Guest guest Posted April 30, 2001 Report Share Posted April 30, 2001 I'm going to weigh in on this thread with some OPINIONS based on personal experience. In my position running a clinical lab, I have had free and easy access to comprehensive lab work for over 25 years. I have had complete lab workups done several times per year over that period and can precisely pinpoint the date of the appearance of my symptoms. 14 days after a routine tetanus vaccination, I had the appearance of microscopic blood in my urine followed by a short period of fever and coffee colored urine, followed by a couple of days of complete cessation of urine output and doubling of serum creatinine. I made a full recovery within a week and have been fine ever since. Based on the general timing of an immune response, I clearly feel that the tetanus booster set off my immune system...no question about it in my mind. Since that date, I have refused vaccinations of any type and have had no recurrence. THIS IN NO WAY MEANS THAT I ADVOCATE THIS FOR ANYONE ELSE, because vaccinations provide clear immunologic protection from many diseases. I simply weigh the perceived risks in my own situation and make this choice based purely on the empirical evidence of my own disease development. Please remember...this is purely personal opinion based on my own experience and most of my physician friends (as well as those involved in my care) are rather skeptical of the connection. At 06:30 PM 4/30/2001 +0000, you wrote: >It is interesting you mention vaccinations because I had a tetnus >shot a month before I noticed the nephrotic syndrome. I agree. I've >always wondered about the vaccination. > > > > > You know, that makes me think of something.Since nobody in the >world knows > > what causes IgA-type glomerulonephritis to begin, we're all pretty >much free > > to speculate all we want : ) > > > > I still think some vaccinations might have had something to do with >mine - > > trouble is, I'm the only one who thinks that, and even if I were >right, it > > wouldn't make a bit of difference to my current condition. The >other thing > > is that if I hadn't had the vaccinations, I might have had any of >the > > diseases they are supposed to prevent. > > > > Oh well, what can you do. > > > > Pierre > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Not much I can do about it now, after the fact, more than 25 years later. But, I still suspect it. I remember very well being sick like a dog a few days after the vaccination assembly line, but, in the military, especially back in the seventies, you weren't really sick unless you were dead. So nobody paid much attention to it - and of course, at the time, I didn't know any better. Pierre Re: new member > Pierre > I agree with you with you about the link of IgAN and the military. > I was in the military(US NAVY)when I was diagnosed. > Before I was in the Navy I was very healthy, but after that > vaccionation that who knows what's on it!(they never really say > what's is it) I got very sick, from flu, colds ,ear infections and > other complications from that, and now my BP and kidneys(all of this > in a period of 2 years). > I just wish that some one will do a research about this, I'm pretty > sure that some interesting results will come up. > It's not fair the possition of the military about this problem for > people like us. > > > > > > > > > Hi Mark. Glad you found us. Welcome to the group. I don't > personally know of any data to show that drug use might cause IgAN, > but, drug use is a well-known cause of kidney failure (cocaine > especially), and, if you already had mild IgAN at the time, it could > well have made it worse because of the elevated blood pressures and > just the nephrotoxicity of some illegal drugs. Most of us probably > had the IgAN for a while before it was actually diagnosed or > discovered, so you might already have had it in a mild form before > 1985. So, not being a doctor, my guess would be that at the very > least, it didn't help. > > > > Your story is particularly interesting to me because of the > connection to the navy. I was also in the navy (Canadian) in my early > 20's, and it does seem (just from my observations) that there is a > high rate of IgAN among military and ex-military personnel, in > various countries. The only common link I can think of is that most > military personnel join the military in their late teens or early > 20's, go to basic training or boot camp where they are vaccinated > against a variety of diseases, and then over a period of 1-4 years, > develop the symptoms of IgAN. There is nothing scientific in this at > all - it's only something that I've long suspected. I'm guessing that > in a minority of people, a vaccination of some kind triggers an > abnormal IgA response that just won't shut itself off. Then, as life > goes on, some years later, we get another vaccination for something, > like tetanus, for example, and this causes further injury to the > kidneys. If only it could be proven, I would be able to get a nice > medical pension : ) > > > > I've had similar problem with blood pressure. For the past decade, > no combination of drugs would control it without a diuretic being > added. This isn't uncommon. When you reach a certain degree of renal > failure, the blood pressure becomes more and more what they > call " volume dependent " , which means that the kidneys retain too much > sodium and fluid, no matter what you do. Only a diuretic can fight > this. > > > > If your serum creatinine is steady at 2.2 now, you may be able to > stave off renal failure for a long, long time, if you keep that blood > pressure under good control. > > > > Good luck with going back to work. > > > > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Why is there no comprehensive study on the link between this disease and vaccinations? Dr's just dimiss it out of hand, but I am convinced that a tetnus vaccination is responsible for my IGa. We should take an informal poll of everyone on this board. Study or not, I will never take another vaccination. