So if you can't get the vaccine. No, really...
May 13, 2021 11:26 PM   Subscribe

The CDC announced today that if you're vaccinated, you don't need to wear a mask indoors. Well, what happens to the rest of us? Is herd immunity ever really going to be a thing - in the NY/NJ area (hopefully)??? Or, am I doomed to home grocery delivery and shitty produce selection forever?

I am cis-female, 50yo, have four different autoimmune diseases, two of which are degenerative joint diseases in nature, several significant allergies to medications affecting more than one system (cardiac, respiratory, dermatologic, etc.), and recently realized that one of them is a reaction of PEG-40.

I've been on a DMARD (leflunamide) for over 6yrs, and miscellaneous TNF blockers for the same amount of time. The most current is Simponi Aria. I'm also taking Otezla. Thrown in for good fun, I've had sinoatrial tachycardia that's mostly controlled by meds for over 20yrs. The Otezla has been causing breakthrough palpitations, so I need to make an appointment with a cardiologist about that.

My kids (16 and 18yo) and my husband are vaccinated, but with everything I've researched - from abstracts, medical journals, CDC, etc. have recommended that I go by what my GP or rheumatologist indicates. Both of them said that they can't tell me to go ahead and get the vaccine based on the history - it's up to my judgment. The only thing my doctors told me was not to take the J&J shot (so did my pharmacist).

If I didn't get every side effect from most drugs I take, I'd do the shot without a second thought. I'm a damn RN and fully believe in evidence-based medicine, but I'm honestly terrified about this one. I no longer work, since I ruptured both Achilles tendons in succession; this led to my initial diagnosis of Ankylosing Spondylitis and the adventure went on from there.

I know that none of you are my doctor and none of this is medical advice but has anyone else had a similar experience? I know that there are a few regular mefites that also have chronic health conditions and maybe in the same boat. Insight would be appreciated.
posted by dancinglamb to Health & Fitness (21 answers total) 6 users marked this as a favorite
Oh hey - I'm a 50 something trans male. I have persistent asthma that I take 4 daily meds for, food allergies with anaphylaxis, Spastic Paraparesis, and a few other conditions. Because 'asthma' was listed as a side effect of the vaccines, I talked to my GP about it.

His rationale was that I should get the vaccine, as I'd be in a supervised place if something did go wrong, and the incidences of severe side effects were very low. And even if I could tolerate only 1 shot of a two shot regimen, that'd give me at least some protection from the virus.

So, with that knowledge, I decided to get my vaccine at a city run center, that was staffed with both doctors and EMTs. The first Pfizer shot did indeed give me some wheezing, but my inhaler cleared that up. Reported that to my GP, and he recommended that I pretreat for the second Pfizer shot with a double dose of my Claritin, some puffs of Ventolin, and stay for an hour afterwards for observation. I also added a triple shot Americano to the mix. I also alerted the staff to what happened after the first shot, so they put me in a special waiting area after the second shot. I was jittery as hell, but it didn't give me any asthma afterwards. It was a pain, but I'm ultimately very glad that I got vaccinated, even with the asthma side effects.

If you choose to get the Moderna or Pfizer shots, I'd recommend it at a place where they have lots of medical staff available at the ready, and see if you can ask them ahead of time about what to do/how to prepare for any possible side effects you may encounter. Then, if you do choose to get vaccinated, tell the people giving you the shot about your situation. Good luck!
posted by spinifex23 at 11:41 PM on May 13, 2021 [32 favorites]

Best answer: First, you have a 16 yo and an 18 yo and a husband, so while I know it was a figure of speech, you are not doomed to shitty veggies. Put them to work on grocery detail.

I think your concern is the side affects. I am old, 20% older than you, overweight (doc told me literally yesterday at my annual physical to lose 75+ lbs) and have 4 stents in my LAD artery. I also have other health issues (lumbar and cervical fusions, sleep apnea, etc) While I am not allergic to any medications, I was a little hesitant to get jabbed. I spoke to my cardiologist about it.

They put it in simple terms. First, which would be worse, actually getting a moderate to severe case of covid or having a reaction to the vaccine while under medical supervision? Then, how disciplined would I be about avoiding other humans and wearing a mask AFTER most everyone I knew was vaccinated and returning to a so-called normal life if I did not get the vaccine?

I too did not want to be doomed to shitty produce selection (my kids are out of the house). I love my fellow humans, but to trust everyone in the tri-state area to do the right thing and get vaccinated for herd immunity? Not so much. I thought the outcome of getting a moderate to severe case of covid was materially worse, maybe even life threatening, than the unknown of what a bad or an allergic reaction to the vaccine might produce. I do not know if this is medically sound reasoning, but I thought that if I had a bad reaction to the vaccine, my reaction to actually getting the virus would be worse as proven by my body not doing well with the vaccine. So,...

