I was asked by my rheumy to participate in a study. It is for SLE pts and getting the Gardisil (hpv) vaccine. I had cervical cancer and am cancer free now. The reason for this study is because there is a much higher risk of actually getting cancer from hpv if you have SLE. They want to see if we can build antibodies to hpv with the vaccinessince we aren’t on our own just from exposure. I hope they find good news to help us.
wow thats quite a thing your doing :) :) i hope they come up with good news keep us updated on progress of the study
Janelle, I would think long and hard before taking ANY vaccinations. I refuse.
There have been far too many people harmed by required by law for children vaccines, two of my children included in that group. The hpv vaccine? really? I applaud your desire to help yourself and others. You have a heart of gold and have been through so much already. Do your research, independently, on why I and many others feel this way. If I had to do it all over with the knowledge I have now, my children would have been homeschooled to avoid the vaccinations, especially the live virus and compound ones.
Understand too, with immune system stuff going on, this puts you at higher risk for negative side effects. Do what is best for you please?
We all have to make our own decisions, but I too avoid vaccines. I've had adverse reactions to numerous drugs, so I try to aggravate my immune system as little as possible. Vaccines are a challenge to the immune system, and contain viruses and other toxins. I do not get vaccinated, ever. Obviously I ahd to as a child, but thank God there were a lot fewer vaccines back then.
There are cases of perfectly healthy people joining the army, getting something like 17 shots in one day, then falling ill with autoimmune disease almost immediately.
ohsoperplexed said:
Janelle, I would think long and hard before taking ANY vaccinations. I refuse.
There have been far too many people harmed by required by law for children vaccines, two of my children included in that group. The hpv vaccine? really? I applaud your desire to help yourself and others. You have a heart of gold and have been through so much already. Do your research, independently, on why I and many others feel this way. If I had to do it all over with the knowledge I have now, my children would have been homeschooled to avoid the vaccinations, especially the live virus and compound ones.
Understand too, with immune system stuff going on, this puts you at higher risk for negative side effects. Do what is best for you please?
I was also diagnosed with cervical cancer the same month I got my SLE diagnosis. Just FYI.
I react badly to all vaccines. My messed up immune cell sees the vaccine as a foreign body and attacks it, and my body doesn't build up defenses for those vaccines. Even the chicken pox vaccine failed on me, all flu vaccines, allergy shots, which are a way to build up your immunity to the allergen, I feel like an alien. But everyone is not the same. As you can see, a lot of us have had bad experiences with vaccines. Best of luck if you proceed.
I will ask my Dr about my concerns. As a RN I have to get the flu shot every year or I lose my job. Also, had to get the tdap and hep B vaccines. I’ve never had any negative reaction…now I’m worried. She did say it was a dead virus vaccine. I just don’t want to end up with throat, oral, or vaginal cancer from hpv. I guess I have a lot to think about.
If you've never reacted to any vaccines, you'll probably be fine.
I think it is wonderful that you are willing to participate!! It is people like you who are going to find the cures for future generations so thank you!
Army vaccines are not FDA approved and often are in testing stages. If soldier refuses they can be let go with dishonorable discharge. No, i do not think this is fair. I lived near Travis AFB and many newspaper stories were on soldiers who were sick but the Government refused to help them. What was really disheartening to me was when it was clear that huge groups were sick who had taken same vaccine but not sent to same areas plus their children were getting ill the exact same way, some died even. It is just plain wrong!
As to vaccines, i think too many do not remember the Polio scares of the 1950's. Where people reacted completely out of fear of catching it so treat families that did have family members who had caught it as pariahs. My mother's 1st husband caught it and they just thought he had mild case of the flu. No one was sick near them but he was photographer for a newspaper so traveled. He died 3 days later in iron lung. Look up iron lung if you do not know what it is...my mother in her early 20's was not allowed to touch him as he laid dying. A neighbor kid who was permanently disabled from polio and had to wear braces to kind of swing walk.
Also, with all worry about autism, i can understand the worry about having a child with it. But with all the chemicals now going into how our houses are built and offices....i know in my office about 20 people went home when they put down new industrial carpet the night before. Plus, our food we eat. I think variety we have now is great but i also know other countries use pesticides we ban. I will not or let my animals eat anything from China due to a story NPR did with food inspector and then further research I did. My point is, many things could cause why more kids plus more people period are getting sick...or could be combination of all these things
We forget and now here in CA they have ads in kinds of media because whooping cough is now again epidemic in some areas. We forget how vaccines help to stop just horrible diseases like small pox, measles and so many more. If people stop taking them than first to die are going to be our children and those with weaker immune systems so that means, you and I.
