Vaccinations for respiratory illnesses and PMR: To get or not to get?

@groksvaag Thank you for sharing your experience and opinion. How long have you been on Kevzara and at what level of prednisone when you started the biologic? Any side effects from Kevzara for you?

Greetings fellow humans with GCA/PMR! Just weighing in on vaccinations. I am a strong believer in the benefits of vaccinations in the vast majority of people, including our population, although I respect your experiences, fears, doubts, and decisions. I do not believe that my prior vaccinations brought on my GCA/PMR and I have my very personal ideas about my own GCA/PMR triggers.

In order to try to maximize the efficacy of my vaccinations, I get them 1 week before my every-4-week infusions for GCA to hopefully allow the vaccinations time to be further away from my immune-system-suppressing infusion and to have 1 week before the next one to try to build antibodies. I also just get 1 vaccination at a time and don't combine them like I used to do years ago. The very first Moderna Covid vaccine we got (hubby & me) really did a number on us (chills, aches, etc.), but did not bring on my GCA which came years later after a several-year period of indescribably insane SEVERE & chronic stress (the horrific underlying reason I'll spare from telling) that I could do nothing to assuage. We have not had those Covid vaccination side effects from subsequent vaccinations & have had both Pfizer & Moderna. Nothing compared with the whopper side effects of the Shingrix 2-dose vaccines (6 months apart) years ago! Sick! But it went away and far better that than Shingles! Best wishes for everyone to avoid any/all infections!

@julieahp
P.S., I meant to add that after being on Tyenne infusions for ~ 2 years, I am now switched to Avtozma infusions and have had 1 infusion so far and haven't noticed any difference. It's a newer American-manufactured biosimilar that Kaiser Permanente has switched to for this GCA/PMR diagnosis and likely easier to keep supplied now.

@julieahp Thanks for this thoughtful post. I, too, have been getting regular vaccinations for flu and Covid. Like you, I space them a couple of weeks apart. I was in public health, and we were taught to aim public health messages at the general population where they will have the greatest impact, which means they may not be appropriate for people with extenuating conditions. After discussing vaccinations with my pharmacist, I also opted to get the regular flu vaccine each year, not the senior formulation which contains an adjuvant to boost the immune system. He also counseled the Covid vaccine by Pfizer over Moderna because it is less likely to cause a reaction but is equally effective. For some reason that I don’t understand, my now retired PCP did not recommend the shingles vaccine, and now that I am getting a new doctor, I would like to get one. While withdrawing from prednisone from a flare, though, I apparently had prednisone withdrawal which was unrecognized until it triggered secondary adrenal insufficiency which I am now fighting. I am really uncertain about the effect of any vaccines on my slow recovery. Do you go up on your dose prior to having a vaccination? And you said you had a pretty strong reaction to it — was that related to PMR?GCA or was it the side effects that are typical of the vaccine?

What are the side affects of adrenal insufficiency?

@potterywoman
Thanks for your helpful message and questions, also. I have been off prednisone for a bit over a year now, after being on prednisone for about a year and that year including a slow taper prescribed by my rheumatologist. I was grateful to be able to stop prednisone, although I felt great on it, due to its deleterious effects on the body long term! I had no trouble whatsoever with the tapering nor with being completely off prednisone. I had been having monthly infusions of Tyenne while tapering. I started at 60mg Prednisone at the start because of my GCA diagnosis. I'm now 65. I have not needed so far to restart any prednisone (no GCA flares) and have been doing fine on the monthly infusions. I mask in public and whenever I think I should in order to prevent [respiratory/other] infections. With PMR, I don't think I'll ever feel the same physically as I did prior to diagnosis (funky muscle slight weakness (but can be overcome just by continuing on, plus upper body/back/shoulder aches with heavy use--lots of kitchen cooking prep, housework, etc.) My new normal. Thanks for the advice about Pfizer over Moderna for Covid vaccine and about getting the normal flu vaccine rather than the one with the adjuvant that boosts the immune system. I'm taking that advice! I/we also eat a really healthy anti-inflammatory diet (and enjoy it) and keep foods low on cholesterol low/no sugar, etc, because of the monthly Rx which can impact (increase) those areas of disease.
Regarding the Shingrix vaccine: I had this vaccine (2 doses 6 months apart) about a decade or so before symptoms/diagnosis of PMR/GCA came on, so unrelated side effects. The reaction was simply due to the vaccine itself. My sister & hubby both had the same reaction. And others. We interpreted it as a good sign, that our body was building up a good immunity, but don't know if that's a scientific explanation.
I do NOT take prednisone prior to having a vaccination (and, again, have been off prednisone for over a year now).
I am really sorry to hear about your challenge with adrenal insufficiency due to prednisone withdrawal. And I would also worry about the effect of any vaccines on your recovery, although I don't have that kind of medical knowledge. Are you on a IL-6 biologic drug (either weekly injections or monthly infusion (Actemra, Tyenne, Avtozma, other IL-6 drugs)? I'm so grateful that they came on the market. Well wishes to you (-: .

Thanks. My rheumatologist has not mentioned any other drugs, but then again, he didn't mention the possibility of a flare either. I was off prednisone for almost three years, and honestly, this has been so bad that I don't even remember why I was back on it in the first place, because it sure wasn't as bad as what I am going through now. Whatever it was, I had slowly tapered to 2 mg and felt great until after I returned from a trip to London where my daughter and I walked 4-5 miles per day. Apparently, the problem though was that I should have upped the prednisone prior to dental surgery. Who knew? And since I am used to being active, this sudden fatigue and dizziness forcing me to be sedentary is beyond frustrating. Although I like my rheumatologist, after this, I am looking into the possibility of finding a new one.

@kjoed53 that’s good advice; I read too many posts where people decide how they will treat their PMR. I understand the meme that’s going around that says my body, my decision. However, having had PMR twice in eight years and going through it at this moment again., My body, my decision is made in consultation with the people who treat this disease every day for years on end. I know that the pandemic has changed our view of science probably irreparably. That’s unfortunate. We saw what happened with the measles. Outbreak has worn more parents have issued the measles vaccine. My first go round with PMR. I was treated by neurologist at the hospital for special surgery in Manhattan. I stayed on prednisone using the step down method for 13 months. That was eight years ago. My current Rheumatologist has me on a 90 day step down program. I won’t stop taking the prednisone based on how I feel on any given day. I will take it for the entire three months. I wish all of us on this page goof health and keep fighting.

@frankiechi
Thanks, the way I look at it is that I'm paying my doctors for their expertise and when I stop following their advice then I no longer have confidence in their opinions and decisions. If that ever happens then I need to find a new doctor. I'm able to have an informed discussion with all of my doctors and my thoughts are always taken into consideration. I have confidence that vaccinations are still part of a healthy future. My current health issues started after a bout with covid last summer, not the jab.

@frankiechi I work with my doctors also but I have found that with "zebra" diseases, forewarned is forearmed. You have to be well informed about your condition because medicine is so siloed and so algorithmic these days, and PMR is a strange disorder indeed. I am thankful that I went back to school to study public health where one of my jobs as a liberal arts PhD was to do lit reviews for my team's publication. Knowing where to go for accurate information is crucial. I diagnosed myself after hearing from an orthopedic surgeon and a PT that I had bad osteoarthritis in my hip (no imaging was done to confirm this). Fortunately my PCP agreed to test my inflammation levels. Sadly she has retired, and I am going to be with someone new. And of course my secondary adrenal insufficiency is due to my rheumatologist's failure to recognize the signs of withdrawal syndrome and to have warned me that it could happen in the first place.