Living with immune suppression in 2021
November 27, 2021 5:16 PM   Subscribe

What do people do to have the best, most active life while on immune suppressants in 2021? (More details inside, if curious, but this is the tl;dr)

I have been on immune suppressants since June for psoriatic arthritis. Having a suppressed immune system is scary right now and I got sick this past semester a lot, now that we are more or less back to being in person where I work (a lot > 6 weeks of the semester).

I have a therapist and I have talked to my doctor, who was kind and had some good suggestions but basically shrugged and said “this may be your new normal.”

If you or a friend or family member are immune suppressed, what are you doing to get through this time when it seems like everyone who isn’t us can go back to “normal”? What helps you get sick less often?

I am ok emotionally and working with an excellent therapist and have a very good medical team. I also have a pretty supportive workplace but they don’t really know how to help. I would like to know what others in my position are doing that might help.

Thanks in advance.
posted by eleanna to Health & Fitness (12 answers total) 5 users marked this as a favorite
Best answer: Cancer patient here. I've had the three shots and am in a study to determine how well they work. After the second shot, I developed antibodies, but they disappeared a few weeks later. My doctor has told me that if I'm exposed to COVID, I'm eligible for monoclonal antibody treatment - but who is eligible for that varies by state.

I'm just basically continuing in almost complete isolation. My office is letting me work from home permanently, so I'm doing that. I fence outside with vaccinated, masked people once a week, but it's getting cold for that. My doctor says I might be able to fence indoors if I wear an N95 mask. (He approved the fencing outside with everyone vaccinated, but wanted me to wait until I had the second shot.) Aside from that, I go to the hospital for cancer treatments. I get food delivered. I play online trivia with friends, I'm in an online writing group, and a friend and I have started meeting every other week to talk about poems (we started before the pandemic, but switched it to a Zoom meeting). I ventured out to mail a package at the UPS store (wearing an N95 mask). The first time I went, there was a line to the back of the store and the last person in line had TRUMP in giant letters across his back, so that seemed like a message from the universe not to go in (and made me laugh because it seemed so absurd). I did go back later when I was the only customer in the store.

A friend came over last night to move some furniture for me so I can get it outside to give away. We were both masked and kept our distance, but I felt almost panicky - I feel like I'm getting some version of PTSD from all this.

I wish I had better suggestions, but I just feel like I can't let my guard down much if at all. Sometimes I'm really furious at all the unvaccinated people who are contributing to this. It's all exhausting and I'm sick of it. I wish I had happier suggestions for you, and I'm glad you are OK emotionally. But it's just fucking hard and I don't see a way around it right now. Being able to fence has been a lifeline for me. Is there a way you can choose an activity that's important to you and figure out the safest way to do it? I do walk outside in a part of a local park that few people go to.

As far as your job goes, are they requiring masks and distancing? If you have to go in, that seems like the thing that would help you the most. After I was diagnosed with cancer and before the pandemic started, I sent out annual emails to everyone in the office at the beginning of flu season with a basic message of stay away from me if you're sick. I work in the kind of office where no one objected, and I think they really got it when I was hospitalized with flu for five days. If your office doesn't have a rule, is it the kind of place where you could ask people to wear masks at least around you?
posted by FencingGal at 6:50 PM on November 27, 2021 [12 favorites]

Best answer: IANAD. I am long term immune suppressed. There’s a big difference between me and, for example, someone currently undergoing cancer treatment. I have two kids who bring home a lot of illnesses. I live in a very well masked, well-vaxxed city. These things have helped me over the years to stay more healthy. Most of them are obvious but they still mattered for me to call attention to in my own life.

