Flu vaccines

[sbeach78]

Should I get the flu shot or is that a bad idea with WG

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[vdub]

This question has been asked a lot and you will get a variety of answers. My personal experience is "no problem", Just make sure you get the dead virus variety. I believe the nasal spray is a live virus, but always ask and make sure.

My take on it is that we are already immune-suppressed and anything we can do to bolster us from getting the flu is a big plus. I was also advised to get a shingles shot, which I did, and I didn't have a problem with that either.

[windchime]

I'm with Vdub on this one. I've had the flu and pneumonia shots with no problems. If you search the archives you will find some lively discussions regarding this topic.

[sbeach78]

Yeah its exactly what I was thinking, just. Wanted to know what others thought

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[Pete]

The shingles vaccine is a live virus vaccine generally given to people over age 60. I would check with my wegs specialist before having a shingles shot. I got my shot several years before I got wegs.

[MikeG-2012]

The shingles vaccine is a live virus vaccine generally given to people over age 60. I would check with my wegs specialist before having a shingles shot. I got my shot several years before I got wegs.

I was told that while I am on immune suppressants, under NO CIRCUMSTANCES should I have ANY kind of LIVE vaccines, especially the one for shingles. With a compromised immune system, teh live virus could cause you to get what you are trying to vaccinate for.

[sbeach78]

I will keep this in mind, thank you

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[jmmilliorn]

Since I was diagnosed with WG, my doctor told me not to take the flu vaccine any more. If you have a WG doc they will probably tell you the same. If you ask someone not familiar with WG, they may not.

[sbeach78]

Yeah its kinda what I was thinking, the doctors at OU said no more vaccines, but I was only the third person with WG they had ever seen.

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[jmmilliorn]

That's pretty scary, Shawn. Only three WG patients? You should really consider seeking out someone who sees many WG patients as your primary quarterback for treatment ongoing. Even better is someone who sees only WG or vasculitis patients. You've got a lot at stake here. Don't take a chance on an inexperienced physician no matter how competent they are in their specialty field if they aren't very familiar with WG.

[Pete]

Since I was diagnosed with WG, my doctor told me not to take the flu vaccine any more. If you have a WG doc they will probably tell you the same. If you ask someone not familiar with WG, they may not.

It may be that you should not take any vaccines while the disease is really active. Interestingly, my wegs doc at Cleveland Clinic gave me a flu shot last fall when I was having a minor flarre (no obvious symptoms). I got past the flare ok with two doses of rituxin and had no other issues during the succeeding months.

[sbeach78]

Unfortunately no one in the area has a lot of experience, my current financial situation does not allow me to travel very far, but I have been on the search for someone atleast with experience.

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[Alysia]

That's pretty scary, Shawn. Only three WG patients? You should really consider seeking out someone who sees many WG patients as your primary quarterback for treatment ongoing. Even better is someone who sees only WG or vasculitis patients. You've got a lot at stake here. Don't take a chance on an inexperienced physician no matter how competent they are in their specialty field if they aren't very familiar with WG.

Hi Mike,
having 3 weggies is a lot of experience in my country. most of the docs that I had/ have never saw a weggie but me.

[Alysia]

Unfortunately no one in the area has a lot of experience, my current financial situation does not allow me to travel very far, but I have been on the search for someone atleast with experience.


this forum is the best wg-doc you can find on the globe.
as for flu vaccines - I am afraid that they can cause flaring.

[jmmilliorn]

Who do you see at the Cleveland Clinic? I see Dr. Alexandra Villa-Forte. She has/had hundreds of Wegener's patients. I've had such bad experiences with rheumatologists and other specialists that are tops in their field but don't know WG I'm extra cautious. I nearly died before I went to CC.

[sbeach78]

I have never been to Ohio. The only people I have seen are in Arkansas and Oklahoma. Sparks Medical great staff, but no experience, And OU Med. Who had only a few patients and terrible staff wouldn't suggest anyone going there my room was dirty.

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[sbeach78]

A lot of specialist passing me back and forth. Only the rheumatologist has seen anyone with WG.

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[jmmilliorn]

Maybe your insurance would help with transportation if there is no WG qualified doctor in your area? Doesn't cost to ask I guess.

[sbeach78]

True never hurts to ask I will give them a call, not like I don't have the time...thanks

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[jmmilliorn]

Well flying to a WG center like Cleveland Clinic is an extra cost, but so is getting sicker or losing an organ due to someone's lack of experience. Once I was diagnosed and a treatment regimen started, I only fly to the CC once or twice a year. My doc lets me communicate with her directly by email, iphone or fax. Getting started on the right medicine (without complications or reactions) is important. I doubt if I would have gotten Rituximab from the local yokels. That is the best WG medicine for my condition right now. I was allergic or had complictions from Imuran, Methotrexate and Cellcept. RTX is saving me right now. I've tapered down on steroids from 60 mg/day to only 9mg now, too.

[jmmilliorn]

My primary care physician in Fort Worth who sees me for non-WG issues says he would rather not risk making treatment decisions on WG related matters. Only problem with this is that when I have sinus, leg swelling, infections, the flu or a cold, where do you draw the line at WG vs. non-WG?

[Dirty Don]

where do you draw the line at WG vs. non-WG?

You don't...it's always WG first then whatever next...

[pberggren1]

So true. It can be very hard to tell what is disease activity, damage from disease, effects from meds or something else.

[jvilner]

This thread helps me a lot! Every time a new symptom arises I don't know what to do. I kind of didn't want to accept that it was WG related, but guess there's no choice. Problem I experience now is trying to forge on and not wait around for a symptom to arise. Live life!! 😌

[sbeach78]

Yes I am finding comfort in the words of encouragment and knowledge within these pages.

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[LisaT]

..I'm still not sure what to do about vaccines. It sounds like doctors give conflicting advice.

[windchime]

Shawn have you been to the vasculitus web site to see if there are any docs within traveling distance to you? Vasculitis Foundation (http://m.vasculitisfoundation.org/?width=1280) They also consult so if your local doc is willing you could possibly make that happen.

[sbeach78]

Went to the website very helpful, found out my new rheumatism Guy has a lot of experience in vascular diseases...makes me feel a little better.

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[LisaT]

That's great news. It seems the real key to fighting Wegs is having the right medical team in addition to learning as much as we can and taking charge of our care.

[sbeach78]

Yeah I am working on the whole taking charge thing..I fear having to many chiefs if you know what I mean.

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[LisaT]

Yeah I am working on the whole taking charge thing..I fear having to many chiefs if you know what I mean.

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I'm still working on it too. I know exactly what u mean.

[mishb]

Taking control is a good thing Shawn.
Don't forget to always ask for copies of your tests and doctors reports, and make a folder with them.
This helps when you may be interstate and have to visit a different ER. My doctor advised to always take your folder with you if you go away. It is very helpful.
Or, if you need to apply for disability payments.

In regards to the flu vaccination, the ultimate choice is yours. No-one knows from one individual to the next as to what may or may not happen if you do, or even if you don't get it. As everyone has said, just make sure it is not a 'live' vaccine.

Personally, I have never received it. My rheumy's advice to me was - why would you want to put any more chemicals into your body than what you are already putting in........and I agree. We just have so much going on at the moment internally, that I didn't want more.

[sbeach78]

Thank you mishb, I have been having a problem getting my records, having a folder is a good idea.

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[BarbW]

I always get my flu shot...and never have had the flu.

[windchime]

Thank you mishb, I have been having a problem getting my records, having a folder is a good idea.

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Why are you having problems getting your records?

[sbeach78]

It's mostly OU Med. They have buried my records in red tape its been a month and my primary just now received my records Friday.

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[marta]

I think I have a different opinion from most on here. Mostly because I am certain, as are my doctors, that my onset of Wegener's was caused by the H1N1 Chicken Little Global Reaction. I know this gets a lot of bristles up on here and in some medical communities, but if you carefully look at the info sheet for H1N1 deep, deep inside the possible negative side effects lies 'Vasculitis'. I know the chances are slim, but they're there, and guess what, I got Vasculitis - Wegener's right after getting the shot (against my better judgement.) It took a while to connect the dots, but they're there and they're obvious in my case. It happened twice for me. Once at onset and the second time when I listened to my previous doc after diagnosis and starting treatment to get a flu shot to protect me while on immune-suppressants. Two days after the shot I got symptoms, and week after the shot I was in hospital with a full blown flare once again fighting for life. Also the H1N1 vaccine used during this pandemic was the same one used (with only minor modifications) in the 1976 Swine flu outbreak and taken off the shelves within two weeks of a mass inoculation because of way too many cases of Guillain-Barre syndrome, an autoimmune disease that can kill within weeks if left untreated. Autoimmune is autoimmune, same etiology, different locations of the attack. Once you have one autoimmune disease, you're prone to more, and why risk it? I'm personally not getting any more vaccines. Ever. There's so much evidence that the flu vaccine doesn't actually make any statistical difference in flu numbers. I think it's a big cash grab (that is now a twice a year financial infusion for the pharmaceutical companies) with little regard for the humans it actually affects negatively.

