started before vaccine, however, there is some chance that the vaccines may prolong it. I am on second taper after 3 years, down to 3 mg. If my blood tests in 2 months still show elevation in Sed Rate and CRP I will begin Methotrexate as continue tapering off Prednisone. Monitoring bones with exercise, diet and Reclast Infusions. Had my 2 vaccines and 1 booster. Not getting a second one or the new vaccine. Some doctors pushing that having only being tested on 8 mice. Who knows, but my husband is a doctor and we all follow his lead for now. Feel better.

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My husband is an internist too, but I got my own PCP last week. I am about 2 months into this, 3 weeks since I diagnosed myself and started myself on 20mg, lol. I was out of town for 8 days, alone and I never leave home without prednisone. Labs were near normal but I couldn't get out of bed, hips and shoulders.
My Moderna shots 2 and 3 made me ill, 3rd was like a vagal collapse, faint, violent vomiting, diarrhea. I will never get another. I blame the PMR on the covid vaxes messing up my autoimmunity, had lupus in the past. I'm 71.

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@raven1955

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.

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I'm taking 5mg at 6am, 5 mg at noon and 10 mg at 6pm the last few days. A 20 in the early morning leaves me fainting with pain at 3am.
Dropping to 15 in two weeks, which I don't think is a good idea, but I added 400 mg Plaquenil 3 days ago as we had it on hand. The Facebook group has many people taking it as a steroid sparer. Familiar with it as I took it for 7 years with lupus.

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@virginiaj

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

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Age 71, my PMR started when I was playing excessive Pickleball in Feb. I loved getting in shape, the laughter, the friends.
I just knew I suddenly needed two hip replacements and a shoulder, which had been hurting for a year due to osteoarthritis, rotator cuff. My hips have never hurt.
When I woke up March 15 with the other shoulder as bad as the right one, I knew it was PMR. Could not get out of bed, beached whale.

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@sandmason

Age 71, my PMR started when I was playing excessive Pickleball in Feb. I loved getting in shape, the laughter, the friends.
I just knew I suddenly needed two hip replacements and a shoulder, which had been hurting for a year due to osteoarthritis, rotator cuff. My hips have never hurt.
When I woke up March 15 with the other shoulder as bad as the right one, I knew it was PMR. Could not get out of bed, beached whale.

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Sorry to hear of your increased pain. I have been on prednisone 1 year, very low dose. I had been on 1 1/2 mgs , with morning pain until I took my prednisone and was actually pain free for 10 days a few weeks ago. Went to 1 mg, got a stomach virus, and now I am back where I started. I guess the virus caused a flair or I decreased too quickly. PMR is relentless!

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@sandmason

My husband is an internist too, but I got my own PCP last week. I am about 2 months into this, 3 weeks since I diagnosed myself and started myself on 20mg, lol. I was out of town for 8 days, alone and I never leave home without prednisone. Labs were near normal but I couldn't get out of bed, hips and shoulders.
My Moderna shots 2 and 3 made me ill, 3rd was like a vagal collapse, faint, violent vomiting, diarrhea. I will never get another. I blame the PMR on the covid vaxes messing up my autoimmunity, had lupus in the past. I'm 71.

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I also blame the Covid vaccines for my PMR. I can't take boosters so I wear a mask when inside. Hate that!!

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