Pneumonia Vaccine - who gets it?

[carriej22]

Hi Guys,

I try to keep medications and vaccinations to a minimum; but my doctor told me I had to get two, the flu shot and a pneumonia vaccine called Pneumovax. I had the flu shot two weeks ago - but pneumonia vac? whaaaat?

Is this normal? Who else gets it? Why? Does it have any common side effects? Am I asking too many questions?

...:)

[windchime]

I get a flu shot every year. I've never had a reaction except some soreness at the injection site. It won't necessarily keep you from getting the flu, but it can minimize the effects. Full blown flu can turn into pneumonia. This happened to me back in the early 90's. I've gotten a flu shot every year since. As far as the pneumonia shot goes----I've never had a reaction. This isn't given every year, but every five I believe. If you have bad lungs I would go for it. All my personal opinion of course. LOL Good luck whichever way you go. Let us know what you do.

[carriej22]

I got the flu shot last week (wasn't so much concerned about that), but I am a bit curious to this pneumonia shot. I had to have papers to get it and it seemed like it was a big deal when I asked for it at my clinic.. So I thought that was odd. I go in the end of the month for it.

[windchime]

It's usually recommended for those with comprised upper/lower airways. The paperwork might have to do with your health care system. I didn't have to do anything unusual for it. Here you can walk into a drug store and get it.

[rif]

Hi Carrie my son had the Pneumo jab couple of months ago with no side effects, apparently this one lasts for five years. First time his Consultant recommended the jab since initial dx in 2009.

Rif

[renidrag]

Never had either until diagnosis, (lungs) and since I have flu every year and had Pneumonia shot also. I also think it is a five year thing. No problems, soreness at injection site but doesn't last long. Not a strong believer in the shots but did what Doctor said.
Dale

[NikkiNicole]

My mother died from "raging pneumonia" when I was 17. My father had suffered from Alpha-1 Anti-trypsin deficiency for my whole life and had weakened lungs. When my mom got sick and died, the rest of us had to get the pneumonia vaccine to protect us from whatever horrific meningococcal/pneumococcal pneumonia she had and to protect my father from certain death if he got it. I didn't have any side effects. I was even horribly sick with a cold when I got it. Per my medical records, I don't need it again until 2045 and I got it in 1997. So it last pretty long.
It was the first thing that puzzled me when the doctor said back in December "You have pneumonia."
Apparently, I just had Wegener's ... no big deal right?
My doc doesn't want me getting any of the vaccines for flu because I have a long history of having the worst flu ever every time I get the shot, and remaining flu free on years that I don't.
Hope this helps.

[gilders]

I had the pneumonia vaccine many years ago (over 10 years). I thought at the time I was told it lasts for quite a few years (maybe 5?). But since then my Dr has said that it is a 1 time shot.
I would think that the pneumo vaccine would be recommended for anyone with WG.

[Debbie C]

I got both this year ..no problems. I was told the pneumonia shot was 5 years too.

Love your cat picture Cindy...too cute

[Randy]

I get a flu shot every year and do not have any side effects, except a sore arm where I got the needle for maybe a day. I got the pneumonia shot two years ago with no side effects. I take azathioprine, which supresses my immune system and increases the risk of developing pneumonia. This is why I was told to get the shot. I asked about the shingles vaccine that they are pushing on tv and magazine ads and was told "NO" The shingles vaccine is a live virus and the side effects can be as bad as getting shingles.
You can never ask too many questions.

[drz]

I got both this year ..no problems. I was told the pneumonia shot was 5 years too.

Love your cat picture Cindy...too cute

Me too, five years?

[carriej22]

I was talking to my GP today and she knows I have this weird thing with puke; so she warned me that sometimes vomiting is a side effect...

Hello anxiety!

[Dirty Don]

I was talking to my GP today and she knows I have this weird thing with puke; so she warned me that sometimes vomiting is a side effect...

Hello anxiety!

Take a pill, Pill!! OOOPS, ducks as fish fly by my head...or maybe that's fish food???? LOL!

[Pete]

I was talking to my GP today and she knows I have this weird thing with puke; so she warned me that sometimes vomiting is a side effect...