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 I don't think there would be much point in taking a poll of our 250+ members, since just about everybody has had some kind of vaccination at some point. The results would be meaningless. With vaccinations, it's a benefits vs risks type of thing. I'm sure other parents in the group have had to go through this kind of decision or worry when the time came to have their children immunised against various things. I forget which one now, one of the hepatitis vaccines I think, but there were a couple where we were aware there was a certain known percentage risk of brain damage. I had to go through this kind of worry a number of times with my two kids. If you take tetanus as an example, or let's take one that's a hot topic in the news, anthrax. If you are a worker at high risk for exposure to anthrax, is it better to risk the exposure and take your chances (with death as a possibility), or is it better to get the anthrax vaccine and accept the risk of some adverse effects? If there turns out to be a bioterrorist attack on North America involving smallpox (which is deadlier than anthrax, and contagious), will we think twice about taking the vaccine? Pierre Re: vaccinations > Why is there no comprehensive study on the link between this disease > and vaccinations? Dr's just dimiss it out of hand, but I am > convinced that a tetnus vaccination is responsible for my IGa. We > should take an informal poll of everyone on this board. Study or > not, I will never take another vaccination. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 , I also think there is a link to IgAN and vaccinations. My son, , was diagnosed last Thanksgiving with IgAN. His then nephrologist, gave him a flu shot about three weeks after his diagnosis. His gross hematuria had subsided, his protein was going down and he was getting better. Then, he gave him a flu shot. One week later he started running a fever, his creatine doubled to2.2 and rising, and his protein was rising steadily. He was admitted to the hospital where he continued to get worse-his kidneys, though ultrasound, were seen to be inflamed and swollen. Only IV prednisone helped him. One hour after his first treatment, his fever, 103, broke, and each day afterward his creatine started going down. No one will ever convince me that the flu shot was not the cause of this. Pam > Why is there no comprehensive study on the link between this disease > and vaccinations? Dr's just dimiss it out of hand, but I am > convinced that a tetnus vaccination is responsible for my IGa. We > should take an informal poll of everyone on this board. Study or > not, I will never take another vaccination. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 You are right. I guess I was just not fully aware of the risks involved in getting a vaccination. Now I know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 Of course, to add to my own reply, I'm still just as frustrated as anyone else about what may or may not have caused my IgAN. It's too easy to jump to seemingly obvious conclusions from things that are really just coinicidence. I do suspect vaccines because of the circumstances under which I came to have IgAN, and how my more recent decline came about after years of relative stability almost immediately following another series of immunisations, but I'm not stating that I know that for a fact, and I can't turn back the clock anyway. I too, like , wish they would conduct more research on this. However, I hope my discussion of this doesn't discourage anyone from having any needed vaccine. Pierre Re: vaccinations > > > > Why is there no comprehensive study on the link between this disease > > and vaccinations? Dr's just dimiss it out of hand, but I am > > convinced that a tetnus vaccination is responsible for my IGa. We > > should take an informal poll of everyone on this board. Study or > > not, I will never take another vaccination. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 I agree that more studies should be done for all kinds of shots. Last year I took the flu shot, and I still got sick. It was problably the most sick I ever was, but at that time I din't know about my IgAN. This year I'm having douts about taking it, but with all of this about the anthrax I really don't know what to do. We have to remember something, Sometimes a shot might set the line between being dead or alive. Example the smallpox(just like Pierre said) For those who don't know there is no treatment for smallpox except the smallpox shot. Once you get smallpox and you don't treat it you die. Smallpox is not something like anthrax where you only get it in very special sitiations, smallpox is contagious(1 person can infect 10). We have to be very aware about what's going on now, and unfortunately we don't know what will happen tomorrow. In my opinion, if by any chance(I hope not!) there is just one case of smallpox in the world or the US I will not hesitate to get the smallpox shot. Hey, what's the worst thing it could happen to people who have IgAN? Have I kidney failure? It will take a really strong shot to do that, unless you are at the very very end of this disease. Besides, you have a better chance to die of smallpox than from dialysis. Jeimy > Of course, to add to my own reply, I'm still just as frustrated as anyone > else about what may or may not have caused my IgAN. It's too easy to jump to > seemingly obvious conclusions from things that are really just coinicidence. > I do suspect vaccines because of the circumstances under which I came to > have IgAN, and how my more recent decline came about after years of relative > stability almost immediately following another series of immunisations, but > I'm not stating that I know that for a fact, and I can't turn back the clock > anyway. I too, like , wish they would conduct more research on this. > > However, I hope my discussion of this doesn't discourage anyone from having > any needed vaccine. > > Pierre > > Re: vaccinations > > > > > > > Why is there no comprehensive study on the link between this disease > > > and vaccinations? Dr's just dimiss it out of hand, but I am > > > convinced that a tetnus vaccination is responsible for my IGa. We > > > should take an informal poll of everyone on this board. Study or > > > not, I will never take another vaccination. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 I agree that more studies should be done for all kinds of shots. Last year I took the flu shot, and I still got sick. It was problably the most sick I ever was, but at that time I din't know about my IgAN. This year I'm having douts about taking it, but with all of this about the anthrax I really don't know what to do. We have to remember something, Sometimes a shot might set the line between being dead or alive. Example the smallpox(just like Pierre said) For those who don't know there is no treatment for smallpox except the smallpox shot. Once you get smallpox and you don't treat it you die. Smallpox is not something like anthrax where you only get it in very special sitiations, smallpox is contagious(1 person can infect 10). We have to be very aware about what's going on now, and unfortunately we don't know what will happen tomorrow. In my opinion, if by any chance(I hope not!) there is just one case of smallpox in the world or the US I will not hesitate to get the smallpox shot. Hey, what's the worst thing it could happen to people who have IgAN? Have I kidney failure? It will take a really strong shot to do that, unless you are at the very very end of this disease. Besides, you have a better chance to die of smallpox than from dialysis. Jeimy > Of course, to add to my own reply, I'm still just as frustrated as anyone > else about what may or may not have caused my IgAN. It's too easy to jump to > seemingly obvious conclusions from things that are really just coinicidence. > I do suspect vaccines because of the circumstances under which I came to > have IgAN, and how my more recent decline came about after years of relative > stability almost immediately following another series of immunisations, but > I'm not stating that I know that for a fact, and I can't turn back the clock > anyway. I too, like , wish they would conduct more research on this. > > However, I hope my discussion of this doesn't discourage anyone from having > any needed vaccine. > > Pierre > > Re: vaccinations > > > > > > > Why is there no comprehensive study on the link between this disease > > > and vaccinations? Dr's just dimiss it out of hand, but I am > > > convinced that a tetnus vaccination is responsible for my IGa. We > > > should take an informal poll of everyone on this board. Study or > > > not, I will never take another vaccination. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 Yes Pierre I totally agree, the benefits of vaccinations in my opinion far outweigh any side effects. To put it into perspective, if you think of all the people in the world who have had flu shots, vaccinations for travel, childhood shots, etc etc, not all of them have ended up with IGAN. Of course everyone is entitled to their opinions, and it may well be a possibility that their individual diagnosis could have been connected to vaccinations, myself I became ill after a whole host of shots for a trip to Kenya, so if I had to have suspicions that is where they would be. However that said, my Nephrologist has continued to insist that I get the flu shot, plus keep all my Hepatitis up to date, as well as tetanus. This year I had the pneuvac which knocked me for six, and he also wants me to get the Meningitis shot before the end of the year. I am happy to take his advice, because the alternatives do not bode well for me, and besides which I trust his judgment completely. Personal choice for everyone I guess. Best wishes -----Original Message----- From: Pierre Sent: 27 October 2001 17:34 To: iga-nephropathy Subject: Re: Re: vaccinations Of course, to add to my own reply, I'm still just as frustrated as anyone else about what may or may not have caused my IgAN. It's too easy to jump