When in PMR remission: What's your experience with covid vaccine?

Posted by pacarolyn @pacarolyn, Oct 21, 2022

I have delayed getting any of the first Covid vaccines because I was waiting for the NOVAVAX vaccine that was more traditional in its development. It is now available and approved for use. Not many pharmacies have it but COSTCO does. Has anyone gotten this vaccine. What has been your experience so far. It requires two shots, no booster series mentioned but can be taken as a booster for other vax.
https://www.cdc.gov/vaccines/covid-19/info-by-product/novavax/index.html

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@davidsonk

I know my Covid vaccines gave me PMR. I never have had any problems until after the vaccine, and it just got worse and worse... my dr diagnosed me with PMR....

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Likewise, except mine was not Moderna.

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I guess I'm one of the fortunate ones. My PMR is in remission and I also have small fiber peripheral neuropathy. I've had both Pfizer COVID vaccines and the first booster and no PMR flares or PN flares. Guessing maybe genetics and your autoimmune system may play a big part. Hoping everyone can find some relief for their symptoms.

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I’m in Australia. Until last year I had not had PMR.
My first two vaccines were Astra Zenica, then in Feb of 2022, I had a Pfizer booster. Within 8 days I developed the symptoms of PMR. PMR was diagnosed about three weeks later. I started at 15mg Prednisolone but was hospitalised for tests due to escalating neck and jaw pain - symptoms of GCA and the dose was increased to 60mg which thankfully controlled the pain, but gave me the usual swag of Pred side effects. After a temporal artery ultrasound, CT and PET scans the medical team concluded it was probably not GCA. ( I had history of cervical joint issues but not this degree of pain) Pred was reduced quickly over 7 weeks to 12.0mg and then after dropped by 1mg/month. Early on I had some small amount of pain return with the drop but that disappeared after a few months. Thankfully I’m now down to 1mg. Fingers crossed for the finale!
I read of some research on rats with induced RA where Pred and Curcumin had been administered together producing better results than either taken separately so along with the recommended vitamins and minerals I took 2 Bio-Curcumin Turmeric 16,500 daily and mostly adhered to an anti-inflammatory diet. Don’t really know whether the Curcumin contributed or not to the smooth taper.
Now the new Omicron specific mRNA vaccine is available and my question is - should I take it or not?

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@bkerry

I’m in Australia. Until last year I had not had PMR.
My first two vaccines were Astra Zenica, then in Feb of 2022, I had a Pfizer booster. Within 8 days I developed the symptoms of PMR. PMR was diagnosed about three weeks later. I started at 15mg Prednisolone but was hospitalised for tests due to escalating neck and jaw pain - symptoms of GCA and the dose was increased to 60mg which thankfully controlled the pain, but gave me the usual swag of Pred side effects. After a temporal artery ultrasound, CT and PET scans the medical team concluded it was probably not GCA. ( I had history of cervical joint issues but not this degree of pain) Pred was reduced quickly over 7 weeks to 12.0mg and then after dropped by 1mg/month. Early on I had some small amount of pain return with the drop but that disappeared after a few months. Thankfully I’m now down to 1mg. Fingers crossed for the finale!
I read of some research on rats with induced RA where Pred and Curcumin had been administered together producing better results than either taken separately so along with the recommended vitamins and minerals I took 2 Bio-Curcumin Turmeric 16,500 daily and mostly adhered to an anti-inflammatory diet. Don’t really know whether the Curcumin contributed or not to the smooth taper.
Now the new Omicron specific mRNA vaccine is available and my question is - should I take it or not?

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Welcome @bkerry, I would probably ask my doctor the should I take the new vaccine or not based on your current health conditions. Here's what Mayo Clinic recommends:
-- COVID-19 vaccine guidance from Mayo Clinic: https://www.mayoclinic.org/coronavirus-covid-19/vaccine

