Flummoxed By the Flu

As a person with Rheumatoid Arthritis (RA), I think a lot about my immune system. RA is an autoimmune condition, meaning that the immune system malfunctions and attacks healthy joints and tissues. The thought, “Why is my body attacking itself?” has gone through my head countless times in the 17 years since my diagnosis. As if that weren’t enough because the immune system is misdirecting its efforts, people with RA are more prone to infections.1 Furthermore, autoimmune conditions are often treated with immunosuppressant drugs. Since it is the immune system that is attacking healthy joints, tissues, and muscles, suppressing the immune system decreases the damage it can do to the body. The flipside is that the immune system exists to keep us healthy, so by suppressing it, we limit its ability to fight off germs and viruses. It is most certainly an RA catch-22.

With all of these factors at play, I think about my immune system far more than my healthy peers. Having RA and taking Orencia, an immunosuppressant, to treat it, I get sick more frequently than most of my peers, and I tend to stay sick longer.

Precautions for those on immunosuppressant drugs

As this is the case for most people taking immunosuppressants, experts recommend that people like me on immunosuppressant drugs receive annual flu shots.2 The rationale is that our bodies are less able to fight off the flu virus if we are exposed to it. However, that’s also the exact reason why many people with RA are wary of getting the flu shot. Many of us worry about introducing even a tiny amount of a virus into our systems, fearing that our bodies will be unable to defend ourselves from even the minor assault of a flu shot.

I have that fear each flu season, as I have indeed felt sick for a day or two after receiving the flu shot. Therefore, I’ve explored the issue and found there is a preponderance of research that indicates that introduction of “killed vaccines” into RA patients is safe and effective (the flu nasal spray, which contains a live virus, is not recommended for patients with autoimmune conditions).3 While the flu shot has made me sick, researchers argue that the flu makes one much sicker.4 Furthermore, the flu can cause severe health issues, such as pneumonia, in people with compromised immune systems.

The dilemma of getting the flu shot

With that knowledge, I opt for a flu shot each year, but I do so with hesitancy. This past flu season, my rheumatologist validated my concern. We had the following exchange at my fall appointment:

Doctor: “Have you had a flu shot?”
Me: “No, but I should get one, right?”
Doctor: “I’ve stopped telling people either way because it seems like every time I encourage a patient to get one they come back saying it made them sick. So now I just let people know it’s available in our office but I don’t push them to get it.”

I found this dialogue very refreshing. Too many doctors disregard their patients’ personal experience when it doesn’t conform to statistics (and I feel like I’m frequently an outlier when it comes to statistics). His honesty about and openness to patient self-reporting actually made me less hesitant about getting the flu shot. Somehow the validation of his acknowledgment that I could indeed get sick from the vaccine made me more willing to take this calculated risk.

Fast forward two months and the flu was unusually rampant. I work in a school, and some classrooms were half-empty due to so many confirmed cases of the flu. I did not have a reaction to this year’s vaccine, so I was feeling grateful I had opted for the flu shot. That was all the more the case when my four-year-old tested positive for flu. I snuggled and comforted him throughout the week he was sick, all the while crossing my fingers I wouldn’t contract his illness. I was also kicking myself that I had not gotten him a flu shot, worried that our entire family might come down with it. The value of the vaccine was rising in my book.

However, when I took my son for a re-check, the pediatrician said that the strain he had caught wasn’t covered by this year’s flu vaccine, and therefore wouldn’t have prevented it anyway. Of course, I’d heard that before, but having the direct experience with my child contracting a non-covered strain of the flu made me question the flu shot anew. Why risk introducing a tiny dose of a virus into my compromised immune system if it might not even be the same strain of virus that I come into contact with? Potentially I could have a bad reaction to the flu shot and still get the flu.

As my son and the scores of students at the school where I work all returned to their classrooms after their bouts of the flu, I was incredibly grateful that somehow, even with my malfunctioning and medically suppressed immune system, I had fended off the flu. Then my nose started running and my throat started itching. I hoped it was just the beginning of the allergy season. The next day, huddled under layers of covers in an attempt to ward off the chills racking my body, I took my temperature. With a reading of 101.5, a rarity for me as I usually don’t get fevers even when I have an infection, I knew I needed to see a doctor. A couple of hours later, I’d tested positive for the flu.

Lying on the doctor’s table, I felt frustrated all over again with the flu shot. However, the doctor told me it was a very good thing I’d had it, explaining that people who are vaccinated and then contract the flu tend to have milder symptoms and avoid the severe complications that can require hospitalization. It turns out the Centers for Disease Control agrees with him.5

The week that followed was awful. I was in bed for days, my body riddled with aches and chills. Any small task, such as taking a shower or heating up some soup, seemed to require a herculean effort. I thought about what the doctor had said and decided that if the flu could be even worse than what I was experiencing, then any decrease in symptoms was worth the risk of a reaction to the flu shot.

