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.

I think that in my case the onset of PMR was due to various stressors and a stomach virus. I was a carb and sugar fanatic my entire life and I paid the price with stomach and gastro issues. My body turned against me in May 2022 and suddenly I couldn’t move without excruciating pain. My GP ran a blood test and I had elevated ESR so he put me on 9 days of Prednisone starting at 40mg down to 10mg on 9th day. It was an awful withdrawal for me and I swore never to do Prednisone again. I questioned my doctor whether it could be PMR and he said I was too young for that. I had just turned 65. A month later he ordered more blood tests and a chest X-ray. Well the markers were astronomical. My GP said I needed a rheumatologist who was strictly by the book and could not answer any of my concerns….said I should get an endocrinologist. It is frustrating for sure. I started Prednisone in late August at 15 mg and now I am down to 10mg. I have drastically changed my diet. Little to no sugar and under 50 carbs a day. I was sedentary and now I swim 3 times a week. I sweat at night and I have insomnia but that’s the worst of it. It is trial and error and keep on trying new things. I have aches but nowhere near as bad as the initial onset. That was brutal. Good luck to try to remove as much external stressors as possible.

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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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Agree with Raven 1955. Good advice.

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@gingerraspiller

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.

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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!

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@gingerraspiller

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.

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Don’t! Too much evidence is pointing to the vaccines being the protagonist for PMR!

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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.

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In reply to @linneyshop "what's LDN?" + (show)
@linneyshop

what's LDN?

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Low Dose Naltrexone- I've been posting about it for some time now and have been on it since mid 2019. I believe it to be really helpful to multi autoimmune folks like myself. It is a subtle pain reliever and an anti-inflamatory. There are lots of articles about it, I suggest reading up on it and you will know more than most doctors. Personaly, it has been a miracle drug for me.

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@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!

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ditto! i'm an active 76 year old who loves to exercise. PMR changed my lifestyle ... it all started after the vaccine and boosters 2 moderna 1 pfizer. class action suite, I wish!!
D

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@suetex

Low Dose Naltrexone- I've been posting about it for some time now and have been on it since mid 2019. I believe it to be really helpful to multi autoimmune folks like myself. It is a subtle pain reliever and an anti-inflamatory. There are lots of articles about it, I suggest reading up on it and you will know more than most doctors. Personaly, it has been a miracle drug for me.

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Thanks, I will check out the information

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I just met with my Rheumatologist last week after my 4th failed prednisone regimen, here we go again. Anyway, he said there is now enough data to suggest the vaccines/boosters most likely advance PMR, meaning, I was destined to get it at some point but they accelerated the process.

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So sorry you have to deal with PMP. Your story is much like mine. I was healthy and got the Covid vaccine and shortly started having pain in my shoulders and later hips. Diagnosed with RA, but no pain in fingers, joints, etc. Now I am on prednisone with a diagnosis of PMR.
My rheumatologist advised me NOT to get any boosters nor other vaccines. So, I wear a mask when in crowds all the time. I truly believe the vaccine started my problems.

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