As to person who said vaccines did not work on her she might be like may lupus people who can have two different things going on. First we test both false positives and negatives on screening tests like for STD's, TB, etc.. Other is that to get vaccine that will work, like for me TB, I had to do the more advanced one and sure it still might not have worked...guess i really will not know unless i catch it since i do false testing even on the better tests.
Thankfully my doctor told me that i might show up false positive for STD's, so when i got married and you must take(at least here in Ca) STD test to get your license and I did! Yes, it was embarrassing but my husband knew so was good laugh.
But back to the clinical study the person is doing, which i think all of us if possible should try and participate in, so we can get as much research as possible out there if not for us but our children. I hope all of us will at least check for studies going on in your areas...they are free and some pay you even!
LFA has them listed and i believe all the non profit lupus or any other disease you have will also list them on their site. I believe if you search clinical studies a lot will pop up plus the Government has some on FDA pages. So Thank YOU to helping all of us!! I truly appreciate the time and effort you are contributing!!
Thank you for the support! 
Siskiyousis, this is a beautifully written post that has a very balanced, comprehensive discussion of the issues of vaccines as well as lack of ethics in army “research”… I was a clinical research coordinator for two years and the code of ethics was held extremely highly, especially adequately informed consent free of coercion. It’s appalling how far from that the army usage is.
For anyone entering a research study in a place like US, UK or Canada, informed consent is a big part of it and your opportunity ask questions about all of your concerns with participating. A research study is a great way to learn a ton about current treatments, potentially benefit from a nifty new treatment (yet with potential for placebo or worse, harmful effects), and has you and your study coordinators tracking your symptoms very closely and regularly! Many of you may know these categories already, but here’s a quick intro to the categories of studies that will give you a rough idea of what to expect. I will list from lowest risk to highest risk. ALL of them require informed consent at a level you can understand and that allows you full, un-pressured freedom to choose, including not paying too much (lest lower-income patients be essentially coerced.)
Registry: name and phone number goes on a list of people to potentially be contacted regarding studies, and is de-identified when sending to other institutions.
Repository: blood samples are taken and analyzed under the de-identified codes looking at anything from disease activity and physiology to genetic determinants of disease, including perhaps to cellular effects of drugs early in the pipeline of development (pre-animal trials.)
Retrospective observational study: questionnaires about past history that are aggregated into a large pool of info about correlations found in the disease or its treatments.
Prospective observational study: patients enrolled are tracked into the future to look for correlations in disease/disease activity; usually a more specific/controlled goal than retrospective can achieve.
Interventional studies: action being taken to treat the disease, compare treatments, or even remove treatments. Sub-categories below (again, listed low- to high-risk)
A) behavioral modification: diet or lifestyle is changed and effects observed in a controlled way, perhaps allowing a taper of meds but NOT pushing it too fast looking for relapse. ALL studies MUST expect likelihood of greater benefit than risk, and it is never ok to have a study goal of looking for relapse or stimulating it in any way, or even leaving patients in an active disease state when a standard-of-care treatment is available.
B) Drug trials
Comparison studies: which approved drug is better when we switch patients around.
Phase IV trials: a new or approved-for-other-conditions drug in the final stages of testing. Things like how patients like the drug and any complaints not discovered in earlier trials with a narrower focus. These are a GREAT way to get free care with the hottest new treatments, as long ad you don’t mind being randomly assigned and maybe getting placebo. But often they are open-label, which means you know if you’re getting drug vs. placebo or one drug vs. another.
Phase III: drug has been determined to be safe for human use and effective for the condition. These studies are normally still blinded and might offer a randomly assigned range of doses to determine the effectiveness vs. side-effects axis and further collect adverse events. Normally always a placebo involved and you and your study doc (and main rheumie, and any ER doc…) won’t know which dose or if it’s placebo. Maybe drug-drug interactions aren’t known yet (though they will have been predicted theoretically by pharmaceutical chemistry), so it could still be life-threatening for a specific patient out of the blue even though it’s safe population-wise. That could happen in phase IV too, and of course even with fully-approved drugs that haven’t been seen together with problematic results, but it’s more likely here since phase III is where they expand the population size receiving it and these interactions (with drugs or even certain genetic backgrounds) won’t have been observed yet in this third phase.
