Everything I have read and heard is that CIDP is the chronic form of Guillian Barre Syndrome and people who have had GBS shoud never get the flu vaccine.
I have worked for a hospital for 5 years now and it is mandatory that ALL employees get flu vaccine. I had my first flu vaccine in 2008 and started having weakness and tingling in my legs and feet. I just blew it off never connecting my symptoms to the vaccine.
Every year I have had a flu shot and last fall is when I had my last flu shot and my symptoms came on strong within a few weeks where I was falling and dropping things...I thought maybe I was having a mini strokes or Multiple Sclerosis (my sister and her daughter both have MS) and so I went to the neurologist and was diagnosed with CIDP. I also had a few lesions on my brain MRI as well (so maybe I have both MS and CIDP)?
Anyhow, I guess my point is that I overlooked the side effects of the flu vaccine and now that I am on so many immune suppressant meds, my neurologist does not recommend I get the flu or any vaccines. So I have to get an exemption from my employer so that I don't get fired for not gettting the flu shot! It's all quite frustrating. If only I had realized sooner that my side effects from the first flu shots were the beginning of my CIDP, I would have acted on it sooner and would probably be in full remission by now.
Everything I have read and heard is that CIDP is the chronic form of Guillian Barre Syndrome and people who have had GBS shoud never get the flu vaccine.
I have worked for a hospital for 5 years now and it is mandatory that ALL employees get flu vaccine. I had my first flu vaccine in 2008 and started having weakness and tingling in my legs and feet. I just blew it off never connecting my symptoms to the vaccine.
Every year I have had a flu shot and last fall is when I had my last flu shot and my symptoms came on strong within a few weeks where I was falling and dropping things...I thought maybe I was having a mini strokes or Multiple Sclerosis (my sister and her daughter both have MS) and so I went to the neurologist and was diagnosed with CIDP. I also had a few lesions on my brain MRI as well (so maybe I have both MS and CIDP)?
Anyhow, I guess my point is that I overlooked the side effects of the flu vaccine and now that I am on so many immune suppressant meds, my neurologist does not recommend I get the flu or any vaccines. So I have to get an exemption from my employer so that I don't get fired for not gettting the flu shot! It's all quite frustrating. If only I had realized sooner that my side effects from the first flu shots were the beginning of my CIDP, I would have acted on it sooner and would probably be in full remission by now.
Hi Lisa, You sign your name that you are in Michigan...I am too... Where are you at? I am in Waterford. You are the second person with CIPD in our state that I have heard of...
Thank you for being here and writing in too, I am trying to learn as much as I can...
Here is to hoping for better days ahead for us ALL!!!!!
Pauline
Lisa Jakee Hilton said:
Hi ser2953!
Everything I have read and heard is that CIDP is the chronic form of Guillian Barre Syndrome and people who have had GBS shoud never get the flu vaccine.
I have worked for a hospital for 5 years now and it is mandatory that ALL employees get flu vaccine. I had my first flu vaccine in 2008 and started having weakness and tingling in my legs and feet. I just blew it off never connecting my symptoms to the vaccine.
Every year I have had a flu shot and last fall is when I had my last flu shot and my symptoms came on strong within a few weeks where I was falling and dropping things...I thought maybe I was having a mini strokes or Multiple Sclerosis (my sister and her daughter both have MS) and so I went to the neurologist and was diagnosed with CIDP. I also had a few lesions on my brain MRI as well (so maybe I have both MS and CIDP)?
Anyhow, I guess my point is that I overlooked the side effects of the flu vaccine and now that I am on so many immune suppressant meds, my neurologist does not recommend I get the flu or any vaccines. So I have to get an exemption from my employer so that I don't get fired for not gettting the flu shot! It's all quite frustrating. If only I had realized sooner that my side effects from the first flu shots were the beginning of my CIDP, I would have acted on it sooner and would probably be in full remission by now.
I'm new to this site and was just recently diagnosed with CIDP. And wouldn't you know it.....I just got my flu vaccine yesterday! Pauline and Victoria, did you have any problems after your vaccines? I have never heard of CIDP before and there is so much to learn. Pauline I agree with what you said about not depending on the docs to know everything. We, or I need to learn as much as I can about this disease and become active on this site and others like it. It's all just a little overwhelming at the moment though!
There are a lot of unknowns about this disease, I imagine we are all learning something new every day. I have found this site to be extremely helpful and supportive. Have you started a treatment plan yet? Welcome and remember you are not alone.
lfreckleton said:
I'm new to this site and was just recently diagnosed with CIDP. And wouldn't you know it.....I just got my flu vaccine yesterday! Pauline and Victoria, did you have any problems after your vaccines? I have never heard of CIDP before and there is so much to learn. Pauline I agree with what you said about not depending on the docs to know everything. We, or I need to learn as much as I can about this disease and become active on this site and others like it. It's all just a little overwhelming at the moment though!
