Flu Vaccine for CIDP Patients
AnonymousOctober 31, 2008 at 9:01 am
My 4 year daughter saw her Neuro on Tuesday and receive a good report. However, the Dr. said to my husband and I that our entire family should receive a flu vaccine including, Lauren. I have mixed feelings. We said are you sure Lauren should have one and her reply, yes, the IVIGs are helping her but will not keep her from getting ill this winter. Has anyone who had GBS or CIDP gotten a flu vaccine since diagnosis?
AnonymousOctober 31, 2008 at 2:50 pm
Ask the dr if he/she took the flu vaccine-mine won’t! Its not advised and it even says that in the brochure that comes with the vaccine. Ivig is a boost in the immune system, that is not a good excuse to risk the well being of any one with cidp if you ask me. I had my family get the vacc when I was first into gbs/cidp, but now no one in my immediate family gets vacc. Its ultimately up to you, as her mother and health advocate. Take care, and Welcome to The Family.
October 31, 2008 at 5:11 pm
Nice to hear from you again, glad the report is good!! About the shot, this is your child and your choice, so please do not be influenced by any advice you get from here. Make your decision based on your feelings and needs. You did ask, so…. my feeling is, NO WAY!!!!!! It even says in the questionare that our local grocery/pharmacy has you sign before you pay for the shot that if you had gbs or cidp, do not get the shot. Furthermore, try to remember if Lauren has had any colds since ivig, I bet not. Kevin’s school had some weird virus that the cdc could not even name, they made the school clean everything, tons of kids were sick with fever for days. Kevin only had tiredness and a little aching in his joints. Since ivig, 2 years now, this is the first time we saw any sign of seasonal illness which was nothing compared to all of the sick kids at school. Not to mention, the likeleyhood that the vaccine has all of the virus’s for the season are scetchy at best. If you were immune suppressed, it could be a consideration. think about it, it used to be only the sick or senior citizens were candidates for it, now they are even pushing babies, as if they don ‘t get enough immunizations. Ask your doc to see the info, or to read it her self. Our neuro says NO!!! Tetanus is about the only thing I would consider if Kevin fell on a rusty plow on a farm in a pile of pig poo!! Wow! guess I got carried away, so do you think you know how I really feel? LOL Have a great Halloween and Happy Trick or Treating!! This time last year, Kevie could not even walk to the end of our driveway and had his port put in the day after Halloween. We have come a long way!
Dawn Kevies mom
AnonymousOctober 31, 2008 at 5:38 pm
I got GBS in 06 from my flu shot. My Neurologist said NEVER NEVER again take that shot or a neumonia shot. Also I was told that the flu shot for this years flu will not protect you from any new flu as the shot is mainley for last years flu.I know for myself if my Neuro said to get a flu shot I would fire her and find a neuro that knows how dangerous they are. My feelings are a neuro suggesting to give a CIDP pt a flu shot should not be allowed to practice period (Steve)
AnonymousNovember 3, 2008 at 8:59 pm
On every visit, my Neuro reminds me that Flu shot are absolutely off limits. He told me about one of his patients whose only GBS episode was 10 years ago and then the guy got a Flu shot last year and was back in the hospital for GBS. I wouldn’t take the gamble on a possible reoccurrance.
AnonymousNovember 3, 2008 at 10:49 pm
If your daughter is currently receiving IVIG then she cannot get ANY immunization within 2-3 months of the infusion. The IVIG essentially voids out the vaccine.
It is my understanding that any person with CIDP or anyone who has GBS, at any point in their lives, absolutely should not receive the flu vaccine. I have been told there is an information sheet given out at the time the vaccine is giving stating that GBS’ers should not get it.
I would be extremely wary of the advice given to you by your dr.
Hope this helps.
AnonymousNovember 9, 2008 at 11:54 am
My first time on this forum. I was diagnosed one year ago with cidp, and of course would like to know what may have brought this about in my body. One theory, the flu vaccine, but my docters say no, not proven. I did take the vaccine again this year. I have taken it for probably the past 20 years, (I am 64), and have always felt that it has been beneficial for me. I really feel that the cidp was a long time coming for me. My legs and feet (especially the feet), had hurt so bad for at least a year before the neuropahy set in. My condition just gradually got worse, eventually not being able to walk without holding onto something. Now, for the past year, taking the ivig treatments every six weeks, I feel great most the time. I also take lyrica, until recently, 300 mg. per day. I have cut it down to 225 mg. per day now. Pardon me for the long comment. I haven’t talked to anyone since my diagnosis, who knows what cidp is, except my docter, and he dosen’t talk much.
AnonymousNovember 9, 2008 at 5:46 pm
I was diagnosed one year ago, with cidp, a few months after taking the flu vaccine and a tetanus shot. My docter told me to take the flu vaccine this year and I did. Now, after reading all the comments, I wish I had not. My docter is at Vanderbilt Hospital and I have put my trust in him. I wish I had found this forum sooner.
November 9, 2008 at 6:34 pm
I personally do not think the flu shot is a good idea. But it is your decision, not even your docs. I have just returned from the symposium and half of the panel of docs (roughly) seemed to be hesitant and the others said yes. One said if you think you got gbs from the flu shot or any vaccine, you would be stupid to take it again. That is a quote. Others said that if you are in a high risk category you should get it. One doc sited 1 in 100 die from the flu and 2.8 /10000 get gbs (obviously not all from flu shot) I guess if you have cidp and are on immunosuppressants and exposed to germs alot it might be a consideration. noteworthy, a woman in the audience asked the docs how many themselves had the shot about half did, half did not. Some that did said they did because they were required to by their hospital. Good luck in your choice next year. If it has been a month or so ago and you do not feel any worse, I would say you can relax. Are you currently getting treatment? Because if you are getting ivig, the shot would not even work.