Phase II: these are honestly still pretty risky even though they’re not the absolute first phase. Even though I am generally willing to participate in clinical research, with risk of getting placebo and possible relapse being my main concern, I think l wouldn’t really try a phase II unless I really wasn’t being helped by anything else available. Which is often who they focus on in these limited-size trials. Basic effectiveness has to be shown (though not as detailed as phase III) to move forward, and risks are monitored to help determine the benefit/risk ratio before proceeding to larger populations. There are levels II-a and II-b, with b a good bit safer than a, but I don’t remember the distinction between them because my group hardly did any of them and a far more experienced coordinator worked on the one we had going. This may be the starting level for drugs approved for another indication that may help in a new condition, when Phase III or IV are either too detailed or somehow risky for patients.
Phase I: basic safety in humans for drugs never tried in humans. It used to be that they’d just pay a lot to get healthy volunteers to take the plunge, but since that’s grossly unethical, these are now offered mostly to people who are desperate, near death without a miracle treatment, etc. However, animal testing is extensive and had a lot of bearing on the presumed safety of it for humans. Many that are expected to be quite safe (eapecially if in the same class as other approved drugs) skip non-human primates, actually, if mice (or even cats or dogs, yes they are sometimes used in research but in very small numbers and for well-defined reasons…) are already considered adequate models.
A note on Animal Research: I was a vegetarian for 10 years and still refuse to buy meat, eggs/dairy, or fish sourced inhumanely. I also work to gently educate friends about the differences and values of mass-produced vs. healthily, humanely produced animal products. Key point being that it takes less energy/resources per calorie (as well as less farmland! Livestock eat massive amounts of farmed food!) to produce plant foods than animal sources, and overconsumption of meat is terrible for our nation’s health. On the other side of my slightly animal-activist coin, I also feel it’s essential to continue animal research for the safety and benefits of patients (I put it back on their own self-interest: “ok, so you’d sign up for skin are product testing with largely known/safe ingredients in a different combination… Easy. But would you swallow a drug scientists hoped would help and not kill people? Or let huge numbers of sick humans suffer and die when they don’t need to with current medical science? Or even skip your tylenol because it never got approved for sale? Didn’t think so.”)
There are many legitimate ethical concerns with using animals, most of all primates, who are all killed at the conclusion of the study to determine effects more thoroughly by autopsy, often in “models” that have been specifically bred or exposed to make them sick with the condition or similar… And the scientists themselves are extremely sensitive to these concerns and strongly attached to their subjects by the time they have to be very humanely put down. I’ve had friends leave science because they couldn’t handle the stress of killing even mice on such a regular basis yet having that be the only way to do really helpful bioscience in a more complex system than a Petrie dish. It’s just a reality, it needs to be carefully regulated and monitored to protect against the few scientists whose passion for finding answers or cures (or, let’s face it, competition to publish) surpasses their will to honor a simpler animal’s pain or life even though they are long-jaded by beheading anesthetized mice (yes, they are always given anesthesia first unless it would interfere with the research target they are measuring by killing them in the first place, in which case neck-breaking and/or beheading are still the fastest and most humane, even though they are pretty repulsive to the young technicians asked to do them!!) My motto for this is essentially, please support animal and human rights by continuing with animal research with careful ethical regulations, and comtinue eating small amounts of meat to only the extent your body needs but also with regulation of the animal’s rights. And I strongly believe humanely killing small numbers of animals for life-saving research is FAR more ethical and important than mass-killing miserable animals for the idiotic/selfish task of eating them since they “taste good” and are an easier/cheaper source of high calories than tons of fresh veggie foods. The main concern with animal research is how they suffer from the induced disease or treatment during their life, in which case the euthanasia is a good thing! But we always must remember those diseases are induced because humans are suffering from them! I know I’m preaching to the choir quite a bit, but it sure will be hard not to hit someone with a huge argumentative hammer if they say something insensitive like “oh, how sad that little innocent mice are genetically engineered to have awful diseases like Lupus when they woulda been healthy if humans left them alone!” Try having lupus and get back to me on whether you want it researched adequately. Case closed 
I encourage everyone to participate in research, by simply a registry if your concerns or opportunities limit you to that. The way we will most likely reach a real cure rather than just more management drugs is by donating to a blood sample repository for detailed lab research. You can make a huge difference just by consenting to one more venipuncture and the tiny (yet important) risk of your genetic info being leaked and linked to your identifiable personal information and getting in the wrong hands… I’d rather support a cure than worry about minutiae like that! But it’s your free choice 
Brynn
siskiyousis said:
I think it is wonderful that you are willing to participate!! It is people like you who are going to find the cures for future generations so thank you!