* never share food or water. No tasting someone else’s cocktail, no sharing water bottles on a hike—get your own portion of popcorn from a communal bowl (Better yet, don’t eat from communal bowls)
* wash hands frequently
* wear a mask on airplanes/public transit (yes, i did this pre-pandemic)
* expect that any sickness will bowl you over and treat yourself well. Other people can work through a cold—you may not be able to. This one is closer to just accepting a new normal. If you are sick, don’t try to work. Lie in bed and drink fluids. Become comfortable with canceling things because you are feeling run down.
* tell friends that they need to let you know if they are sick so you can cancel plans
posted by you'rerightyou'rerightiknowyou'reright at 7:33 PM on November 27, 2021 [6 favorites]

Best answer: Psoriatic arthritis here, 20+ years. I was...before covid I did the kind of things people do since covid. I refused to shake hands and even had multiple doctors make snide comments and act offended. I washed groceries I brought into the house. I would occasionally snap and snarl at someone crowding me in lines if I'd already repeatedly asked them to back up. I asked friends to let me know if they felt like they were getting sick. I let it affect my dating life in various ways. I pushed back on the narrative that chronic STDs are no big deal.** I carefully cleaned every piece of equipment I touched in the gym, wiped my phone with alcohol multiple times a day, kept wet wipes everywhere.

I still ended up with skin infections a few times a year when I lived in a certain place where people don't shower often (according to old okc data, and my nose backs that up), chronic oral thrush that occasionally got so bad it traveled down my esophagus, affected my breathing and took 25 day courses of antifungals to clear, 8 cavities in one year when I'd never had one in my life. Life on immune suppressants is a wild ride. Every time I got sick it was bad, and going off immune suppressants when you get sick definitely makes the arthritis go nuts. So does being sick.

A few years before covid, in spite of everything I got a bad viral respiratory thing, which led to a violently inflamed throat. No one knew what it was. ENT, rheumatologist, internist, ID--they all said it must be someone else's problem. ENT said the camera showed inflammation at a 9 out of 10. All of this direct aftermath from a simple flu, because arseholes can't be arsed to be careful.

I'm saying this not to work you up into a frenzy of fear, but to to tell you that it's normal if you do go through a hypervigilant stage, and it's wise to be more careful than Average Lucky Moron on the Street, but life is going to happen. On immune suppressants it could be fucking anything and there's no lock that's foolproof, short of hermitage.

When covid hit I actually relaxed internally. I masked, did all the things, but something uncoiled. And I am returning to unmasked states and gatherings and dating faster than some of my "healthy" (healthy is a relevant term, but none of them dealt with anything like what I have) friends. It's because I've been fighting the war for years, and I understand that life goes on, even during disaster, whereas they still shocked and surprised and offended and enraged to be suddenly dealt such a blow to their security.

Be prepared for a bunch of possible internal states, including denial, grief, anger, etc. And I know some people on immune suppressants who claim they haven't had more issues than they normally think they would have. Everyone is different, and different lifestyles and social circles expose you differently. Even given my problems, for 20 years I've gotten less cold and flu than at least 50% of people I know. It's just when I do get sick it's much, much worse and sometimes turns into me losing basically 3-6 months of my life.

Practical suggestions that have absolutely helped me are ALL the typical covid things: avoid close crowds unless outdoors or it's something I want badly enough to risk it. During flu season mask if anyone in the house is sick. Wash your hands and frequently clean things. Never drink after anyone. Limit alcohol (none is ideal), don't smoke, eat healthy, exercise, and get plenty guy of sleep. All the things anyone should be doing anyway.

Specifics: if you're prone to thrush or oral infections or ear or sinus infections take a tsp of xylitol daily. Trust me, it helps enormously. Limit the fuck out of sugar. I'm not kidding. The second I overdo it on beer or sugar I end up with an infection and if I let it go too long I end up at my infectious disease specialist's office. Which is not fun. (Fun fact--I never had trouble with thrush until a GP, knowing I was already on immune suppressants, prescribed a steroid rinse for an apthous ulcer. That fucked me, and I've never been able to escape it since.) If you're prone to UTIs, take d-mannose preemptively, and cranberry. If you have anemia, or are even borderline, fix it. That also makes a huge difference for me. During the winter just assume on any group at least one person is sick with something transmissible and doesn't know it. If you have an important work or school thing coming up, mask religiously for a few weeks prior and wash your hands and all the things.