I wrote a little rant on this in my blog in 2011: Weggies Unite: Oh how things can change (http://weggiesunite.blogspot.ca/2011/07/oh-how-things-can-change.html) if anyone wants to see further why I'm so against useless vaccines. I get the old faithful ones, and have gotten them myself and for my daughter (MMR, Chicken pox, etc.) but the new ones without any long term side effect studies, or ones we know have worked out badly in the past... that to me is just another example of greed and good work by the lowest of the low in our society - the pharmaceutical company PR and marketing 'people' (I use the term loosely.)

[pberggren1]

I am with Marta on this one as I am sure many of you are. I am not convinced the flu shot actually prevents outbreaks of that particular flu. Like Marta, I have studied this a lot and have not found data to suggest it does. There does not seem to be sound science behind this. My current doc was upset last fall I didn't get the flu shot. I tried to argue with her that it is not a sound science but she got a bit defensive I think because she started talking about conspiracy theories that vaccines cause autism and stuff like that. I had the flu shot in 2004 and only got a bit weak right after the shot but was fine afterwards, as far as I know.

When I got the cochlear implants it was mandatory that I get the flu shot again along with the Menactra and Pneumococcal 23 in 2011. A couple hours later that same day my mouth started to get really dry and the next day my whole nasopharynx was really dry. And since then it has always been really dry. My old doc agreed that one or a combo of those vaccines could easily have caused this dryness to come on like this. He also believed in Marta's case that her Wegs was brought on by the flu shot/H1N1 shot.

My current doc and my ID doc think that Marta's case of this is just a fluke. Again, I don't agree. How could she respond to both of these so quickly? There just does not seem to be any other explanation.

We know vaccines like this will always be debated and looked badly upon. Of course some vaccines are needed like Rabies and tetanus and the like. But the flu shot ones will always be case of bad science if you ask me.

Marta, what other vaccines have you and Hana got in recent years and in past years? Does Brian get any?

[mishb]

A young child in Australia has just received an undisclosed payout of over ten million dollars for her care, after being rendered totally disabled due to the flu injection.
A fight has been going through the courts for the last 3 years. She received this injection when she was about 9 months old (from memory) because the rest of her family was getting it.
A law was also passed after this, that no child under the age of 5 can receive the flu injection.

This in itself is enough for me to say - No Thanks

[LisaT]

Lots to think about here. Marta, I had no idea your Wegs was caused by vaccines. That's awful. Have you ever considered legal action?

[marta]

Lisa, no legal action against Pharmaceutical companies when it comes to vaccines. They are protected by government when it comes to vaccines. That's why so many countries (other than Canada and Russia in the G8) protect people against negative side effects and take care of them if they are the few that will get zinged. Everyone knows there's collateral damage, it's just that our government and Russia, refuse to consider the price that a few have to pay for the greater good and herd immunity. It's a terrible system. Hard to keep yourself from going all 'conspiracy theory.' :wink1:

Phil, since I got sick none of us have gotten vaccines. Before getting sick we all had all the ones we needed, but none of us had ever gotten the flu shot before. I've always believed that the flu shot is a completely useless thing. We, as the human race have been able to deal with flus and colds. Suddenly we are told that we are doomed if we don't get one. The amount of money spent by Health Canada convincing the population to go out and get jabbed blows my mind. I've been saying "if they spent as much money promoting healthy habits to avoid the flue - stay at home when sick, wash hands regularly, don't touch your face.... etc. it would be way more effective than inoculating the entire population twice a year, every year."

I get a little too passionate about this. It is the one thing about getting sick that focuses my energy on the negative, so I try and avoid it because I'd rather focus on the positive... hence all the other WG, Vasculitis, Autoimmune Disease stuff I keep my brain occupied with. I need to have a bigger voice to make a change in this area, and there are too many people who will fight against this thinking as if they're fighting for life. I saw a doc the other day for a different thing, and we started talking (he's a resident) and he was totally challenging me. I found it hard to have the conversation because our time was limited so I couldn't explain why I feel so strongly about this. He managed to make me feel small and stupid for thinking this and I will probably not see him again... :flapper:

Take care you all, and don't follow the herd for the sake of herd immunity. Make smart, informed decisions because you are now not the same part of the herd you were before diagnosis. Yes the chances are small, but so is getting Wegener's, and we all won that lottery.

[pberggren1]

Unfortunately Marta this conspiracy is not a theory. It is fact And against a fact there is no argument.

I ran into a doc similar to the resident you ran into. She also kinda ruined my day. She was very adamant that I should get the flu shot. She said I was putting so many others at risk by not getting it. I still cannot understand how I am putting others at risk by not getting it. My train of thought was so off course that by the time my main doc came in to see me I was a bit flustered and didn't get to talk about everything in my notes. I know you are like me and come with your notebook when you see your doc in Edmonton or any doc for that matter.

I am glad I won the Wegs lottery. You are all a great bunch and such a tremendous blessing.

[marta]

I went out to get some groceries last night and heard this on the CBC. It made me cry. I sat in my car and cried.

Here it is in case you need a little extra fuel to dislike the way Pharmaceutical companies and governments operate when it comes to vaccines.
Audio | As It Happens with Carol Off and Jeff Douglas | CBC Radio (http://www.cbc.ca/asithappens/popupaudio.html?clipIds=2463720061,2463721003,2463 721007)

[pberggren1]

Such a horrid story. This goes on all over the world unfortunately.

[Hopeful]

OMG! I had the flu shot in April and have been suffering with intermittently flu symptoms ever since - fatigue, headache, painful joints. Don't know whether the current (southern hemisphere) vaccine is live or dead. I talked to my GP and she told me that the northern hemisphere had a weaker form of the vaccine and there were a lot of deaths from the flu. The vaccine was apparently made stronger for the southern hemisphere as a result.
As I said, I've been having flu symptoms ever since and was put on antibiotics. They no longer work on the symptoms now. I've had pain in my hand & wrist for the past few days. Stupid me - I thought it was tendonitis. Today I have a headache, pain in my ear, in my ear cartilage, and in my mastoid so it FINALLY dawned on me that I'm having a flare! My Immunologist only works on Wednesdays (locally) so I'm going to get a call in to him and nip this in the bud. He wants me to do a drug trial (Australia is behind the U.S. in respect of drug appovals) but trials involve an awful lot of time and making one's self available at least once a week to begin with. I also prefer not to do ctx again (it was stuffed up before). My ANCA has never gone below 24 and normally hangs around 38-40. Anyone have something similar happen? Anyone out there ever get WG in their ear cartilage? Just feeling a bit overwhelmed at the moment.

[Alysia]

Anyone out there ever get WG in their ear cartilage? .
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3985-cartilage-outer-ear.html

[mishb]

OMG! I had the flu shot in April and have been suffering with intermittently flu symptoms ever since - fatigue, headache, painful joints. Don't know whether the current (southern hemisphere) vaccine is live or dead .

My rheumy advised that our flu vaccine is not live.
She still recommended that I should not have it, not because of the vaccine itself but because she questioned why I would want to put any more chemicals and stress on and in my body, than I already have.

Hey Hopeful, what part of our great land of Oz do you come from.
If you are on facebook, you should check out of Group full of Aussies and Kiwi's.

I hope your immunologist can see you straight away and get these symptoms sorted out.

[marta]

OMG! I had the flu shot in April and have been suffering with intermittently flu symptoms ever since - fatigue, headache, painful joints. Don't know whether the current (southern hemisphere) vaccine is live or dead. I talked to my GP and she told me that the northern hemisphere had a weaker form of the vaccine and there were a lot of deaths from the flu. The vaccine was apparently made stronger for the southern hemisphere as a result.
As I said, I've been having flu symptoms ever since and was put on antibiotics. They no longer work on the symptoms now. I've had pain in my hand & wrist for the past few days. Stupid me - I thought it was tendonitis. Today I have a headache, pain in my ear, in my ear cartilage, and in my mastoid so it FINALLY dawned on me that I'm having a flare! My Immunologist only works on Wednesdays (locally) so I'm going to get a call in to him and nip this in the bud. He wants me to do a drug trial (Australia is behind the U.S. in respect of drug appovals) but trials involve an awful lot of time and making one's self available at least once a week to begin with. I also prefer not to do ctx again (it was stuffed up before). My ANCA has never gone below 24 and normally hangs around 38-40. Anyone have something similar happen? Anyone out there ever get WG in their ear cartilage? Just feeling a bit overwhelmed at the moment.

Oh man, I'm so sorry to hear this.

It is almost identical to what happened to me after getting my last flu shot (in 2010) which indeed did set off a flare.
My first symptoms (first go around) started with my ears, and the pain, inside, outside and all around was insane. If antibiotics don't work, then you're definitely having a flare with that combination of symptoms and nipping it in the bud is the best thing you can do. To give it a good sucker punch my doc at the time put me on Solumedrol 1000mg for three days. This is kinda crazy because it's the equivalent of about 1500mg of pred. You get zapped, and your immune system gets zapped. Physically you feel the effects of it for a while, and then there's the decision of which chemo/biologic to use. It was at this point in my journey that my old doc and I parted ways. He kept me on CTX indefinitely. I was on it for 11 months in total - yuck. He totally dropped the ball on me as a patient and my case.
I found a new doc, the best doc ever in my eyes. She put me on RTX, and it totally did the trick.
I had my RTX 3 months after the flare onset which was 2 days after getting the flu shot (it took me about a week to end up in hospital.)

