Newly diagnosed with PMR- concerns about vaccine reactions?

I've been receiving treatment for PMR and GCA for more than 2 years, so I've been through 2 yearly cycles of getting flu and Covid vaccines in the fall. I never had side effects from the flu vaccine before, but I had very strong side effects from the Covid boosters - fever, body aches, insomnia, etc.

I was at about 40 mg of prednisone the first year of treatment when I got the vaccines, and I was off of prednisone last year, but still taking weekly Actemra injections. My experience was that I had zero side effects from the vaccines since I started treatment for GCA and PMR.

Prednisone treats PMR and GCA by suppressing the immune system. The side effects to vaccines are from the response of the immune system, so if the immune system is suppressed by prednisone, it makes sense that there will be fewer or no side effects from the vaccines.

Since the immune system doesn't respond as well because of prednisone, that means that the vaccines are less effective. But doctors still recommend that people taking immune suppressing drugs get vaccinated, because the vaccines provide some benefit. In 2 years of treatment I have only had 2 colds and a very mild case of Covid.

I have had Covid vaccines and Covid. Couldn’t tell any side effects from vaccine. Even though I contracted Covid, I think the vaccine may have lessened symptoms…?

A very controversial subject. I have had Covid vaccinations, and flu shots. Since having Poly I have been sicker longer than other people, which is the way it is and I could handle that. I recently talked to a woman on another support site who got a tetanis booster and ended up in Mayo Jacksonville on a ventilator with Gillian-Barre. For months. They told her it was from the shot. I said whoa, that doesn’t sound like Mayo, and she said that is what they said. She has to have ramps built in her house because she now has mobility issues, and challenges that are worse than the Poly she had in the first place. I realize this is all second hand info, but that is what she told me. And I have heard this before as well. I am not an anti vaxer, but I will not be getting any more. I have had Poly for 11 years, Shogrens for 13, and I am 75, I feel the risk is too great. Every Dr I have asked about this is rather disinterested as autoimmune problems are nuisance diseases that are hard to treat and I have or could have corrected many statements from Drs who after two sentences indicated their ignorance of the situation. It is a judgement call that you have to make. Do some research, consider your options. We are all different and respond differently to meds. I am very sensitive to most and allergic to many, and after having autoimmune issues all these years, I feel very vulnerable. I have developed so many allergies to meds, food, fabrics, lotions, and eye drops since getting Poly I feel I need to stay away from vaccinations. But like I said, we are all different even on the same road.

I was told to get all vaccines before going on Kevzara and getting off prednisone. I complied and had no problems even though I was a little hesitant.
I think so much is unknown about PMR and vaccinations in general. My PMR started during recovery from a traumatic injury to my foot requiring stitches. I feel there was direct link.
I wonder how many events are coincidental to PMR and how many are truly directly related?

Medicine has long recognized the possibility of a PMR flare following a flu vaccine. MY rheumatologist told me a couple of years ago that he saw it in around 10% of his patients , but I would guess that the real number is higher. His recommendation was to go up on the dose of prednisone for a few days. If you have a really good pharmacist, ask him/her which version is least likely to cause a flare. Although I am a senior, I always get the regular flu vaccine on his advice — the senior version contains an adjuvant which is specifically designed to reve up the immune system. Similarly with the Covid vaccine. Last year, he recommended Pfizer over Moderna because although equally effective, it was less likely to cause a flare. Following the recommendations of both my pharmacist and my rheumatologist, I have successfully avoided a flare. The strategy has worked for me now for several years. This is a topic that has been on my mind a lot recently, particularly since there is a new approach to manufacturing the Covid vaccine using mRNA. I was only recently diagnosed with SAI but after months of dealing with what I now realize was a reaction to prednisone withdrawal. I am waiting until later in the fall when I feel like the SAI is more under control.

@shelleyletts
I'm always skeptical of anyone saying they were told something at a medical facility because you never know whether they were told by a doctor, nurse, technician or other. Thanks for sharing so anyone concerned can discuss with their doctor. I only get vaccines when requested by my doctor. I'm not anti-vax either but I'm not going to be aware of interactions with my meds like any of my doctors will be.