to seemingly obvious conclusions from things that are really just coinicidence. I do suspect vaccines because of the circumstances under which I came to have IgAN, and how my more recent decline came about after years of relative stability almost immediately following another series of immunisations, but I'm not stating that I know that for a fact, and I can't turn back the clock anyway. I too, like , wish they would conduct more research on this. However, I hope my discussion of this doesn't discourage anyone from having any needed vaccine. Pierre Re: vaccinations > > > > Why is there no comprehensive study on the link between this disease > > and vaccinations? Dr's just dimiss it out of hand, but I am > > convinced that a tetnus vaccination is responsible for my IGa. We > > should take an informal poll of everyone on this board. Study or > > not, I will never take another vaccination. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 I was just reading in the Sunday paper that over the coming months, an estimated 2000 Canadians will die from the flu and complications such as pneumonia. In the U.S., with its 10 times larger population, the estimate is 20,000 deaths, plus 100,000 hospitalized. In Ontario, the province of Canada I live in, the government is really pushing the influenza shot, making it free to just about anybody, mainly because it saves on health care costs overall. Pierre Vaccinations Just a thought. Will influenza kill more citizens this year than Anthrax? I should think the answer would be yes so I do not regret having the flu jab. Nic Dunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 On the positive side, you didn't get tetanus though : ) Seriously, I don't know about you guys, but for me, tetanus has probably been the shot I've had the most. It's supposed to be good for 10 years, but, every time I've managed to cut myself badly enough - which is surprisingly often - I haven't been able to remember just when I had the last one. So, another tetanus shot, just to be on the safe side. I can't even count how many I've had over the years, but I never did get tetanus. Most of you twenty and thirty-somethings in the group don't remember the polio scares of the 50's. When a vaccine became available, nobody, but nobody questioned the risks involved. We were all just happy that we wouldn't have to spend the rest of our lives in an iron lung, which was the image most of us kids had of polio. What does this have to do with IgAN - well, nothing I guess. Just part of discussion of risks vs benefits of vaccines. Pierre Re: Digest Number 399 > ***Perking up from lurker status*** > Hello Group > I , too ,agree with Pierre that the benefits from > vaccinations far outweigh the risks of NOT having > them. Especially in the case of smallpox > Nevertheless I am convinced I contracted IgAN after a > tetanus shot as well. > Actually it ws a combination of things but First I had > the shot, then 6 weeks later I developed a strep > infection that turned into Scarlet Fever because of > inept physicians. Finally I started spilling protien > and blood and had the rash all over my body and then > they figured out that I had an infection that was > basically systemic. I had a rash for over a week > before ANYONE KNEW WHAT IT WAS. By then it had > developed into glomeronephritis and ever since then I > had chronic kidney pain and chronic glomeronephritis. > Finally after a year of suffering with this they > diagnosed me with IgAN > I swear it was al related to the inital tentanus shot > and subsequent strep infection > *sigh* > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 I also have a hazy tetanus relationship, but I don’t think that I will forget that the last injection was the year I had my biopsy, and I will make a note of the next one. We should all make note of our vaccinations – near enough is not good enough. -----Original Message----- From: Pierre Sent: 30 October 2001 12:16 To: iga-nephropathy Subject: Re: Vaccinations On the positive side, you didn't get tetanus though : ) Seriously, I don't know about you guys, but for me, tetanus has probably been the shot I've had the most. It's supposed to be good for 10 years, but, every time I've managed to cut myself badly enough - which is surprisingly often - I haven't been able to remember just when I had the last one. So, another tetanus shot, just to be on the safe side. I can't even count how many I've had over the years, but I never did get tetanus. Most of you twenty and thirty-somethings in the group don't remember the polio scares of the 50's. When a vaccine became available, nobody, but nobody questioned the risks involved. We were all just happy that we wouldn't have to spend the rest of our lives in an iron lung, which was the image most of us kids had of polio. What does this have to do with IgAN - well, nothing I guess. Just part of discussion of risks vs benefits of vaccines. Pierre Re: Digest Number 399 > ***Perking up from lurker status*** > Hello Group > I , too ,agree with Pierre that the benefits from > vaccinations far outweigh the risks of NOT having > them. Especially in the case of smallpox > Nevertheless I am convinced I contracted IgAN after a > tetanus shot as well. > Actually it ws a combination of things but First I had > the shot, then 6 weeks later I developed a strep > infection that turned into Scarlet Fever because of > inept physicians. Finally I started spilling protien > and blood and had the rash all over my body and then > they figured out that I had an infection that was > basically systemic. I had a rash for over a week > before ANYONE KNEW WHAT IT WAS. By then it had > developed into glomeronephritis and ever since then I > had chronic kidney pain and chronic glomeronephritis. > Finally after a year of suffering with this they > diagnosed me with IgAN > I swear it was al related to the inital tentanus shot > and subsequent strep infection > *sigh* > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2001 Report Share Posted October 30, 2001 It seems to be that those with IgAN have a predisposition to the disease and it is in a dormant stage. The innoculation or flu shot must trigger a reaction that makes the IgAN become active. This is true of many diseases, I would guess. One of my daughters has multiple schlerosis (another autoimmune disease) which became active after a pregnancy. I guess I'm the one with the bad gene as my son and daughter have different fathers. Pam > I also have a hazy tetanus relationship, but I don't think that I will > forget that the last injection was the year I had my biopsy, and I will make > a note of the next one. We should all make note of our vaccinations – near > enough is not good enough. > > > Re: Vaccinations > > On the positive side, you didn't get tetanus though : ) > > Seriously, I don't know about you guys, but for me, tetanus has probably > been the shot I've had the most. It's supposed to be good for 10 years, but, > every time I've managed to cut myself badly enough - which is surprisingly > often - I haven't been able to remember just when I had the last one. So, > another tetanus shot, just to be on the safe side. I can't even count how > many I've had over the years, but I never did get tetanus. > > Most of you twenty and thirty-somethings in the group don't remember the > polio scares of the 50's. When a vaccine became available, nobody, but > nobody questioned the risks involved. We were all just happy that we > wouldn't have to spend the rest of our lives in an iron lung, which was the > image most of us kids had of polio. What does this have to do with IgAN - > well, nothing I guess. Just part of discussion of risks vs benefits of > vaccines. > Pierre > > Re: Digest Number 399 > > > > ***Perking up from lurker status*** > > Hello Group > > I , too ,agree with Pierre that the benefits from > > vaccinations far outweigh the risks of NOT having > > them. Especially in the case of smallpox > > Nevertheless I am convinced I contracted IgAN after a > > tetanus shot as well. > > Actually it ws a combination of things but First I had > > the shot, then 6 weeks later I developed a strep > > infection that turned into Scarlet Fever because of > > inept physicians. Finally I started spilling protien > > and blood and had the rash all over my body and then > > they figured out that I had an infection that was > > basically systemic. I had a rash for over a week > > before ANYONE KNEW WHAT IT WAS. By then it had > > developed into glomeronephritis and ever since then I > > had chronic kidney pain and chronic glomeronephritis. > > Finally after a year of suffering with this they > > diagnosed me with IgAN > > I swear it was al related to the inital tentanus shot > > and subsequent strep infection > > *sigh* > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 >One of my daughters has multiple schlerosis (another autoimmune disease) >which became active after a pregnancy. I did some reading about autoimmune diseases. Women have a greater chance of having them and they often appear during the child-bearing age. In all the reading I have done on IgAN, none of the researchers, MD's, etc. have ever mentioned that IgAN is an autoimmune disease. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 According to the American Autoimmune Related Disorder Association (www.aarda.org) IgAN is in the list as an autoimmune disorder. jeimy > >One of my daughters has multiple schlerosis (another autoimmune disease) >which became active after a pregnancy. > > > I did some reading about autoimmune diseases. Women have a greater chance of having them and they often appear during the child- bearing age. > > In all the reading I have done on IgAN, none of the researchers, MD's, etc. have ever mentioned that IgAN is an autoimmune disease. > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I've increasingly seen IgAN mentioned as an immune complex disease. I don't think it's auto-immune in the classic sense of that term, but it depends on how broadly those terms are used I guess. Pierre Re: Vaccinations > According to the American Autoimmune Related Disorder Association > (www.aarda.org) IgAN is in the list as an autoimmune disorder. > > jeimy > > > > > > > >One of my daughters has multiple schlerosis (another autoimmune > disease) >which became active after a pregnancy. > > > > > > I did some reading about autoimmune diseases. Women have a > greater chance of having them and they often appear during the child- > bearing age. > > > > In all the reading I have done on IgAN, none of the researchers, > MD's, etc. have ever mentioned that IgAN is an autoimmune disease. > > > > Marty > > Quote Link to comment Share on other sites More sharing options...
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