I got the vaccine. My plan was to get shot one and see what my reaction was before assuming shot two Turns out I was tired for two days after the second shot. No material reaction to shot one. And now, I am free to do pretty much whatever I am comfortable doing.

If I were you, I would take a step back and try to take the fear and emotion out of the decision. Your doctors won't say yes, but they have not said no when they would say no if they were that concerned. The absence of a no from your doctors is very telling to me. Then, what are the possible negative reactions you could have from the vaccine and what are the odds that you would have such a negative reaction. The odds of surviving a plane crash are very low. But the odds of getting into a plane crash are very low too. If I was worried about the negative, I would not fly, but because the odds are so low of crashing, I do not even think about it. Also, can you put yourself in a position while getting vaccinated to have competent medical supervision (as per spinfex23 above)?

If your doctor said, "It is a risk, but I would probably get the vaccine in your situation", would you get it? If they were equivocal, would you get it? I ask because, to me, that is what they are saying. I assume if they said yes without reservation or hesitation, you would get it.

It seemed to me, for me, that the risk of getting covid far outweighed the risk of the shot, so I did. I tried to mitigate the risk of a bad reaction to the vaccine. One difference is that I live alone or at times with my gf. My point is that I almost have to fend for myself in the world. You have 3 helpers that can take steps to lessen your exposure to people who may be infectious. In a vacuum, I would not risk my life because I was sick of being a shut-in. As a betting man, I would look at the probabilities of each outcome and the risk of each outcome and make a decision based on that. As this is such a risky medical decision, only you can make this decision for you.
posted by AugustWest at 2:29 AM on May 14, 2021 [28 favorites]

I can't answer your questions regarding your personal situation, but since you mentioned herd immunity I hope this article can provide some information: Reaching ‘Herd Immunity’ Is Unlikely in the U.S., Experts Now Believe (
posted by rawrberry at 3:16 AM on May 14, 2021

This is somewhat orthogonal to your question and apologies if it's a factor you're already aware of, but an acquaintance with autoimmune diseases (who chose to get vaccinated) specifically stopped taking some of her meds for a time surrounding getting vaccinated because immunosuppressant drugs can dampen the efficacy of the vaccine (one blurb about that here.) Obviously this is a HUGE YMMV/consult with your doctors and maybe a pharmacist, but I wanted to share because whether the vaccine is likely to create enough immunity for it to feel worth it for you is something to add into the mix of considerations.
posted by needs more cowbell at 3:35 AM on May 14, 2021 [4 favorites]

Vaccine demand is drying up in south jersey, and we are nowhere near herd immunity levels. It doesn't seem like it will ever be achieved since the vaccine turned political. Do what you can to protect yourself.
posted by TheAdamist at 4:11 AM on May 14, 2021 [5 favorites]

Best answer: My friend was telling me about his aunt who has a lot of similar concerns and challenges. She is choosing not to get the vaccine, for now. She can do almost all her work online and lives with her vaccinated husband, and feels like she can hold out for a while longer.

The thought process is, evidently, that it’s not like the vaccines will become unavailable in the future, and that every day we are gathering more data and understanding things better in complex cases. It’s not like a small study for an experimental drug where it’s impossible to get enough information to cover the general population - these vaccines are being administered and studied at a global scale, and the motivation to iron out any kinks is immense.

She apparently told my friend during a family zoom meal that she will wait until late October and then probably risk it so as to hopefully visit family for Christmas. Of course if the science is done and it turns out there is a safe way for her to get vaccinated earlier, she will jump on it. It also helps that she isn’t responsible for children, and lives in a temperate climate so there’s a longer period of pleasant outdoor things she can do.

I found this all really interesting, since I tend to think in the direction of many of the above answers, where if it were me, I’d rather risk the vaccination and be closely monitored by doctors than risk the disease itself, and also the chance of becoming a vector for it being caught by other people. That’s honestly the best thing about being vaccinated, for me. As of two days ago it’s much less likely that I will give it to other folks, and it’s a huge weight off my always-guilty mind. But I understand the other angle, too. If you have a support system of vaccinated people, and can find ways to fix little pet peeves but otherwise are bearing up well, then waiting for the science to firm up might ultimately be in your best interest for now.
posted by Mizu at 4:35 AM on May 14, 2021 [8 favorites]

Best answer: Given your doctors' response I think this is a thing where only you can decide whether you can tolerate the (potential) side effects enough to get the vaccine. The dis-recommendation of J&J shows that if they thought there was a real possibility of harm they would err on the side of caution.