Army vaccines are not FDA approved and often are in testing stages. If soldier refuses they can be let go with dishonorable discharge. No, i do not think this is fair. I lived near Travis AFB and many newspaper stories were on soldiers who were sick but the Government refused to help them. What was really disheartening to me was when it was clear that huge groups were sick who had taken same vaccine but not sent to same areas plus their children were getting ill the exact same way, some died even. It is just plain wrong!
As to vaccines, i think too many do not remember the Polio scares of the 1950’s. Where people reacted completely out of fear of catching it so treat families that did have family members who had caught it as pariahs. My mother’s 1st husband caught it and they just thought he had mild case of the flu. No one was sick near them but he was photographer for a newspaper so traveled. He died 3 days later in iron lung. Look up iron lung if you do not know what it is…my mother in her early 20’s was not allowed to touch him as he laid dying. A neighbor kid who was permanently disabled from polio and had to wear braces to kind of swing walk.
Also, with all worry about autism, i can understand the worry about having a child with it. But with all the chemicals now going into how our houses are built and offices…i know in my office about 20 people went home when they put down new industrial carpet the night before. Plus, our food we eat. I think variety we have now is great but i also know other countries use pesticides we ban. I will not or let my animals eat anything from China due to a story NPR did with food inspector and then further research I did. My point is, many things could cause why more kids plus more people period are getting sick…or could be combination of all these things
We forget and now here in CA they have ads in kinds of media because whooping cough is now again epidemic in some areas. We forget how vaccines help to stop just horrible diseases like small pox, measles and so many more. If people stop taking them than first to die are going to be our children and those with weaker immune systems so that means, you and I.
As to person who said vaccines did not work on her she might be like may lupus people who can have two different things going on. First we test both false positives and negatives on screening tests like for STD’s, TB, etc… Other is that to get vaccine that will work, like for me TB, I had to do the more advanced one and sure it still might not have worked…guess i really will not know unless i catch it since i do false testing even on the better tests.
Thankfully my doctor told me that i might show up false positive for STD’s, so when i got married and you must take(at least here in Ca) STD test to get your license and I did! Yes, it was embarrassing but my husband knew so was good laugh.
But back to the clinical study the person is doing, which i think all of us if possible should try and participate in, so we can get as much research as possible out there if not for us but our children. I hope all of us will at least check for studies going on in your areas…they are free and some pay you even!
LFA has them listed and i believe all the non profit lupus or any other disease you have will also list them on their site. I believe if you search clinical studies a lot will pop up plus the Government has some on FDA pages. So Thank YOU to helping all of us!! I truly appreciate the time and effort you are contributing!!
17 shots in one day is soooooooooo dumb. I can't think that there are any people that don't react in some way. My fu fu maltipoo had eight shots once and she blew up and looked like a cocker spaniel. I'm yeah or nay about vaccines. I keep up with my flu and pneumonia vaccines. However, recently I was in hospital with pneumonia--so much for the pneumonia vaccine.
You have to hold on
Carla Ulbrich said:
We all have to make our own decisions, but I too avoid vaccines. I've had adverse reactions to numerous drugs, so I try to aggravate my immune system as little as possible. Vaccines are a challenge to the immune system, and contain viruses and other toxins. I do not get vaccinated, ever. Obviously I ahd to as a child, but thank God there were a lot fewer vaccines back then.
There are cases of perfectly healthy people joining the army, getting something like 17 shots in one day, then falling ill with autoimmune disease almost immediately.
ohsoperplexed said:Janelle, I would think long and hard before taking ANY vaccinations. I refuse.
There have been far too many people harmed by required by law for children vaccines, two of my children included in that group. The hpv vaccine? really? I applaud your desire to help yourself and others. You have a heart of gold and have been through so much already. Do your research, independently, on why I and many others feel this way. If I had to do it all over with the knowledge I have now, my children would have been homeschooled to avoid the vaccinations, especially the live virus and compound ones.
Understand too, with immune system stuff going on, this puts you at higher risk for negative side effects. Do what is best for you please?