This flu season my opinion of the vaccine changed so often that following it was like watching a long volley in a tennis match. Yet, in the end, I am glad I had the vaccine, and I plan on getting it again next year. That being said, I can’t say I won’t have that same hesitancy and be likely of asking my doctor, “I should get one, right?”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Mayo Clinic Staff Print. Symptoms and causes. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/dxc-20197390. Published March 18, 2016. Accessed April 12, 2017.
  2. MHS RMMD. Arthritis News : Vaccinations in RA: Stay Healthy! Arthritis Information. https://www.hopkinsarthritis.org/arthritis-news/vaccinations-in-ra/. Published March 27, 2012. Accessed April 12, 2017.M & Rheumatoid arthritis: Vaccines. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/in-depth/rheumatoid-arthritis-vaccines/art-20096217. Accessed April 12, 2017.
  3. The New York Times. The New York Times. http://www.nytimes.com/health/guides/specialtopic/immunizations-general-overview/print.html. Accessed April 10, 2017.
  4. Misconceptions about Seasonal Flu and Flu Vaccines. Centers for Disease Control and Prevention. https://www.cdc.gov/flu/about/qa/misconceptions.htm. Published November 17, 2016. Accessed April 10, 2017.
  5. Vaccine Effectiveness - How Well Does the Flu Vaccine Work? Centers for Disease Control and Prevention. https://www.cdc.gov/flu/about/qa/vaccineeffect.htm. Published February 15, 2017. Accessed April 10, 2017.

Comments

View Comments (11)
  • Connie Rifenburg
    2 years ago

    As I read everyone’s comments about the Vaccine for Flu this year, I was reminded that my dr. told me that the vaccine this year did not include the strain that was showing up.They have to develop enough of the vaccine based on the previous years and history of previous outbreaks prior to knowing exactly what strain will hit. His advice was that altho the current flu was not in the mix, that didn’t mean that everyone would GET the ‘new’ flu.. so why not protect against the other flu out there?

    I thought that sounded right, and altho this is the first yr I’ve gotten the flu, I still think it was less severe than if I had not taken the vaccine. My dr. also started me on the pneumonia vaccine and next year is a booster shot of that, plus a secondary pneumonia vaccine that is given to people, like us, with compromised immune systems. Once again, this was my first year getting pneumonia in the past 4 yrs but prior to getting the pneumonia vax, it had become an “annual” thing for me to get some form of pneumonia prior to getting the vaccine.

    And last, the live virus vaccination for shingles – I was told emphatically that it was NOT to be given to imuno-suppressed patients. I got full blown shingles twice in the last 14 yrs of my RA. Believe me, you KNOW it when you get it, and even a “mild” case is very painful, and can continue to come back and damage the nerve endings in the area it appears in. My area was the traditional “band” just above the waist and toward the spinal cord. Both times I was in terrible pain and nothing helps until it begins to go away. Once you have shingles you are more prone to have another outbreak. I found that stress was a precursor to my outbreaks. If I were considering which vaxxes to get, shingles would NOT be on my list at all.

    I guess we all have to make the decision as to which vaccinations we choose to take, but like Tamara stated, if the flu shot kept her from getting a severe case of flu and a MILD case felt that bad – then I’ll take the vax! Our “mild” is normal people’s “severe” I believe. 😉

    Thanks for bringing these vaccinations to the attention of everyone on here because I believe that too many primary doctors don’t always take the time to educate us about what immune compromised people should or should not be doing.

    Sincerely,
    Connie

  • Tamara Haag moderator author
    2 years ago

    Hi Connie,

    Thanks so much for sharing your own experiences and that additional information about shingles. It’s so helpful to hear different peoples’ experiences and perspectives, as it doesn’t seem that doctors/researchers have RA “all figured out,” especially since there are so many variations of symptoms and treatment responses from person to person.

    As you mention that “Our ‘mild’ is normal people’s ‘severe'” I thought you might relate to this article about the pain scale, and how different people with chronic conditions’ experience with pain can be from those who only experience it only every now and then: https://rheumatoidarthritis.net/living/on-a-scale-of-1-to-10/.

    It’s great to hear your thoughts on this matter, so I hope you will continue sharing with our community any time you feel so inclined.

    Gentle hugs,
    Tamara

  • Lirael
    2 years ago

    Hi All, I decided to get the flu vaccine yesterday after checking out my government’s health department’s immunisation advice on vaccinations for immunosuppressed people. As an asthmatic, even a bad cold can be life threatening, and this is my first year with RA as well on Arava and Plaquenil. There is also good advice on vaccinations travellers would consider. http://www.immunise.health.gov.au/internet/immunise/publishing.nsf/Content/Handbook10-home~handbook10part3~handbook10-3-3#3-3-3

  • Tamara Haag moderator author
    2 years ago

    Hi Lirael,

    Thanks so much for sharing that information and your own experience! As that information is from Austrailia, I’m guessing that you may live there as well, and that this may therefore be the beginning of cold and flu season in the Southern hemisphere (we’re currently having springtime in the States). We welcome you to keep us updated on how things are going for you as far as whether you are able to avoid the flu this flu season or any other aspect of your experience living with RA.

