Flu vaccine – do yall get one?

    • October 14, 2012 at 4:48 am

      I hope everyone has been doing well!! I am almost a full year into IVIG now.. doing MUCH better than I was a year ago.. but sometimes in some ways worse too.. it’s all so strange! Overall though my life is amazingly improved… though I wouldn’t mind being even better.. i feel my ivig wear off around 10 days afterwards most times.. if i get sick with a cold/cough especially- that seemed to kick my diaphrams butt this past month making my shortness of breath return.. ugh!

      Anyhow, my question is do yall avoid all vaccines now? I work around sick people and everyone is getting their flu vaccine.. i imagine we shouldn’t have anything to stimulate our immune system, however I don’t really want the flu either.. it scares me to get a bad cough etc.. what have yalls dr’s said??

      Thanks in advance, and I hope all is well!

    • Anonymous
      October 15, 2012 at 1:35 pm

      My neurologist advised me to avoid flu shots, tetanus boosters, and vaccinations of all kinds — unless absolutely necessary. This is because of the slight, but real, possibility of provoking an immune reaction that might worsen my condition — perhaps significantly.

    • October 15, 2012 at 2:57 pm

      I get one every year.  My neurologist said get it.  Flu can kill you.  At the GBS/CIDP foundation symposium in 2010 an hour presentation on the flu shot said basically the same thing.

    • GH
      October 15, 2012 at 5:06 pm

      I received a flu shot a little over three weeks ago, and have had no side effects from it. I am cautious about receiving a live vaccine because I take an immune suppresant, but TIV influenza vaccine is a killed-virus drug.

      I recommend studying the Contraindications and Precautions from the Centers for Disease Control and Prevention (CDC):


      Precautions should be discussed with a physician.

    • October 16, 2012 at 1:45 am

      I have not got flu shots since getting cidp–i never got them before either.    I didnt think you were suppose to get them while on ivig??? Check with your doctor, they probably all have their own opinion on it.   Glad to hear from you, I was wondering how you were doing 🙂

    • GH
      October 16, 2012 at 2:00 am

      Here’s the Medline Plus information page on IvIg:


      There’s nothing in there about the flu vaccine.

    • October 16, 2012 at 2:17 am

      Bny–I wasn’t told that a flu shot would cause any harm, i believe it was because the ivig  has flu antibodies in it.

    • Anonymous
      October 16, 2012 at 11:41 am

      We all have to do what we think is best for us. Our physicians can give us their opinions, but in the end the decisions are up to us. It is our bodies, our health, and our lives at stake.

    • GH
      October 16, 2012 at 3:56 pm

      What I get from my physicians are not mere opinions but advice informed by medical science and lengthy training and experience.

    • October 16, 2012 at 5:55 pm

      I get the flu vaccine every year.  My local neurologist as well as my Mayo clinic  neurologist recommend.  I have been told the IVIG may interfere with the vaccine effectiveness ( making vaccine less effective) but still worth getting.   I have also been told that if your particular case of CIDP was thought to have induced by a vaccination to avoid in that case. Mine was not related to vaccination so therefore I receive every year.  I do get a little more tired and some mild increase in symptoms the day or two after vaccination, but have never had a relapse brought on by it ( I have 5 years of experience with this personally) .  It is not easy to predict how you will react but contracting the  flu would be very dangerous .  Sometimes they can split the dose if concerned but I am not sure if you would have decrease effectiveness.  Finally, you do get some passive immunity from IVIG .  I am so glad to hear you are improving- nerves can take a few years to heal so once you stop the damage , you may continue to improve.

    • October 17, 2012 at 3:21 pm

      We were told t hat if you are on ivig that getting any immunization is useless because of the ivig.  I think that in the latest IG living magazine there was an article about it.  More importantly, our neurologist has told us never to get vaccines unless an emergency…ie tetanus and some sort of situation that would necessitate a booster. Everyone has their own opinions and ideas, you just have to talk to your doc and decide what is best for you.

    • November 10, 2012 at 3:16 am

      Great to hear from all of you too!!!! Thanks so much for the advice!!

      I had my follow up appointment with my neuromuscular neuro last week and they recommended me get the flu vaccine.. they said people who had acute GBS resulting from a vaccine absolutely not.. but the slower onset CIDP that isn’t felt to be from a vaccine was ok.. and since I work around sick people and have two small kids who go to school, it was strongly recommended.