Hello anxiety!

I would guess that the probability that you experience a side effect with this vaccine would be pretty low. Remember that these legal disclaimers are written by lawyers whose job it is to cover their client's ass.

[vdub]

I asked about the shingles vaccine that they are pushing on tv and magazine ads and was told "NO" The shingles vaccine is a live virus and the side effects can be as bad as getting shingles.

I got a shingles shot. All docs said "OK", but I did quit the mtx for a couple weeks.

[marta]

I have to reply to this post and swim in a slightly different direction. My onset of Wegener's was because of the H1N1 flu shot for that 'pandemic' in 2009, and subsequently my only flare (6 months later) was triggered by the flu shot that my doctor at the time told me I had to take to protect myself due to my weakened immune system. I have a slight aversion to vaccines, especially ones that are in vogue. The H1N1 vaccine is a slightly altered version (different adjuvant amongst others) from the one in the 1970's for a similar swine flu pandemic and was pulled in a couple of weeks for starting so many new cases Guillain-Barre syndrome - another rare autoimmune disease. Here's a link to a program with something more recent - Narcolepsy, and autoimmune disease that is considered an older person's disease is getting too many kids - Sleeping Sickness: A W5 investigation into the sudden rise in childhood narcolepsy (http://www.ctvnews.ca/w5/sleeping-sickness-a-w5-investigation-into-the-sudden-rise-in-childhood-narcolepsy-1.1524420) . Just to give you a different perspective.

So now all of my doctors know that the trigger for me (and some others) was the flu vaccine. So I'm on the other side of the fence and say be cautious. They use adjuvants to increase the potency of the vaccine, some believe that this 'amped up' immune response sends the immune system into overdrive. The right storm of genetics, adjuvants, and other elements, can be bad news for someone like us with an already established malfunctioning immune system.

Question why the vaccine. Our main pneumococal predator is a bacterial one, not a viral one, hence most of us being on Bactrim or Dapsone to protect us against that bacterial pneumonia (Pneumocystis pneumonia - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Pneumocystis_pneumonia)) I just think the less immune response activators in the body while we're trying to get a handle on our already overactive immune system, the better.

For most people vaccines are the right thing to do, but for me personally they weren't. I'm just saying, ask questions.

I'm sorry if this is stirring the pot, but this is a big one for me.

[Dirty Don]

What Marta said...

[marta]

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.

[pberggren1]

I recently posted on here and on facebook that I would be getting the flu shot. I talked about it with my doc and she was fairly insistent that I get it. I am still not certain that I will get it.

Thanks for reminding me of all this Marta. I had forgot this for some reason. The flu shot was not in my notes and I was not really prepared to talk about it with my doc. My previous doc never even mentioned the flu shot with me. He did say that at least one of the vaccines I had to get for my cochlear implants in 2011 most likely is the cause of my severe dry mouth now and could be the cause of my retina bleeding. I had to get the flu shot, Menactra and Pnuemococcal 23.

Even though I have had many lung infections none have been the flu. All have been bacterial except for one that was a Candida strain. I am getting the RTX again in January so I think it is foolish to get the flu shot even because of this alone. I had forgot to mention that to my doc. I also forgot that the flu shot not only brought on Wegs for Marta but also triggered a flare. There is no doubt that those flu shots triggered the Wegs in Marta. There is no other explanation. I am glad that your docs agreed with you Marta.

I am also anal about hand washing and touching surfaces. But I play pool with many people a few times a week and many sick people show up and don't even wash their hands there after using the washroom.......:sad: Men are so bad for this. I wash my hands when I get there, 2 or 3 more times after, then right when I leave as well. I also don't shake hands with people either. That seems to offend some even when I explain why.

You are right Marta about medical folk going on autopilot when talking about the benefits of vaccines. I heard these speeches from other docs years ago, even from some nurses last night at pool.

I would like to hear your theory Marta, about how the rtx wipes our memory clean and helps ones with auto immune diseases and what is the triggers. I thought you talked about this before. Please share it with us again.