I hope your therapist is useful, but in my experience someone who has never had a chronic illness, especially one like this will never be able to adequately understand. I *have* found chronic illness support groups to be useful, depending on the makeup of the group.

**Circling back to my STD comment (because there is always some wanker who gets butthurt about this): it's not about stigma. I've hooked up with HIV positive guys. This summer even. My main complaint is the entitled heterosexual folks who try to tell you everyone has herpes and you can't or shouldn't get tested and/or you don't need to inform and/or it's nbd. Everyone who is dating should know their status and be ready to share that, and should understand that a huge chunk of the US population is immunosuppressed for varying reasons, or will end up immunocompromised one day. And another chunk who are perfectly normal will develop horrifying complications from something they though was no big deal. No one is entitled to an orgasm with anyone they want. Tell people, let them make their own decisions on whether or not you're worth rolling those kinds of dice for. Also, this spreads the way it does because people are stupid and selfish--hmm, for exactly the same reasons covid has.

One last note: the way I've made peace with the increased cancer risk from immune suppressants is that if a person lives long enough, cancer is almost inevitable. It's just most people die of something else before they live long enough. I guess in a sense, I feel like we "get what anyone gets. We get a lifetime." The goal is to make it as fluid and pain-free and functional and joyful as possible. And that's what the drugs are for. Being too caught up in the being careful can make us avoidant, which defeats the purpose.

I fail at so much of all of this sometimes, but I'm glad I've had options.

Memail me if you ever want to talk.
posted by liminal_shadows at 9:12 PM on November 27, 2021 [12 favorites]

My previous response is also a little bitter because I'm going through another round of really bad shit post-upper respiratory viral infection (not covid) in spite of being careful

What can I say? I can't always hold it together.

One last piece of advice I'd forgotten. Some GPs get angry (yes, literally angry) if you have chronic infections they can't figue out or fix. I've had one literally yell at me "What do you expect me to do?" In a tone dripping not with frustration, but with contempt. Keep an eye out for that, and if you get one of those, dump them with no hesitation or guilt. Fortunately that kind of weird hangup hasn't been super-common.
posted by liminal_shadows at 9:20 PM on November 27, 2021 [4 favorites]

Best answer: I have been on immunosuppressants for 5+ years and before COVID was lucky enough to feel like they had little effect on my life besides improving my arthritis. I rarely got colds or flu or anything, but I think this was largely due to no children in my life, my own office when we worked in person, and a pretty quiet social life, rather than a super immune system. COVID made me take a breath, especially when the data came out that the vaccine does not work as well in people who take my drug.

Most people where I live don't wear masks ever, and there is very little precaution taken vs pre-COVID. It's kind of boggling to me, and every now and then, I think, wait, am I the one who's not making sense here? I still wear a KN95 whenever I'm indoors with people, and so does my husband. We prioritize what we do in these indoor situations (i.e., how much time we spend in those situations), and I have a lot of sadness about not being able to do things I might have felt safe about in 2019. Similar to FencingGal, I picked one activity where I spend two hours a week indoors with other folks, and I wear a KN95 the whole time. Since I work from home almost 100% now, my overall risk calculator still seems ok to me, but I might make a different decision if I had to be at the office all the time. Are you able to compromise and maybe work half time on site? With any contagion, it becomes a probability game and the less time you are there, the lower your chances of catching a given thing.

I agree with liminal_shadows about steeling oneself a bit for medical personnel who don't see the point - I was not ready for that and let my guard down. I made an appointment in Aug with a dentist office that assured me they were wearing N95, had HEPA filters, and were following 'all COVID precautions'. When I got there, none of the office staff were wearing any masks and I realized about halfway in that the hygienist was wearing a simple surgical mask - when I exclaimed about it, she said "oh of course not - I can't breathe in those!" I wish I had noticed right away and left....
posted by Tandem Affinity at 9:48 PM on November 27, 2021 [3 favorites]

