Flu jab?? Would be great if someone got back to me :)

I sle been nearly a year since beig diagnosed. Still suffering with a lot of symptoms that have been consitant all the way through. On hydroxy and mycrophenolate and still on steriods :(.

Just wonder is it worth me getting the flu jab??? And also want to know does it make you I'll after havig it done???

I am booked in for my flu jab next but it's three days before my birthday and I don't really want to be ill for it as I was near enough on my death bed last year.

Thanks :)

18 Replies

Hi becstaa89,

Good question. I have been advised not to have the flu vaccine with lupus. I can't recall why but I think it was something to do with being a "live" vaccine and our bodies as per usual overreact. I had the flu shot once and was so incredibly ill with flu like symptoms and it was so hard to breathe for 3 months. It ruined my holiday and I was miserable. I have not even had a cold for 3 years and never received a flu vac. I would say that it was due to the vast population who are able to receive the vaccine and have thankfully protected me and to good hand hygiene. I would say talk to your specialist and follow their advice :)


Hi moimoi

Thanks for replying. Ooo that don't sound good. I've heard from just general people that it can make you ill which I don't mind but at the moment I'm still on steriods so I have nothing to be protecting me immune system at all. And being as it's my birthday three days after I am not feeling to be ill. I had a crap birthday last year only good thing was that I was on holiday but I was so ill.

Haha I would ask my specialist if I had onE. At the moment I'm waiting to be put with a new consultant as one retired at the blue back in April/May and now my specialist has moved hospital so in limbo at the moment as I need to be seen.

Sorry for essay.

Thank you again x


Oh no :( thats shocking. All fingers and toes crossed you get a specialist soon. Kick your heels up at your birthday (I'll mentally drive away all flu bugs for you) and have a drink for me to celebrate your special day x


Thank you so do I. Haven't seen no one since 16th of lady month. I'm normally seen every couple of weeks. Still waiting for tests and to see kidney specialist. The last 11 months have been one hell of a roller coast ride to much to grasp just seems one thing after another.

Awwwww thank you I will. Birthday is even more special this year as my gorgeous god son is having his birthday party on my birthday ☺️ X


Hi moimoi-x,

I'm not sure where you received your advice from - if it was a member of your medical team then follow their advice, but generally it is advised that people with lupus have the flu vaccine and it isn't a 'live' vaccine, which means it is generally safe. Read more here -

1 like


It is generally advised that people with lupus do have the flu vaccine, especially if they are currently taking any treatments which suppress the immune system. It is not a live vaccine, so is generally safe, though some people can be known to have adverse effects from it. We have an article written by a lupus nurse which should answer most of your questions about it.


Hi Paul Howard's information is correct as I had my flu vaccine yesterday & I quizzed the nurse with your questions. ALL patients with lupus are advised to have a flu vaccine. I've also been advised to have a pneumonia vaccine also. The vaccine is not 'live' & shouldn't make you ill. What I was told by the nurse was that it takes the vaccine 2 weeks to get into your system for the anti bodies to build so if you have any time of underlying cough, cold etc it will come out. Why not book your vaccine long after your birthday so you won't be worrying about your vaccination. I hope this information helps you & I wish you a happy & healthy birthday!


Hi queenv

Thank you for you advise. Yeah j will ring up and change my appointment for after. Knowning my luck I will get symptoms as I always do and I'm suffering enough at the moment as it is. Everything still showing up active over 11 months down the line. Thanks you I will try :)


I was advised by my surgery to have a flu jab as I have autoimmune hepatitis and lupus, among other things. I had one last year with no ill effects, I had this year's one yesterday and so far have only a sore arm as the nurse said the needles seem to be rather blunt this year!


Hello! I had my flu jab last year and I was on mycophenalte and steroids. I was poorly for 1 day after and spent day in bed. But then I was fine over winter. I am going for mine again next week. I avoided having it near a night out with mates thou just in case I was too poorly to go out!


I'm somewhat like you Moimoi, in that am now on daily hydroxy & myco (and occasional pred tapers). But also am lucky to so far be responding well, with my lupus & secondaries reasonable under control, fingers crossed

I've been following this flu jab question closely for several years. Definitely there is conflicting advice out there within the health system. My feeling is that we need to know our own predispositions & our own version of lupus well enough to be able to discuss this question on an individual basis with our rheumatologist & our gp each year before we make a decision.

When The nhs finally recognised my infant onset lupus in 2011, and I'd just started hydroxy, I had my usual flu jab & got a BIG reaction lupus flare including a triple + nasal passage staph infection & sinusitis and what turned out to be long term simmering osteomyelitis in my upper jawbone, I was on daily high dose antibiotics for 5 months. But I didn't get the flu....

So, rheumatology & my gp have agreed it's ok for me to avoid the flu jab. I'll review this with rheumatology at my 3 monthly appt in December, but I just reviewed this with my gp today, who has proven v reliable over nearly 10 years. she said Myco is a grey area re taking vaccines (especially live vaccines). And because I'm 61, I'm not in a flu high risk group, despite my lupus & meds. AND, she said, BECAUSE OF MY LUPUS, I AM in a high risk group of people who are known to react to the flu jab.

Because I've been infection & cold free for almost 3 years now, and my last flu was in the early 1990s, I've decided to avoid the flu jab again this year with my fingers crossed


Hi, my gp recommended and I got a flu shot last week, I'm okay. But just ask your gp if it's alright to having one. You could wait after your birthday if you worry it may have some symptoms of flu shot. Happy early birthday.


I read that vaccinations can cause an abnormal immune reaction in those susceptible. I would imagine that most lupus sufferers and any other auto-immune problem sufferers would be classed as susceptible. One has to weigh up the chance of an unpleasant reaction with the chance of getting the flu by not having the jab. I don't have them because I feel that I would prefer for my body to make its own antibodies and, as I have an over active immune system anyway - the chances of me having an abnormal immune response must be quite high. I also don't like the thought of what else goes into the jab - including perhaps mercury. We all have to make up our own minds.

I cannot take ibuprofen or aspirin. When I took the latter, I had bleeding in my stomach and was passing black stools. I think the chemist may be worried about a bad reaction for you, but I don't know.


Hi guys thanks for ya feed back.

Well I've moved my jab from next week to the week after. But in goin to see my gp on Tuesday for something else so I will be having a word and finding out more info about the flu jab, so I can decide to wether to cancel it or not.

There's so many different views about the jab. And thought I would ask as I've only been diagnosed since last November and don't seem right at 24/25 to be having flu jab. I'm just worried because I seem to get a lot of side effects off different things. Like the steriods on high dosage I had every side effect on te list haha and other medication I've had over the years.

Thank you for early birthday wishes :) I plan to enjoy turning 25 hehe.

Thank you all for giving me advise



I had my first flu shot last year and I felt unwell for about 2 weeks, I had my 2nd 1 on Monday which I was dreading but I've been fine this time.


Hi i have had flu jabs for the last 5 years and i don't fully understand that it seems every other year i have bad symptoms and get very ill , My GP is on my case to have one now but i keep putting it off as i was so ill last time i think only twice now its been ok , Good luck in what ever you decide but it is recommend that lupus patients do have the jabs. x


Thank you both. I've got till the 29th now to make my choice.

:) x


I have the flu jab every year since being on diaylsis. I had a kidney transplant 4 years ago and i still have my flu jab. It is worth having the flu jab as you don 't know when you may get ill due to lupus. I also have a pneumonia jab.


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