My question about the flu shot

    • Anonymous
      October 15, 2007 at 11:24 am

      I work in a hospital and they give out the flu shot free of charge to all employees. I have always gotten the flu shot in the passed and when I asked my nuero if I could get one he said yes. I am too scared to do so.
      WHY would he say it’s ok ?


    • October 15, 2007 at 12:48 pm


      I guess the neuro would say it is ok because he/she believes it to be ok. Many of us get the shot annually and many of us don’t. I have had cidp for 14 years and have had the flu shot each year with no problem. Each of my neuros (4) have said I should get it. One bluntly said “flu will kill you but you already have CIDP which won’t kill you”. I found out the hard way a year ago what an infection will do to my cidp and I don’t want another one. I will get the flu shot again.

    • Anonymous
      October 15, 2007 at 1:17 pm

      NOT have a flu shot if you have CIDP is if you are receiving IVIG.
      IN the fine prints of the ‘prescribing information’ of whatever brand you are on, it clearly states that ‘immunizations should not occur either 6 months before or after any infusion. That can put some of us in an iffy spot, when on a non-regular infusion schedule.
      Honestly, I don’t think many prescribing neuros are ‘up-to-date’ on that fine print? This doesn’t mean that they are negligent, it’s just something WE have to be diligent and concerned about.
      I’d call the IG manufacturer and ask about your specific circumstances…just to be on the safest side possible.
      Hope this helps?

    • Anonymous
      October 15, 2007 at 11:41 pm

      When my neuro and I discussed the flu shot, he said it would be ok, but he then went on to sharing all the possible things that could go wrong. IN the end he left the decision to me and I chose not to and he respected my wishes. My internist did the same. I believe they think it is ok, but they also realise we run risks in doing so.

      Ultimately, only you can decide for yourself.


    • Anonymous
      October 17, 2007 at 12:11 am

      I was told never to get any vaccine of any kind since my GBS.

    • Anonymous
      October 17, 2007 at 11:01 am

      I have CIDP. My family doc gave me a pneumonia vaccine and I had a terrible relapse. When I next saw my neuro, she said that with CIDP, you’d have to weigh the risks on a pneumonia shot because it can cause problems. She also said never take a flu shot. And with GBS, no vaccines of any kind.

      My quandry is, my son is turning 12 and our doc wants to vaccinate him. I’m worried that if there is a genetic component of any kind to GBS/CIDP, the vaccines could harm him. He had all the childhood ones with no problem, but I’m still concerned. If anyone has any thoughts, I’d appreciate hearing them.


    • October 18, 2007 at 8:19 am

      I called my doctor’s office yesterday as I was getting confused. I’ve been getting the flu shot per their instructions every year and haven’t had a problem as yet. The one year I didn’t I got the flu and badly. I’m a little worried about being lucky so far and wonder if I’m pushing my luck. I’m told the virus they give you is dead so it should be okay. The thought of getting as ill as I did that one year I skipped it doesn’t impress me but am concerned about getting the shot. Kinda like playing Russian Roulette.

    • Anonymous
      October 18, 2007 at 12:49 pm

      Hello Stacey,
      When you come right down to it, the flu shot has to be an individual decision. As far as I’m concerned, I let my facts speak for themselves. I too worked in a hospital and the flu shop was almost like a command rather then a choice. I had my yearly flu shot in November 1997. I started becoming aware that something serious was wrong with me in March 1998. Not being diagnosed yet, I got the flu shot again in November 1998. About one week later I could no longer walk. I don’t know if any of us can prove that the flu shot causes GBS/CIDP, but I do believe that the flu shot in 11/98 triggered my CIDP enough to put me in a wheelchair. I myself would never get another flu shot, my decision, because the doctors can confuse us. My diagnosing neuro said “never get a flu shot”, yet my “treating” neuro (I went through many before I found him), said it’s better to get the flu shot and when I went to Phoenix symposium, all the doctors (very highly qualified doctors) on panel said it’s safe. My family doctor told me not to get it and a walk-in-clinic told me they wouldn’t give it to someone like me.

      Gather as much information from here and searches as you can, then decide.

    • Anonymous
      October 18, 2007 at 3:07 pm

      Stacey, I use to work in a hospital also. I was forced to get the vacc every year. I will never get another vacc for flu or pneumonia again, was mutually agreed upon by my pcp and myself. Thats one thing I can control and I’m willing to take my chances with the outcome. Its really a choice you would have to make for yourself, there is no right or wrong with it. Take Care.

    • Anonymous
      October 19, 2007 at 8:09 am

      Well, they have been pushing it real hard all week. They announce overhead, “if you wont do it for yourself, do it for the residents and your co-workers”…

      I mentioned to a few girls in my office about what “could” happen and one said, “We dont get odd rare diseases like YOU do”.

      THAT really p****d me off ! I didnt say anything. I cant deal with ignorant people very well.

      I have chosen NOT to get the shot. I am really up and down with my symptoms right now and I dont want to make things worse…that one slight chance…no thanks.


    • Anonymous
      October 19, 2007 at 3:47 pm

      That sounds familiar to what I use to hear from my coworkers. I know how you are feeling right now, don’t waste your energy on the ignoramises, you need all you have for your main man!;) For what its worth I think you made a wise choice.:)

    • Anonymous
      October 19, 2007 at 3:52 pm

      Hi Stacey, When I had my knowledgeable Neuro, before he left. He said Definitaly–dont get a flu shot. Dont know if it was from IVIG or just the CIDP>
      Where do you go for a Neuro. I am in an impossible situation, hooked up with another Neuro. who really does not know how to treat our cidp.I get most of my info from this forum, and the newsletter. The last publication, definitely, showed her plans for me were all wrong. I have to get somewhere to just get my meds straight and if I should get IVIG treatment regularly. I sent for some new AFO’ just trying them out. I said on one thread I was giving up, but I went back on my meds, but decreased from 2 Lyrica and 2 Cymbalta, to just one a day and feel alot better. I guess you can private message me with your Neuro’s name if you care to. Saying prayers for you Mom, I lost mine to cancer in 1979 and still miss her. Be brave, Regina

    • Anonymous
      October 19, 2007 at 6:26 pm

      I just recently registered on the site, so this is my first time posting anything.

      I had GBS while in college in 1971. My company offers the flu shot and I always took advantage of it. Last year was the first time that I saw a question asking ” did you ever have GBS?” That stopped me right in my tracks. I consulted with my doctor who said it would be ok. In the end, I decided NOT to take the shot & told co-workers what GBS was all about.

      On 10/15/06, I went for my annual physical and was told everything looked good. One week later, while in my office, I began to feel numbness under my fingernails. By the time I went home it progressed into the hands and feet. Of course I knew it was happening again. I spent from 10/26/07 to 1/11/07 in the hospital. The recovery period was a lot longer than the first time. I have some residual effects this time, but did not the first time around.

      Again, I’ve only recently found the site and through reading some of the posted “conversations”, I can see that there are others out there that understand what I have gone through.

    • Anonymous
      October 21, 2007 at 1:57 am

      Hi BD, Welcome to The Family. Ask all the questions you want or just vent when you need.