5 Items Every Person on Immunosuppression Medications Needs

If you have an autoimmune disease – such as rheumatoid arthritis – you’re probably on immunosuppressants, as are people with other conditions like cancer. What a lot of people don’t realize is just how dangerous immunosuppression can be. When I first went on medications that suppressed my immune system, I thought nothing of it. My rheumatologist was just overreacting, right? (Note: this was before I realized that my rheumy reacts exactly as much as is necessary for any situation. I adore him. Anyway…) When I kept acting blasé about it like I wasn’t on a form of chemo, my rheumatologist gave me a very stern talking to that included explaining, “If you get a cold, it can turn into bronchitis. If you get bronchitis, it can turn into pneumonia. If you get pneumonia, you can die.” Needless to say, I started taking this more seriously.

7.5 years and 3 more immunosuppressants since that conversation, I think I’ve got a pretty good handle on living with a suppressed immune system. If you’re new to it or just aren’t sure if you’re doing all you can do to protect yourself, this post is for you.

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If you live with immunosuppression, you need to be extra vigilant about germs. I'm sharing the 5 things that I think every immunosuppressed person needs in order to help you stay safe.

Why Does Immunosuppression Matter?

Why are people on these medications? These meds are used for a variety of conditions. In autoimmune diseases (such as Crohn’s, rheumatoid arthritis, and MS), the immune system is too active and focused on trying to destroy the body. This can only be prevented by medications that shut down or severely compromise the immune system. Like I mentioned, I used to be on a form of chemo (I’m not on another form), but that’s not the only immunosuppressant. DMARD’s like sulfasalazine and arava are also immunosuppressants. Additionally, cancer patients have suppressed immune systems due to chemo. On the other hand, there are also patients who might be immunosuppressed, but not because of medications. There are some conditions that include immunosuppression.

Why does this matter? The United States is currently experiencing a terrible flu season. It is widespread in every state except for Hawaii and has killed 30 children (it is unclear just how many adults have died from it). The current hospitalization rate is 31.5 people per 100,000. In California alone, 74 people under the age of 65 have died (x). I’m already paranoid about getting sick, which I think is understandable considering I’m on 4 immunosuppressants and was hospitalized half of the times I got sick in 2017. But with how bad the flu is, I’m more nervous than usual. Plus, because I’m immunosuppressed, when I get sick, I get it worse than everyone else. For example, in October, my sister got a cold. Because we live together, I caught it, but I got bronchitis instead of a cold.

Since I think that I’m now a pro at living while immunosuppressed, I figured that I would share my knowledge in the hope that it will help some of you. If you’re on immunosuppressants and have a specific product that helps you but I didn’t include, comment below and let me/other readers know!

Living with immunosuppression can be really difficult because you can get dangerously sick on a regular basis. Now that I'm nearly 8 years into the immunosuppressed life, I'm sharing the products that will help you protect yourself if you're immunosuppressed.

5 Items Every Person on Immunosuppression Medications Needs

Hand Sanitizer – Potentially the most important item here. You touch so many things over the course of the day, including many that aren’t cleaned as regularly as others like doorknobs. Try not to touch your face unless you’ve recently sanitized your hands, and definitely don’t eat anything with your hands unless you’ve washed or sanitized them. I picked up so many random viruses over the years before I started carrying hand sanitizer on the regular. I still pick up some (you can’t help it if someone on the street sneezes near you), but it’s less often than it was. Sanitizer is your best friend!

Reusable Mask – I held off on this for 6.5 years because I didn’t want the weird looks. Then I mentioned at the Arthritis Foundation Advocacy Summit that I didn’t have one and several of my friends scolded me, so now I have 2. I got mine from Vogmask, and they’re super comfortable. I wear them whenever I go into the hospital (where 7 of my 9 doctors are) and when I fly, and I keep one in my bag at all times so if I’m on the T and someone is sick, I can put it on.

2020 Kate: In the age of COVID, valved masks aren’t awesome. Vogmask masks are different from most valvued ones in that they don’t let air out, but I don’t want to argue with people about that when I wear them, so I now have 2 masks from Mighty Well.

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Pill Box – If you take medications daily, I suggest putting them all in a weekly box instead of keeping them in their individual bottles. You might be careful about washing and sanitizing your hands regularly, but you have no idea if the pharmacists or pharmacy techs are or if they came into contact with someone who was sick. I actually have 2, each for a week, so I only have to refill them every 2 weeks.

