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Living with Polyneuropathy CIDP, GBS, & CMT

Flu Shot after GBS


#1

Hi Everyone,

Thanks for accepting me into the group. I was diagnosed on January 12 , 2015. I had good intervention and responded well to the infusions of imunoglobin. I was almost totally paralyzed from the neck down but have gotten back my mobility. My feet are still numb but feel like they are gradually "thawing out". At this point it feels like there is always sand in my shoes, and I have muscle spasms in my feet at night. Other residual effects include loss of strength in my legs and hip flexors. While I have good stamina and have resumed many of my former activities, my reflexes are definitely slower.

I wonder if anyone has taken a flu shot after recovering from GBS without any problems. I would really like to keep on getting them but of course was advised against it so didn't get one for this season. I have yet to run across anyone else in person who has had GBS in my little city, so it is nice to be able to ask questions and read about other peoples experiences.


#2

I'm too afraid to get the flu shot. My case happened following a Tdap shot. Don't really want to get the flu but just can't voluntarily take that chance of a repeat by getting the flu shot.


#3

Thanks for your input. Do you attribute your case to the shot, or did you have anything else going on? In my case it was an upper respiratory viral illness. I hope you are getting good recovery. I likewise am gunshy about getting the shot.


#4

I attribute it to the Tdap because that's the only thing that I really had going on. No illness. I am doing so much better now but it's been about 17 months. I had a reflare of symptoms after a sinus infection back in February. Had another sinus infection a couple months ago with no symptoms. I am so thankful to be back on the recovery road! Can totally understand your concern for the flu shot.


#5

I skip the flu shot, personally. There's way too much variance in opinion on its safety for GBS folk to risk it. What's the potential cost: this all over again vs the flu? I would take the flu! And on top of it the flu shot isn't always that effective so it could be for nothing!


#6

Tarhealings experience is pretty convincing. Besides , you’re right the shot isn’t always effective. This is the first year I haven’t gotten it and I’m ok so far. I hope your recovery is coming along well also.


#7

I personally have never had a flu shot. After having GBS in 1983 was advised to never get one. Why take the chance to get GBS again?!? Although flu shots and treatment of GBS have changed since then...... I'm 62 years old and very healthy.


#8

no no and heck no. i never want to go threw what i have went threw with this crazy syndrome, ever again. if i can prevent it i will, anyway. that said glade you are on the road to recovery.


#9

Never, ever would I recommend anyone to get a flu shot. My first round of GBS was January 2014, traced back to my flu shot. 5 days of IGIV treatment, 5 months recovery.....only to have recurrence on May 13, 2015. 5 days of IGIV, has been determined (and still trying to get a treatment plan perfected) will be with me the rest of my life.


#10

Right before I received my diagnosis (a few weeks ago) the nurse at the specialist office asked if I would like a flu shot. I was so taken aback. I hadn't even met with the specialist yet to go over my diagnosis and wasn't sure if that would be a good idea. I'm so thankful I said no, considering less than 10 minutes later I was diagnosed by the specialist. I keep wondering if my GB was caused by my illness at the end of summer or the strong antibiotic shot I was given to combat my illness.


#11

I was told by my physician to never get a live culture shot...which are typically flu shots. Make sure all in your household wash their hands entering. Make sure they do not chew their nails...due to bacteria. My primary diagnosed me. My Neurologist said I was in stage 4 of MS. Went through 4 months of hell before he agreed with my primary.


#12

Does anybody find this strange that on the computer...they say "Once you've had it...you won't get it again".


#13

i find it crazy that one says you will not get it again yet other sites and a program call diagnose me said that you could reget g.b.s. i just myself beleive the chance is slim of getting it again. but no way am i taking that chance. they still do not know enough about this syndrome. have a great day, and stay well


#14

Hi
My doctor’s wife had gbs years ago. He told me once you had gbs don’t ever get flu shot. I got cortisone shots in each knee and I immediately got gbs. I had those shots three years before and didn’t have that kind of reaction. Just so you know there are attorneys that will take a gbs case due to flu shots. Congress has set aside money for damages.
Renee


#15

Thanks for sharing Renee. I had Cortisone shots years before...not sure what brought it on...I did have flu shots. Not really looking to sue anyone since I can't prove where it came from. But I do appreciate the information. Best wishes.


#16

I haven't looked it up lately...but when going through it...that is what they were saying. I don't believe all I read...although, my husband wanted to hang on every word. To be honest, don't believe of what most doctors tell me. It's hard to believe you can't get it full blown when you still feel symptoms. Would love to hear your story...just so I can make sure what I am still feeling are the effects. You start questioning everything at some point. I am feeling a lot of shakiness...tremors...if I over exert...which doesn't feel like I am overexerting...it gets soo bad that I can't even put mascara on. Just need to know if it is from GBS or something else....if anyone else has this issue...please chime in.


#17

I was wondering the same thing! I don't want to risk having to go through the struggle of GBS ever again, so in my opinion I stay away from what causes it. I was told by my PCP to get flu and pneumonia vaccine (GBS was brought on by the virus I had when I had pneumonia), NOPE! Not gonna put myself in harms way! I have heard of relapses and Id rather not risk a vaccination. If I get the flu, I will deal with it.... :)


#18

Was told by a doctor that I truly trust to not ever get a live culture injection. Hope that helps. Trained my husband and kid the importance of handwashing as soon as they walk into the house. My husband is in contact with many people during the day...kid in school. First thing they do when they walk in is wash their hands...I also disinfect a lot. Can't be too careful.


#19

I asked my neurologist this question, and (after looking at me funny, like he was surprised I even asked) he said that I shouldn't get a flu shot since I'm a healthy 30-something and it would be better to have my body fight off the flu rather than risk another bought with GBS.


#20

But can't an illness like the flu trigger GBS as well? I think the answer may be a catch 22 unfortunately :-(. Personally I'm not getting flu shots anymore though (though I'm not sure what I'll do if I return to working in a hospital where they are required).