A little different experience here. Husband and 12 year old son are both on Humira for significant Crohn’s disease (and psoriasis for husband)-and really, our lives are pretty normal (as normal as one can be during covid). Both fully vaxed, husband is boosted, and we live in a pretty high-mask area of the US. But husband goes to work and son goes to school, and scouts and fencing. They were both so so sick before getting this treatment, but really (knocking on wood!) have not been sick during pandemic. Son went from 68 lbs a year ago to 97 lbs today so the humira feels like a miracle for us-I don’t think he’s even had a cold during pandemic and his doc hasn’t advised us to stay with remote learning. Now, all masks at school amd weekly testing, but still…

I also will acknowledge that metafilter seems to lean pretty cautious, and we are not as cautious in general as many here (so we did family gathering for thanksgiving, but everyone fully vaxed, for instance) so ymmv.
posted by purenitrous at 10:18 PM on November 27, 2021

My immunocompromised family member quit their job for a fully remote one when the old job attempted to force them back to the office, and is otherwise living exactly as they have been since early 2020, which is to say, in pretty intense lockdown. They expect to remain that way indefinitely. They’ve focused on making their home a comfortable and happy place to be, and taking all the normal precautions when they do have to go somewhere (medical appointments, etc.)

Most of the people in my social circle remain quite cautious so it’s not too big a disparity between what they’re doing and what the people around them are doing, so I think that helps a bit.
posted by Stacey at 5:00 AM on November 28, 2021 [1 favorite]

Best answer: I also will acknowledge that metafilter seems to lean pretty cautious, and we are not as cautious in general as many here (so we did family gathering for thanksgiving, but everyone fully vaxed, for instance) so ymmv.

Metafilter does lean cautious. But keep in mind, too, that not all immunosuppressive medications, doses, and medical situations are the same. And even within particularly vulnerable patient cohorts there's a wild and rugged range of medical guidance given to each. As a transplant patient who has little to no protection from taking the covid vaccine, I've been given guidance that's very conservative. When I was a transplant patient being treated for severe neutropenia earlier this year, my doctors were not just conservative, but grave. So guidance you'll hear from doctors and from people here on metafilter will vary based on circumstance.

If you've been able to take the covid vaccine and your doctors consider it likely to be effective for you, that's great news.

What helps you get sick less often?

Aside from covid: I received my transplant during covid, so this is all normal for me, but my dad had a transplant in the before times, so in his case it meant his being careful and us being careful around him. We all had flu shots, we stayed away or took extra precautions when we had a cold, that sort of thing. He was a meticulous hand washer. But he traveled a lot on planes, visited me in the city, 98% of his life looked a lot like everyone else's.

So far as protection from other illnesses, you've likely been advised to get the flu shot. You've likely been advised to wash your hands ALL THE TIME and steer clear of sick people. That's good advice for everyone! You might want to stay away from public pools and hot tubs, you'll want to cook meats thoroughly, you'll wash every bit of produce. Some foods like cold cuts and sprouts(!) etc. can harbor bacteria, so you might want to avoid them. And if you're feeling run down, you'll want to be extra cautious for a while. Your doctor has likely gone over all of this with you based on your condition, treatment, and medications.

Being proactive becomes a kind of second nature, and having clear guidance from your medical team really does make this doable. You just try to follow the guidance and make the best judgment that you can, and seek treatment early when you're sick.

If you or a friend or family member are immune suppressed, what are you doing to get through this time when it seems like everyone who isn’t us can go back to “normal”?

Quite frankly, I'm struggling with this as we start winter again. One of my closest friends feels 100% confident in their vaccination, has declared that covid is essentially over, and is now living exactly as before. After hearing a story a couple of weeks ago about their wild weekend and careening around the city in a car packed full of strangers, I just kind of shut down. Like, I'm happy for my friend and I want them to live a normal life, and typically I love a good wild weekend story, but sometimes especially now I really don't want to hear about it. So I find that I have to brace myself for stories about those kinds of things, pace myself, pay attention to my reactions.