I believe what makes us more vulnerable to a flare from a flu shot once we are on treatment is the fact that the whole idea behind vaccines is to incite an immune response. It is this mechanism that has gone awry in our systems, and we treat it suppressing the immune response. I think this is what sets off a flare for some. We all have the same disease but get affected by it differently. We all have similar drugs but respond to them differently.... that's why treating this disease is such an art along with the science. I know I'm one of the people whose immune systems don't know when to settle down after an immune response provocation like a flu shot. So I stay away from them. A totally personal choice based on my own experience, but I hope that by sharing mine I can help someone avoid the whole thing altogether.

The flu shot is not a live vaccine, I think the only live vaccine around that would be a common one is the chicken pox vaccine - so absolutely stay away from that one if you're on treatment. As for the others, I think take what the promotional material says with a grain of salt.

I hope you and your doc can figure something out quick. The longer it (WG) takes hold, the harder it is to kick its butt. Which,of course, you'll do. Start kicking as soon as possible though, so you can crush it quicker and enjoy a good winter/summer feeling better.

Sending you light and strength. This too shall pass. :hug1:

[Hopeful]

I'm from Canberra. Thanks to everyone for the warm thoughts. Called my immunologist and heard back from him within the hour. Did my bloods this morning (late for work - boss angry), upped the pred, and doc wants me to do another 3 pulses of ctx. I had 6 pulses when initially diagnosed and really couldn't stand it. I'm thinking about asking if I can do rtx instead.
This is the first time I ever had a problem with the flu shot. I work with the public and was taking them every other year until I got WG/GPA in 2008. Since then I've had them every year. I think it was the combination of vaccines. From what I read on the NIH website it combined the worst of the California and Texas flu plus avian flu. A real whammy! The upside is that my husband is treating me extra special as a result! :thumbsup:

[mishb]

We have a couple of people from Canberra in our facebook Group, I think

If you are interested, the link is below
https://www.facebook.com/groups/516643745050360/

[Beverly]

Hi Hopeful....I have had swollen cartilage, both ears purple/red :w00t:, very painful :crying:. It was also very noticeable since I had short hair. I believe they upped my pred, don't remember how much.
It was a flare, but not from flu shot. Haven't had one of those in many years.
Glad that you are receiving some extra special treatment from hubby :thumbsup:! Never can get too much of that!!

[Bing505z]

Read this article (I didn't look to see if this has been posted before, if it has my apologies):

Vaccination and Renal Patients: A critical examination of assumed safety and effectiveness | International Medical Council on Vaccination (http://www.vaccinationcouncil.org/2011/10/04/suzanne-humphries-md-medical-doctor-vaccination-risks-renal-patients-kidneys/)


I'm sending this to my Doc to get some feedback. You can't sue vaccine makers, but you can file a claim with the Vaccine Injury Compensation Program:

Frequently Asked Questions About Vaccines (http://www.nvic.org/faqs/vaccine-injury-compensation.aspx)

This got my attention:

"The VICP will offer to pay up to $250,000 for a vaccine associated death.
The VICP will offer to pay for all past and future unreimbursed medical expenses, custodial and nursing home care; and up to $250,000 pain and suffering as well as loss of earned income.
If an individual rejects the award or is denied compensation, a lawsuit may be filed in civil court but with certain restrictions.
Claims must be filed within 24 months of a death and 36 months of an injury."


Bet your behind after I get some positive feedback (if I do) from my Doc, I'm meeting with an attorney to toss this around a little.

[Bing505z]

Glad I read this, it got me looking around and thinking.

[Alysia]

something strange with this thread. it appears again and again at the top with a post which I can't open... :confused1:

[Hopeful]

I got my bloods done and my ANCA did not rise, so the flu shot did not trigger a flare, thank goodness. Unfortunately it did appear to give me the flu. Feeling typically flu-ish for the past 2 months and of course there's nothing to be done except treat the symptoms. Don't think I'll have any more flu shots - at least for a while. :unsure:

[andrew]

I'm from Canberra.

Oooohh!!! Me too - I work here during the week. Who's your immunologist?

[Hopeful]

Oooohh!!! Me too - I work here during the week. Who's your immunologist?

Hi Andrew. I think we have the same one. (?) Paul Gatenby at National Capital Private Hospital. I've done a small display on him and his immunology research here at the science library. I suppose it's really not ethical to do that, but he is an emeritus professor here at the ANU and we certainly need more doctors trained in immunology, since it appears to be an important link in so many diseases.

[pberggren1]

Here is a good video on vaccines.......


https://www.youtube.com/watch?v=GsOSZbGu0Bc#t=160

[Bing505z]

I have an attorney looking into my case right now.

[pberggren1]

In my province that have legislated a new law, just like in many other states and countries, that if a health care worker does get the flu shot then they have to wear a mask. Talk about bullying and communism from the Masonic powers. Soon it will be forced on us as well.

[Alysia]

In my province that have legislated a new law, just like in many other states and countries, that if a health care worker does get the flu shot then they have to wear a mask. Talk about bullying and communism from the Masonic powers. Soon it will be forced on us as well.
too bad :thumbdn:

[Debbie C]

Well its that time of year again. Is everyone going to get a flu shot ? I am going to take me and my mother for one on our next pcp visit in a couple of weeks.

[Pete]

Already got mine.

[mrtmeo]

My mom ended up with MPA right after having a flu shot.

All vaccines have deadly chemicals and misfolded proteins in them and there is no clear effectiveness of them.
Mercury is the 2nd most toxic chemical next to plutonium and this is in vaccines to block our immune system.
Effectiveness of Flu Vaccine Raises More Red Flags (http://www.nvic.org/NVIC-Vaccine-News/March-2013/effectiveness-of-flu-vaccine-raises-more-red-flags.aspx)

Vitamin D has been proven effective in preventing flu, colds, TB, etc.
The optimum D levels are 60-80 ng/mL.

Listen the former head of Merck Pharmaceutical, Maurice Hileman explain vaccines
https://www.youtube.com/watch?v=s9stp97GE1k

[gilders]

Already got mine too. Never had much of a reaction to it, but this one has left quite a swelling. It's painful to press/touch it, but doesn't hurt if left alone.

[annekat]

My doc brought it up last week. He thinks I should get one. I will most likely hang back. I do appreciate hearing both the positive and negative about it, in case I should be ready to make a decision either way. So far in my life I've gotten by just fine without one and there have been compelling arguments against it on this site. Then there are the sensible people like Pete who go ahead and get one and have no problem. I will wait to hear more of what people have to say.

[Rose]

I have had the flu vaccine annually since 2009. I also had my second pneumonia vaccine this year, the first also in 2009. I have had no side effects. As far as effectiveness goes i have had a few minor cold and 2 bouts of flu during this time the last one being about a month or so ago. It took me well over 2 weeks to recover. I did run a temperature for about 12 hours and developed a bad productive cough which took well over a week to improve. Managed to keep away from the GP's office as I did no want antibiotics and the fact the elevation in temp only lasted half a day gave me the confidence to do this. Always a worry when immune suppressed. Maybe it would have been worse without the vaccine...who knows??

Rose

[marta]

At my last rheumy appointment (last week) I just saw the best sign regarding the flu that I've ever seen. It was plastered all over the walls, elevators in a huge building that has a whole lot of immune compromised people.

On the poster was a hand with various colours on it, each colour representing something you've touched along the way that is carrying some sort of germ. "Your hands are dangerous weapons" It was a quote from the CDC saying that washing hands and not touching your face are the NUMBER ONE way to prevent flu transmission. Now that is honest, without anyone pushing the agenda that will make a bunch of money on the campaign. I've known this for a long time, and have been practicing it without the aid of a flu shot. I just had my first nasty flu in a very long time (years) and that's probably because after my rheumy appointment I was hanging out at ICU in the University of Alberta Hospital, to see a buddy who is in a coma after a motorcycle accident. I spent most of the day hanging out at the hospital, so I'm sure I picked up whatever it was while there. I digress - as usual.

My point is that we see the 'flu shot campaign' come around twice a year because it has become a cash cow for the pharmaceutical companies. They have health boards pushing it, and as I've said before Big Pharma is exempt from law suits on vaccines, so this is a no brainer. There is very little proof that flu shots actually work, and because they can't be held accountable for the damage they cause, there is also very little proof of the actual damage they cause.

Iatrogenic disease or death. It's been a lot on my mind lately. We all know one person who was a casualty, and I also have another distant relative (by marriage) who, as I write, is on a steady demise after a nurse's mistake. Doctors aren't giving him much hope.

