Flu Vaccine and Why me?

With reference to the flu shot, and for that matter, other shots ……….. The debate goes on and on and on … There are tons of threads and posts here that explain why or why not. If you go the the following threads, or do a search on flu shot, you will be able to read what others on the forum think.
FYI. I was given a tetanus shot for my physical a couple of years ago, and had no problems …….. hold on, now that I think about it, isnt that when my problems started all over again??? :confused: Oh well, thats the first time I thought of that.

Here are some of the threads

[B]My News About The Symposium -[/B] on the Main Forum
[B]Flu shots, safe after GBS? -[/B] on GBS Adult
[B]National Vaccine Information Center – Flu Shot Study -[/B] GBS Adult
[B]2006 Flu Vaccine -[/B] Main Forum
[B]Meningitis Shot Warning -[/B] Main Forum
[B]should i have any vaccinations? -[/B] Main Forum

I think those should tide you over for a while 😉

I am 53 & have never had a flu shot in my life, & do not plan on getting one ever now. But in answer to your question how bad can it get. CIDP can get very bad unless treated with a regular maintenance program, like IVIG. I noticed in one of your other posts that you have had IVIG & are approved for more. But how long has it been between? Most who have the relapsing/remitting CIDP do well on regular IVIG infusions, like once a month or even less.

You ask how bad it can get? CIDP can be a very disabling condition for some. I was essentially a quad for 3 years after a rather sudden attack in March of 2002. It was so fast, I was dx with GBS for the first 3 months. I had no use of my hands, couldn’t walk at all, couldn’t lift my arms up, etc. & remained this way for a very long time. I am not trying to scare you, just letting you know it can get very bad, especially if one is not given regular treatments. I have just learned to live with a lot of pain, but I do think that you are getting the correct pain meds. Sometimes, our old norm becomes a new norm. I hope for you that it will just be a case of getting IVIG infusions more often…

[QUOTE=Pam H]I am 53 & have never had a flu shot in my life, & do not plan on getting one ever now. But in answer to your question how bad can it get. CIDP can get very bad unless treated with a regular maintenance program, like IVIG. I noticed in one of your other posts that you have had IVIG & are approved for more. But how long has it been between? Most who have the relapsing/remitting CIDP do well on regular IVIG infusions, like once a month or even less.

You ask how bad it can get? CIDP can be a very disabling condition for some. I was essentially a quad for 3 years after a rather sudden attack in March of 2002. It was so fast, I was dx with GBS for the first 3 months. I had no use of my hands, couldn’t walk at all, couldn’t lift my arms up, etc. & remained this way for a very long time. I am not trying to scare you, just letting you know it can get very bad, especially if one is not given regular treatments. I have just learned to live with a lot of pain, but I do think that you are getting the correct pain meds. Sometimes, our old norm becomes a new norm. I hope for you that it will just be a case of getting IVIG infusions more often…[/QUOTE]

Hi Pam
my question may not be about this thread but reading your response to Over the hill about the flu shot realised your CIDP looks very much the same as my husband’s . I think everything started last November but it might be a little longer , he’s had test and test mostly like you had , everything in normal range but the elevated protein in the spinal fluid. He’s tried so many treatments so far but no improvement he’s still deteriorating but not so quick as it started( 3 months he was in a wheelchair- now the same and can barely use his hands) could you give me an idea of other treatment that worked for you? he tried IVIg, plasma exchange, cyclosporine and now he’s on 60mg prednisolone, and 100mg of azathioprine which I think is going to go up to 150mg in December.

oth,

I would push to get on a schedule for your IVIG infusions, waiting until it gets bad or you can’t walk isn’t a very good treatment plan in my opinion. At that point the damage to your nerves and myelin is starting again potentially.

There is a cost and availability issue but you are a priority patient with a Chronic condition, I get mine every 4 weeks or less, and it’s every month regardless of my condition or symptoms. This helps me lead a fairly normal life, I am sure this is what you want also. Being retired you both deserve to be able to travel and enjoy yourselves.

Jerimy

I have had really good results with IVig (5 base doses, 2 weekly, and now monthly) After 8 weeks I am walking and feeling 98% (I still have pain in the bottom of my feet) better. I also have gone from 80mg of prednisone to alternating 60/40. A month ago I never thought I’d get back to this point! I have relapsing CIDP and after 3 accute attacks since April I finally have a course of action and making forward progress. There is hope! As for flu shots I’ve also been told to avoid vaccines – when you have a disease like CIDP that is caused by imune issues a vaccine can send your system haywire.

Good luck and hang in there – you will get better!

Cheryl in Colorado