Flu shot with APS?

I have found information showing that atibodies increase after a flu jab, and that in pts taking immune suppressants the body won't elicit a strong response to even make the flu shot effective in many people...

I wonder if its safe, and seeing my doc on Tuesday hoping she will have an answer.

It seems my antibodies are stil high from the flare I have been in, and worried if they will increase more and make me more symptomatic? Should I wait until flare is done and levels are lower or should I just cover myself with lovenox for a period of time like a week or two just in case?

I ask because at work if I don't get the flu jab I will be required to wear a face mask from Nov 1st through March 31st and will have a bright huge sticker on name badge telling everyone I didn't get the flu vaccine! Then that will lead to questions and I will feel like a leper as prob be one of the only ones.... Seems punitive but no way around it. Even if I left the job, the other hospitals also do the same thing apparently....

34 Replies

  • Hi Kristina

    I`m no expert but have Asthma as well as the APS Fibro/Lupus overlap and do have the Flu jab.

    Couldn`t really tell what was flare and what was side effects of vaccine, I did have an incredibly swollen and painful arm at vaccine site.

    Would still have the jab though as last time I caught flu was hospitalised after collapsing at work.

    Hope others will be along with more help on this one cos it is so difficult to know whats right or wrong thing to do.

    My daughter has to have HPV vaccine and I can`t seem to get a straight answer off anyone regarding its safety in people with Hughes, Lupus in the family. Scared of aggravating her immune system and starting something......

    I hope you feeling well today,

    Take care gentle hugs Sheena xxxxxxx :-) :-) :-)

  • Hi there, I can only speak from experience... my GP... (my new one, after very poor care).. has really tried very hard to help our family... and when I inquired about it a couple of years back, he felt it was not a good idea... having noticed how I react to virus, allergy and in general... however I do have overlapping conditions... ie psoriatic arthropathy, sjogroens, hughes and now possible hypothyroid.... however both myself and my children have had awful reactions to some drugs! I guess he took the overview and felt that I might have the wrong sort of reaction. It will be interesting to hear if others on here have had it over the last couple of years or so, or considered to be perhaps not suitable for similar reasons to myself. M

    ps my daughter had the HPV vaccine... I was a little concerned... but weighed up the idea carefully.... she was fine!

  • Hi Kristina - I had the flu jab last Saturday and am absolutely fine, no side effects whatsoever. The only thing to watch out for is any possible changes in your INR as warfarin, unsurprisingly, can act differently for a few days. If people have lupus too, then they must consult their specialists as anyone taking immunosuppresents might have a bad reaction or flare.

  • hi kate jet here from u.s.a. i have been getting flu shots the last couple of years , i dont rember any problems but i called my nurse ,she is going to look it to see if i might have had a bad jump or drop because my inrs have been all over the place since dia. in aug 31 2009 . my nurse welcomes any info i can get from u people. got a question u may be able to help me with , why does unlock keep losing my password has happened 5 times even though i reqest keep signed in . maybe you can get some one to help ,much appreciated . i am not real good at this so bear with me please bbn jet

  • Hi Jet - I will let the technical team at Health Unlocked see your email so hopefully they will get back to you soon.

  • HI

    I have the Flu jab and I seem to be OK. The doctor normally call or write to you to make an appointment as any one with Auto immuine problems then you are entitled to this.

  • I had the flu jab last year which apparently is exactly the same as this years jab. I was not dx then but of course still had the same conditions!! I was fine and I react to everything!!! I was told to take paracetamol and ibuprofen a couple of hours before hand and to continue for the following day.

    Apart from a little sore arm for a few days it was ok.

    I was meant to have it a couple of weeks ago but canx because of moving. Will be having it done next week. I am not concerned.

  • Good post Kristina.

    I was thinking exactly the same thing? I put it off last year and thankfully didn't get the flu but I feel I'm pushing my luck if I keep doing that especially with all the people I interact with in my job.

  • I'm in the same boat as lots of others i think!

    Like travel nut have put it off last year and got away with it but i work in education so come into contact with lots of people. The idea of upsetting my system is not pleaseing me.

    When i go for my appointment at St Thomas on wednesday i am going to try and get the answer to questions like this so i will post any answers i get hope this help

  • Hi Kristina

    I had the flu jab last year for first time (took me 2 years to decide). I was fine, arm ached a bit but that was all.

    Good luck with whichway you decide.



  • I have always been advised by Prof. Hunt to get the flu jab and am a priority patient (along with the old people and children) at our local surgery and it shouldn't be any other way.

  • Hi All,

    I have 5 kids and of course all their friends coming over and I volunteer at their schools which means I am around hundreds of kids throughout the flu season so I of course asked the same question. I asked my hemo, rhuemy, and GP and figured go with the majority rules but they all said the samething. The flu shot is safe to get as long it is NOT a live virus. I hope this helps.


  • I have Just had flu jab yesterday- no problems carole-j

  • Hi I had it last year for the 1st time & reacted quite bad, I asumed it was the after affects for a bit :( Due to have this years next week, hopefully I shant react to it this time :)

    Hope you're ok xx

  • Suzy, If you are sure it was the flu jab, please talk to your doc as from what I understand this years shot is exactly the same as last years! it contains three types including H1N1 and possibly A and B influenza I think?

  • Hi,

    If the flu jab is so effective why do you have to wear a mask Kristina? After all isn't everyone else covered if you do contract it?

    I won't have the flu jab. I had a terrible reaction to one years ago and am not prepared to risk it again.

