Newly diagnosed with PMR- concerns about vaccine reactions?

Reporting back; I just saw my rheumatologist and she said to get the vaccines. I’m switching to Kevzara but she said the vaccines won’t interfere with anything . I’m just going to do what she says

@kjoed53 The flu vaccine for senior adults contains an adjuvant which is designed to boost the immune system. With the blessings of my pharmacist, I always get the regular flu vaccine, which does not contain the adjuvant. I do not believe that any of the Covid vaccines contain the same thing, but last year my pharmacist told me that the Moderna was a bit stronger and caused more reactions than the Pfizer. The formulations are different this year, so again your pharmacist is your best friend. Your doctor can tell you what his or her experience has been with patients and reactions To the vaccine, but physicians are not the best people always to talk to about what’s in the vaccine and what side effects it can cause. Last year, a good friend with another auto immune disorder almost died when she had a vaccine, and her doctor refused to believe that the vaccine was in any way responsible because there had not been a clinical trial in which immunocompromise people were were deliberately injected with the vaccine to see what happens and compared to immunocompromise people without the vaccine. That sort of study is not appropriate in all cases, but doctors understand only the very, very basics about public health.

@potterywoman
When we lose confidence in our doctors and their decisions and reasoning, it's time to change doctors. It seems you have more confidence in your pharmacist than your doctor, but not everyone will agree with you and you will not agree with everyone else. There's nothing wrong with that.

Considering that my doctor missed the signs that I was going into a
reaction to prednisone withdrawal. Yes, I do trust my pharmacist more. If
you think your doctor knows lots about drugs, I’m sorry, but you were sadly
mistaken. A good pharmacist knows much more and has more resources at hand
than a doctor. My pharmacist has a doctorate in pharmacology. I believe
that my pharmacist literally saved my life by telling me to cut back and
then out on their Apple bill for hypertension when I was having secondary
adrenal insufficiency. I have decrease in public health and I know the
kinds of messages that doctors get and I know that general practitioners
also do not necessarily understand very rare disorders sad but true and I
live in one of the best medical facility areas of the country with two
major internationally known medical centers.

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.

@potterywoman
Please do not pretend to know my doctors' (plural) qualifications. If you are satisfied with listening to your pharmacist, I'm glad that it makes you happy. I am quite happy to listen to the recommendations of my doctors and that makes me happy. I do not appreciate condescending comments and there's no place here for those kind of comments. No one on this forum is an expert on anything but their own experience.

@kjoed53 We all have to navigate this individually. Health providers' knowledge and experience vary from person to person. I think it's understood that pharmacists know way more about drugs than doctors; after all that's what they do! Nothing wrong with your providers working hand-in hand though. And this certainly is a disease that we must be our own advocates, and not be passive. I guess that's why our emotions can get involved here.

@potterywoman Well- articulated post! Yes, I think doctors are only inclined to accept facts based on documented peer-reviewed sources, while ignoring the 'anecdotal' evidence from their own patients' experiences. This is where the real information should come from because our experiences are based on real life. Case in point: My doctor was hesitant to recommend red-light therapy to reduce inflammation because only a handful of her patients said it helped them!

@mp71
I don't agree that pharmacists know way more about drugs as far as the treatment of illness, disease or disorders. It's true that competency can vary from doctor to doctor, but that also holds true for pharmacists or any other professional. I'm being treated and prescribed for PMR, SMM, AFib, PVCs, PACs, BPH and a severely deteriorated cervical spine. I don't want my pharmacist determining what I should and should not take, whether that's meds, supplements or vaccines. As you stated, we all need to navigate this individually so we should not be making unsubstantiated judgements of others and their decisions.

@kjoed53 Well, with doctoral training in public health and a background in teaching nursing students epidemiology, I have a high degree of confidence in knowing what to ask and whom. Not everybody is so well equipped. But I have had a couple of really bad experiences where I trusted the doctor but did not verify -- one was an earlier episode of almost passing out in my studio due to a synergistic reaction between two hypertension meds and another with another doctor was an antibiotic that exacerbated my dysgeusia (disordered taste), and sadly the damage is permanent. So you are right that one should always discuss care with one's doctor. After talking with my pharmacist, I do go back to my doctor with the additional information. Right now, though, due to a series of retirements at my old center (integrative medicine), I am between PCP's.