[marta]

I don't know that this is the spot to pontificate on my theories, but I'll try and keep it short.

I feel that the genetic modification of wheat and corn and soy, but mostly wheat because it's in so many things we eat, confuses our immune system. I have several books that allude to this thinking, but in the book 'Wheat Belly' there is a discussion on the number of NEW proteins that are created out of thin air when we splice two species of wheat together. 10-15 new proteins each time you combine, and there has been thousands of combinations over the last 50+ years, so tens of thousands of new proteins that have not existed during the entire time humans have been evolving, only in the last 50-60 years.

Autoimmune is a protein based disease. It's the immune system attacking various proteins in our bodies. In Wegener's it's the proteins in our blood vessel walls. So we eat bread, pasta, wheat products, these new proteins go in and our immune system's job is to attack anything it deems a threat. It attacks these proteins and now it has a memory for that particular protein it just nuked. With 10's of thousands of new ones I'm guessing many are pretty close to ones that reside in our bodies, and now the immune system is on a seek and destroy for that particular protein signature. Voila you get one of the 140+ autoimmune diseases or disorders. So when we get zapped with RTX, our memory is cleared and now the B-cells aren't attacking this protein that resembles one that is in that sandwich we ate.

They do know that there is a genetic predisposition to autoimmune disease (not any specific one, but autoimmune disease) and they do know that there is a trigger. So in my case, my entire family has one AI disease or another, I also had a couple of little ones that are more a nuisance than a life threat like this one, but didn't know the threat before I got sick and started researching. So I had the genetics, I got primed by listening to the 'food pyramid' advice and then I had the trigger with the H1N1 vaccine which amped my immune system response which never went back to normal.

We're gluten free for about a month now and I'm absolutely loving it. I feel well (aside from this little cold I have), I've lost enough weight to make me jump for joy, and this just by going gluten free (and I never really ate much bread before - apparently it was sneaking in.) Brian and Hana are gluten free too and they are both loving it. I've also cut out the sugar and other simple carbs out of the diet (still eating fruit though, I'll never ever give up fruit.)

There, that's as short as I could make it.... I speak, write too much. Can't seem to keep my thoughts to a few words. Sorry.

Peace.

[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 :thumbsup:
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 (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] ([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.

[Alysia]

very well done and said, Phil :thumbup:
so we, rtx-weggies, are free from the flu-shot-conflict. we just will not get it.
I am also relieved (among other things) to find out that my wg-doc does know one thing or more, since he was mistaken with me in the past.

[pberggren1]

No, I don't think my infectious disease doc is saying not to get the flu shot. He is saying that there is evidence that the rtx does wipe out some of the memory. I still don't think I will get it though.

[annekat]

I think some of us who are not on RTX but who are on CTX or MTX are still hesitant to get the shot. I believe Marta was not on RTX or probably any immunosuppressant when the flu shot caused her first WG flare, if I remember right? I may remember wrong, of course. Or at least she believes that's what caused it, though some of the docs being quoted here may not agree that there is scientific evidence of such. But WG is such a mysterious disease that how can we really know? Personal experience is worth a lot, and Marta has done extensive research on all WG and AI related issues, so is not basing her statements on her experience alone.

Perhaps, like vdub, I and many others could take the flu shot with no ill effects whatsoever and have some level of protection. It seems to be another one of those gambles we tend to run into as WG sufferers.

[Alysia]

No, I don't think my infectious disease doc is saying not to get the flu shot. He is saying that there is evidence that the rtx does wipe out some of the memory. I still don't think I will get it though.

I do understand that your infectious disease doc is pro vaccines.
but it is also true, like what my wg-doc said, that being on rtx, most likely make the flu shot useless.
I am not going to take it either.

[annekat]

I do understand that your infectious disease doc is pro vaccines.
but it is also true, like what my wg-doc said, that being on rtx, most likely make the flu shot useless.
I am not going to take it either. And my doc said something similar, although I was only on MTX, not RTX, so I think the reasons are probably a little different. His implication was that while I'm immunosuppressed, the shot "wouldn't do much", but that I should take it anyway, just in case. That was last year, and I didn't get the shot or the flu. This year, he also said I should take it, but the appt. was almost over and we didn't talk about those issues. I just said I'd think about it. He leaves it up to me. I think it's not likely I will get it unless someone here convinces me to.

