Searching for anybody that has connected their WG to vaccines.

I realize that it is recommended by our doctors that we get the flu vaccine. There are however a certain subset of weggies that have had very bad things happen to them when taking vaccines. I know Marta and myself have a history of adverse reactions to vaccines. I'm searching for anyone else in this subset of weggies. I'd like to compare notes. Very shortly after getting vaccines, I had either infarcts or strokes and also the onset of my Wegener's.

Nope. I don't have anu idea what caused my Wegeners but I'm pretty sure that vaccines haven't harmed me.

I am pretty convinced the flu vaccine of 2011/2012 triggered our daughter's WG. She had a genetic predisposition to AI (which we were unaware of at the time) and getting the flu (which the vaccine of course tells your body you need to fight) can lead to an onset of WG. She only had the vaccine once (until she turned 18. Now she chooses to get it #TeenRebellion lol) I am not the only parent of a pediatric-onset Weggie to believe our child's WG was triggered by a flu vaccine.

Was it a live vaccine or a killed vaccine?

My Dr. told me NOT to get any live vaccines. In the last 6 yrs I have got all flu, shingle, pneumonia, pvc 13 shots with no problem.
Remember all of us respond differently to to things. Sometimes with my meds, I feel like I have had to just jump into the water and see if it is hot or cold. No one can tell me how it will work or not work. This is all I can add to your question. Someone here will probably have a more direct answer to your question.

I’ve gotten a flu shot every year for the past 30+ years with no issues. I got the pneumavax last year and the previous versions of pneumonia vaccine since 2011, also with no problems. I got the shingles vaccine when I was 60 (now 71) and that went ok. My rheumy at Cleveland Clinic recommends the annual flu shot.

All I know is that dead virus vaccines are ok, but live virus ones are not...

Quote:

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Originally Posted by John S

Was it a live vaccine or a killed vaccine?

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For our child and for at least one other ped-onset family it was a killed vaccine

I'm not really looking for advice from people who have had no issues with vaccines. It'll just gum up the thread. Most of you, obviously, have had no problems. This isn't an issue of live versus dead vaccines. This is about a very rare subset of weggies that react to most vaccines, both dead or alive.

Quote:

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Originally Posted by whatthewhat

I am pretty convinced the flu vaccine of 2011/2012 triggered our daughter's WG. She had a genetic predisposition to AI (which we were unaware of at the time) and getting the flu (which the vaccine of course tells your body you need to fight) can lead to an onset of WG. She only had the vaccine once (until she turned 18. Now she chooses to get it #TeenRebellion lol) I am not the only parent of a pediatric-onset Weggie to believe our child's WG was triggered by a flu vaccine.

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I'd like all of us to get together, so that we can compare notes. I also had a very bad reaction to the 2011/2012 flu vaccine.

Hi Tom,

Threads that might help:


https://www.wegeners-granulomatosis....disease-to-you

https://www.wegeners-granulomatosis....-hornet-s-nest


https://www.wegeners-granulomatosis....aving-flu-shot

I read they have developed a new vaccine for singles that is safer for us people with poor immune systems but it won't be available till next year.

Just something to consider while discussing live vaccines vs dead vaccines.

The live ones, absolutely stay away while on WG treatment (immune suppression) because a live vaccine can do really bad things, up to and potentially including death.

The dead vaccines, are not imminently dangerous, but just consider what their job is. Their job is to jolt the immune system into a response to an inert virus, mixed with adjuvants (additives designed to put your immune response into overdrive) so that you develop an antibody.

We are barely managing treatment for autoimmune diseases because we know so very little about the immune system, yet it doesn't strike anyone as odd that we're OK going in there and stirring the hornet's nest with new and spanky vaccines, and crossing our fingers for the best. If you think the science, and subsequent reporting behind vaccines is integrous, think again.

My message to anyone about this topic is, don't go in blind. Educate yourself. Step out of your comfort level, and read some research on the other side of the debate from where you stand. I do. I want to see what everyone is saying, whether I agree with them or not. I want to approach the subject contextually, and I think everyone should. It's too bad we live in a culture where healthcare is abdicated to healthcare professionals, and so many people want the easy way out by just getting a pill or a jab in hopes of a quick fix. This is, in my opinion, is our biggest roadblock to moving forward. (My anthropology degree trying to sneak out.)

Peace out everyone. Best of luck with your/our choices.

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Originally Posted by crowneagle

I'm not really looking for advice from people who have had no issues with vaccines. It'll just gum up the thread. Most of you, obviously, have had no problems. This isn't an issue of live versus dead vaccines. This is about a very rare subset of weggies that react to most vaccines, both dead or alive.

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I think most of my doctors are aware that vaccines can cause a bad reaction in some people or at least some of the time. The best predictor of this is if you had a bad reaction to a vaccine in the past.

Also vaccines tend to become less effective as you age since your immune system becomes weaker. The same is true if you have diabetes or other disease that weakens your immune system and certainly for those of us who take drugs to suppress our immune system.

They ask me if I ever had a bad reaction to any vaccine. The benefits of a vaccine are likely to be lower for me due to my weak immune system so they weigh this against any risk of bad reaction. For me the benefits are iffy or at best uncertain due to my weak immune system but since I have no history of bad reactions they also assume there is little risk to me from the vaccine. So they advise me to take a flu shot or pneumonia shot even if it might not help me much. If I had a history of bad reactions to a vaccine they would not give me the vaccine.