Hi. Ive only recently been diagnosed with cipd. Dr recommended flu vaccine- which ive never had problems with before. Walking and pain started getting worse. Then i learn we shouldnt have the vaccine! I have to say docs no sweet f.a. about anything specific and from reading on this forum the general concensus seems to be DONT have it! Started on steroids today. Have these benefited anyond much?
I'm scheduled to start my IVIG tx on the 24th. I'm anxious about the side effects. I've heard it can effect your blood pressure and I already have high blood pressure which I take meds for. I also have a pacemaker/defibrillator and I've read that it can effect your heart rhythm as well. I guess I just need to wait and see how I do.
nancy said:
There are a lot of unknowns about this disease, I imagine we are all learning something new every day. I have found this site to be extremely helpful and supportive. Have you started a treatment plan yet? Welcome and remember you are not alone.
lfreckleton said:
I'm new to this site and was just recently diagnosed with CIDP. And wouldn't you know it.....I just got my flu vaccine yesterday! Pauline and Victoria, did you have any problems after your vaccines? I have never heard of CIDP before and there is so much to learn. Pauline I agree with what you said about not depending on the docs to know everything. We, or I need to learn as much as I can about this disease and become active on this site and others like it. It's all just a little overwhelming at the moment though!
Have you discussed your high blood pressure and pacemaker/defibirillator with your provider who ordered the IVIG? I have borderline low blood pressure and I know my nurses always monitor my blood pressure throughout my treatment. My blood pressure does not seem to rise during the treatment but that is just my experience.
lfreckleton said:
I'm scheduled to start my IVIG tx on the 24th. I'm anxious about the side effects. I've heard it can effect your blood pressure and I already have high blood pressure which I take meds for. I also have a pacemaker/defibrillator and I've read that it can effect your heart rhythm as well. I guess I just need to wait and see how I do.
nancy said:
There are a lot of unknowns about this disease, I imagine we are all learning something new every day. I have found this site to be extremely helpful and supportive. Have you started a treatment plan yet? Welcome and remember you are not alone.
lfreckleton said:
I'm new to this site and was just recently diagnosed with CIDP. And wouldn't you know it.....I just got my flu vaccine yesterday! Pauline and Victoria, did you have any problems after your vaccines? I have never heard of CIDP before and there is so much to learn. Pauline I agree with what you said about not depending on the docs to know everything. We, or I need to learn as much as I can about this disease and become active on this site and others like it. It's all just a little overwhelming at the moment though!
I'm told that the nurse will monitor my vitals every 15 minutes so they'll know pretty quickly if anything is of concern. I'll let everyone know how I do.
nancy said:
Have you discussed your high blood pressure and pacemaker/defibirillator with your provider who ordered the IVIG? I have borderline low blood pressure and I know my nurses always monitor my blood pressure throughout my treatment. My blood pressure does not seem to rise during the treatment but that is just my experience.
lfreckleton said:
I'm scheduled to start my IVIG tx on the 24th. I'm anxious about the side effects. I've heard it can effect your blood pressure and I already have high blood pressure which I take meds for. I also have a pacemaker/defibrillator and I've read that it can effect your heart rhythm as well. I guess I just need to wait and see how I do.
nancy said:
There are a lot of unknowns about this disease, I imagine we are all learning something new every day. I have found this site to be extremely helpful and supportive. Have you started a treatment plan yet? Welcome and remember you are not alone.
lfreckleton said:
I'm new to this site and was just recently diagnosed with CIDP. And wouldn't you know it.....I just got my flu vaccine yesterday! Pauline and Victoria, did you have any problems after your vaccines? I have never heard of CIDP before and there is so much to learn. Pauline I agree with what you said about not depending on the docs to know everything. We, or I need to learn as much as I can about this disease and become active on this site and others like it. It's all just a little overwhelming at the moment though!
The first time I had IVIG, I was in the hospital, and the nurses were instructed to check me every 15 minutes. I had to do a breathing test every time, which was a real nuisance, but my case was so severe they were afraid it would attack the autonomous nervous system, and I would lose the ability to breathe. (They didn't tell me this till later, I guess so as not to alarm me.) And they took the infusion very slowly, so it lasted 5 hours.
I never had a bit of a problem. It got to be a bit of a joke with them. After a while, one nurse said to me, "You know, you're the healthiest looking sick guy I have ever seen!" Except that I couldn't walk unaided...
After three days, I could walk almost normally, and even climb a few steps.
The first time I had IVIG, I was in the hospital, and the nurses were instructed to check me every 15 minutes. I had to do a breathing test every time, which was a real nuisance, but my case was so severe they were afraid it would attack the autonomous nervous system, and I would lose the ability to breathe. (They didn't tell me this till later, I guess so as not to alarm me.) And they took the infusion very slowly, so it lasted 5 hours.
I never had a bit of a problem. It got to be a bit of a joke with them. After a while, one nurse said to me, "You know, you're the healthiest looking sick guy I have ever seen!" Except that I couldn't walk unaided...