[Alysia]

I think it's not likely I will get it unless someone here convinces me to.

it seem that the "wind" here is not blowing in that direction...
we will have to be careful not to catch any flu :sneaky: :drool: :scared:

[Randy]

I can understand people who have had a negative reaction to vaccine being hesitant about shots, and everyone reacts differently to these things. I get the flu shot because I have never had a bad reaction and because i figure it is like insurance. I have never had a car accident that was my fault but i buy insurance anyway, because you never know. The flu shot may not prevent me from getting the flu but it is added insurance that I won't. Also I just got over a cold, it took almost 4 weeks to recover. Before I got sick it was a week to 10 day's. I figure if a cold will do that kind of damage to me what will the flu do?. I don't think I have had the flu in 10 to 15 years. I have always taken precautions against catching the flu, but again you never know.Also it's free where I live, if you have a compromised immune system so why not?

[pberggren1]

You most likely had the flu Randy as a cold only lasts a couple days usually.

[carriej22]

Holy crap I go off for a little bit and you folk all go wild without me. Next time invite me to the party!

Here is how I view it... I'm not going to say someone is wrong or right; because I don't think anyone knows. I didn't read every post either (oops~!)

But I am not a Doctor.. As far as I know, none of us are. If one of my clients came in, and disagreed with something I recommended to them for skin care I would let them do as they wish. However, I know I'm right - because I took training and understand what I'm talking about. I assume this is the same with Doctor's. They have had years of training and I would hope he was steering me in the right direction. He got me to the state where I am now; so I'm just going to listen to him. I have had pretty good success doing that so far. I have enough stuff to worry about... I'm going to let him do his job and keep me ticking, while I try to live my life. Doc told me that the flu shot wouldn't be super effective... He said it would help. He said we want to do everything possible to keep me from getting the flu, and the flu shot is a small bit of protection.

I had both the flu shot and the pneumonia vac. I'm fine... If someone doesn't want to get it... Well that's your call. However, I would be some sorry you-know-what if I ended up getting infected - and if I get infected anyway... Well I tried to protect myself.

[pberggren1]

One thing we have to keep in mind is that the drug companies are evil and that is who trains doctors.

[carriej22]

Maybe I'm lucky, because I have not one... But two friends who are pharmacists. I can always poke their brains for information if I need it.

[pberggren1]

Same here. I have 5 friends that are pharmacists and about 15 friends that are med specialists in varying fields. Unfortunately both sides are taught by the drug companies.

[annekat]

It seems like most Weggies who have gotten the flu shot suffered no ill effects from it. But I have to listen also to those who said it caused a flare for them or even that it triggered their Wegs initially. Of course, the flu could also trigger Wegs, I suppose. But I feel that Wegs is such a mysterious and unpredictable disease, and even the top experts don't know for sure what causes it, although they have some educated theories, but how do they really know that a flu shot might not trigger Wegs? I also think the drug companies could have a large part in promoting flu shots and their usefulness could be overblown. I don't know if I'd go so far as to say that they "train" doctors, but there could be something to that, too. I figure since my doc says it won't do much anyway in my immunosuppressed state, why bother and take the risk that something weird might happen? However, I have nothing against anyone else deciding to get the shot and believe that most of you will have no problems with it.

[carriej22]

Well, theoretically one would think there would be a risk associated with exciting our immune systems (whatever is left of them) in any way. However, I think it's a matter of picking the lesser evil... It would be a much greater response if you were to get the flu, then the flu shot which is most certain. I work with people (and touch them!) everyday; plus there is a doctor's office in my building. So for me, it makes sense to try and protect myself.

I know some of you have jobs where you aren't "exposed" and/or can avoid people - so in that case if you're not going to be exposed to any baddies it wouldn't be such a big deal.