Dawn Kevies mom
AnonymousNovember 9, 2008 at 7:25 pm
I won’t be getting it either. Don’t even want to try it! I read online that taking Vitamin D in the winter months actually gaurds against getting the flu. So I am pumping myself with vitamins. Taking One A Day Womens Multi Vitamin along with ones that I can no longer absorb in my stomach by injections. But won’t be getting a flu shot this year and probably from now on!
AnonymousNovember 9, 2008 at 8:43 pm
As I have said I got GBS from a flu shot and my neuroligst has no doubt where I got it from.We worry about the flu. I have not seen anyone mention the best protection from infections. WASHING OUR HANDS. when you go grocery shopping think how many germs you touch when you get your shopping cart. how many have touched the tomatoes you buy. think of all the food people touch before you arrive and buy it. I worked in one of the top hospitals in the country for 20 years and all we heard WASH YOUR HANDS —WASH YOUR HANDS. My hands were so clean.Go to a public bathroom. we wash out hands then touch the door handle that the last person didnt wash and their germs are all over it.To get most airbourn infections they would have to almost cough or sneeze in your face.Did you realize that one of the most infected place we go is our doctors office. The waiting room. I have never seen anyone wipeing down chairs or furniture or magazines. and well people have little reason to see a doctor.are the exam rooms cleaned after each pt. ???? We not they have to make sure we stay well. and the flu shot is only good for last yrs flu. and as Dawn mention if you are on IVIG the flu shot is no good. It is easy for a doctor to say take a flu shot but who suffers. WE DO. Just some food for thought (Steve)P.S-I have learned to question a doctor and find out just how much does he or she knows. I respect my GP but I NOT him makes the final decision in my treatment. It is easy to tell a person to take a flu shot. as long as they do not have to suffer with side effects>
AnonymousNovember 9, 2008 at 8:48 pm
One doc sited 1 in 100 die from the flu[/QUOTE]
This is directed to the number and not towards anyone reporting the info…
Sometimes I worry that stats are artificially inflated to scare us into getting vaccinated. I feel that way about both the flu and also guardasil.
The CDC guestimates via computer models that 36000 die annually from flu and complications and that somewhere between 35-50 million people come down with the flu annually. So if my math is right, isn’t that more like 1 in 1000? Also note that the CDC uses a computer model guestimation and not actual real numbers. The validity of the numbers is in question by some scientists. The CDC also has no real numbers of actual number of deaths and no real numbers of actual numbers of flu cases as cases are not always reported.
I am also doing the vitamin D this year and I am having my daughter do the same vs getting vaccinated. Normally by now she will have had 3 colds, so far she has had only one (and this was before I started the supplements). We’ll see how this goes I guess, but I’d rather try that than give her a shot.
AnonymousNovember 9, 2008 at 9:39 pm
Now that I have taken the flu vaccine, (Oct. 1), how long before I will know if damage has been done? Also, I usually take two ivig treatments in two consecutive days, usually takes 4 hours each day. My nurolagist had me try just one day, one treatment this last time. He thinks too many ivig’s, one may become immune to them. What do you think?
AnonymousNovember 9, 2008 at 11:33 pm
[QUOTE=jenderner]Has anyone who had GBS or CIDP gotten a flu vaccine since diagnosis?
Please don’t take this as a recommendation or even a suggestion to have your daughter vaccinated. I am a 74 year old male and am merely relating my experience. I developed GBS in Sep 2007 before I had taken an annual flu shot. I was still hospitalized two months later at the time flu shots were being administered. I discussed it with a couple of the physicians who felt the risk was greater to not take the shot and possibly contract the flu. I took the shot and had no affects. This was at the time when I was prostrated with GBS. This year I discussed the advisability of taking the vaccination with both my Primary Care Physician and the Neurologist who still follows the GBS. Both concurred with my taking it. I had the shot 10 days ago and so far no problem. I chose to take the shot both times due to what I felt the risks to be for a person of my age.
AnonymousNovember 10, 2008 at 10:09 am
I recall One Doctor stating something (Please correct me if I state this wrong) that the chances of developing symptoms of GBS/CIDP from the actual FLU or ANYTHING ELSE that you are immunizing against are much, much higher than the vaccine itself.
His comments reflected that if you contracted GBS/CIDP from an immunization than you should wait at least a year post recovery. That nerve damage is not 1+1=2….more like 1+1=3. Meaning if you further damage your nerve endings before they are healed, than the further damage is worse.
He further went on to state something about there has been no statistical evidence of an outbreak of GBS/CIDP other than the 1970’s swine flu vaccine.
I’ll encourage all others to correct me on this, as it is something that I have wrassled with for a while.
This same doctor also stated that some of his own patients told him to, “Blow it out his ear” when he told them about the vaccine…….:eek:
P.S. I talked to another presenter, after the Ask the Experts forum and he had GBS before, he stated that he would be getting the flu vaccine as the protection from the vaccine outweighed the harmful effects of the flu.
Take care and be safe. It was great to see everybody. Sorry, I couldn’t meet more.
Edited to remove the names of doctors – 10:15 A.M.
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