Disinfectant wipes – SO IMPORTANT! You may think about disinfecting your hands, but what about your devices, bags, etc.? I work at coffee shops sometimes, and if I put my phone on the table, it could pick up germs from the guy with a cold who sat there before me. I love these Well-Kept screen cleansing wipes. As for other items, I use Clorox disinfecting wipes and they do a great job.

The Flu Shot – If you can get the flu shot, you really really really should. Like I mentioned, people are dying from the flu this year, and people on immunosuppression medications are really at risk for that. I know that some people can’t get it depending on their conditions, but if your doctor says you can get it, you really should. The shot may not be as helpful this year as it was in the past, but it is making the flu easier to handle. Definitely check with your doctor before you get it, though.

What item is most important for your life with immunosuppression?

Like this post? Check out:

Dating with a Chronic Illness, How To Talk about Your Chronic Illness, Preparing for Chronic Pain Medical Appointments, What To Do if a Doctor Doesn’t Believe You

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  • Reply Sebastien

    I am glad to see I have all 5 items. I am on a targeted immunosuppressants for Ankylosing Spondylitis (IL-17 Inhibitor) since 6 months I am glad that I passed with winter without sickness o/
    I would add to the list: a supply of adhesive strips for emergency cuts on fingers and scraps. If one cut gets infected that could get nasty quickly.

    January 24, 2018 at 9:38 am
    • Reply Kate Mitchell

      Oh so true! I go so many bandaids because it takes forever for them to heal. And one year a cut got infected and new tissue grew over it and they had to cut off that new tissue. I’ve been super paranoid ever since.

      January 25, 2018 at 12:59 pm
  • Reply Giftbearer

    I’m on Plaquenil and this week got a urinary tract infection. Those tend to escalate quickly in my body anyway, but I’m seeing the Rheumatologist tomorrow and asking if I should be stopping it while I have this infection. My GP didn’t really know the answer to that. I don’t know if there is anything that prevents this kind of infection though. E-coli seems to multiply in my body every chance it gets.

    January 24, 2018 at 11:34 pm
    • Reply Kate Mitchell

      Ugh that sounds so unpleasant. From what I’ve heard, it really depends on the medication. For example, one of my immunosuppressants takes forever to get out of your system, so my rheum told me there’s no point in going off of it if I get sick because I’ll probably be better before that med runs out. Good luck to you!

      January 25, 2018 at 1:01 pm
  • Reply Kristiana Wajnblom

    I’ve never connected with a person or blog more than this post & you! I have ulcerative colitis, and have been on and off of Prednisone for the last two years, and I’m also on a therapy drug full-time. So, to say I’m a nervous wreck about getting sick would be an understatement. However, I’ve never thought about bringing disinfecting wipes with me… umm, hello. NEED TO DO THAT!

    October 2016, on my honeymoon, I contracted e.Coli and had it for MONTHS. My body could not fight it. I dropped close to 30 pounds, I was extremely ill and could barely walk or even shower at one point without becoming fatigued. I had to take a minor leave of absence from work just so I could stay home and rest because every day tasks were too much for my body. I ended up having to get a blood transfusion once my body was finally getting rid of the e.Coli because I was also in an inflammation and couldn’t take Prednisone or any antibiotic because it could cause renal failure etc.etc.etc. I was losing blood, weight, and extremely anemic.

    Sorry for the novel, I just felt compelled to share a bit since this is a topic I feel like I don’t get to talk about much because the majority of the population doesn’t understand autoimmune disease and why it’s so important for us #spoonies to be extra careful in everyday life.

    January 25, 2018 at 10:17 am
    • Reply Kate Mitchell

      I’m sorry that you’re in this boat, too! That e.Coli sounds TERRIBLE. So many people don’t understand this life!

      January 25, 2018 at 1:02 pm
  • Reply Cathy at

    Great suggestions! I’m avoiding public places as much as possible until this flu season is over. One would think hand washing is my favorite thing to do. I take immunosuppression seriously!

    February 1, 2018 at 10:42 pm
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  • Reply Cat

    I have RA and have been on different immuno suppressants over the years. Per my Rheumatologist recommendation, I take 1,000 mg of Vit C and 30 mg of Zinc daily. When i forget to take it for 5 days or so, i get sick. When I remember to take it, I rarely get sick.

    May 21, 2020 at 9:41 pm
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