Also things like a flu shot are sort of a crap shoot since no one knows for sure what flu type will be most prevalent in any given year but they need to guess and make the vaccine months in advance. If they guess wrong the benefits of the flu shot may be rather minimal.

Like everything else related to your health care it is important to know the percentages but it is most important to know your own history and how you generally react to various meds or treatments since that is most important in deciding what is apt to be best for you.

Quote:

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Originally Posted by crowneagle

I'm not really looking for advice from people who have had no issues with vaccines. It'll just gum up the thread. Most of you, obviously, have had no problems. This isn't an issue of live versus dead vaccines. This is about a very rare subset of weggies that react to most vaccines, both dead or alive.

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Exactly! LOL Not sure if it is a failure to communicate...examples of the failed American education system..you know..those who were left behind.....were kicked in the head by a mule or just plain stu---...

But anyways....

Crowneagle, I can talk to you outside of this forum on what you are asking. It is rare, but vasculitis (GPA and other forms) has been documented following vaccines (including influenza vaccination)...there are many studies on the net to read about.

"influenza vaccine should not be repeated for patients with ANCA-associated vasculitis following influenza vaccination or with post-influenza vaccination-reactivated IgA vasculitis"

Here is something to chew on:

https://www.ncbi.nlm.nih.gov/pubmed/28521688

Those of you who want to argue, make statements of "well for 30 years" blah blah blah....Save it for someone else and take it up with those who do the research....lol

Happy New Year!

Cheers!!!!!

The research recommendations is consistent with what my treating doctors have told me about getting flu or other shots. If you have had a problem after them then you should not get anymore of them.

I'm glad to see this post, and the link. I have been getting a flu shot every year, and actually received the pneumonia shot less than a year ago. And, yes, my Doctors said, just don't get the live vaccine, because of my suppressed immune system....soooo.....Thank you Bing!!

Quote:

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Originally Posted by Bing505z

Exactly! LOL Not sure if it is a failure to communicate...examples of the failed American education system..you know..those who were left behind.....were kicked in the head by a mule or just plain stu---...

But anyways....

Crowneagle, I can talk to you outside of this forum on what you are asking. It is rare, but vasculitis (GPA and other forms) has been documented following vaccines (including influenza vaccination)...there are many studies on the net to read about.

"influenza vaccine should not be repeated for patients with ANCA-associated vasculitis following influenza vaccination or with post-influenza vaccination-reactivated IgA vasculitis"

Here is something to chew on:

https://www.ncbi.nlm.nih.gov/pubmed/28521688

Those of you who want to argue, make statements of "well for 30 years" blah blah blah....Save it for someone else and take it up with those who do the research....lol

Happy New Year!

Cheers!!!!!

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You guys are awesome. Great link Bing. Thanks.
It's so nice to not have to argue about what went down in your own case with people who were clearly not there, and just show them the science.

Absolutely goes with everything that I keep saying and keep getting shut down for by the positional bunch, too scared to come out of their comfort zone bubble.
I don't see it now (so they might have taken it out,) but after I made the connection in 2011, I went back and looked at the insert for the H1N1 vaccine, and on page 7, buried deep within in very small print, is a warning that Vasculitis is a rare but possible side effect of the vaccine. That's too much to handle for some though.

My vasculitis specialist also believes that the vaccine was my trigger and supports me all the way.

Any info on Tetanus and Vasculitis?

Ed.

Quote:

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Originally Posted by marta

You guys are awesome. Great link Bing. Thanks.
It's so nice to not have to argue about what went down in your own case with people who were clearly not there, and just show them the science.

Absolutely goes with everything that I keep saying and keep getting shut down for by the positional bunch, too scared to come out of their comfort zone bubble.
I don't see it now (so they might have taken it out,) but after I made the connection in 2011, I went back and looked at the insert for the H1N1 vaccine, and on page 7, buried deep within in very small print, is a warning that Vasculitis is a rare but possible side effect of the vaccine. That's too much to handle for some though.

My vasculitis specialist also believes that the vaccine was my trigger and supports me all the way.

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:thumbup:Marta....Happy New Year

Back at ya bro.

May 2018 be the best one yet.

:thumbup:

@Masha,

I didn't want to write back to you on Ben's thread because it's about another issue. So I write here.

I copy what you wrote there:

"Alysia, You gave me food for thought. No change in medicine or activities. Then I had my AHA moment. I got a pneumonia shot. The pharmacist said that I may possibly have a reaction since I get the Rituxan infusions. I think that set it off. Doctor said I should have pneumonia and flu shot. The flu shot will be available at the end of August and I am scheduled for infusion in mid September. Hope it doesn’t start another flare, but the risk of getting the flu is dangerous for me. Thanks for helping me think about it."

End quote.

Please check the above thread. Lots of info.

As far as I understand, flu shot might be useless because rtx will "delete" the "memory" of it. It can also cause a reaction.

Will you please consult with your dr. about it ?

Thanks, Alysia, I did see it. From what I understand you need to wait 6 months after Rituxan infusion for dead vaccine, or the Rituxan will wip out the vaccine. My conundrum is that I will be q5 1/2 months and will have2 weeks before starting next infusion. I have read a lot on this topic. Mayo and Johns Hopkins suggest having it. So do my doctors. Difficult call but I am going with the advice of the professionals.
Thanks, Masha