I wanted to add a second reply about the way public health recommendations work because this is something that many people, including doctors, don’t take into account. My studies in public health were in health promotion and behavioral science (although everybody had to study epidemiology and statistics). It was drilled into us that the aim of public health is to do the most good for the greatest number of people. The implications for people like us are profound when it comes to vaccine recommendations. Public health campaigns whether from the CDC or from a medical society have therefore focused on encouraging everyone to get the vaccine. We should, too, but we should not go into it blindly without taking precautions to avoid a flare. By this point, I imagine that most rheumatologists are aware of the risks and how to mitigate them. PCPs may not be as aware. As I said earlier, between my pharmacist and my rheumatologist, I have avoided vaccine related flares. In contrast, a friend with another autoimmune disorder that causes thrombocytopenia was not warned, and her white cell count plummeted dangerously. When she asked the doctor about this, the doctor replied that there was “no evidence” that the vaccine was the cause. Here’s where it becomes important to distinguish between public health recommendations and medical practice where one size does NOT fit all. Medical research requires testing an intervention against a control in order to “prove” evidence, and for ethical reasons, individuals who are vulnerable to harm from exposure are generally excluded from research studies. The evidence of possible causality in public health comes from monitoring and surveillance. Technically, then, causality is never “proven,” but as evidence mounts of correlation between, for example, vaccine and flare, that knowledge is what should inform good practice. That piece of the puzzle isn’t always communicated to medical providers as well as it should be.

As previously mentioned, this is a very controversial subject and each person does need to do what they believe is best for them. Each one of us has different health issues, age, experience with vaccines, or knowledge about them from various sources, and what our Doctors recommend. There are different ingredients in vaccines, and unless we ask for the "package insert" or "prescribing information," we don't know what's in each one that might be an issue for us personally. Maybe they wouldn't be an issue for anyone else, but could make a difference for us. Many people prefer to rely solely on their Doctor's advise, but if someone wants to understand for themselves, between their Doctor's and their own findings, they can make an "informed consent" type of decision that they're comfortable with. It's a serious issue, and every medication or vaccine that goes into our body is an opportunity for side effects. Just like Prednisone. At this point in my PMR journey I'm not going to take any. I've had several types of vaccines as an older adult but only 1 flu shot. I had a reaction to that. I'm not anti-vaccine, but do choose to be as informed as I can be about anything I put in my body, especially medications or vaccines.
My choice may not be the same as anyone else's.
My hope is for everyone to be as healthy as possible, and comfortable with whatever choice they make regarding whether to take vaccines or not.
It's such a personal decision. Blessings.

Thank you to all for your insightful responses. I was interested in knowing if there were folks who noticed a change in how their bodies responded to vaccinations after having PMR. Foolishly it didn't even occur to me that this could be construed as a slow slide into pro-anti vaccinations discourse! So yes thanks to all who replied to date and from my perspective (the person who initiated this thread) we can put this thread to sleep.

I was very leery of getting the first Covid vaccination because like many others my PMR was the result of an adverse reaction to a prior vaccination in 2019. I did not want to die from Covid - so it was a real approach/avoidance issue for me.
I asked my allergist to verify that there were no common ingredients in the Covid vaccine and the vaccination I reacted to. Other than water and salt there were none. With the advice and guidance of my Infectious Disease doctor I received the 1st Covid vaccination.
I continue to get vaccinations as needed, flu, Covid, travel, etc. I never get two on the same day. We have agreed I should wait at least two weeks between vaccinations. This is because vaccinations accelerate your immune system to create the antibodies of the vaccination and we want to give my body time to calm down before the next vaccination. I have been known to wait a month or more if time permits.
Being on prednisone was never an issue other than your antibodies may not be as strong because of the steroid. They will be better than no vaccination at all, just not as strong as they could be if you were not on steroids. As my Infectious Disease doctor readily points out to me that the steroids do not depress the immune anywhere near what a cancer drug does. So even if our immune systems are depressed it is not a serious risk like a cancer patient.
He not only agrees with my worldwide travel, he is always interested in my stories when I return. You do need to be careful if the vaccine is a live virus vaccine.