And I agree with you Anne.. To each their own. However my Dr put in an order for me to have the shots. I am not sure if one can go against this; as I was contacted by NB health to go have them done. If I said no they might have thrown me in the loonie bin! LOL

[annekat]

Strange, at the beginning of my WG treatment, my doc had me quit my allergy shots, I'm not sure why, but he said something like he didn't see any sense in "sticking me with needles" . Yet he thinks I should get the flu shot. Well, since he isn't a WG expert, I don't put that much credence in what he says about it... maybe that's why I'm resisting it. And he didn't do anything like putting in an order; it's up to me to do it or not.

I completely see your point, Carrie, about being around lots of people and therefore more at risk. If I were a schoolteacher, for example, I'd probably be nuts not to get one. I am actually around lots of people at the farmers market where I sell my pottery. But it is outdoors, which makes the germs seem less confined and more likely to float away. I am careful. But it is cold down there this time of year, which I suppose increases my risk of getting sick.

Maybe it's just that I hate getting shots and am looking for any excuse not to!

[carriej22]

I thought about a career change.. But I really don't know what else I could do. I'd love to be able to do some graphic design... But no one wants to hire someone who is self-taught. Oh well.

[annekat]

I thought about a career change.. But I really don't know what else I could do. I'd love to be able to do some graphic design... But no one wants to hire someone who is self-taught. Oh well. Maybe someone will stumble upon you and want to hire you for that someday. And who could have known you'd be getting Wegs and it would be as much of an issue in the first place.

[marta]

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

Alysia, my pleasure.

I know we have to make some weighty decisions with this disease but we need to make them with a clear understanding of the real threats, not just what the doctors are used to saying to every other patient. Like I said, I'm exposed to stuff from the petri dish known as elementary school every day... and I've had some doozies as far as colds and flus go, but I've come out of them fine. They linger a little longer in my case because I don't have the immune system (or immune memory) to fight them off as efficiently, but I'm still here. I don't get them often because I practice other healthy habits that are more efficient at keeping them at bay than getting a flu shot.
Having a flare and starting this WG treatment ride from square one however scares the crap out of me, and knowing that with each flare the chances of beating it down decrease, I'm completely and totally not interested in taking that risk by jabbing myself with any vaccine that has become the cool new thing in the last decade - like the flu shot and like the shingles shot and like the pneumonia shot among others. I don't want to be a guinea pig anymore. I've been collateral damage already and that's why am on this forum in the first place.

But that's the beautiful thing about living in a free country, we all get to make our own decisions and we all get to live with the consequences of said decisions.

May we all live long, healthy, happy lives and never have to see the wrong end of a CTX or RTX treatment again.

[marta]

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.

I totally agree drz, but there is a pretty good explanation I think. Lobby groups with lots of money have lots of power for one, but there are other connections that make conspiracy theorists jump with joy, many of the folks sitting on boards of GMO companies also sit on Federal boards like the FDA. Too much loving in the back benches I think... ha ha. http://en.wikipedia.org/wiki/Monsanto just as an example, but if you Google Monsanto and FDA - together, lots and lots of stuff comes up. Monsanto even had some interests in Big Pharma which would make a conspiracy theorist clap with glee at the connection. I'm not one, although I can see how I would sound like one, I just don't like to eat the popular media gruel without giving it a second thought.

Aluminum cap signing off. :)

[marta]

I thought about a career change.. But I really don't know what else I could do. I'd love to be able to do some graphic design... But no one wants to hire someone who is self-taught. Oh well.

Hey, I'm a graphic designer and had my own business, and ran a newspaper and worked for a federal agency where my job was graphic design, and I have never stepped inside a school to take a single graphic design course, so I think if that's what you want to do, then that's what you should do. Here are a couple of examples of logos I've done - just to whet your appetite:
Ski Marmot Basin - Jasper National Park, Alberta, Canada (http://www.skimarmot.com/) (my logo)
Wild Mountain: Explore Your Wild (http://www.explorewildmountain.com/) (my logo)
https://www.facebook.com/ExhaleDesigns?ref=ts&fref=ts (my logo)

I have a ton more but can't think off hand where they reside... I'm a bit brain dead...