After three days, I could walk almost normally, and even climb a few steps.
I got a shingles vaccination about five years ago because I continued to get shingles. After the vaccine, I still got shingles. If it is a live vaccine stay away from the vaccine with CIPD. Every time I get shingles now, my CIPD acts up. I'd stay away from the shingles vaccine since I had nothing to fight back with the live vaccination I was given. Jan D
My friend who was totally paralyzed from GBS for two years (except for her eyelids), had a flu shot a week before the symptoms started. There may have been no correlation. I wouldn't risk going through what she went through in case it was the flu shot.
Kelly said:
I have never had a flu shot but I did have the flu twice the year I became CIDP symptomatic so honestly it's so hard to say.
My doctor's rule is that I can have vaccinations with "killed vaccines" (the agent being protected against is actually dead in the vaccine), but not "live vaccines" (the agent is weakened, but still living). So, he allowed me to get a pneumonia vaccine, but not a shingles vaccine. No problems with the pneumonia vaccine.
JanD said:
I got a shingles vaccination about five years ago because I continued to get shingles. After the vaccine, I still got shingles. If it is a live vaccine stay away from the vaccine with CIPD. Every time I get shingles now, my CIPD acts up. I'd stay away from the shingles vaccine since I had nothing to fight back with the live vaccination I was given. Jan D
My understanding is that the chemical structure of the flu virus is similar to the chemical structure of myelin. So, the body ramps up to attack the flu virus, gets a little confused, and starts to attack the myelin instead. And it doesn't matter if the flu virus comes from a vaccine, or from the actual flu, either way it is the same virus. There seem to be a number of cases of people who come down with CIDP after having had the flu. So, there is a good chance you contracted the CIDP from the times you had the flu.
Having said that: I would be very careful about ever getting a flu shot. Since you may have some sort of sensitivity to the flu virus, it could trigger a bad reaction.
I got my CIDP a few weeks after a flu shot, as have two other people I have talked to who had the same experience. So, my doctor has told me that I should never get another flu shot.
Good luck!
Bill
Kelly said:
I have never had a flu shot but I did have the flu twice the year I became CIDP symptomatic so honestly it's so hard to say.
I got CIDP from the H1N1 flu vaccine in 2010. I was perfectly healthy and had the vaccine. Then 10 days after the vaccine my foot started to go numb, kind of like it was falling asleep. Then it traveled up to my ankle and started in the other foot. I started to trip when walking for no apparent reason. I knew that something was wrong so I went to a neurologist and after weeks of test I was diagnosed with CIDP. My neurologist said that the H1N1 was probably the trigger in my case since I did not have any other underlying health issues at the time and the timing of the symptoms coming on within 10 days of the vaccine. I was able to obtain legal council and was successful in proving my case and was awarded compensation. It took three years for the legal team to pull all my medical records and win the case. The only reason I did take legal action is so that I have some money to cover the expensive IVIG infusions that I would not be receiving if it was not for the darn flu vaccine. Of course the courts award you very low, not a large sum of money. Unless you want to actually go to trial (which I did not, we settled out of trial). Going to trial would have been risky and the settlement I was offered would have been pulled. Trial could have lasted many more years and I was told that the specialist that they call are very hard on you and scrutinize everything in your past trying to prove you wrong. I was not willing to go that route. Anyway, I have gotten off subject. I just wanted to say that yes, CIDP and GBS can be triggered by the flu vaccine for sure. I am living proof.
Wow! Thank you for sharing your story. Since you won your case, your case can be used to helped others. Thank you.
chirpybirdy said:
I got CIDP from the H1N1 flu vaccine in 2010. I was perfectly healthy and had the vaccine. Then 10 days after the vaccine my foot started to go numb, kind of like it was falling asleep. Then it traveled up to my ankle and started in the other foot. I started to trip when walking for no apparent reason. I knew that something was wrong so I went to a neurologist and after weeks of test I was diagnosed with CIDP. My neurologist said that the H1N1 was probably the trigger in my case since I did not have any other underlying health issues at the time and the timing of the symptoms coming on within 10 days of the vaccine. I was able to obtain legal council and was successful in proving my case and was awarded compensation. It took three years for the legal team to pull all my medical records and win the case. The only reason I did take legal action is so that I have some money to cover the expensive IVIG infusions that I would not be receiving if it was not for the darn flu vaccine. Of course the courts award you very low, not a large sum of money. Unless you want to actually go to trial (which I did not, we settled out of trial). Going to trial would have been risky and the settlement I was offered would have been pulled. Trial could have lasted many more years and I was told that the specialist that they call are very hard on you and scrutinize everything in your past trying to prove you wrong. I was not willing to go that route. Anyway, I have gotten off subject. I just wanted to say that yes, CIDP and GBS can be triggered by the flu vaccine for sure. I am living proof.