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11-02-2010, 01:13 AM | #11 | |||
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Wisest Elder Ever
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This is why Rituxan is often denied by some insurance plans.
They will not allow something that will cost catastrophic amounts of money from medical intervention, down the line. Patients often moan and complain about insurances but in this case, they may know "best". There was a biological agent recently removed by the FDA, that was targeting psoriasis. http://shine.yahoo.com/channel/healt...-reason-444228
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11-02-2010, 06:39 AM | #12 | ||
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Magnate
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--as it is, more simply, of immune system suppression allowing nasties to slip through that would otherwise be kept in check.
I certainly understand the logic behind immune suppression therapy for autoimmune disease. But, as you guys have pointed out, there is certainly the possibility of knocking off enough T or B cells that way that one can get weird, unusual infections. There's certainly precedence for this--organ transplantation, for instance, almost always involves the need for immune suppression, and in some cases--too many, probably--opportunistic infection is a major complicatino. Transplant patients tend to have to find shingles eruptions, for instance, and in a number of cases Epstein-Barr reactivations--and Epstein Barr has been found in some cancers such as nasopharyngeal carcinoma (uncommon except in some people of Asian decent) and Burkitt's lymphoma (uncommon except in some peopel of sub-Saharan African decent); there are people not usually in the demographic for these who've developed them post immunosuppresion therapy . . . |
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11-02-2010, 07:31 AM | #13 | |||
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Member
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Where is the list of states???
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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11-02-2010, 07:53 AM | #14 | |||
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Wisest Elder Ever
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I think the Simian virus and others are listed at the CDC website.
Give that a try. Michigan had the honor of having the first trials of INJECTABLE polio vaccine... and my mother took me there for it. It was 3 shots in all. I recall because it gave me hives. I think the injectable is more implicated with the Simian viruses than the oral form. But I am not 100% positive on that one.
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11-02-2010, 08:24 AM | #15 | |||
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Magnate
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It was the oral....
It is interesting how we genetically engineered ourselves. And as my husband said, odds are odds....it doesn't matter if 1 in a million are the odds, if you are the 1, it isn't so good. I would have to be at wits end to take the risk. I am simply not ready for it now, and will have to wait for the miracle drug. I wonder what the success of Rituxan is in PN? I am still ENA (SSA-SSB) negative and am not ready to jump into the Sjogren's basket yet. (Oh, how I have changed thru the years---from wanting any diagnosis, to wanting the exact diagnosis.)
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11-02-2010, 08:51 AM | #16 | |||
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Wisest Elder Ever
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more:
http://en.wikipedia.org/wiki/SV40 Quote:
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11-02-2010, 08:58 AM | #17 | |||
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Wisest Elder Ever
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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11-02-2010, 11:12 AM | #18 | |||
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Magnate
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I would test positive for SV40 too. I remember the lines to get the oral, and I distinctly remember a shot too. SV40 hasn't been implicated as a culprit in -mab drug use. So far, JC virus is the one that they feel causes the PML. The odds are we carry JC.
If you were born after 1963, you would NOT have gotten these vaccines. Also, yes, as Glenn said, there are cases such as transplant and life threatening lymphoma, that these drugs mean the difference between life and death. In that case, of course, one would risk this. Chronic pain and some loss of function, is not a reason to risk a fatal infection, at least not now, for me. There are ways to treat chronic pain. Autonomic Dysfunction is more difficult, but still, not enough reason for me to consider a -mab, right now, and my quality of life isn't all that good for my age. My disease interferes with everything. The thought of having come into an exam room and tell me I have PML is more than I can deal with....if nature causes me to get something like that fine, but not by my own hand. I am not going to jump out of the frying pan into the fire, yet. Every one has a different risk tolerance. I would like to know how many people died within 1 year of Rituximab discontinuation, for any reason. That may be an interesting stat. (Yes, I imagine it could be high, since many of these people had life threatening disease). I just wonder if we target a specific disease at times, without looking at ramifications. When I saw that SV40 thing, it just made me kind of wonder. Yes, we stopped Polio, but, we may have caused many other things....Just interesting....the 'targeted approach'.
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11-02-2010, 11:47 AM | #19 | |||
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Magnate
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OK here is the story more or less....now NOTE this is not an unbiased web site, so, while I am looking for more unbiased info, I will post this and you can look around for yourself as to what you find.
http://www.sv40foundation.org/CPV-link.html Also, it was BOTH injectable AND oral according to this. Which means pretty much the entire baby boom generation got this vaccine. I don't believe all of it was contaminated? I had read an article that mentioned the states, and I will try to find that. Keep in mind, not all stuff on the net is true....but, one has to wonder who to believe. I would love to say I believe the health care industry would not do 'bad' things, but I will say two words, Guatamala and Tuskegee. While SV40 was not 'intentional', one is lead to wonder how much of the surge in illness, especially 'idiopathic' is really due to somebody's brain child. Even a well intentioned effort not considering the profit motive, can oft times be diasterous. It sounds like the SV40 debacle was unneccessary....how could the researchers not fathom that simian viruses could be transmitted to human, and why did they fail to act when it was discovered, and why is there not a concerted effort to reach the 'victims' and assess their health status? Yes, Polio is bad stuff.....disabling and deadly...however, my question is, could it have been stopped without adding the simian virus to the mix? This is all an interesting concept to ponder, but, alas, it is water under the bridge, I guess. Has SV40 or any of the other childhood viruses been examined as a cause of small fiber neuropathy? It seems like there is a surge in autoimmune diseases as well. All they appear to have looked at is cancer (which does include that strange link from AI to lymphoproliferative disease). I am really not up on any of this, and just happened to find this in my research....it is rather disconcerting....anyway.... One has to ask, what were they thinking?? http://www.msnbc.msn.com/id/39456324/ http://en.wikipedia.org/wiki/Tuskege...lis_experiment
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11-02-2010, 12:30 PM | #20 | |||
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Magnate
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BTW, there is a TREMENDOUS, TREMENDOUS amount of garbage on this subject on the net (I don't think this is Armageddon)....if you ARE interested in this subject, you will really have to dig for minimally credible sources.
Again, I am not anti-vaccine. SV40 was a accident. I am not against immune based therapies, not at all. I get one. I just hope we have considered what we may activate. And it does make one wonder about latent viruses.
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