To Get a Flu Shot or Not??

[Delta]

Hi, everyone,

I've never had a flu shot before. I do not usually get the flu - the last time I had it was in 1996. But this year I am considering it, due to covid - I do not want to make myself more vulnerable to covid - as well as a potential POTS flare - by getting the flu (my doc told me to expect a flare if I got sick, as with a cold or the flu). However, can just getting the flu shot make me more vulnerable to a POTS flare, and then possibly covid because of the POTS flare, since it will stimulate my immune system as a cold or flu would? What do people here do as far as flu shots go, and is covid changing what you would normally do? Thank you for any input.

[Pistol]

@Delta - I too don't take the Flu shot, I have in the past but it would make me feel terrible, so I have chickened out for the past 6 years. It did not cause a POTS flare when I did get it, but this could be different for other people. Personally I don;t think that the Flu shot would put you at greater risk for COVID. 

[cmep37]

I discuss this every year with my GP and we've always decided against me taking it and making my parents get it instead!  I'm mostly housebound and so my greatest risk is them giving it to me.   Having said that I went to a friend's birthday party for a couple of hours in February this year and picked up a nasty cold which turned into pneumonia - it took 2 antibiotics to clear up and led to a really bad POTS flare.  My parents are therefore keen on me getting a flu jab this year - I just don't know what to do for the best!

[HCD77]

@DeltaAll I know is last year at this time I felt really good. I was working a full time job and didn’t even know I had POTS. I did have the neuropathy in my feet, red feet upon standing,  heat intolerance , wore compression hose because I thought it was varicose veins, so basically I had many symptoms of POTS but thought it was other things. Then in early October I went to get my regular flu shot and exactly a week later started have heart palpitations, night sweats , night mares and waking up every 2 hours. I immediately went to the doctor , but all tests where fine. It kept snowballing into major fatigue, nausea , chills all POTS  etc . Here it is a year later and I am wondering if it was the flu shot that exacerbated my existing dysautonmia that I didn’t know I even had . I still wonder to this day if it was the flu shot . I’m trying to decide if I want to take it this year like you . If I don’t this will be the first year I haven’t received it. I probably will take it though because I’m high risk because of age . 

[p8d]

On the advice of my dysautonomia neurologist I have always gotten the flu shot every year since becoming ill. I had zero side effects this year or last year and previously I had fatigue the next day but that’s not unusual if I go anywhere. I was told just be sure it was preservative free. I am pretty sure I got a mild case of the flu 3 years ago but the shot likely saved it from becoming much worse with a really bad dys flare. Viruses are what set dys off in the first place and are known to exacerbate and cause flares so my logic is to do everything possible to avoid them.

[Delta]

@Pistol, @cmep37, @HCD77, @p8d,

Thank you all for your responses, all of which are helpful and very much appreciated!! At this point I am inclined to not have the shot, although I am waiting to hear back from my POTS doc for his thoughts. I will post again once I've heard from him.  Thank you again!!

[KiminOrlando]

I always get the flu shot. It makes me feel a little off for a couple of days but when I don't get the flu shot, I get a huge case of the flu that takes about 2 months to get over. It just makes sense for me.

[Scout]

On 10/4/2020 at 12:18 AM, Delta said:

@Pistol, @cmep37, @HCD77, @p8d,

Thank you all for your responses, all of which are helpful and very much appreciated!! At this point I am inclined to not have the shot, although I am waiting to hear back from my POTS doc for his thoughts. I will post again once I've heard from him.  Thank you again!!

It's interesting you asked about the flu shot, as my specialist — who is the head of a very good medical school here — has told me that they are seeing a clinical correlation with people get the flu jab, and shortly after, getting POTS symptoms for the very first time. Apparently this is happening more in women, too.

Of course, my specialist can't make any definite statements (and I think she'd probably lose her job if she outright said "don't get vaccinated"), but she did make it clear to me to be careful and to be aware that people seem to be having flares, sometimes very severe.

Definitely advisable to speak to your specialist and do what feels right for you.

I am certainly not against vaccines per se, but I'm not going to be getting the flu jab as I've had bad flares in the past and got very sick after a set of 3 vaccinations a decade ago (when my POTS first started).

 

[yogini]

I always get a flu shot without any POTS flare up.  I do this to avoid getting dehydrated from the flu. 

This year there was an extra incentive. Once flu season hits, if you get a fever you won't know if it's the flu or COVID.  Everyone in this situation will need a COVID test to sort this out, and there is already a shortage of COVID tests.  It seems like it would be super stressful to have that happen, with POTS also in the mix.  For me, it is a relief to remove the flu from the equation.    

