For me having the flu has got to be much worse than what damage an inoculation does.
I can't say for sure that my CIDP is linked to the flu shot I got in 2008, but I haven't had one since. Conventional wisdom says I shouldn't worry about it (as in, I should get the shot) but I haven't managed to get over that hump of worry that it will make things worse.
hi bigmike,
Depends who you talk to.My docs. say go ahead.I talk with the nurses who tell me the evidence is mixed.
I have come to my conclusion that the IVIG protects against a lot of nasties anyway so it's not really worth it.
I decided to give it miss but,hey,do your own thing,man.
Take care.
Peter.
I still get the flu shot annually as I have COPD on top of everything else, and need to minimize the chance of getting illness that is going to make my respiratory system more compromised.
I choose not to get the flu shot - I don't have any other underlying illnesses and its easier for me to avoid sick people. I figure, why take a chance?
For most people I think flu shots are great, and in general I am very pro-vaccination. However, CIDP is closely related to the Gullaine-Barre virus and this is a known complication / side effect of the flu shot. So I skip flu shots. Although it may be worth noting that I work from home and am not going into a flu-ridden office every day and my immediate family always gets their shots so I am a bit more insulated. Just my .02.
My doctor said NO more Flu shots !
I have never bothered with flu shots - don't like needles! (and today is IVIG day.....).
However my reasoning is that I believe those shots are reasonably specific so there are lots of flu strains out there and the one that might get me is not in the shots.
There is the theory that IVIG contains all those antibodies already - so why hit up some more with a flu shot? In over two years on IVIG I have only had one head cold.
So your choice - probably will not matter either way so long as you feel OK with it.
My neurologist says no live vaccine immunizations. I can get the pneumonia shot because that is not a live vaccine...
I got the flu shot in 2010 (H1N1 to be exact) and 10 days later I started with symptoms that were later diagnosed as CIDP. It has been pretty much proven that the shot I received in November 2010 was the cause of my CIDP. There was no other explanation for my onset 10 days after the vaccine. I had a text book case. Perfectly healthy before the shot. I will never get any more vaccines for anything as will my 11 year old daughter. I don't trust the vaccines anymore. We will take our chances.
2010 is when I was diagnosed, but I think the H1N1 was after my diagnosis. I was already showing all the symptoms prior to that, and it was early 2010 that the last test was run.
I also can not tolerate IVIG, as it caused massive clots through out my body. Next week I will be at the Mayo Clinic to see what they have to say.
I have stopped getting flu shots. I'd rather err to the conservative than do anything that involves my immune system. I've been very blessed and have not had the flu for decades. (Now that I've said that, I hope I haven't jinxed myself!)
My CIDP began to show up a few days after getting a flu shot (conventional, not H1N1). There is a fairly extensive history of flu shots causing Guillian-Barre and CIDP, with quite a number of cases in 1976, I believe. My doctor is convinced the shot was the cause of mine. So, he recommends against getting another flu shot, and I have not had one.
My understanding is that if they cannot connect the CIDP to a flu shot, most doctors think the flu shot is less of a risk than the chance of getting the flu, so they will recommend getting it. In my case, it appears to be related, so no flu shot for me.
I have an added complication, which is that I am on an immune suppressant (Imuran). For anyone on an immune suppressant they allow "killed" vaccines (like pneumonia), but not "live" vaccines (like shingles). If you are on an immune suppressant, be sure to let your family doctor know before he gives any vaccine.
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My CIDP first showed signs 5 months after my first ever flu shot. I had the next 3 years shots as I didn’t know there could be a connection. Now that I do know, I don’t intend to have any more shots.
I take as much care as I can to keep my distance to people with colds etc as I am on azathioprine and have a low immune system. I’m lucky that I don’t have to use public transport and don’t have a lot of contact with other people except the times I venture to the supermarket.
My doctor said no more flu shots
My symptoms began 2 weeks to the day I had my flu shot. It's the only thing that we can attribute my condition to, my doctor believes it as well. He doesn't want me putting any shot into me at all as it will mess around with the work the IVIG is doing. I would NOT RISK IT!!!!
My docs say no. Even if they said to go ahead, I still wouldn’t.
Data on reassurance for GBS.(link below) following subsequent flu shots. You do the extrapolation and it may answer some questions about this topic, which is difficult to find a definitive prognosis regarding the onset of CIDP.
Personally, I think the onset of CIDP is brought about by a confluence of events that may include a flue shot or surgery or even emotional trauma or ?, all within a specific time frame, which then instates a misdirected cell chemistry; genetic change to B and T cell. But, who really knows since the immune system is as complex as our universe (which we now know sits inside a mega-universe, that exists inside an even bigger universe of dark matter and energy). Hundreds, perhaps thousands of chemical reactions are activated when a flu shot is introduced to the body and one specific reaction is hard to prove for certain regarding CIDP. There are many unproven antidotes of this subject. Flu is also a killer of many immune compromised peope.
Risk. HSCT, antigen-specific immuotheraphy... they may do wonders for CIDP, but I also read and have been told that they present great risk, as a flu shot might.
http://cid.oxfordjournals.org/content/early/2012/01/17/cid.cir960.full
Has anyone explored legal avenue after having a flu shot leading to CIDP? Just wondering what your outcome was if you did pursue legal action.
Wouldn't work in this state due to tort reform, as there is not enough money in it for the lawyers.