I am very pro-vaccination, including pro this vaccination, in the abstract. I like to be evidence-based, but also I'm a human being and I think in your position I would do what you're doing - see if you could find some anecdotal information of people like you who've been vaccinated and coped.
posted by plonkee at 5:00 AM on May 14, 2021 [6 favorites]

Is your clinic offering the vaccine? Were I in your shoes I would absolutely want to be vaccinated. Being vaccinated in a clinic (as opposed to say a Walgreens or CVS), where I could hang out post vaccination for longer than 15 minutes, under the care of my doctor would do a lot to allay my fears.

Totally anecdotal, but of the people I know who’ve gotten the vaccine, those who got Pfizer had less intense after effects as opposed Moderna. I would probably choose Pfizer in your situation. But, of course, huge caveats as there is a ton of variability.
posted by scantee at 5:51 AM on May 14, 2021 [2 favorites]

Best answer: I read the original question a little differently from some of the responders. In my case, and I suspect the OP's case, the problem is that even having gotten the shot, the body would fail to create antibodies. I think this is a risk for anyone considered to have a untypical immune system. I think the medical establishment is just coming to terms with this problem because we've only had a large vaccinated population for a couple months. For my situation, there was a study done in Israel which was leading edge at getting the population vaccinated.

The additional bad news is that the risk of serious disease and hospitalization is also higher.

So, yeah, it sucks. You can be vaccinated, but not really. The only good news on the front is that Pfizer and Merck have Covid-19 treatments in the pipeline. These attack the virus directly and dont rely on the immune system. The Pfizer drug is in stage 1 trials and they hope to have it released by the end of the year. The Merck product is built on science developed for HIV.

In the meantime, I think there will be a grey area between pandemic and herd immunity, more or less like the regular flu in normal times. A difference is that the public tracking of the disease may continue so you can gauge the incidence of the disease in your local area, and have an idea of the risks to yourself.
posted by SemiSalt at 6:16 AM on May 14, 2021 [14 favorites]

I take biologics for AS and didn't have anything but the normal flulike symptoms with my Moderna shots. My rheumatologist isn't worried about us getting the shot on biologics at all, just the usual caveats about skipping doses to ensure a good immune response. Of course that doesn't address your other concerns.
posted by hollyholly at 6:17 AM on May 14, 2021

Best answer: To your question of “did people who are unable to get a COVID vaccine for medical reasons or will have an ineffective reaction due to their immune system get thrown under the bus as a result of latest health guidance that will soon remove mask mandates in many places,”. the answer is yes. There have been huge strides in accessibility and disability advocacy in the last year and a lot of those lessons seem to already be forgotten or thrown away.
posted by raccoon409 at 7:01 AM on May 14, 2021 [16 favorites]

I take biologics for AS and didn't have anything but the normal flulike symptoms with my Moderna shots.

Same, except psoriatic arthritis (and scleritis). I also have asthma, but no allergies to medications, vaccinations or their components, so that's an additional consideration for you, but, if it were me, I'd get the vaccination but, as others have mentioned, in a more comprehensive medical setting
posted by Pax at 7:03 AM on May 14, 2021 [2 favorites]

My MIL has a huge range of health conditions, everything from Chiari syndrome, heart condition, arthritis, kidney and heart problems and chronic asthma. She too metabolizes medicines strangely, also very quickly and will often have strange reactions to new meds that have doctors going "Well I've never seen that before" and most pain meds and anesthesia don't' work well on her and she has more allergies than I can track. She got both shots of Pfizer with no problems other than a sore arm.

I read your doctors responses as there are too many unknowns in your case so we can't give you an unequivocal yes and they have to cover themselves if something goes wrong. What they didn't say, and I think they would have if they thought there was a danger is "No don't get it, or don't get it yet". Doctors tend to be conservative on treatment. Is there a way you could have the shot under close supervision by your doctor if you have concerns?
posted by wwax at 7:44 AM on May 14, 2021 [1 favorite]

ER doc here. Here’s my unequivocal take: COVID can kill you! The COVID vaccine won’t kill you, and, odds are, won’t cause any serious problems at all. Your chronic conditions and baseline immunosuppression make it even more important to get vaccinated than if you were otherwise healthy. You’re overthinking this.
posted by killdevil at 8:37 AM on May 14, 2021 [26 favorites]

I think you need to push back a little harder on your doctors to hear for them to give you the best possible "most likely" outcome from getting the vaccine. It might be ultimately your decision, but interpreting the data is their job.

If you're on multiple immune suppressors, the risk of getting severe disease is obviously much higher.