What's been helpful for me:
- Meeting people outside whenever possible. I set up a little table and chairs in the backyard, and some hammocks, too. (Hammocks should always come in pairs.) I've met friends for picnics. I take a lot of walks and get as much sunshine as I can, which really helps my mood.
- Keeping up with friends more often by phone and by mail.
- Asking my doctors for specific advice based on my risk level, which saves me from a lot of guess work and anxiety
- Learning to stay ahead of the curve when I feel anxious or frustrated about having to be so careful, and this means talking about it with others and planning accordingly
- Reading and watching books and movies about people who deal with isolation in a proactive way and everyone survives: A friend recommended Laura Ingalls Wilder's The Long Winter about how one prairie town was besieged by snow, and now I've read it twice
- Trying to be productive. I've been organizing and cleaning my house and I'm getting to the point where I'm feeling smug about the results.
- Having something to look forward to
- Remembering that there are multitudes of other patients and their loved ones living through this and finding their way

Also, my little dog has been excellent company and she keeps the quiet from getting too loud.
posted by mochapickle at 5:16 AM on November 28, 2021 [6 favorites]

Best answer: If you or a friend or family member are immune suppressed, what are you doing to get through this time when it seems like everyone who isn’t us can go back to “normal”? What helps you get sick less often?

I don't quite fall into this population as I am not immune suppressed, but I am a physician and I take care of a lot of COVID patients, a lot of patients who are immune suppressed, and sadly a lot of people who are both.

I personally do not believe that anyone should "go back to normal," but because I interact so frequently with people who are high risk (as their doctor), I especially think I have a duty to minimize my exposure and do my absolute best to never, ever be the reason that one of my patients gets sick. Consequently I behave more carefully than most people I know, including most doctors.

I think most of the basics have been covered, but some things I do that haven't been noted yet (these are for avoiding illness in general, not specifically COVID): never wear shoes in the house; change to indoor-only slippers at the doorway. Likewise, change into indoor-only clothes when you get home, don't lounge on your couch or in your bed (!) in clothes you've worn in public.

Psychologically, I quit Instagram and Facebook during the pandemic. I have stayed in touch with people who are important to me and I no longer have a rage blackout every time I open the app and see someone I know having fun doing something that I consider irresponsible.

While I appreciate that people who are immunosuppressed or immunocompromised will always be at relatively greater risk and take relatively more precautions, I do not have a "live and let live" sort of attitude and I do not think you need to accept that other people are able to go "back to normal" but you are not. People who are going "back to normal" are selfish and don't recognize that the convenience they feel from not masking is manifesting in higher risk for you and, perhaps even more importantly, greater danger overall from straining health systems that are already over capacity. I live in a state that is highly vaccinated and still has mask mandates where people are generally careful, yet our health system is still stretched to the breaking point and we are canceling elective procedures again. This goes beyond COVID alone and reaches the point of trading not-wearing-a-mask-in-the-supermarket for your-neighbor-can't-have-her-mastectomy. While I recognize this is a bit beyond the scope of the question you asked, I think that this righteousness—which I feel I have earned professionally—helps me to feel more at peace with my choices, because by sacrificing the pleasures that others are having, I am protecting not just myself but my community. You should feel secure in that knowledge as well.
posted by telegraph at 7:06 AM on November 28, 2021 [8 favorites]

Best answer: I know your question has to do with more than Covid-19, but let me start there. As of today, the best answer is monoclonal antibodies. If you get sick with Covid, you should certainly get them. If you have a significant exposure event and are the US, you should be able to get them as prophylaxis. You should determine the best, fastest route to getting them in advance of need. In my area (CT, USA) that means starting with your PCP. He can arrange the immediate Covid test, and if that's positive, the antibody test. The Covid test should be of a type that returns an answer the same day. Definitely not three days later. My PCP says if I can't get a hold of him, to go to the ER. They should be able to give the tests, and then the monoclonals and you should be home by nightfall (after a very annoying day).

For the future, I'm putting my hope on the new med (azd7442/Evusheld) from AztraZenaca which should give J&J vax levels of immunity for 6-12 months. It's not so much the reduced chance of getting sick, but the huge reduction in chances of hospitalization and death that's really important.