Iatrogenic disease or death is defined as caused or initiated by the medical or pharmaceutical profession. So the stat that I just saw was that well over 200,000 Americans die each year from iatrogenic disease. 200,000. If we were to compare that to airplane crashes, that would mean a jumbo jet crashing every day, all year (many days two crashing in a day) and killing everyone on board. Do you think the Airline Industry would survive very long if that actually happened? Well why is nobody holding the Health Industry and moreso the pharmaceutical industry accountable? I am only on here, with Wegener's, because I believed in our system when they told me that I was safe getting the H1N1 vaccine. I didn't know that Vasculitis was actually a KNOWN negative side effect, however small the possibility. I was told I am signing with informed consent when I got the H1N1 flu shot, well I wasn't informed, how many others get this completely uninformed... following like the sheep they love us to be, hearing the bells of a cash register as each sheep dutifully gets jabbed.

Just my opinion, based on my experience and subsequent research as related to my set of personal events. I do not judge, I just try and help others from going down the gross road I've gone down now that I know the mistakes that have taken me down that road.

[marta]

Listen the former head of Merck Pharmaceutical, Maurice Hileman explain vaccines
https://www.youtube.com/watch?v=s9stp97GE1k

Absolutely shocking the lightness with which this is discussed.
We are all just lab mice as far as Mr's. and Ms's. Monneybags from PHarma Land are concerned.

[BarbW]

Goodness gracious! Know your history! The flu of 1918-19 was one of the world's
worst natural disasters. Its death toll was worse than WWI. It worked on immune systems
such that they were hyperactive. Those with the strongest immune systems were most prone to die.
Are you willing to see 5% of the world’s population die?

[Debbie C]

Well great ya'll . I don't know rather to get it now or not. I got both the flu and pneumonia shot last year and never got sick and there is so much going around this year. Especially that virus that is making alot of kids sick. I'm still thinking on doing it.:confused1:

[drz]

I always check with my doctors and so far they all recommend I get it. So most likely I will get it at one of my next doctor appointments. They do all agree though it most likely won't be very effective given my age and poor immune system from Wegs and diabetes, but they also say that any help reducing the risk of flu is worth taking since for the same reasons it may be ineffective is also why the flu would be very dangerous for me if I get it. So if I can reduce the risk of getting it 10% it worth taking since my chances of dying from the flu may be greater than that without it. If I had had any serious reaction to the flu shots they would advise me against getting the shot anymore. Until that happens my doctors figure the risk of a serious adverse reaction is less than my risk of dying from the flu.

[Dirty Don]

I've been told since my dx and the drug protocols that with so many drugs in me, why take it...I'm protected just like anyone else. But, now I am off pred and weaning off mtx, so maybe I should get one now. Haven't had any probs not getting one...docs kept me away from the live virii - it's all they warned against. I have had no problems w/flu or anything else since my dx and no shots, and I'm out in public all the time.

[annekat]

My doc also said that it wouldn't be all that effective, but why not get at least some protection, given what is going on in my lungs. I asked if if anything was really going on in my lungs. He said there is scarring in there. But I don't feel there has been anything going on in my lungs for a long time, and I think they are in pretty good shape. I figure, if it isn't that effective in people on immunosuppressants, why bother? I guess I'm still on the fence but leaning toward not getting it. And knowing me, that means I won't get it. I'm very good about the hand washing, using hand sanitizer, and all that. I think about it with just about every move I make. I do understand, Don, why you'd consider it now that you are off pred and weaning off the MTX. Congrats on that, BTW.

[cjhnsn29]

Sbeach78 to answer your question about getting the flu shot. My WG Dr said I should every year due to my immune system being so low. I had it last year and no problem. I recieved my flu shot last week. He told me it was important. I hope that helps.:)
CJ

[Debbie C]

Yeh ,congrats Don on getting off the pred amd weamimg off the mtx,thats great news. I am leaning on gettting it, since I am only on pred. my system I don't think is surpressed like others on different drugs. But I have a week to think about it.

[BarbW]

I got my shot today....no issues at all. I would hate to get the flu with my repressed immune system.

[mrtmeo]

What Whistleblowers Tell Us About Vaccine Safety & Effectiveness (http://articles.mercola.com/sites/articles/archive/2014/10/07/mmr-vaccine-safety.aspx?e_cid=20141007Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20141007Z1&et_cid=DM57551&et_rid=683993734)

[marta]

What Whistleblowers Tell Us About Vaccine Safety & Effectiveness (http://articles.mercola.com/sites/articles/archive/2014/10/07/mmr-vaccine-safety.aspx?e_cid=20141007Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20141007Z1&et_cid=DM57551&et_rid=683993734)

Wow! Another great article. Wonder if the same indemnity clause is crushable in Canada if this lawsuit proves that they were negligent.

Everyone seemed so shocked when the tobacco companies were outed for falsifying data and lying to the public, but they used their model from the sugar companies. Which are also going to go the same route eventually, so why wouldn't pharmaceutical companies do the same thing with their cash cows. There is big business in disease, but a regular, bi-yearly cash infusion from the 'fear of disease' that is so propagated by the pharmaceutical companies themselves in vaccines, seems like something to be protected as vehemently as possible. Especially if you can't get sued for the negative side effects your product has on countless lives.

As much as I love doctors and the fact that they've saved my life, they are still people who worry about job security and feeding their families, so of course they're not going to veer too far from the party line. Every doc of mine is convinced that I got WG from the H1N1 vaccine and that since then vaccines are no good for me. They tell me this in the privacy of their offices, but I wouldn't dream of putting them on the spot and asking them to vouch for this publicly. I know they'd have a hard time with that.

As I mentioned before Vasculitis is on the list (that nobody shows you) of potential adverse side effects for the H1N1 vaccine, a vaccine that was put out in the 70's (with almost identical formulation) and was taken out of commission within weeks because it set of Gullian Barre's Syndrome in way too many people - a life threatening autoimmune disease that if left unchecked, can kill in weeks.

I think everyone needs to do what makes them comfortable, but I also think that blindly following your doctor's advice, without doing any research, is a dangerous road to be on. Once we are on the other side of this disease (past the flare stage) we have to heal not only from the disease but also from the drugs that we are on. This is a huge task, on both counts, so I think adding anything to the mix that might make this recovery harder is just self defeating.

The number one way to keep germs away is to wash your hands and not touch your face holes. This notion is supported by the CDC. It's simple. It's free, but I guess for many people in our 'make it as easy as possible for me' society, getting a jab is easier in the short run, but for me, that one jab changed my life forever. FOR EVER!!!! And there is no going back. The long run sucks for me because of an unwise choice for a short term, easy solution.

I was so pleased to see that poster in the elevator of my doctor's office. The one promoting hand washing instead of the usual poster I see this time of year promoting the flu shot. I hope we're getting smarter because of our communal mistakes, it sure felt that way when I took a ride up the elevator to my doctor's office.

[gilders]

Being in the UK and getting my flu shot via NHS I can not see how in this instance flu shots are purely "cash cows" for pharmaceutical companies.
The NHS can't afford to waste money on thousands of vaccines to give to high risk patients if they don't actually work.
It's only fairly recently that the NHS will allow patients to receive Rituximab due to the high cost.

Now I could come up with a conspiracy theory that the pharmaceutical company gives the NHS a certain amount of vaccines for free and pays them to administer them with the whole aim of tricking the UK (well the people not entitled to a free jab) into thinking "they must be beneficial as the NHS uses them" with the long term hope of selling the vaccines via pharmacies.
But I think that is a bit far fetched!

[Bing505z]

Wow! Another great article. Wonder if the same indemnity clause is crushable in Canada if this lawsuit proves that they were negligent.

Everyone seemed so shocked when the tobacco companies were outed for falsifying data and lying to the public, but they used their model from the sugar companies. Which are also going to go the same route eventually, so why wouldn't pharmaceutical companies do the same thing with their cash cows. There is big business in disease, but a regular, bi-yearly cash infusion from the 'fear of disease' that is so propagated by the pharmaceutical companies themselves in vaccines, seems like something to be protected as vehemently as possible. Especially if you can't get sued for the negative side effects your product has on countless lives.

As much as I love doctors and the fact that they've saved my life, they are still people who worry about job security and feeding their families, so of course they're not going to veer too far from the party line. Every doc of mine is convinced that I got WG from the H1N1 vaccine and that since then vaccines are no good for me. They tell me this in the privacy of their offices, but I wouldn't dream of putting them on the spot and asking them to vouch for this publicly. I know they'd have a hard time with that.

As I mentioned before Vasculitis is on the list (that nobody shows you) of potential adverse side effects for the H1N1 vaccine, a vaccine that was put out in the 70's (with almost identical formulation) and was taken out of commission within weeks because it set of Gullian Barre's Syndrome in way too many people - a life threatening autoimmune disease that if left unchecked, can kill in weeks.

I think everyone needs to do what makes them comfortable, but I also think that blindly following your doctor's advice, without doing any research, is a dangerous road to be on. Once we are on the other side of this disease (past the flare stage) we have to heal not only from the disease but also from the drugs that we are on. This is a huge task, on both counts, so I think adding anything to the mix that might make this recovery harder is just self defeating.

