If you read this forum’s thread on the thing that people believe triggered their CIDP, you will note that a large number state that they had their first symptoms shortly after getting a flu shot. Flu shots have a documented cYorrelations GBS, a close cousin of CIDP. You will get mixed feedback from the docs on this, but they all will agree that anything that ramps up your immune system is not desirable. I want to get the shingles vaccine, but that is a live virus shot and no one recommends that.
This is a good point @secondchancer. I encourage you all to check out what TJ from our Moderator Support team wrote here regarding vaccines and CIDP:
He’s a pretty knowledgeable guy and we’re lucky to have him around!
CG
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I am a CIDP (initially diagnosed GBS) patient. All of my neurologists, GI, and others have told me NOT to get any more flu shots. I had 1 in 2009 and there will forever be a doubt in my mind. However I trust my docs totally, and if they say no, then no it is!
I’m confused. My neurologist told me it’s alright for me to get a flu shot because he feels my GBS wasn’t from the flu shot. However, my GP told me no more flu shots for me, ever. So I was told by my neurologist that the chances of me getting another attack from GBS is the same rarity as getting it in the first place. Well that wasn’t reassuring. He said the same chances of me getting GBS from a flu shot is the same as getting GBS from catching a cold or flu. FYI, my grandkids live us and are always coming down with something. So it’s pretty much “Damn if I do, Damn if I don’t”. So far I haven’t gotten a flu shot or any type of immunization since I came down with GBS in 2013.
Yeah, you have to be smart. Even if you have no reason to suspect flu shots as a cause of CIDP, the conventional wisdom is that it’s best to avoid shots that will stimulate the immune system. CIDP is related to what goes on in your bone marrow where the immune system is powered, so it makes sense.
Spencer,
There is not 100 percent agreement among docs, but I wb cautious. Can you get a referral to a Hematologist or other specialist in the immune system for a consult? It may help you make a decision.
Mike (secondchancer)
The answer i always have heard from doctors for GBS is to get your flu shot. At the same time their is always a lot of people (not doctors) that will say not to get the vaccine.
I was curious, is the answer about flu shots different for CIPD or other immune related diseases?
My personal belief, trust your specialist on a question like this. If you cant trust your neurologist to answer a question on vaccines, why are you even going to them?
Maybe the risk is greater if you had a flu shot but became sick with a cold or flu? Maybe that combination is what triggers the GBS? I had a flu shot about 6 months before coming down with GBS and had couple of bouts with the cold and sinusitis. Anybody else had combinations like this?
So many people on these forums can closely associate a flu shot with the onset of their auto-immune disease, especially GBS. But I don’t think formal studies have drawn that connection. Personally, if I was a young person for whom the flu does not typically pose serious risk, I would choose to avoid it.
MIKE
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When I was still working and getting the flu shot, we had to sign a consent form to get it. (I worked at our local hospital.) On the consent form was a question that stated have you ever had Guillain-Barre syndrome if so you are not allowed to get the flu shot. My current doctor (internal medicine doctor) says that I should never again get a flu shot and has put it in my records that I will never get one again. Also all vaccines are questionable per my Dr. especially the live ones. I should also state that my GBS was caused by the flu shot as I had symptoms within a week of getting the flu shot, so i will think twice before getting any vaccines.
Dolly,
Same here - not allowed to have vaccines. I worry about getting shingles, but that is one of those live virus shots.
Mike
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I just went for my annual check up and had the flu shot discussion with my “new” PCP. My prior PCP didn’t seem to know much about CIDP. My new PCP and I looked back and three years prior I had been given the flu shots. I had no idea there could be a connection of flu hot and CIDP until I joined this forum. So we decided since the 2017 flu shot only had a small tweak from the 2016 formula, it would be best to skip this year. Hopefully, more research will be done and a more definitive answer will come along. If you are not in a high risk job or situation, I would have a discussion with your PCP about avoiding having the flu shot.
Ross,
I have been told in no uncertain terms by my neurologist and other Physicians that i cannot have flu shots. I can’t have the shingles vaccine either. In general, the docs seem to want to avoid anything that ramps up the immune system.
Mike
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I am going along that path as well. Not opening the door to anything that may take a giant step backward.
Doctor said no flu shots for me in the future