My point - you don't need a fancy degree. If you know what you're doing, you can do it. It's a fantastic job to have where you don't have to be in an office. I think you should go for it. Do a few jobs for free to start and get your name out and see where that takes you. It worked for me. I've done brochures (out my ying-yang - i.e. lots and lots and lots of them) and had the whole advertising schedules for businesses, so I did all of their print ads both newspaper and magazine. I've done book design for people. I'm working on a temporary (4 month installation) museum exhibit right now, and people are coming up to me regularly asking me to work for them. In fact, if you like I can pass some work your way next time I get approached. That way you can get your feet wet in the biz if you like. Just say the word.

Marta

[marta]

Well, theoretically one would think there would be a risk associated with exciting our immune systems (whatever is left of them) in any way. However, I think it's a matter of picking the lesser evil... It would be a much greater response if you were to get the flu, then the flu shot which is most certain. I work with people (and touch them!) everyday; plus there is a doctor's office in my building. So for me, it makes sense to try and protect myself.

I know some of you have jobs where you aren't "exposed" and/or can avoid people - so in that case if you're not going to be exposed to any baddies it wouldn't be such a big deal.

And I agree with you Anne.. To each their own. However my Dr put in an order for me to have the shots. I am not sure if one can go against this; as I was contacted by NB health to go have them done. If I said no they might have thrown me in the loonie bin! LOL

I wont comment on the first part of your post because you know how I feel about that... I blather on endlessly about it... but I just want to say something about your last couple of sentences. Remember that your doctors work for YOU, not the other way around. YOU are the boss in this scenario. YOU call the shots. You can choose what happens and what doesn't happen. Just make informed decisions and your doctor can't do a thing about it. They are there to lead you based on the experience they have but as I've said before, unless they're WG specialists, they probably know less about the disease than you do. They have all sorts of cases and with doctors they default to the most common ailments and approaches. One thing us Weggies are not is common, as I'm sure you've already experienced while trying to get a diagnosis.

YOU are the boss, not your doc.

[marta]

Same here. I have 5 friends that are pharmacists and about 15 friends that are med specialists in varying fields. Unfortunately both sides are taught by the drug companies.

I have a friend who worked as a sales rep for a drug company... what he told me blew my mind. It was him, without any medical training in his life going in and schmoozing the docs, buying them expensive gifts, taking them golfing, and singing the 'party line'. He wasn't selling vaccines but all sorts of other pharmaceutical drugs. They also get bonuses when they prescribe more of a certain company's drug. It's really a gross scene - I had forgotten about that until I just read this post of Phil's. Jim ended up quitting after a couple of years because he just hated the way the whole thing worked.

Another thing that should make you stop and question is the fact that 10 years ago there was no flu shot that was available for free to entire populations... there was flus, people lived through them. Even immune suppressed people lived through them. So why now is so much money spent promoting flu shots and why is our government giving it to us for free - they are in Canada anyway. Pharma is big business, and up until now they have been living high on the hog by creating a need where there wasn't one before just to sell more drugs (I personally think that's about as low as you can get on the scale of humanity) but things are changing because of our previous ignorance How the Game Changed Against Big Pharma - Creating New Opportunities - Forbes (http://www.forbes.com/sites/adamhartung/2013/10/09/how-the-game-changed-against-big-pharma-creating-new-opportunities/) - hopefully we're heading in the right direction: Pharma 2020: Marketing the future - Which path will you take? (http://www.pwc.com/gx/en/pharma-life-sciences/pharma-2020/pharma-2020-marketing-the-future-which-path-will-you-take.jhtml)

One last thought:

CDC's estimates on flu related deaths: Low 3,000 deaths and high estimate is 49,000 deaths (CDC - Estimating Seasonal Influenza-Associated Deaths in the United States: CDC Study Confirms Variability of Flu | Seasonal Influenza (Flu) (http://www.cdc.gov/flu/about/disease/us_flu-related_deaths.htm))
Prescription drug adverse side effect related deaths: 100,000 (Prescription Drugs Kill Over 100,000 People Each Year, Are You Being Medicated Incorrectly? | Collective-Evolution (http://www.collective-evolution.com/2013/05/07/death-by-prescription-drugs-is-a-growing-problem/))

Why aren't we vaccinating against prescription drugs - ha ha ha.
Now I will stop and go back to renovating my bathroom.
Carriej if you are interested in my earlier offer send me a PM and that way I'll get it in my e-mail.
I will stop stirring the pot here for a while.