And for more general info: you should collect info on treatments from other threats. For example, if you get the regular flu, you should have Tamiflu immediately.

I'm among the temporarily immune compromised. I'm 75, which is a risk factor, but on the other side I'm retired and I have a (vaxed and boosted) wife who is very interested in keeping me alive. I don't go into stores, and my wife limits her store visits to the very necessary. We get our groceries by curbside pickup. We buy from Amazon even though the prices are higher than local retail. I leave the house when the cleaning ladies are in. My flute lessons are by Facetime. Many of my doctor visits have been by Telehealth. I have a mask in my pocket at all times ready for use if a situation arises.

The one area where I loosened up a bit was sailing my boat in the summer. I had two regular crew who were vaccinated. And, of course, it was outside.

For planning purposes, I think you have to decide which risks you have to take, and that means for your mental health as well as your physical health.
posted by SemiSalt at 7:47 AM on November 28, 2021 [1 favorite]

Best answer: I'm heavily immune compromised and I live alone. I go to therapy, outside, distanced, and double masked with an emotions focused therapist twice a week and did do virtual trauma therapy for a while at the start of the pandemic. I don't really have a good support system where I live, so my risk tolerance is different than it would be if I actually had support. If I get sick with covid, I don't have someone to advocate for me in a healthcare environment, so I am being very cautious. Prior to covid I was a gym rat, and I go on three mile walks every day outside now and sometimes I work out at home. I also cook all of my meals myself and have some other hobbies that pass the time. I do curbside pickup for my groceries. I try to stay off my phone, because it's really hard seeing everyone just living their lives like I don't exist. It's been very difficult and very lonely to realize that most people in the United States want me to just die already; I'm part of the "surplus population," as Ebenezer Scrooge put it. I try to live in the moment, and I tell myself that many people have been through far worse during wartimes, for example. I am far more comfortable than people who live during or through a war, and it's mostly the isolation and loneliness that make things very hard and very boring. I don't have much capacity to learn new things or to try to over perform at work, so I make a lot of art and just try to be as kind to myself as possible every single day. I think my lucky stars for my therapist all the time, and really look forward to our appointments.

I saw a good quote on Twitter this morning: "Being disabled right now is a lot like being locked in a room while all your friends are playing right outside your window, except they're all playing with knives & the next part of the game is them coming inside & seeing how close they can throw them at you without hitting you."
posted by twelve cent archie at 9:47 AM on November 28, 2021 [2 favorites]

Best answer: I am coping with this too (rheumatoid arthritis + immunosuppression), and exercising a similar level of caution. It has been so extremely hard to be disabled this year. Sending good thoughts to you & to everyone else in this thread.

Do keep in mind that not all types of immunosuppression are the same! Not sure that rheumatologists are making this clear to their patients. If you're on biologics or methotrexate for your arthritis, your immune system is compromised, but functioning at a much higher level than someone with cancer or a transplant. Of course, you should still be very careful, but it has helped my anxiety to keep in mind that the newspapers don't understand/differentiate very accurately when they talk about populations of immunosuppressed patients.

On the psychological side — allowing myself a little bit of wiggle room helps me feel a lot freer and saner than being totally strict and uncompromising about my "rules" would. Examples: I don't usually shop in person, but I will sometimes run into my favourite café to pick something up, always during off-peak hours, just to get a feel for being in a public place again. I don't see anyone who's unvaccinated, but made an exception for my baby nieces this summer, and went all-out and hugged and cuddled them rather than masking up and worrying the whole time. I usually video call my friend who works as a nurse, but might make just one exception over the winter during the holiday season. That sort of thing.

The idea for me is that no, I'm not 100% safe, but that the 5% safety I sacrifice in doing them gives me at least a +25% more psychological freedom, which I think is a good trade-off! It's kind of about balancing probabilities. Doing these things occasionally will not increase my risk that significantly, what with all of the other precautions I'm taking.
posted by fire, water, earth, air at 4:35 AM on November 30, 2021 [2 favorites]

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