      Do any of yall feel short of breath with your CIDP?? I have from the get go, that’s why they admitted me 1 year ago. I was so thrilled.. when I went back to the neuros office last week, they rechecked my PFTs (pulmonary function tests), and they were much improved (from 72% to 87%)!!! 🙂  and I was still feeling quite short of breath last week- so I was thrilled to see concrete numbers of improvement! 🙂

      I went 4 weeks without IVIG this past month, which was a big mistake! I had the stomach flu and was so sick for almost two weeks, so couldn’t get it.. they were also going to start trying to extend me to 3 weeks .. though my symptoms started returning – swallowing difficulty, face drooping, hips and shoulders super weak, and my fingers went jello like.. also my foot is super numb (like I”m walking on a sand bag).. all from missing one round of IVIG!!!  Does this sound normal??  My poor veins ache from the IVIG>. they are so irritated.. I feel like they need the break!


      Hope everyone is doing well!!!

    • November 10, 2012 at 5:03 am

      I was advised to NEVER allow Emily to get a flu shot. Her CIDP symptoms started about a month before she received her only flu shot, back in 2005, &  within weeks of the flu shot she was in the hospital.  Her dr’s say she should not ever be vaccinated again for anything.

      For your veins…have you considered getting a port? Emily had one for YEARS & it was great. She is a really difficult stick (she has very deep veins) and the port is so easy to access.

      I’m sorry you were so sick. You might want to ask your dr about doing a loading dose or two to get you back on track. How long do you normally go in between infusions? If you notice a decline at 10 days then perhaps you should see about getting weekly treatments. Emily relapsed every 9 days for awhile & she was on weekly IVIG’s.  We were able to stretch them to every 10 days, every 2 weeks & so on. She’s now at every 5-6 weeks.



    • November 11, 2012 at 3:49 am

      Thanks so much Kelly – it’s great to hear from you!     I have been doing every 2 weeks, and seemed to do pretty great with that actually.. I still had exacerbations here and there, usually after illnesses.. but there were a few times I didn’t notice ANY decline before the next infusion…. I was curious about the loading dose as well, to kind of play catch up!   I may have to ask about that!


      I have thought about a port, but I get a little worried – thats in a deeper vein right?  I feel like my superficial veins are all so irritated, it worries me that “more important” veins could be irritated and I wasn;’t sure if that could cause more problems..

      I have been without the burning/numbness for a few months, at least it hastn’ been bad.. but since going one month it seems back with a vengence.. It’s like im walking on a sandbag, feels so more weird than it used to!


      I feel like my veins need a break so badly, but obviously with this trial of going longer (granted, i was SICK with that GI bug, and taking care of sick kids= stress).. I don’t know that I will get a flu shot again.. but I think I feared getting the flu since I feel like illness really sets me back, and especially respiratory illnessess..

      Kelly= that is great to hear she is getting it more infrequently!!! So exciting!!! 🙂

    • Anonymous
      November 11, 2012 at 8:16 pm

      I get a flu shot every year. The vaccine, being dead, is far less likely to activate my immune system than the flu virus itself, and I have kids still in school — my chances of avoiding exposure are slim. My neuro, rheum, derm, and primary care physicians all concur.

    • GH
      November 12, 2012 at 2:12 am

      Actuallu, a killed virus will activate the immune system as will a live virus, otherwise it would not work as a vaccine. But if a person’s immune system is weakened, as mine is due to a drug I take for that purpose, a killed virus vaccine will not overcome the immune system’s ability to deal with it.

    • November 12, 2012 at 8:53 pm

      Attended the 2012 Foundation symposium in Fort Worth.  Once again they had an hour long presentation on the flu shot. They presented statistics going back 40 years.  Basically they said if your GBS/CIDP onset was more than 6 weeks after a flu shot then get the shot.  There was nothing about IVIG being a reason not to get the shot and the presentation on IVIG covered it from top to bottom and inside out and nothing said about the flu shot.

      Was also interesting that they pointed out that most people who “have the flu” don’ t actually have the flu but have similar symptoms and the dr. treats them for flu as it is much cheaper than running the tests to determine if the person actually has the flu.

    • November 13, 2012 at 2:39 am

      that’s kind of what my neuro said as well, but of course I still questioned a little in my mind when did my symptoms actually start?? I defintely know when they really hit me.. but I might have had a hint of issues brewing for a while, that I was just writing off as “normal” wear and tear… I had a flu shot sometime in the year before the issues really came to a head though.. but it wasn’t obviously directly caused by it!!!

    • Anonymous
      November 14, 2012 at 5:29 pm

      I will never, ever, ever get another Flu shot as I am convinced that is what triggered my CIDP.  I will also share that the last time I got IVIG I was in there with a man who had CIDP.  He started to get better and went without IVIG for a whole year.  At that time is primary doctor told him to get the Shingles vaccine.  Within a day he couldn’t walk and had to start on IVIG again.   My thought it if you think a vaccination triggered your CIDP, don’t get one again.  If not, then go for it.

    • November 15, 2012 at 3:24 am

      wow – that is a scarey story jgl!!!!   I have had increased symptoms since the shot… the water droplet sensations and burning, etc   but I also had to skip an IVIG that same time, so not sure which is causing which .. I may skip it next year!!!