[pberggren1]

I personally love it when you stir the pot Marta. You have said all valid things here. My last doc and my current doc are classed as Wegs experts and even they told me drug companies are just evil.

Carrie, Marta has a very good point about using your talent and creating your own business from home. It is a great idea.

And when Marta says we are the boss she is absolutely correct. WE ARE THE BOSS!!!! and that's all there is to it.

[carriej22]

Not pot stirring... I don't mind.

It's just that you got to make a decision, and I guess I made mine. I trust my specialist to put me in the right place; as he hasn't steered me wrong yet. When all the other doctor's basically shrugged, he knew by taking one look at me what was up.

I will send you a PM Marta. I have examples of things. I will link them to you.

[pberggren1]

But, at the end of the day Carrie we have to be just as knowledgable about our disease and processes and meds as our docs. They are there to guide was things get tough. Then we still make the final call.

[marta]

I just shot out of bed and turned on the computer because I thought I might have broken the rules of the forum talking bout gov stuff. Andrew please delete anything if I've goofed up.

Carriej, I totally agree. I'm not trying to say otherwise. And I love your stuff, just glanced at it but am turning the 'box' off right now. Will PM you tomorrow.

Nighty night y'all. Cold Rocky Mountain hugs.

[pberggren1]

Cold Rocky Mountain Hugs?.....how can they be cold?......:confused1:

[pberggren1]

I can't see how you might have broke any rules Marta.

[Alysia]

Alysia, my pleasure.

I know we have to make some weighty decisions with this disease but we need to make them with a clear understanding of the real threats, not just what the doctors are used to saying to every other patient. Like I said, I'm exposed to stuff from the petri dish known as elementary school every day... and I've had some doozies as far as colds and flus go, but I've come out of them fine. They linger a little longer in my case because I don't have the immune system (or immune memory) to fight them off as efficiently, but I'm still here. I don't get them often because I practice other healthy habits that are more efficient at keeping them at bay than getting a flu shot.

thanks again marta :thumbup:
I am exposed to germs and virus, because I work with people and have my 3 kids, and meet friends (although they know to warn me not to meet them when they are sick) and use the train etc. but I found that walking everyday in every weather, taking vitamins, eating healthy (I rarely eat in public places), and keepping high standart of hygiene can help to avoid some virus. my daughter had mononucleuosis cople of months ago but thanks God, I was not infected... (but I still can't prevent the infections I am having constantly :( )

[Alysia]

I just shot out of bed and turned on the computer because I thought I might have broken the rules of the forum talking bout gov stuff. Andrew please delete anything if I've goofed up.


beleive me, marta, as a "criminal" (still feeling ashamed :blushing:) who lately did break a rule by talking about religion, I learned the rules by heart :wink1:and I can assure you, that you didn't break any of them :mellow:

[annekat]

Oh, Alysia, I don't think you broke them, either. Religion and politics WILL be mentioned on here at times, it is a fact of life. The rules are to not get carried away and start preaching or ranting or trying to convince anyone about anything. At least , I think... I haven't looked at the actual rules lately. I think it is interesting to hear some things about your religion now and then, and it doesn't mean you are automatically breaking the rules to just mention these things. I hope I'm not wrong.

[marta]

Cold Rocky Mountain Hugs?.....how can they be cold?......:confused1:

My hugs are always warm but they're coming from the currently cold Rocky Mountains. It's -32C today, that's not counting the wind factor. It's beautiful and sunny though.

Thanks you guys. It's so wonderful having you as my second family... now off to do some 'sick grouting' - ha hah

[Alysia]

... now off to do some 'sick grouting' - ha hah

marta, be careful with the stuff, not to breath too much dust or others which are not good to the lungs... we weggies should pay attnetion.....

