Anyone diagnosed with PMR after the Covid vaccine?

Posted by mellee @mellee, Feb 28, 2023

I received the Pfizer covid vaccine and had horrible joint pain 8/10 as a side effect. I reported it online. 7 months later I developed horrific joint pain in my shoulders, hips and knees(same pain after the vaccine, but worse). I was ultimately diagnosed with Polymyalgia Rheumatica. I wish there was a site to go to and report these things.
I am only 57 and was a runner most of my life up to the age of 51, so I am not in horrible shape for my age. The pain from that PMR was very disabling. I am now on Hydroxychloroquine 200 mg BID and Prednisone 10 mg a day. Not happy about having to take more medications.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@janiceem

Here is a typical day:
Breakfast: homemade oat granola with walnuts, almonds, pumpkin seeds, cinnamon, ginger, and gogi berries--no added oil, but I do add a little organic maple syrup before baking it lightly. (don't bake the goji berries). Then I top with berries--usually organic blueberries. I use Silk unsweeetened soy milk. Note that the cereal isle in the grocery store is really the dessert isle--highly processed with a lot of sugar. And dairy milk is really best for calves--not humans.

Lunch: either leftovers from dinner or a slice of organic whole wheat bread that contains walnuts and cranberries. I toast it and add some organic grass-fed soft butter that is mixed with avocado oil. Plus a piece of fruit--orange or banana, and maybe a hard-boiled free-range, cage-free egg. Or sometimes I will eat nut crackers with organic tumeric hummus. Note that I normally avoid most breads, especially white bread, or any processed food.

Dinner: Before dinner I drink a green smoothie made with organic greens, raw beet, avocado and green juice that is not highly sweet. This is because I am not a fan of these foods and it is easier to drink them than eat them. If you choose to eat a salad, use only a little olive oil (vinegar is fine). All other oils should be avoided, except for avocado oil.
Microwaved sweet potato, cruciferous vegetable, and a small portion of organic, naturally raised meat, poultry, or fish. Wild salmon is high in omega-3's. If I have dessert, it is usually berry pie with most of the crust removed or some fruit topped with unsweetened grass-fed yogurt. This is normally the only dairy I consume because it at least offers you some probiotics, which are essential to gut health and your overall health in general. 70% of your immunity starts in your gut! Note that your gut microbes eat fiber, so eat all your food whole.

Supplements: Omega-3's twice a day, turmeric with black pepper twice a day, and Vitamin D when I'm not out in the sun,
Hope this helps.

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Thank you for taking the time to include all those details. Our diets are somewhat similar so good to know I am on the right path.

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@milld835

Yes. First Pfizer vax May 2021. Pain in neck and shoulders all that summer. I bought several pillows, thinking that was the problem. It was not. Second Pfizer vax August 4, 2021. Went on a little car trip with family on August 14th. After the first night at the motel, woke up unable to move. Still thinking it was either the bed or the pillows, in so much pain got into the tub and was unable to get out. I had to get my daughter to help me. It escalated from there, to carpal tunnel-like symptoms in my right hand. It kept going numb from thumb right around to middle finger (which has never lost the stiffness completely). Was wearing a carpel tunnel splint, so I could use the computer mouse (working from home). Family doc (who has since retired) poo-pooed it as "old age stiffness". Eventually, I could do not even the smallest thing. Had to take unpaid sick leave from work. Went to a Chiropractor, physio. Nothing was working. Could barely sit on the toilet and had to get a riser seat; could not reach around to clean. Did some research. Asked the Chiro if he thought it could be PMR or RA. He didn't think so. Finally my pharmacist suggested I get blood work done to test for RA. I convinced the GP for the bloods and CRP was up to 42 (which he did NOT notice). He finally in December 2021 urgently referred me to a Neurologist, who diagnosed PMR (Jan. 2022) and put me on 20 mg Prednisone. Immediate relief. Recently (Jan. 2023) I had a GCA scare and put up to 60 mg. Prednisone. Had TA biopsy done, which appeared to be negative, although the Prednisone could be "helping" that. Ophtamology says eyes are good.Right now I'm dealing with extreme, extreme fatigue, exhaustion, weakness and sweats, sleeping for 2 hours in the afternoons after a brief walk around a store; waiting for blood work results for Glucose (never a problem in the past) and of course SED and CRP. I now have no GP and the unreachable Rheumatologist. Prior to the vax in May 2021, health problems were NIL. There are many with the same or similar stories.

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Hi, forgive me but I feel your experience as mine has been somewhat similar. I retired from Pfizer in 2019 after 20 years as an IT generalist. That said, they were very good to me hence I was not that quick to think it was the vaccine. I had two shots March of 21 and of course I wanted Pfizer. In April I thought that a severe case of Lyme returned. I had pain on shoulders, arms, all the way down to my hips. In May we were realizing that the doxycycline was doing nothing. To be honest, it never did as I had to have antibiotics intravenously several times in order to clear it from my spine.
Around early May my doctor gave me some prednisone and immediately I felt better. About a week before my daughter’s wedding I was feeling the same and the doctor gave me another script of prednisone which helped me through the wedding. A long story short, I went to the emergency room a few weeks later and I could barely walk. There they gave me a spinal tap to make sure it was not Lyme. I was in so much pain, that I did not even feel the spinal tap. In the hospital they gave me a 1000mg of prednisone a day - and when I left I was told to see a rheumatologist and to take 40 mg until I saw him. It has been almost two years, and I am down to 3 mg. The last year I have dropped one mg at a time, and twice I had to go back to the higher dose. The good news is I am slowly getting better, and the issues you described are spot on. Everything from sweats, to chronic fatigue I have experienced. One other thing I have experienced has been weakness - sometimes I feel like I have no strength, and then other times it comes back. I pray you get well, and I hope this has helped you.