    In addition, as RA is new for you, please reach out via this website, our website’s Forums page: https://rheumatoidarthritis.net/forums/, or our Facebook page any time you have questions or concerns you’d like to share. Being diagnosed with RA can be overwhelming (all the more so when you’re already contending with another chronic condition), so please know that we are here for you any time you need information or support.

    Thanks for being part of community and sharing with us!

    Wishing you all the best,
    Tamara

  • Patricia
    2 years ago

    I am a firm believer in vaccines. I keep mine up to date religiously! I get a flu shot every year and have for years. In the past, no shot, got the flu! Never (knock on wood) have I ever had the flu in seasons when I got my vaccine. I also keep the Dtap up to date; I’ve had the shingles vaccine & later on, I did get shingles, but it was super mild! 3 blisters and very little discomfort. My Dr. said the mildness was due to the fact I had the vaccine. I, as I stated, am a very firm believer in vaccines!!!

  • Tamara Haag moderator author
    2 years ago

    Hi Patricia,

    Thanks so much for sharing your experience and perspective with us! I’m glad that so far vaccines have helped you avoid some additional illnesses.

    Thanks for being in our community,
    Tamara

  • Anke Schliessmann
    2 years ago

    Just watched Episode 5 of a series of eye opening videos on the truth of vaccines: https://go.thetruthaboutvaccines.com, I need to perform some more research on the topic, but it seems to me more likely that I’m going to skip more vaccines in future that are likely do more harm to our bodies which are already reacting autoimmune. With all those toxic adjuvants like aluminium and mercury in most of the vaccines it is even likely that vaccines might have caused my immune disease. I wished I would have heard about this earlier the weighing out the risks of being vaxxed against the risks of getting sick.
    But as I said, more personal research is needed for me, especially since I’m going to India next year for a business travel and need a vaccination strategy for this.

  • Tamara Haag moderator author
    2 years ago

    Hi Anke,

    Thank you for sharing your thoughts! There is definitely much controversy surrounding vaccines, with some worried about negative effects vaccines may possibly cause and others concerned about outbreaks of preventable disease (such as the measles outbreak in California in 2014/2015, and another more recent one this year) that occur when there aren’t enough people being vaccinated to have “herd immunity.”

    Personally, I would be shocked in genetics did not play a role in autoimmune disorders, as my own experience mirrors the scientific research that indicates that if you have an immediate relative with autoimmune diseases then you are more likely to develop one yourself. My sister and I both have RA, Hashimoto’s hypothyroidism, and psoriasis (all auto-immune), plus she also has Type I Diabetes and my mom has Hashimoto’s. I wrote this article about some of the research I did that finds that those with relatives with autoimmune disorders are more likely to develop one themselves: https://rheumatoidarthritis.net/living/hypothyroidism/.

    I mention that to say that there are many possible factors that could have caused your autoimmune disease. Unfortunately, researchers are still far from fully understanding why autoimmune conditions occur. They continue to learn more and more, and develop more targeted medical treatments in the process, but we’re still a ways off from having autoimmune disorders “figured out.”

    As there is a lot of controversy surrounding vaccines, it can be hard to find balanced information. Hopefully your rheumatologist can be helpful in this matter as you try to weigh the potential risks of getting vaccinated with the potential risks of not getting vaccinated. As those of us with compromised immune systems are more susceptible to illness, it makes issues such as these very complicated and can feel “high stakes.”

    I wish you all the best as you research and consult with your doctor in making this decision, as I know how uncomfortable I’ve felt trying to make my way through similar health-related dilemmas. I welcome you to continue reaching out anytime you have a perspective, experience, or question you’d like to share. I’m glad you’re in our community!

    All the best,
    Tamara

  • Lawrence 'rick' Phillips
    2 years ago

    I find so few reasons decline the flu shot, that I get one every year at the first chance. Yes occasionally i still get the flu, but It has never been as bad as the times before I was setting the shot. Count me as a believer.

  • Richard Faust moderator
    2 years ago

    Thanks for writing Rick and glad to hear that the flu shot has helped you stay healthy. On top of the flu shot, there are quite a few others that are recommended for those with compromised immune systems, such as pneumonia, whooping cough, and bacterial meningitis. As this article on RA and vaccines, from one of our contributors, notes “It is generally suggested that immunocompromised RA patients should not take vaccines which contain live viruses or bacteria,” such as the shingles vaccine, but the opportunity exists to avoid quite a few serious infectious diseases. Best, Richard (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    2 years ago

    Thanks for sharing your thoughts and experience! We’re so glad to have you in our community. Have a great day, Tamara

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