For those who are considering it, earlier is better because there is expected to be a shortage of flu shots this year.  

 

[MomtoGiuliana]

I always get the flu shot.  I have never had any symptoms or POTS flare afterwards.  I am personally more concerned about what getting the actual flu would do to me.  Bc I can get POTS flare ups with common colds.

[Delta]

@MomtoGiuliana@yogini @Scout@KiminOrlando @p8d@HCD77 @cmep37 @Pistol

Hi, All,

Thanks again for all of your comments and advice, because absolutely everything has been helpful. The comments have been all over the board, but every one of them makes perfect sense.  I did finally hear back from my POTS doc's office (the CNP and not the Doc himself), and she said that she related my concerns to him and he said there should not be any problem in terms of a POTS flare with my getting the flu shot.  But, after reading all of the comments, talking to others and listening to my gut feeling, I've decided, for the time being, anyway, against getting the shot.  As I mentioned in my original post, I've never had a flu shot and the last time I had the flu was in Oct. 1996 and, before that, probably when I was a child. I am retired now but, in the almost 30 years before I retired, I rode either a commuter bus or van pool to and from work, packed full with people, and did not get the flu, except for that one time. Also often rode the subway downtown where I worked. Came in contact with a lot of people at work and did not get the flu. I'm hoping that because we are all now wearing masks, social distancing, washing our hands frequently and still not going out as much due to covid, that might even further lessen chances of the flu spreading.

Thanks again to everyone and I wish all of you a healthy, flu-free and POTS-flare-free season!! 

[MomtoGiuliana]

I agree with all the masks and social distancing flu should be way down this season.  I think from a population perspective flu shots are being encouraged bc flu + COVID may put extra strain on hospitals this winter.

[DebGrace]

Interesting thread. We have only taken the flu vaccine once in the past 6 years, and my now 13-yo son got influenza-b with probable covid-19 and a terrible POTS flare. I just read a fascinating article online that research is indicating an almost non-existent flu season in the regions that typically have flu first (Australia) and they attributing this to increased hygiene and social distancing. That makes me actually feel better about risking no shot again this year.

[Ashleigh]

On 10/10/2020 at 5:31 AM, Scout said:

It's interesting you asked about the flu shot, as my specialist — who is the head of a very good medical school here — has told me that they are seeing a clinical correlation with people get the flu jab, and shortly after, getting POTS symptoms for the very first time. Apparently this is happening more in women, too.

Of course, my specialist can't make any definite statements (and I think she'd probably lose her job if she outright said "don't get vaccinated"), but she did make it clear to me to be careful and to be aware that people seem to be having flares, sometimes very severe.

Definitely advisable to speak to your specialist and do what feels right for you.

I am certainly not against vaccines per se, but I'm not going to be getting the flu jab as I've had bad flares in the past and got very sick after a set of 3 vaccinations a decade ago (when my POTS first started).

 

This is very interesting. I’ve never had a doctor fully confirm my suspicions about my dysautonomia onset, but my initial symptoms occurred about a week after my first flu shot in 2010. I didn’t make the connection at the time, and my symptoms gradually went away that time, but the following year I had another flu shot that triggered the symptoms to flare up again and much worse.
I no longer get a flu shot due to it triggering a flare up of symptoms for me. I’d rather practice good hygiene and take the risk of catching the flu. I’ve gotten the flu once in 9 years of not receiving the shot, and while it did make my symptoms flare up, to me it’s better than dealing with the shot symptoms annually. 

[Katiek10]

I was wondering if any of us who are on fludrocortisone are at higher risk if we get a flu shot, since I was told the medication can weaken my immune system? I’ve been debating getting one for weeks, and finally decided not to because I just don’t know what might happen, and feel crappy enough as it is most days. Neither my PCP or neurologist really had a good answer when I asked.

[Knellie]

   My mom has Chronic Fatigue and Fibromyalgia, and she got a flu shot and had a horrible reaction. She got super sick and got a super high fever of 102.8. That shot also caused erythema nodosome on her arm, which is painful and can last up to a year. I really would not recommend it, but all of our bodies are different, so it is up to you. That was just my experience.

[KiminOrlando]

Just a follow up. I got the flu shot October 29th. I take fludrocortisone. I have not had a flare. But everyone is different. 

I'm hoping flu season is less this year too because of masks, increased attention to hygiene and social distancing. Time will tell. Hope everyone is 'well'.

[Ashc]

I say yes, why not. If it adds to your protection and peace of mind.