Pneumonia Vaccine - who gets it?

[pberggren1]

That makes sense to me. Many people I see that have auto immune disease and go gluten free seem to do much better.

I think maybe I will not get the flu shot and just tell my doc I did.

I hate this disease at times.

[marta]

Phil, please make a decision based in your best interest, not my crazy theories... I'm just a schmo, and am not telling you what to do. I just think, and you and I are on the same page on this, that we need to take ownership of this disease, and do our own research and have those discussions with our doctors. I'm talking about my own personal experience. But I think we all need to ask our doctors some hard questions to make sure we lead long healthy lives.
It was from the experiences of people on this forum that I got the courage to speak up about my concerns, and opinions in regards to my treatment, with my healthcare professionals .
And after seeing some absolutely amazing people from this forum get taken by Wegener's it's great to have each other and our collective experience to watch our backs.
Have a heart to heart with your doctor.

[pberggren1]

Thank you Marta. You do not have crazy theories. They make good sense. You would make a great researcher, that is for sure. I will have a heart to heart about this with my doc in January when I see her again. I will also try to talk about with my lung doc next month, although I don't have a lot of time to talk with him about much at all.

I also got a lot of courage from this Forum. So many great people here. I miss Jack and Al and Lightwarrior every day.

Thanks again Marta, and keep us posted about your gluten free mission.

[Alysia]

Thanks Don...,

I also wanted to add one other point worth considering when you go out to get a vaccine.

If you've had any of the vaccines you're talking about and have had an RTX treatment after that, those vaccines are null and void. The RTX kills off all of our B-Cells (most of them anyways, the ones that are hiding in nooks and crannies can avoid being killed, but those are few and far between) and it is our B-cells that store the memory of what we've had and the vaccines that we've had. So even though I got a Chicken Pox vaccine after I had Hana, I now no longer have Chicken Pox antibodies because all of that memory has been wiped clean by my two separate RTX treatments.

I have my own theory of why wiping the memory clean helps people with autoimmune disease, and what is the penultimate trigger for autoimmune disease but I wont bore you with my hypothesis. What I am writing here is fact, not hypothesis. All of those who have had the pneumonia vaccine and have since had RTX treatment, you are no longer protected against that viral strain that you were vaccinated against - regardless of what the docs tell you is the life-span of the vaccine. I had this discussion with a couple of doctors at our local clinic, and it really is something they're not used to thinking about. I questioned them along this line, and after some chin rubbing and head scratching they agreed that this is indeed the case. But they actually had to sit down and think it through, whereas I think many medical folk are on autopilot when they talk about the benefits of vaccines, and they don't think about our very unusual situations.

I am talking about RTX because that one wipes out all the B-cells. CTX kills many T-cells, B-cells, and other fast growing cells like our hair follicle cells, but I don't know if CTX wipes it all clean the same way that RTX does, which is why I'm not speaking about CTX on the vaccine discussion. I'm thinking there is still some memory left after CTX treatment, however after RTX, we're wiped clean and start building immunity from scratch.

So why aggravate our immune systems into action if the next RTX treatment will wipe that clean and the whole thing will have been for naught. I have a cold right now, but just by keeping safe practices as part of my new life - washing hands regularly, avoiding touching my face holes, and keeping a safe distance from people with obvious health issues, I've managed to keep myself relatively cold/flu free (touching wood right now) despite having a kid in Elementary School who is surrounded by germs. She's gotten pretty obsessive about washing her hands since I got sick too.

Just my opinion. Please do what you or your doctor feel is right, but also don't follow advice blindly. Ask questions, be your own best advocate. You're the one that has to go home to your family, the doctors go home to theirs at the end of the day and don't think about us. They don't go online and research WG and related insanities ad nauseam like us patients. We have to stand up for our right to have a healthy, pain free life to spend with the ones we love.

thank you so much Marta for your wide and clear explanation
my doc also told me that the flu shot is not effective with rtx, but he didnt explain why.

[Alysia]

I think maybe I will not get the flu shot and just tell my doc I did.

I believe your doc will be glad to learn from you and it will help her with other patients as well. so better share it with her.
I know how tough it can be not to agree with your docs at times, since we are so dependent on them and prefer to just blindly trust them. but as you always say, you are your best doc.

[drz]

I have often wondered why most countries won't let GMO food or even crops into their country, but in USA and Canada they aren't even required to tell us that it is an ingredient in our food and it seems present in most of our food now. The rapid increase in AI diseases in past couple decades must correlate with some causal factor even though no one seems sure what it is.

[pberggren1]

I asked my infectious disease doc about the flu shot for me.

This is the e-mail and response I got from him:


Hi Phil,

Thanks for the interesting question - it isn't one that I have previously considered, but there is definitely clinical evidence to support the fact that the administration of rituximab impairs responsiveness to flu vaccine:


http://www.ncbi.nlm.nih.gov/pubmed/23064976


With that said, there's *no* evidence that influenza vaccine should cause any sorts of adverse reactions or flares, so I would still say that it is very reasonable for you to get especially given your impaired / suboptimal lung function, even if the responsiveness of the vaccine may perhaps be decreased in your circumstances. It is hard for me to comment on the side effects that you and your friends may have experience with vaccines, but all that I can say is that the science would not support an association between adverse events and administration of vaccine, so coincidence is probably the best explanation that I can come up with.


Hope that helps - take care, stay well.


Best,
Alex.



On Sat, Nov 30, 2013 at 5:02 PM, phil berggren <[email protected]> wrote:

Hi Alex:

I hope this finds you well.

I want to ask you about the Flu shot and if it would benefit me or not. I get Rituximab infusions every 6 months now and from what I understand that wipes out the B-cells. And the B-cells are like the immune memory. So if I go the flu shot now and then in January when I get the Rituximab that memory would be wiped clean. Am I understanding this correctly? I have spoken to many Wegener's and other Vasculitis patients about this and they have all said the same thing.

I have never been a fan of vaccines in general. I know many serve a purpose but there are some that do not sit will with me. There have been a few fellow Wegener's patients that I know have had flares and onset caused by the flu shot. So that is on my mind as well. Also I had the flu shot in 2011 shortly before my cochlear implant surgery along with Menactra and Pneumococcal 23. About 3 days after I received these vaccines I developed severe dry mouth and have had it ever since. Tagboto seems to think that one or a combo of those vaccines caused the dry mouth. But that is all in the past but I just wanted you to see part of why I fear vaccines.

Anyway, When I saw Bonnie this week she asked me if I had got the flu shot yet for this year. I said: No, I don't like them. So then she gave me the lecture about the flu and how I am very compromised, etc. She caught me off guard and I didn't have a good response for that.

I just want to know if we are right about the Rituximab wiping the immune memory clean.

Thanks again,
Phil Berggren

[pberggren1]

I knew I would get a response like this from him because vaccines is a major part of his work. I'm sure that I will get the same response from Bonnie and Dave, my lung doc, as well.

[vdub]

I'm a fan of vaccines. If they come out with one for hang nails, I'll get it. I've had all the important vaccines and no ill effects. Simply no problems at all. Am I better protected than anyone else? I have no idea, but certainly not worse off....

[pberggren1]

I know what you are saying vdub. It is just that I have seen so many people that seem to have had ill effects from vaccines. Marta and I are just two of many. And I doubt anyone will be able to convince either of us that what happened to us was just a coincidence.