[pberggren1]

My hugs are always warm but they're coming from the currently cold Rocky Mountains. It's -32C today, that's not counting the wind factor. It's beautiful and sunny though.

Thanks you guys. It's so wonderful having you as my second family... now off to do some 'sick grouting' - ha hah

I remember your hug. Your family is so loving and warm........:thumbsup::love:

[Alysia]

2013 IDSA Clinical Practice Guideline for Vaccination of the Immunocompromised Host (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full)


Should Immunocompromised Patients Receive Influenza Vaccine?
Recommendations

24. Annual vaccination with IIV is recommended for immunocompromised patients aged ≥6 months (strong, moderate) except for patients who are very unlikely to respond (although unlikely to be harmed by IIV), such as those receiving intensive chemotherapy* (strong, low) or those who have received anti–B-cell antibodies within 6 months* (strong, moderate).



..............
live vaccines should not be administered to patients with chronic inflammatory diseases on maintenance immunosuppression: LAIV (weak, very low)
.............
immunogenicity was reduced in patients receiving azathioprine, infliximab, or rituximab in some studies [100 (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full#ref-100), 101 (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full#ref-101),449 (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full#ref-449)–452 (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full#ref-452)]. In addition, antibody response to vaccine was reduced in patients with RA who received rituximab compared to the response in immunocompetent persons or RA patients receiving MTX [453 (http://cid.oxfordjournals.org/content/early/2013/11/26/cid.cit684.full#ref-453)]. Immunogenicity to inactivated H1N1 influenza vaccine was reduced in patients with rheumatic diseases on various immunosuppressive regimens compared with immunogenicity in immunocompetent controls.

[pberggren1]

Here is a link to an e-mail newsletter I get.


If You Missed Your Flu Shot, Read This! (http://www.advancednaturalmedicine.com/greater-immunity/if-you-missed-your-flu-shot-read-this.html)

[Alysia]

Here is a link to an e-mail newsletter I get.


If You Missed Your Flu Shot, Read This! (http://www.advancednaturalmedicine.com/greater-immunity/if-you-missed-your-flu-shot-read-this.html)
Good link. Thanks for sharing :thumbup: I think that viruses and germs cannot survive the cold weather ...:sneaky::confused1:

[drz]

Here is a link to an e-mail newsletter I get.


If You Missed Your Flu Shot, Read This! (http://www.advancednaturalmedicine.com/greater-immunity/if-you-missed-your-flu-shot-read-this.html)

Lot of good hints in here. The author does recommend flu shots for people with weakened immune systems : " don't normally recommend them unless a patient has such weakened immune system that even this little bit of protection would be better than none."

[annekat]

Lot of good hints in here. The author does recommend flu shots for people with weakened immune systems : " don't normally recommend them unless a patient has such weakened immune system that even this little bit of protection would be better than none." I noticed that, too, drz. So each of us gets to decide how much risk we are at, either from getting the shot or getting the flu. We are so on our own with this disease. I doubt it would kill me to get either of them.

[carriej22]

If it makes anyone feel better, I had my flu shot the beginning of Nov, and my pneumonia shot like 3 weeks ago...

I'm still alive as far as I know... However I guess I could be a zombie. :flapper:

[Pete]

If it makes anyone feel better, I had my flu shot the beginning of Nov, and my pneumonia shot like 3 weeks ago...

I'm still alive as far as I know... However I guess I could be a zombie. :flapper:

Too cute!! Glad you're feeling ok!

[pberggren1]

I asked my lung doc today about the flu shot. He said I should probably get it but it is totally up to me. He said he trusts me to make an informed and logical decision. Then I mentioned the RTX and he said: Ya, then the flu shot would be pretty much useless.

[annekat]

I asked my lung doc today about the flu shot. He said I should probably get it but it is totally up to me. He said he trusts me to make an informed and logical decision. Then I mentioned the RTX and he said: Ya, then the flu shot would be pretty much useless. Well, that makes it an easy decision, then, doesn't it? My doc said it wouldn't do much with me on MTX, but still thought I should get it. He leaves it up to me, though.