There was always going to come a point when either through changes to rules or reducing compliance. My wife is also on TNF-alpha inhibitors and also has other conditions that make her vulnerable, she got the vaccine as early as she possibly could.
posted by atrazine at 9:46 AM on May 14, 2021 [1 favorite]

I got the vaccine (Moderna), and had no side effects at all, while I continue to take an immunosuppresant medication for Crohn's (after a year of taking another one that stopped working; I've been diagnosed for 16 years). About 3 years ago I was transitioned from the TNF blocker that I had been taking for an estimated 4 years prior.
Because I want to know as much as I can about whether or not I'm really protected by the vaccine, I found a UNC-Chapel Hill medical school research study about two months ago that is following up on the question of whether the Covid vaccines are fully effective for IBD patients taking immunosuppressants. I've answered research questions online and just had lab work done, though I don't have the results back. My gastroenterologist thinks it is likely that the immunocompromised will need an additional booster. He recommends that his patients get the vaccine.
I live in a rural area that, per the NYTimes daily report, is at the Very High level for exposure risk. I do go to the grocery store but choose times when there are fewer people; I will continue to mask, keep my distance, and get in and out quickly.
posted by apartment dweller at 12:06 PM on May 14, 2021

Just for posterity, some other links I've seen about immunogenicity of the mRNA vaccines in people taking immunosuppressant drugs:

In organ transplant recipients (so, not exactly the same as people taking drugs for autoimmune diseases):
-after one dose
-after two doses
-more recent (May 11th!), about immunogenicity of the vaccine in patients with chronic inflammatory conditions taking immunosuppressants (this one is more encouraging than the studies done in transplant patients)
-an interview with someone studying this (requires free registration to read, but within the piece they link to the website for the study,
posted by needs more cowbell at 3:48 PM on May 14, 2021 [1 favorite]

About 24 minutes into this video, there are some remarks about using monoclonal antibodies in patients with compromised immune systems. Apparently, it's a hot topic in some companies.
posted by SemiSalt at 9:49 AM on May 15, 2021

Both of them said that they can't tell me to go ahead and get the vaccine based on the history - it's up to my judgment.

My go-to in this situation is to ask my doctor what she would do in my position. They can't tell you what decision to make, but they can tell you what they would do for themselves with the same data.
posted by PhoBWanKenobi at 11:45 AM on May 15, 2021

Response by poster: To clarify and update on a few things:

My rheumatologist explained that there was no Phase I study done on immunosuppressed people at all (Phase II and III studies included some) so they can't really say how the Covid vaccines will affect people specifically dealing with Rheumatoid-based issues (unlike those with blood cancers or solid organ transplants). Her best recommendation was to just wait until more studies happen and see what the results show before going ahead with anything. (My GP and dermatologist defers to my Rheum, so there's that.)

The most recent studies released with those that are immunosuppressed due to blood cancers or solid organ transplants seem to only retain a vaccine efficacy of around 30% after two shots. The latest study released from the American College of Rheumatology says to get the shot unless you have more complicated health problems. If that's the case, defer to your own rheumatologist.

I called Pfizer directly and after almost an hour on the phone and finally a call back two hours later, all I basically was told was everything that's already on their website for Healthcare Providers: They haven't done thorough studies on immunosuppressed people, and if you have a sensitivity to any ingredient in the vaccine, they don't recommend you have the shot at all.

It's all pretty much a game of chicken and egg (no pun intended, especially since there are no eggs involved in mRNA vaccines). However, given my sensitivity to polyethylene glycol, I can't have the Moderna or Pfizer vaccine, and won't be doing the Johnson & Johnson based on the doctor's recommendation.
posted by dancinglamb at 2:48 AM on May 16, 2021 [1 favorite]

Response by poster: killdevil: My chronic conditions are Ankylosing Spondylitis, Palmoplantar Psoriasis triggered by years of Remicade which in turn kicked off Psoriatic Arthritis, IBS-M, the Sinoatrial Tachycardia, and Migraines. I'm also beginning to suspect Sjorgen's. I'm about 20lbs overweight but lost close to 100lbs over 15yrs ago. The weight is mostly because I'm not as active as I was before, largely because of back/SI/hip pain. And, uh, those uncooperative ankles. ;)

I'm not so sure that I want to risk anaphylaxis, or any other snowflakey side effects (yes, I actually do get all the weird ones) if I'm only going to get a very small benefit from a vaccine that isn't guaranteed to work - let alone one that will need regular boosters.

At least for the time being, NJ isn't doing away with the masks. I'm really interested to see how this all shakes out given that only a third of the country is fully vaccinated. Is everything going to spike again and the mandate put back in place - and who is going to follow it if it is? I guess we will find out in about 8wks.

Thank you for all the input from everyone.
posted by dancinglamb at 3:00 AM on May 16, 2021

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