The number one way to keep germs away is to wash your hands and not touch your face holes. This notion is supported by the CDC. It's simple. It's free, but I guess for many people in our 'make it as easy as possible for me' society, getting a jab is easier in the short run, but for me, that one jab changed my life forever. FOR EVER!!!! And there is no going back. The long run sucks for me because of an unwise choice for a short term, easy solution.

I was so pleased to see that poster in the elevator of my doctor's office. The one promoting hand washing instead of the usual poster I see this time of year promoting the flu shot. I hope we're getting smarter because of our communal mistakes, it sure felt that way when I took a ride up the elevator to my doctor's office.


Not just H1N1, regular Flu shot as well. Google Fluzone insert, or any other brand insert, and you will see Vasculitis and Immune systems disorders. If you have kidney problems/involvement, DO NOT GET A FLU SHOT.

"Vaccines are designed to create a state of inflammation, and raise LDL and CRP levels.[5] Why then would we give a vaccine to a patient who already has an inflammatory kidney or heart event?" - See more at: Vaccination and Renal Patients: A critical examination of assumed safety and effectiveness | International Medical Council on Vaccination (http://www.vaccinationcouncil.org/2011/10/04/suzanne-humphries-md-medical-doctor-vaccination-risks-renal-patients-kidneys/#sthash.twkyy3LV.dpuf)


"Some of the causes of kidney disease are autoimmune, vasculitic (inflammation of blood vessels), and granulomatous (described below). There are many conditions labeled as “idiopathic”(cause unknown) in nephrology and many are inflammatory in nature. When will doctors make the connection between vaccination and these adverse events?" - See more at: Vaccination and Renal Patients: A critical examination of assumed safety and effectiveness | International Medical Council on Vaccination (http://www.vaccinationcouncil.org/2011/10/04/suzanne-humphries-md-medical-doctor-vaccination-risks-renal-patients-kidneys/#sthash.twkyy3LV.dpuf)

[Sangye]

Goodness gracious! Know your history! The flu of 1918-19 was one of the world's
worst natural disasters. Its death toll was worse than WWI. It worked on immune systems
such that they were hyperactive. Those with the strongest immune systems were most prone to die.
Are you willing to see 5% of the world’s population die?
The world was engaged in (and recovering from) WWI at the time, with massive populations having been suffering from malnutrition, extraordinary stress, insufficient heating, etc... for several years by the time the flu outbreak began.

[Sangye]

Often people assume that adverse effects from a vaccine will be evident immediately and that if they don't experience this they must be in the clear. While vaccines certainly can cause severe adverse effects immediately, some of the worst damage from vaccines is caused over time as the toxins and other adjuvants gradually affect the body. This is why it's not always easy to establish a causal relationship between a vaccine and an adverse effect. It's also the reason why most medical doctors only consider the first 24 hours after a vaccine.

One ax hit to a tree might not kill the tree, but it impairs the tree's health in ways that might not be obvious. And if you keep hitting it....

[BarbW]

The world was engaged in (and recovering from) WWI at the time, with massive populations having been suffering from malnutrition, extraordinary stress, insufficient heating, etc... for several years by the time the flu outbreak began.

This flu, however, did not attack the weak and malnourished. This flu killed the strongest. This flu worked best on those with strong immune systems---at least in the second wave. It also devastated people/areas NOT impacted by the war.

[Sangye]

There were 2 waves of infection. The first was like a typical flu, in that it killed mostly the youngest and the oldest. Then the flu virus mutated and the second wave began, which killed mostly people age 20-40. Even if flu vaccines worked, they wouldn't have protected you in either wave, since they use the 3 most prevalent strains of the previous year.

As far as that flu killing those with the "strongest" immune systems, no. In holistic medicine we acknowledge that an "overactive" immune system is actually a compromised one that has become dysfunctional and is reacting erratically. For example, medical doctors treat allergies by suppressing the immune system with drugs like Claritin. That makes the symptoms go away but over time the patient's allergies get worse and they develop new ones. They might also develop more serious conditions like autoimmune diseases. The holistic treatment for allergies is the opposite: we balance the immune system and allergies resolve or at least improve significantly. Same with autoimmune diseases. So with the 1918 flu we saw those with "overreactive" immune systems affected during the second wave. Yup-- soldiers and those affected by war or its fallout.

Nature will always produce particularly virulent strains of viruses and other infectious agents. Loading the body with chemicals, known carcinogens, known neurotoxins, genetic material from other species, etc.... will never make us healthy and able to conquer them.

[mrtmeo]

important info regarding live vaccines, especially for the immune suppressed.
Once innoculated, the person becomes a carrier.
Can People Receiving Live Virus Vaccines Transmit Vaccine Strain Virus to Others (http://articles.mercola.com/sites/articles/archive/2014/11/09/ebola-vaccine-downside.aspx?e_cid=20141109Z1_SNL_art_1&utm_source=snl&utm_medium=email&utm_content=art1&utm_campaign=20141109Z1&et_cid=DM60066&et_rid=721772671)

[Debbie C]

Why is it whenever I go to the Cleveland Clinic the rhuemy stresses upon the inportance of getting the flu shot. He knows about wg and the inflamation and all the other issues that come with it. Why do they want us ( and the elderly ) to have it so bad. I had mine ,so this conversation is to late for me this year but I will definately have second thoughts about it next year.

[annekat]

I think it's been stressed on here that if we get the flu shot, we shouldn't get the live vaccine, but rather the one that isn't "live". My doc tells me to get it, and when I ask him, he says the one I'd get at pharmacies or whatever wouldn't be the "live" one. Still, I would ask just to make sure. And as it stands, I have never gotten any flu shot and may never get one, at least not without talking to some other docs who might convince me otherwise. I have gotten plenty of negative info on the shot here on the forum, regardless of whether it's "live" or not. Without more positive info or reassurance that there's no danger, I probably won't get it. I've done fine without it and don't like the stories I've heard of negative reactions.

[miracleshappen08]

I don't get any of the vaccines! I stay away from them. One I hate shots lol, but I just don't take a chance. My internal medicine doc said that that is fine. But I also try to limit being out durning the winter when stuff is the worse. And if I go somewhere with a lot of people I wear a mask.

[RudiK]

I was told by all my docs to get the flu shot, just don't get the nasal spray type since it consist of live bacteria which is a no-no for us.

[MaxD]

Why is it whenever I go to the Cleveland Clinic the rhuemy stresses upon the inportance of getting the flu shot. He knows about wg and the inflamation and all the other issues that come with it. Why do they want us ( and the elderly ) to have it so bad. I had mine ,so this conversation is to late for me this year but I will definately have second thoughts about it next year.

Simple. If you don't get the flu shot and are unlucky enough to catch the flu, there is a greater risk of severe complications if you have GPA than if you do not. Ditto if you are elderly and therefore more frail. If you take the flu shot and get the flu, the effects are likely to be less severe and complicated. Unless you strongly believe (and there's NO scientific reason to do so) that the (non-live) vaccine will somehow harm you, why not get the annual shot?

[MaxD]

I don't get any of the vaccines! I stay away from them. One I hate shots lol, but I just don't take a chance. My internal medicine doc said that that is fine. But I also try to limit being out durning the winter when stuff is the worse. And if I go somewhere with a lot of people I wear a mask.

Not even the pneumonia vaccine? It's good for 5 years. Also, a mask isn't enough - you're more likely to "catch" the virus on your hands and then transmit it near your nostril (a person touches his/her face a godawful number of times each day!).

Stay well!

[drz]

Simple. If you don't get the flu shot and are unlucky enough to catch the flu, there is a greater risk of severe complications if you have GPA than if you do not. Ditto if you are elderly and therefore more frail. If you take the flu shot and get the flu, the effects are likely to be less severe and complicated. Unless you strongly believe (and there's NO scientific reason to do so) that the (non-live) vaccine will somehow harm you, why not get the annual shot?

Some people have serious or severe reactions to the vaccinations. If this happens, then you should not get it anymore according to my Weg doctors. Other wise they recommend it for the above reasons. They do concede though that because of my age and suppressed immune system the odds of the vaccine helping me are greatly reduced, but then if I get the flu my odds of dying from complications are likewise greatly increased if I didn't get the vaccination.

[MaxD]

drz: thanks for the clarification. If one has a (possibly life-threatening) allergy to substances in the vaccine (most likely eggs or gelatin) then of course you must stay away from it - whether you have GPA or not. This happens in 1 or 2 people out of a million - and being stuck with GPA doesn't change that. The possibility of complications from the flu is far greater. Btw, the CDC has lots of information anyone can read up to learn more about the risks of flu vaccines: Seasonal Flu Shot | Seasonal Influenza (Flu) | CDC (http://www.cdc.gov/flu/about/qa/flushot.htm)

[drz]

drz: thanks for the clarification. If one has a (possibly life-threatening) allergy to substances in the vaccine (most likely eggs or gelatin) then of course you must stay away from it - whether you have GPA or not. This happens in 1 or 2 people out of a million - and being stuck with GPA doesn't change that. The possibility of complications from the flu is far greater. Btw, the CDC has lots of information anyone can read up to learn more about the risks of flu vaccines: Seasonal Flu Shot | Seasonal Influenza (Flu) | CDC (http://www.cdc.gov/flu/about/qa/flushot.htm)

There is also for us Weggies the concern of something triggering a flare. Infections are thought to some times do this. Any serious illness might also do that for us without being life threatening. Allergies can tend to worsen with exposure so a significant reaction might also be life threatening next time. But I have not had any adverse reactions to my vaccinations for the flu so my doctors see no reasons to for go them. People who have gotten ill from the vaccinations usually opt out of them but most people don't have such a negative reaction. But then most people don't get Wegs either.

