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Getting COVID, Flu etc vaccines while treating for PMR
Hi all, I'm new to this group. I'm finding alot of useful info! I self diagnosed myself with PMR when PT failed to help with what I thought was yet another weight lifting injury. Long story short, I finally got in to see a rheumatologist and was officially diagnosed. My labs were normal. But my described pain led him to put me on 10 mg/day for 1 month of prednisone with a plan to taper 1 mg/day for 9 months. I saw immediate results and the pain got less and less throughout that first month. I just started to taper yesterday. I'm nio feeling anything yet - beyond the new normal of very low stiffness in the earlier part of the day.
Looking back, my PMR started about 2 1/2 weeks, in July, 2024, after getting the 2nd jab for the COVID vax for the variant running around in 2023-2024. I've gotten 2 jabs of each variant vax since the initial 2 jab dose. I've lost count of how many there have been. I researched to see if there was a connection between either having a COVID infection or the vaccine and found 3 or 4 kind of shaky, IMO, studies concluding just that for both an infection and getting vaccinated. Before the pandemic, there were similar studies on flu vaccine and PMR. And by the way, I got Covid for the first and only, so far time, in August 2023. I took pavlovid. Also, prior to being officially diagnosed, I received this year's flu vax and my pain immediately increased 5 fold to the point that I didn't leave my house for 3 days. So I'm kind of seeing a cause effect here....
I told my rheumatologist all of this and asked about getting this year's COVID shot. He advised me not to do that. I'm 65 and asthmatic but love to work out. So I'm in the gym doing cardio, swimming laps and what passes as a lift these day, so I'm concerned about getting it, as well as the nororious, flu etc. I would like to eventually start getting these vaccines as I grow older. I also asked him if he'd seen an uptick of patients getting PMR after their 18th COVID jab. He said anecdotally yes.
So my question is: are any of you had with a similar experience with the onset or a flare of PMR after getting a virus vaccine? If so, what have you done or been advised to do relative to getting vaccinated going forward? Thanks!
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My experience is different from yours. I had undiagnosed PMR for about 6 months, then caught Covid, and then developed symptoms of GCA about 6 weeks after that. It's possible having Covid triggered GCA, but I'll never know. I've read that about 20 percent of people with PMR will develop GCA, so it might have happened to me anyway.
I've had a few vaccinations since beginning treatment for PMR and GCA. I take prednisone and Actemra. Since both of those medications suppress the immune system, I wonder how effective the vaccinations are. Previously when I got a Covid booster (Pfizer) I would have really unpleasant side effects, such as 102 degree fever, body aches, insomnia, etc. I learned to control the side effects by taking acetaminophen. But with the last Covid booster after starting treatment, I didn't have any side effects at all.
I've read that PMR and GCA can be triggered by a lot of different things that affect the immune system, such as vaccinations, illnesses, and stress. After a lifetime of different stresses, one final straw tips you over into sickness.
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3 ReactionsMy doctors (internal medicine, endocrinologist, rheumatologist) all recommend vaccines. My husband and I (in the late 60s/early 70s range) stay fully vaccinated. We also live a rather extreme Covid prevention lifestyle. We were fine until my husband went to the gym without our Aranet4 and didn't wear a KN95. Now we're both recovering from our first infection with Covid.
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3 ReactionsMy husband developed PMR after getting the flu and COVID vaccines at the same time followed by a norovirus. This was last year. I advised him to skip the vaccines this year now that he’s much better from prednisone and methotrexate. Women’s intuition? I don’t know if I’m right or not but it’s scary to me.
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3 ReactionsI had the beginnings of PMR but did not know at the time that my symptoms were PMR. On Novemeber 27th, I visited a PCP for my muscle ache and she wanted me to get the flu vaccine. PMR was not yet diagnosed. I do not do well with vaccines but the PCP convinced me that no one gets reactions from the flu vaccine. I took the vaccine the day before Thanksgiving. On Tanksgiving day I was sick with flu symptoms and my PMR symptoms really accelerated. To this day, my left upper upper arm almost at my shoulder still pains me. I am currently on methylprednisolone which does relieve the left should pain but it resurfaces each morning before I take my Mendryl dose and is faintly there all during the day. I am done with these vaccines.
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4 ReactionsSorry you got COVID! Hopefully, it was too bad and you are both on the mend!
@lagpmr2024
Hello and welcome to the PMR forum!
I’m 75 years old and on my second flare of PMR in 2 years. Conditions that existed before my PMR started are asthma, diabetes and reactive arthritis. I’m currently tapered down to 5mg of prednisone.
I have never stopped taking my yearly flu vaccine. I don’t have any reaction other then soreness at the injection site. At the beginning of Covid I took the one shot j and j vaccine. I did eventually have a booster about a year later. I took care of my husband and daughter when they were sick with Covid that first year and I never got sick. I have had a few bouts of bronchitis but have never tested positive for covid! So I’m what they call a Novid—a person who has never had Covid. This year I turned down the Covid vaccine because I had a bad case of bronchitis that lasted almost 3 months until they finally cultured my sputum and got me on the right antibiotic! And I was also tested for Covid during this time and it was another negative result. So it is my personal choice not to do the Covid booster but I have done all my other vaccines, including shingles, with no affect on my PMR.
Best of wishes during your health journey.
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1 ReactionThanks! Best wishes for you too!
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2 ReactionsI have stopped getting the Covid vaccine since being diagnosed with PMR 6/23 because of the concerns you state. Interestingly when I actually contracted Covid 11/23 my PMR symptoms disappeared. Go figure. Others on this forum reported similar experiences.
I have been on Kevzara since 3/24 and have been off of prednisone since 6/24.
I feel normal again but ultimately want to be free of Kevzara as well. I’ve had no side effects whatsoever from it.
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4 ReactionsJust curious. Did you take Paxlovid with COVID? If so, I'm wondering if it had something to do with yourcPMR symptoms going away....
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1 ReactionI took Paxlovid to treat Covid at Christmas 2023 while I had undiagnosed PMR. The PMR symptoms continued afterwards, and about a month later I started developing symptoms of GCA.
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