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@bkerry

I’m in Australia. Until last year I had not had PMR.
My first two vaccines were Astra Zenica, then in Feb of 2022, I had a Pfizer booster. Within 8 days I developed the symptoms of PMR. PMR was diagnosed about three weeks later. I started at 15mg Prednisolone but was hospitalised for tests due to escalating neck and jaw pain - symptoms of GCA and the dose was increased to 60mg which thankfully controlled the pain, but gave me the usual swag of Pred side effects. After a temporal artery ultrasound, CT and PET scans the medical team concluded it was probably not GCA. ( I had history of cervical joint issues but not this degree of pain) Pred was reduced quickly over 7 weeks to 12.0mg and then after dropped by 1mg/month. Early on I had some small amount of pain return with the drop but that disappeared after a few months. Thankfully I’m now down to 1mg. Fingers crossed for the finale!
I read of some research on rats with induced RA where Pred and Curcumin had been administered together producing better results than either taken separately so along with the recommended vitamins and minerals I took 2 Bio-Curcumin Turmeric 16,500 daily and mostly adhered to an anti-inflammatory diet. Don’t really know whether the Curcumin contributed or not to the smooth taper.
Now the new Omicron specific mRNA vaccine is available and my question is - should I take it or not?

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I developed PMR within about a week after my second COVID Pfizer vaccination. I have taken cucurmin for years , along with omega-3's. ( I happen to be a registered dietitian). My pain was only at night and I never had elevated inflammation markers, so it took months to diagnose. I started with 10 mg. and tapered off within about 1.5 years. Unfortunately, I contracted COVID in December, and I started to feel my arms hurting again. So I started back on 3 mg. and am now on 1.5 mg. I plan on never taking another mRNA vaccine in my lifetime, if I can help it. Just my 2 cents.

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I am no longer taking methylprednisolone only methotrexate injections. I am going on a cruise in March and my PCP and Heart Doc suggesteed I get the second covid booster. My covid vaccines have all been Pfizer. I went and got the second booster with no ill affects until week 2 after the booster. My entire body hurt again.
Saw PCP 2 days ago because Rheumy is out ill until April. Prescribed medrol dose pack and I feel like a new person again!!

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After nearly 12 years remission of PMR, after receiving a Covid fax and one booster, my PMR returned.
At first I thought it was just mild "flares" that came on and off. But this past August it came on with a vengeance. I'm on Prednisone and Methotrexate.
I won't be getting another Covid booster.

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@bjeanthejellybean

After nearly 12 years remission of PMR, after receiving a Covid fax and one booster, my PMR returned.
At first I thought it was just mild "flares" that came on and off. But this past August it came on with a vengeance. I'm on Prednisone and Methotrexate.
I won't be getting another Covid booster.

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I got my second Covid booster (4th shot in total) in May of 2022 - seven days later I developed symptoms of PMR. Coincidence no one knows but I’m leery of getting anymore boosters. Just being careful of indoor crowds.

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I developed PMR over a year ago a week following my 1st covid booster vaccine. I went from a healthy active person walking Approx 5 kilometres daily to not being able to stand up or take my weight on mu legs. Pain around my neck, shoulders pelvic girdle burning sensation in my feet, responded well to Prednisolone since Jan 2022. 3 attempts at tapering with relapses. I have found Chi Gong exercises helpful in easing the pain. Acupuncture and prescribed Chinese Medication of no help to me. I take Calcium and Vitamin D and had one course of Methotrexate x 4 weeks on advice of Rheumatologist . Diagnosis PMR directly related to the Covid vaccine. I declined 2 further vaccine boosters as I don’t know why my body reacted so bad to this vaccine and i hope further research will reveal why some people develop PMR after The Pfizer vaccination. I will never accept another Covid vaccine and prepared to accept the consequences. The vaccine did so much harm to me and many others but yet saved millions of lives. The vaccine companies now have a duty to invest heavily from their enormous profits to investigate/ research independently why some people are impacted negatively and not others.

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@npostusa

Likewise, except mine was not Moderna.

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First symptoms of PMR (although I just thought it was sore neck and shoulders), began the summer after my first Covid fax in May 2021. Fast forward to Aug 10 2021, 10 days after the second Vax. Couldn't move. Couldn't get out of bed and definitely could not get out of the bath tub ( my daughter had to assist). We were on vacation in Cape Breton at the time. Went to GP of 29 years who diagnosed me with old age. Finally insisted on bloodwork for RA and my CRP was up to 42. He immediately referred me urgently to an Neurologist here in Halifax, who diagnosed PMR in Jan. 2022. Been on Prednisone since then and now it has apparently morphed into GCA...inconclusive biopsy and Rheumatologist is already trying to wean me down from 60 mg to 50. Pain returned after 3 days and now back up to 60 mg. Still trying to see or even speak with the Rheumatologist to no avail. Only way to do that is to go into ER. Very frustrated at this point.

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