[morningsunshine]

Not even the pneumonia vaccine? It's good for 5 years. Also, a mask isn't enough - you're more likely to "catch" the virus on your hands and then transmit it near your nostril (a person touches his/her face a godawful number of times each day!).

Stay well!

To chime in on the flu season mask discussion:

I wear a mask on my daily commute (I live in a city and take public transportation--very crowded!) and I find that, although it's a little embarrassing, it helps in a lot of ways. One of which is what you mention: I can't touch my face during my commute and immediately before I take off my mask, I use hand sanitizer. I figure that being conscious of not touching my nose/mouth helps just as much as any effect the mask might have. And as another unintended side effect: people tend to keep their distance from me with the mask, which also reduces the risk someone will cough or sneeze near me. :rolleyes1:

As for the pneumonia vaccine: my doctor said I'm too immunosupressed to get one now and he doesn't want to risk it.

On his recommendation, I got a flu vaccine this year (for the first time ever) with no side effects.

[mishb]

Hi Sunshine,

I also have the daily public transport commute - over an hour each way.

I use a thick scarf instead of a mask - people don't tend to stare as much. It does work.

The other day a man sneezed on a lady sitting a few seats ahead of me. He didn't cover his mouth and his sneeze carried mucus from his mouth and landed on the side of her face. OMG - she just got a tissue out of her bag and cleaned it up. He kept apologising for about ten minutes.

I was not faced with that situation but all of could think of was, what would I do if it was me :sad:
My daughters (whom I travel with each day) would have got up and knocked the man out - me, I think I would have just cried :crying:
I would have then had a shower when I got home and then I would need counselling for the next ten years :razz:

What would you all do ??

[annekat]

I'd probably do the same thing the woman did. But make sure to use hand sanitizer after using the tissue to clean my face, and put some on my face, too, and around all my facial orifices. The man did not mean to do it but was an idiot for not covering his mouth and nose, and I hope his profuse apology means he learned his lesson.

[me2]

I use hand sanitizer a lot but don't forget that hand sanitizer does not kill all bugs. Washing with soap and water is superior to using sanitizer. Sanitizer is for when we can't use soap and water.

[annekat]

I use hand sanitizer a lot but don't forget that hand sanitizer does not kill all bugs. Washing with soap and water is superior to using sanitizer. Sanitizer is for when we can't use soap and water. I've always heard this but am kinda curious as to how soap would kill bugs. But anyway, after using the hand sanitizer on the bus with the sneezing, coughing guy, I would instinctively wash my hands with soap and hot water at the earliest convenience, for sure.

[morningsunshine]

Hi Sunshine,

I also have the daily public transport commute - over an hour each way.

I use a thick scarf instead of a mask - people don't tend to stare as much. It does work.

The other day a man sneezed on a lady sitting a few seats ahead of me. He didn't cover his mouth and his sneeze carried mucus from his mouth and landed on the side of her face. OMG - she just got a tissue out of her bag and cleaned it up. He kept apologising for about ten minutes.

I was not faced with that situation but all of could think of was, what would I do if it was me :sad:
My daughters (whom I travel with each day) would have got up and knocked the man out - me, I think I would have just cried :crying:
I would have then had a shower when I got home and then I would need counselling for the next ten years :razz:

What would you all do ??

The thick scarf is a great idea!

And wow, that sneezing story sounds traumatic! I have to stop myself from frowning when people around me cough or sneeze...I immediately get worried that I'll catch whatever it is they have. I would try to respond kindly to that situation....and then douse myself in Purell and take a shower as soon as possible!

[Thinker]

Just wanted to post that I got both the flu and pneumonia vaccines one week ago with no ill effects.:smile1: I know people have strong opinions on either side of the fence but just wanted to post my personal experience in case someone is actually still sitting on the fence and unsure what to do.:confused1: I decided to get both because my rheumatologist, kidney doctor, and internal medicine doctor all recommended the flu shot, and my internal medicine doctor also recommended the pneumonia shot and could even show me documentation that it really was recommended for immunosuppressed people as I tend to be skeptical myself. I'm also hoping to avoid any more hospitalizations, so want to decrease my risk of flu or pneumonia.

There are a lot of great suggestions on this thread for infection control, and I just wanted to add a couple:

After you wash your hands in a public restroom, leave the water running and use the paper towel to turn off the water faucet to avoid getting germs on your hands. You can also use it to open the door before throwing it away.
Don't share hand towels with your family members, I have a paper towel holder by my kitchen sink, and Kleenex makes disposable hand towels that are designed to fit over a towel holder that I have in my bathroom.
I carry packets of antibacterial wipes with me and will wipe down the table in a restaurant before I eat, and also shopping carts if sanitizing wipes aren't available in the stores.
I make my kids and myself wash our hands as the first thing we do when we get home after being out somewhere.
I also carry hand sanitizer with me and in my car and use it right after being out in public or with people.

I may sound like a germaphobe,:ohmy:but have worked in healthcare for many years and there are a lot of nasty bugs out there.

Stay well everyone, and let's get through the winter without getting sick!:thumbsup:Or sicker!

[Alias]

All my docs have also recommended the available vaccines: flu, pneumonia, DPT, and shingles. I was directed to wait until I was at 10 mg prednisone to get the Zostavax (shingles) shot. Considering that I have this illness, I think the remote chance of any short or long term effects of vaccines is the least of my worries. Also, I'm pretty much a mainstream medicine kind of guy, and as long as my trusted physicians are recommending vaccinations, I'm going with what they say.

[mrtmeo]

Interesting article.
Harold Ramis, Inflammatory Vasculitis and "Rare" Conditions - AGE OF AUTISM (http://www.ageofautism.com/2014/02/harold-ramis-inflammatory-vasculitis-and-rare-conditions.html)

[Pete]

All my docs have also recommended the available vaccines: flu, pneumonia, DPT, and shingles. I was directed to wait until I was at 10 mg prednisone to get the Zostavax (shingles) shot. Considering that I have this illness, I think the remote chance of any short or long term effects of vaccines is the least of my worries. Also, I'm pretty much a mainstream medicine kind of guy, and as long as my trusted physicians are recommending vaccinations, I'm going with what they say.

You may want to revisit getting the shingles shot with your doc. It's a live virus shot, and those are generally not recommended for immunosuppressed people. Also, the nasal flu shot given to kids and people over 65 is live virus. I get the annual flu shot with no ill effects. Got shingles shot about 4 years before I got sick. I think the pneumonia shot is once every five years, so I've got a couple of years to go before my next one.

[marta]

Interesting article.
Harold Ramis, Inflammatory Vasculitis and "Rare" Conditions - AGE OF AUTISM (http://www.ageofautism.com/2014/02/harold-ramis-inflammatory-vasculitis-and-rare-conditions.html)

Very interesting article. Quite in line with my thinking. Thanks for the share!!!!

One thing that's different in Canada is that we don't have a Vaccine Compensation program. Canada and Russia are the only two countries in the G8 who don't protect the people (and they know there will be a certain percentage who get adverse reactions) who take a hit for herd immunity. That's what vaccines are. They're not designed for individual benefits (that's a byproduct) the whole thing is to create herd immunity, and the ones who don't fare well are collateral damage.

I am collateral damage living in Canada.

[mrtmeo]

Very interesting article. Quite in line with my thinking. Thanks for the share!!!!

One thing that's different in Canada is that we don't have a Vaccine Compensation program. Canada and Russia are the only two countries in the G8 who don't protect the people (and they know there will be a certain percentage who get adverse reactions) who take a hit for herd immunity. That's what vaccines are. They're not designed for individual benefits (that's a byproduct) the whole thing is to create herd immunity, and the ones who don't fare well are collateral damage.

I am collateral damage living in Canada.

IMO, I believe vaccinations are nothing more than population control.
Why would anyone think that injecting Mercury(2nd most toxic substance next to plutonium) and Aluminium with foreign proteins into the blood stream is okay?
We all have the SV40 cancer causing virus thanks to the polio vaccine.

[vdub]

IMO, I believe vaccinations are nothing more than population control.
Why would anyone think that injecting Mercury(2nd most toxic substance next to plutonium) and Aluminium with foreign proteins into the blood stream is okay?
We all have the SV40 cancer causing virus thanks to the polio vaccine.
Lets not go there. This subject is a real hotbed for discussion with strongly held opinions and verges on political.