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@npostusa

Hi, forgive me but I feel your experience as mine has been somewhat similar. I retired from Pfizer in 2019 after 20 years as an IT generalist. That said, they were very good to me hence I was not that quick to think it was the vaccine. I had two shots March of 21 and of course I wanted Pfizer. In April I thought that a severe case of Lyme returned. I had pain on shoulders, arms, all the way down to my hips. In May we were realizing that the doxycycline was doing nothing. To be honest, it never did as I had to have antibiotics intravenously several times in order to clear it from my spine.
Around early May my doctor gave me some prednisone and immediately I felt better. About a week before my daughter’s wedding I was feeling the same and the doctor gave me another script of prednisone which helped me through the wedding. A long story short, I went to the emergency room a few weeks later and I could barely walk. There they gave me a spinal tap to make sure it was not Lyme. I was in so much pain, that I did not even feel the spinal tap. In the hospital they gave me a 1000mg of prednisone a day - and when I left I was told to see a rheumatologist and to take 40 mg until I saw him. It has been almost two years, and I am down to 3 mg. The last year I have dropped one mg at a time, and twice I had to go back to the higher dose. The good news is I am slowly getting better, and the issues you described are spot on. Everything from sweats, to chronic fatigue I have experienced. One other thing I have experienced has been weakness - sometimes I feel like I have no strength, and then other times it comes back. I pray you get well, and I hope this has helped you.

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Nothing to forgive and yes our journies are very similar and I'm so glad you're able to wean down at this point. The pain was excrutiating for 5 months prior to diagnosis and Pred. This morning, so far, as a weakness morning. Probably because I lowered the Pred by 5 mg. yesterday (which would seem a lot) but with a diagnosis of 'no GCA' it would do me well to come down from 60 mg. asap. This too will level off I'm sure. I pray you continue to get well. The days of no strength, we rest. Your post has definitely helped. Thank you so much.

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Thank you all so much for your comments and input. I am so sorry that any of us had to experience this pain. I live alone and have 2 dogs. Prior to diagnosis, it was so scary to think 'this is my life'. The pain was excruciating in the mornings. With no one to help me shower or get dressed, I would just cry throughout the process. 3 months total of pain prior to diagnosis. I started in January taking prednisone 5 mg in the morning and 5 mg at night. I have tried to reduce it, but the pain immediately comes back. I hate daily prednisone, but am so thankful it helps with the pain.

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I to got pmr after my first Pfizer shot April 2021. I was 72 and in great health. Golf 3 times a week, downhill skiing in the winter, cycling, and working out. Within a couple of weeks had groin pain which I thought was a pulled muscle. 2 months later after physio, trip to emergency and about 24 hrs away from being a complete invalid while away from home visiting family I got in to see my Doctor. Immediately he told me I had pmr got an emergency blood test and confirmed it. I stared on 40 mg of prednisone I am now down to 4.5 mg with one flare that set me back 6 months. I live in Canada but I understand there is a class action law suit in the USA over this very issue.

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I need to read up on this class action lawsuit.....

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After 12 years in remission my PMR returned with a vengeance, after my Pfizer vax and booster.
My Sed rate was 62 and my CRP was 132!!

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My PMR symptoms started within 3 days after my last Moderna booster on Oct. 9, 2022. Severe joint and muscle pain in shoulders, elbows, wrists and hips to the point I could not sleep. Labs confirmed it was PMR. Doctor referred me to integrative doctor and now on 1/2 CBD/THC gummy plus melatonin every night. Went through a round (15 days)of prednisone when I was going to be entertaining family for a week and that provided enough relief to be able to enjoy my family. I see medical doctors who are very conservative and she does not want me on prednisone more than twice a year. I sleep better with the gummies and make an effort every day to walk on the treadmill at least 2 miles and then 2 miles on elliptical. Pain is worse in the morning and I still am awakened with it in the middle of the night but believe the THC has been a lifesaver! I am not able to do the fitness routine until afternoon but believe it also helps. I have never used marijuana nor have I ever been tempted by it, but I truly believe it has helped me. Only one half a gummy a day so I am not abusing this treatment. As my doc says, it is better than being on the stronger stuff!

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@sususi

There is no way I am ever having another vaccine, my one Pfizer booster has reduced me to a frail person with heart rhythm problems and this awful PMR pain. I was ok before.

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Since PMR is an immune system response, I will question getting any vaccine from here on out.
My dad was a physician and so I grew up trusting whatever they recommended.
Hope you are healing. I know how frustrating the pain is. Just trying to pull a shirt over your head!
I have started some supplements with my functional Dr. I am hoping to get this inflammation under control. Liver detox, gut repair and some peptide injections. Looking for a long term solution. hoping I have something positive to post in a few months.
Hang in there!

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