    Take care all xx

  • If I don't have it I may be exposed to flu by patients. Can't evn prove immunity by doing titers like they do for chickenpox, measles, etc....

    I am scared too, I know my antibodies are still very high from my flare. I am getting much better but scared that I may have them go higher and then back into flare or worse.

    Not on anticoags so wondering if I should cover myself for 2-3 weeks, a month after? Just to be safe? I really don't have the answer yet.

    I just know it can't be wise to have it now, with the flare... Maybe if I wait?

    I see doc on Tuesday so I will ask her then, I have the package insert.

  • go to occupational health and tell them you cannot have the flu vaccination as you have a reaction. If they are so worried that you could be a carrier let them put you on full pay sick. I worked has a midwife and never had a flu jab, as i react many vaccinations and drugs. Do not let them hound you like this. Go and see your union.

  • No union here..... There really is nothing I can do. They say all hospitals in area are doing this. Georgia has the highest rate of influenza in the country I think and this is why they are doing it. Last year it was off the charts.

    If I get infected by a sick patient coming thru the A & E (emergency room) which is where I work, I would be contagious and shedding flu to others for possibly 48 hrs before symptoms so its to protect patients.

    Just seems punitive and very restrictive.

  • Greetings Kristina et al:

    Frankly, I am worried about taking the shot this time around. I have had the flu vaccine consistently over the last 10 years and other than the general soreness, haven't had any problems. However, last year, two weeks after the vaccine I ended up in ER - kidney infarction and several days later with bilateral pulmonary emboli and subsequently APS. In the past 11 months I have wondered if the trigger was the vaccine and if others have had similar experiences.

    Here in Canada, individuals can participate in a health study post vaccine which I did and my health condition post vaccine was documented however, I don't know the results. This week gone by I spoke briefly with one of the nurse recruiter for the study at the hospital where I work and discussed my APS diagnosis since the last rould of vaccine. The nurse was of the opinion that I may want to skip the vacccine but discuss this with my doctors.

    To my on-line colleagues who work in health facilities I can relate to the peer pressure to take the vaccine and the feelings of being ostracised by colleagues and those at the top because you have real concerns about taking the vaccine.



    p.s. I did try to post this earlier but for some reason I got booted off so my apologies if this appears twice with more or less in my discussion.

  • I think somehow they changed the vaccine. I do know they added the H1N1 to it and supposed to be 3 types total in it. Very possible could be from the jab as its been shown to increase antibodies for a short time.

    I think someone needs to do a study on this and follow a few APS patients- gosh I wish I could spearhead this. Would be interesting to have more of a picture.

  • Well, too late for me now Kristina. Got stuck with it at the GP clinic this morning! Early days yet so will post if any untoward reactions. Haven't had it before so not too sure what to expect.

  • this sounds like a great idea maybe we can put it to kate see if HSF are doing anything or they would know if any reaserch maybe going on i can ask and see what they say will let you know.


  • Hi Krystina:

    Hope this finds you well. Would you by be able to post the information related to the increase in antibodies? Some of the information I've seen speaks of a need to monitor INR which some studies show that post flu vaccines, there is an increase in the INR and prolonged PTT.



  • Peter,

    I will do a search this weekend and grab all the relevant articles. I presume you have access to journal articles if I give you the titles, citations, etc?

    I haven't received the jab yet, but Rheumatologist here says its okay, I am not convinced. Interestingly my ANA was positive 1:80 speckled but DS DNA negative. She says I have lupus- I doubt this......

    My Lyme disease also came back as a positive but thinking its either old or false positive...

  • Thank you kindly. I do have access to journal databases. I'm told it is okay too but like you, I would like to make an informed decision in collaboration with the docs.



  • i got a flu shot this morning at 10: 00 , this is also my day for weekly inr blood test ,i was 1.8 last week to low for me should be 3.0. the thing is i did inr blood test 30 min. after flu shoot.?? dont really remember what happened last year with this. going to my nurse to see if i had a had a reaction or was my inr done to long after. having brain cramps again i guess. gotta go will check back in 3 hours or so bfn jet

  • I had the flu jab on Saturday, the clinic recommended an INR test 3 days later to check if it causes any impact. I'll do a self test on Tuesday...

  • The flu jab caused no impact to my INR whatsoever and I had no side effects either. So will have it annually now in the future...

  • Hi

    Had my flu jab on Saturday - it gave me (and everyone else) a dead arm for a bit, felt a bit bruised but that's it! No actual bruising and no sickness or flu-type symptoms!

    Worth getting one


  • Oh wow- I had my jab abotu 10 hrs ago and my entire deltoid is killing me!! Very sore arm and feels like its 5 times heavier than it usually is!

  • yes this is the norm but very annoying but can be funny as my wife had it done and her arm went numb for a while sorry just made me laugh thinking of it again lol

  • Ok just to add my two pennies work i had the jab a few years a go and reacted really badly to it to the point i ended up in ER, I am not sure uf it is sothing to do with the body, life style age etc but i am not doing that again.


  • I know this post is a bit late in the time line but.

    I finally took the vaccine last year after being strong armed by my employer. THey showed me that it was preservative free. Within a week I had a painful red patches around my eyes that I have never had before. Within four weeks I was in a full blown flare and out of work for 43 days.

    I too work at a facility that will require masks if I do not take the vaccine. BUT this week got notified that there will be a 3 level CDC position on this as until the CDC declares an outbreak in my area I will be able to go with the mask.

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