Lets limit all discussion to posting scientific articles by well-known, reputable institutions and let others draw their own conclusions from reading the material. For the most part, unless one of us has medical training, our opinions one way or the other, are little more than untrained conjecture and just adds confusion to the topic. If we limit discussions to the scientific journals and keep our opinions out of it, it will easier to keep the forum focused on Wegeners. Thank you!

[Alias]

https://www.rheumatology.org/Publications/Hotline/Update_on_Herpes_Zoster_(Shingles)_Vaccine_for_Aut oimmune_Disease_Patients/

I guess I knew there was disagreement/controversy on this subject, some of it bordering on political as Vdub says. I do NOT have a medical degree and I do not ever intend to give medical advice, only to recount my experience, for whatever value it may have to others. My physicians recommended the vaccine, and I followed their advice. For those interested, the above link contains what I think is the latest from the ACR on this subject, and is consistent with what my docs have said. In my case I believe it was recommended and considered "safe" because I was not on biologic therapy, but under consideration for it at some point, and had tapered to relatively low dose prednisone and MTX before getting the shot.



Lets not go there. This subject is a real hotbed for discussion with strongly held opinions and verges on political.



Lets limit all discussion to posting scientific articles by well-known, reputable institutions and let others draw their own conclusions from reading the material. For the most part, unless one of us has medical training, our opinions one way or the other, are little more than untrained conjecture and just adds confusion to the topic. If we limit discussions to the scientific journals and keep our opinions out of it, it will easier to keep the forum focused on Wegeners. Thank you!

[vdub]

When I had my knee surgery a couple years ago, I had to go off mtx. My doc suggested I use the window of opportunity to get a shingles shot, which I did.

Interesting, that just this morning, ABC is reporting this year's flu shot may have missed the mark and not provide as much coverage as usual. That's a bummer, but its all a guessing game when you are having to predict a year into the future when making the vaccine.

[marta]

I'm also not a trained medical doctor, but I have to add one more opinion on this topic, and then I shall cease and desist. I feel compelled to write about it because it's hitting close to home right now. I just wrote about it on my blog, and I can't seem to articulate it the way it lives in my brain, but I'm giving it a go here, and I promise not to get upset if there's a tsunami of disagreement coming my way.

Iatrogenic disease. I first heard the term in a 4th year Medical Anthropology seminar I was attending while at university. For those who haven't heard it, it's the disease and death caused by medical mistakes. This includes, vaccines, drug interactions, mistakes by medical practitioners, or things picked up while in hospitals. As most of us know, Alisia believes that Phil's passing was iatrogenic in cause, and I just buried a friend (who didn't have WG or anything else that was serious) and he passed away on November 9th. I am 100% sure he passed because he was prescribed two meds that shouldn't have been prescribed together and he died of internal bleeding. I, a lay person, went on line to look up the meds on his most recent medical prescription record (filled less than a week before his passing) and I can see all the warnings, and red and yellow symbols telling people not to mix them together, but his doctor filled the script, and the pharmacy gave him the combo. I brought the record back to the pharmacy to ask if this combo of drugs is unusual, and the pharmacist just stared with her mouth open. Didn't say a word.

When you look up stats on Iatrogenic Death, it's absolutely mind boggling. It's more people dying from this one cause than if a 747 jet plane full of people crashed every day of the year and killed everyone on board. Imagine how much money was spent looking for that missing plane over the ocean. But nobody and I mean nobody is trying to help the over hundred thousand people dying each year from medical mistakes.

IMHO, I believe the problem is that healthcare is a profit driven commodity. We have given the reigns over to corporations that have a profit driven agenda, and count off the dead humans as stats and a necessity for us moving forward. Granted many of these people have life threating disease and might have died earlier without medical intervention, but many haven't (like my buddy I spoke of earlier.) I'm not a communist, I lived that life as a kid, and my parents risked life and limb to come to Canada where we can have a real life. I spent time in jail running away from communism, so it's not where I'm going with this, but I think that the wrong guys have the power over our society's healthcare. If we didn't have them making the healthcare decisions, we wouldn't have tons and tons and tons of meds that only mask symptoms, and create other nasty side effects and not a single cure. Polio. That's one that has been cured, but how long are we going to ride those coat tails? We need research using all funding and energy looking for cures instead of symptom maskers, but sadly health is not profitable. That's why this element of our society needs to be taken out of the hands of corporations with different agenda and motives.

This is political, but if we bury our heads in the sand, then nothing will change. We just keep letting these guys get rich off of us, and continue killing people under the guise of helping. I AM angry. I feel helpless. I miss my buddy. He should not be dead right now. We should be going for a ski together. I miss my old life. I miss my strength. I miss going out in the mountains and having enough strength to be out there all day. I miss a lot of things. And for me all of this started with getting a simple, 'safe' H1N1 vaccine (which in the 2009 Canadian batch was full of Squalene.) Hey but they were just trying to make it stronger because that way they could vaccinate more people with less vaccines.

It is political. I feel like I'm sick from political reasons. I'm sick of politics. Because some rich guys wanted to get richer, and my life (along with my family's and friends) happened to be a stepping stone to their final destination. My docs know I have WG from the vaccine. It is written in black and white on the vaccine insert I got it from the health nurse, and also from GSK's website, that Vasculitis is a possible negative reaction to getting the flu shot. So many doctors are useless and will just spout the 'party line' because they are too busy to do the deeper research - this I have learned through my WG journey.

Here's a joke I heard from a doctor - "Q: What do you call the Med School graduate with the lowest marks in the class? A: Doctor"

So I have found that not researching, or only listening to 'trained docs', might not be the best course of action when you have a fairly unknown disease like WG. I have been given so many bum steers in the last 5 years, it's absolutely frightening for people who just trust - like my friend who is now dead. I am alive because I have you guys in my corner and because I don't take everything I hear from the 'professionals' as gospel. I question. I look things up. I make sure my meds don't contradict. I never go for vaccines any more. I try and use the analytical skills I acquired in university to research this whole scene, and I think our problem is that government has dropped the ball and given carte blanche to profit driven corporations to play with the populace health as they see fit.

I'm not telling anyone to do anything. I'm just suggesting that we are in a situation that most docs do NOT understand, and we should research, educate ourselves, and make informed decisions. Go to an ER and find out that most pros there don't give a flying crap that you're immune suppressed and shouldn't be sitting beside the guy who is so sick that he's blowing chunks, and that catching his virus could put you in a life threating situation. They don't get it.

Oh and one last thing. When I spoke with the investigator from the Medical Examiner's office regarding my friend, the reply came back "When you're on meds, it's YOUR responsibility to make sure that everything's right. He was a grown man, he should have understood his medication." So now there's a sentiment that it is all in our hands... whether you're professionally trained or not.

There. I've written a novel.
Now you can crucify me.

Begin.

[mrtmeo]

I'm also not a trained medical doctor, but I have to add one more opinion on this topic, and then I shall cease and desist. I feel compelled to write about it because it's hitting close to home right now. I just wrote about it on my blog, and I can't seem to articulate it the way it lives in my brain, but I'm giving it a go here, and I promise not to get upset if there's a tsunami of disagreement coming my way.

Iatrogenic disease. I first heard the term in a 4th year Medical Anthropology seminar I was attending while at university. For those who haven't heard it, it's the disease and death caused by medical mistakes. This includes, vaccines, drug interactions, mistakes by medical practitioners, or things picked up while in hospitals. As most of us know, Alisia believes that Phil's passing was iatrogenic in cause, and I just buried a friend (who didn't have WG or anything else that was serious) and he passed away on November 9th. I am 100% sure he passed because he was prescribed two meds that shouldn't have been prescribed together and he died of internal bleeding. I, a lay person, went on line to look up the meds on his most recent medical prescription record (filled less than a week before his passing) and I can see all the warnings, and red and yellow symbols telling people not to mix them together, but his doctor filled the script, and the pharmacy gave him the combo. I brought the record back to the pharmacy to ask if this combo of drugs is unusual, and the pharmacist just stared with her mouth open. Didn't say a word.

When you look up stats on Iatrogenic Death, it's absolutely mind boggling. It's more people dying from this one cause than if a 747 jet plane full of people crashed every day of the year and killed everyone on board. Imagine how much money was spent looking for that missing plane over the ocean. But nobody and I mean nobody is trying to help the over hundred thousand people dying each year from medical mistakes.

IMHO, I believe the problem is that healthcare is a profit driven commodity. We have given the reigns over to corporations that have a profit driven agenda, and count off the dead humans as stats and a necessity for us moving forward. Granted many of these people have life threating disease and might have died earlier without medical intervention, but many haven't (like my buddy I spoke of earlier.) I'm not a communist, I lived that life as a kid, and my parents risked life and limb to come to Canada where we can have a real life. I spent time in jail running away from communism, so it's not where I'm going with this, but I think that the wrong guys have the power over our society's healthcare. If we didn't have them making the healthcare decisions, we wouldn't have tons and tons and tons of meds that only mask symptoms, and create other nasty side effects and not a single cure. Polio. That's one that has been cured, but how long are we going to ride those coat tails? We need research using all funding and energy looking for cures instead of symptom maskers, but sadly health is not profitable. That's why this element of our society needs to be taken out of the hands of corporations with different agenda and motives.

