Should NMO patients get the flu shot?

Getting the flu shot is a personal choice. What do I mean by that? As a neuromyeltis optica (NMO) patient I’ve never received a concrete answer as to whether the merits of said flu shot outweigh any potential risks. So that’s what makes it a personal choice; that it is completely up to me to take what little information is available and make a somewhat educated decision. Let me take a step back…

I trust my team of doctors. Since my first attack I’ve always been treated with respect, have had the opportunity to voice my concerns and have always received honest answers. And I’m grateful because I know some patients don’t share my opinion about their healthcare, some even sharing the same team of doctors. Every year I have this discussion and every year there’s still not enough evidence. My neurologist is unsure how my symptoms will react, my general physician sees no harm and my rheumatologist strongly disagrees with the shot for those with compromised immune systems. They all make strong arguments and again, I emphasize, I trust them. I also respect them so much more for just being honest and saying, ‘collectively, we don’t know what the answer is for sure’.

So every year I choose not to get the flu shot. Truthfully, I’m tired of all the drugs in my system so one less excites me.  And I hate needles so if I can avoid one I typically do. But last year my daughter, then a year and a half, came home sick from daycare so often I coined the phrase, “sick diet”, which I attribute to my post-baby weight loss. This year started no different. As soon as the leaves started to change my daughter came home with a cold and I in turn caught it, which became a week long body shutdown. Not wanting to be sick for most of the winter again this year, I opted to try the flu shot finally. On a routine check up with my general physician he suggested the flu shot, which was available right then if I wanted it. It was 8am on a Monday morning prior to a hectic week of work. Sure, some patients feel a little unwell but we guessed the worse I’d feel is a sore arm at the injection site. I have after all, been taking good care of myself, working out regularly, eating and sleeping. As the fluid entered my arm I instantly felt unwell. I started to sweat, developed a headache and my body ached. And the NMO burning…the burning…And just as the nurse put the bandaid on the nausea hit me like the worst stomach bug I’ve ever had. Thankfully a waste bucket was in the room and my modest breakfast found itself in it. Thinking I could just push through my day I headed to my office but within the hour it was evident I had the full blown flu. It took me another week to recover from that teeny, tiny needle. 

I want to put out my disclaimer here: this experience is by no means my opinion that NMO patients shouldn’t get the flu shot. I also want to make it clear that the reaction I had could also have happened to any other person who doesn’t have NMO. I’ve had one bad experience with the flu shot and that’s not enough evidence to determine a pro or against stance. 

If you’re like me and unsure about the flu shot don’t wait until mid season before you make a decision. If you decide against it, encourage your family members close to you to get theirs. Also, I want to reiterate that every NMO patient is different so always consult with your team of doctors.


  1. my neuro says to get it, but only the shot and not nasal spray (dead vs live virus). never have problems other than arm soreness. Been taking it for over 4 yrs.

    Comment by Christine on November 18, 2014 at 7:23 pm

  2. Sarah Hodgson

    This will be my first winter season being diagnosed with NMO and I have decided to stay away from the flu shot at least this year. Depending on how the year goes I might look into it. However, my primary doctor is strongly suggesting I get a pneumonia shot. My neurologist has left the option up to me and at this time I have not gotten one. I was wondering if anyone else with NMO has gotten one or has been given any advice on it.

    Comment by Sarah Hodgson on December 10, 2014 at 2:13 am

  3. Jenna

    Hi Sarah,

    We haven’t heard much about the pneumonia shot and if it’s advised for NMO patients. My guess is that it’s likely a case by case scenario if it’s for you, just like the flu shot might not be right for all NMO patients.

    Thanks for reading!

    Comment by Jenna on December 16, 2014 at 6:20 pm

  4. I loved reading your opinions (even year later)! My first NMO episode began shortly after my flu shot last year and incidentally I was found to have Lyme disease in my spinal fluid. It was 9 months before I was diagnosed wit NMOSD. The flu shot question came up as I was being diagnosed as it was once again that time of year. My infectious disease doctor recommended it with the comment that if I had trouble with it this time i shouldn’t get it again! (My husband just about lost it with that statement. Ultimately I decided to go ahead I had returned to work in the Pediatric ICU where flu abounds and I felt I was better off gaining some immunity vs getting the flu. Happy to say I lived! I had some increases symptoms of my recover (Numbness, tingling, pain) but nothing frightening. that’s my experience.

    Comment by domain name expiration on October 25, 2015 at 5:39 am

  5. Thanks for sharing your experience! It’s tough to know what the right decision is regarding the flu shot as we each respond so differently to all medication. Ultimately, it is your body to make the decision what works best. As we progress further with research around NMO, more doctors feel there is only a small risk around difficulties and so recommend getting the shot (provided it’s the shot and not the live version that is inhaled).

    Please do stay and touch and thanks for reading!

    Comment by all the domains on October 26, 2015 at 3:14 pm

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