This is political, but if we bury our heads in the sand, then nothing will change. We just keep letting these guys get rich off of us, and continue killing people under the guise of helping. I AM angry. I feel helpless. I miss my buddy. He should not be dead right now. We should be going for a ski together. I miss my old life. I miss my strength. I miss going out in the mountains and having enough strength to be out there all day. I miss a lot of things. And for me all of this started with getting a simple, 'safe' H1N1 vaccine (which in the 2009 Canadian batch was full of Squalene.) Hey but they were just trying to make it stronger because that way they could vaccinate more people with less vaccines.

It is political. I feel like I'm sick from political reasons. I'm sick of politics. Because some rich guys wanted to get richer, and my life (along with my family's and friends) happened to be a stepping stone to their final destination. My docs know I have WG from the vaccine. It is written in black and white on the vaccine insert I got it from the health nurse, and also from GSK's website, that Vasculitis is a possible negative reaction to getting the flu shot. So many doctors are useless and will just spout the 'party line' because they are too busy to do the deeper research - this I have learned through my WG journey.

Here's a joke I heard from a doctor - "Q: What do you call the Med School graduate with the lowest marks in the class? A: Doctor"

So I have found that not researching, or only listening to 'trained docs', might not be the best course of action when you have a fairly unknown disease like WG. I have been given so many bum steers in the last 5 years, it's absolutely frightening for people who just trust - like my friend who is now dead. I am alive because I have you guys in my corner and because I don't take everything I hear from the 'professionals' as gospel. I question. I look things up. I make sure my meds don't contradict. I never go for vaccines any more. I try and use the analytical skills I acquired in university to research this whole scene, and I think our problem is that government has dropped the ball and given carte blanche to profit driven corporations to play with the populace health as they see fit.

I'm not telling anyone to do anything. I'm just suggesting that we are in a situation that most docs do NOT understand, and we should research, educate ourselves, and make informed decisions. Go to an ER and find out that most pros there don't give a flying crap that you're immune suppressed and shouldn't be sitting beside the guy who is so sick that he's blowing chunks, and that catching his virus could put you in a life threating situation. They don't get it.

Oh and one last thing. When I spoke with the investigator from the Medical Examiner's office regarding my friend, the reply came back "When you're on meds, it's YOUR responsibility to make sure that everything's right. He was a grown man, he should have understood his medication." So now there's a sentiment that it is all in our hands... whether you're professionally trained or not.

There. I've written a novel.
Now you can crucify me.

Begin.

very well said and remember that drs ONLY practicing and bury their mistakes.
Big Pharma synthesizes drugs off of natural components so that they can be petented.
Isolating a component causes side effects.
Introducing foreign proteins that can misfold and mutate pathogens and when they die other pathogens consume their DNA express endotoxons that cause diseases and damage tissues.
Viruses don't need to eat and can survive hidden in our cells for many decades before coming out when our immune system is way too overloaded.
Now, we have to rely on genetically engineered (man made chemicals) to combat the man made destructive viruses in our bodies from foods and vaccines.

For all those who don't mind taking a chance with vaccines, can do it, but my deep belief is that EVERYONE should get the chance at an INFORMED decision.

[marta]

... but my deep belief is that EVERYONE should get the chance at an INFORMED decision.

100% agree.
I didn't.
Now I know to inform myself.

My buddy Dennis didn't.
... and he never will again.

[Dirty Don]

Got tired of pulling my cross everywhere a long time ago, so how about just a word lashing?! I hope you feel better Marta, you know as well as I do that once a leader is chosen out of the herd that things aren't always going to go the herds' way...leaders like the way they live...thus mistakes of all kinds are made and greed & power are 2 of them. The system is broken, isn't serving entire communities, etc., but it wasn't designed for 8 billion people in mind either...crap happens then we pay for it. Way it is...we all hate it, but we all continue the history...even tho our singular roles in it can be of some significance to those we share our lives with daily. WG/hospital stays are some of those things that are susceptible to such decisions along with their propensity to 'fool' most of us. Best to all of us as it IS our responsibility to change things for the better!!!! Ramble on....

[marta]

Don, love ya bro.

A guy in town told me this the other day, and it brought me out of my slumber.

"Marta, before I met you, I really didn't believe that a single person can make a difference in society. Now I know this to be false, and you've inspired me to do all sorts of things in my own life."

I have been feeling a lot like I'm banging my head against a wall with all my ramblings, but a person took a chance and told me how he felt and exposing a vulnerability .... all while I was shopping for an evening movie. This re-ignited my spark to keep on trucking forward with the lessons this disease has brought to my plate. I'm not going to let this crappy, horrible experience be for nothing. I want to make something out of it, something positive, something life changing... not just for me and my family, but for anyone else who might be willing to engage.

Already together we have changed how doctors see things. Remember the survey I had for a couple of years? The one where we got almost 1,000 Weggies responding. Unprecedented. We will be published in the Journal of Rheumatology because of that. The basis of the article is that patients can generate their own research, we can talk freely to each other, and we can make findings that might not be made in a 1/2 hour doctor visit. We are changing the way the patient's role is perceived in the medical/research side of things. All because of the survey we all did, that I came up with while laying in a hospital bed, hopped up on heavy duty steroids. The article is written (had a post collection ethics review done and approved) and has been submitted to the Journal of Rheumatology. It wasn't sent back to us, and is undergoing peer review as we speak. I'll keep you posted. But what I'm trying to say with this is...

each and everyone of us can make a difference. Sadly making a difference involves standing up and putting yourself on the line against the current thinking, and you do risk being ridiculed, called names, and made to feel small and stupid, but I'm taking that chance, cuz I know we can do it.

[Debbie C]

I totally agree with you Marta, the drs. are too busy with their patients to find the underlying problem but instead just prescribe a med to fix it temporally. I ALWAYS check the web for myself and my mother to see if their is any drug interactions when prescribed a new drug. Just last week I had to take her to the er for diverticulitsis. I have on her med sheet not to give her the antibioatic cypro because it has interactions with a patch she wears. The first thing the er dr prescribed was cypro. I said ,"Did you not read the list I gave you..she can't take that " He lookes surprised and what did he do ..prescribe her a gernertic for it. The pharmacist told me and said if she has a problem stop it. After 1 she did, I called her dr the next day and he also said not to take it. The er dr had her taking 5 antibiotics a day. We gave her 1 and we go see our pcp Tues. Its very scary.
And like vdub said about the flu shot was a waste because it won't cover the strain that is going around ,,,,UGH !!!!!!

[marta]

Just found this paper and this doc on the Autoimmunity Network newsletter. He is actually going to debate this topic (against vaccines) during an Autoimmune Conference in Italy this coming March.

Prof. Shoenfeld has described two new syndromes, one of which is the ASIA syndrome (Autoimmune Syndromes Induced by Adjuvants)

Vaccination and Autoimmunity??vaccinosis?: A Dangerous Liaison? (http://www.sciencedirect.com/science/article/pii/S0896841199903463)

This is totally in line with what I think happened to me. An Adjuvant induced Autoimmune Disease. Squalene to be exact, the lovely adjuvant added to the Canadian batch of the 2009 H1N1 Vaccine.

I'm not a doctor, but Dr. Shoenfeld, seems to have some heavy hitting credentials under his name and he's been working with Autoimmune Disease for decades.

Just food for thought.

Oh yeah, and there is this too: http://m.huffpost.com/ca/entry/5881914

[vdub]

That's a good study from a credible source -- certainly not junk science. Its a 15 year old study, but still good. Israel puts out a lot of good research.

[mrtmeo]

The risks far outweigh any claimed benefit of a vaccine.
I opt to wear a mask

Girl, five, dies from a strain of the flu she was vaccinated against as deadly epidemic continues to sweep across the US
Keira Driscoll dies from flu strain she was vaccinated against | Daily Mail Online (http://www.dailymail.co.uk/news/article-2925709/Girl-five-dies-strain-flu-vaccinated-against-deadly-epidemic-continues-sweep-US.html)

Young Newlywed Dies From Influenza-Related Sepsis Shortly After Complications Arise
Young Newlywed Dies From Influenza-Related Sepsis Shortly After Complications Arise (http://www.medicaldaily.com/pulse/young-newlywed-dies-influenza-related-sepsis-shortly-after-complications-arise-318156)

[vdub]

Yeap, flu can be nasty and the cdc is saying the vaccine manufacturer missed the target this year. I was told at my last appt, even if you do get a vaccination, it takes a couple weeks for the body to build an immunity.

I'm sure a mask helps, but probably helps you more from spreading germs vs. helping you from catch something. I think the 10 most likely things to spread germs are your fingers. I have often thought of how much "really public" areas we touch without even thinking about it -- elevator buttons, money, chair rails as we pull them forward, door pulls, and the list goes on and on and on. And, then, after getting the germs on our hands, we touch our mouth, scratch our nose, or rub our eye. And, there you have it....

Flu vaccinations are particularly bad because they morph from year to year. A continually moving target....