Talk:Systemic lupus erythematosus
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[edit] UVA1 phototherapy
24.14.35.45 (talk · contribs), self-identified as the author of Anthony DeBartolo (2004). Lupus Underground: A Patient's Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy That Actually Works - UVA1 Phototherapy. Hyde Park Media. ISBN 0-9763428-0-4. has left a note on my talkpage to ask why I have repeatedly removed mention of UVA-1 treatment. To clarify here: there is no evidence that this treatment is anywhere beyond early clinical trials, and is not yet in widespread clinical use. Failing corroboration on its popularity from independent sources, I don't think UVA-1 phototherapy should be mentioned. JFW | T@lk 16:23, 11 July 2008 (UTC)
- correction - i've left more than a note on your talk page Jfdwolff...but if you wish to move our discussion to this page, no problem.
- if nothing else, i think UVA1 needs to be included under "Treatment research" (even though it's used off-label today) since what many of the trial drugs are attempting to do, we already know UVA1 does.
- i invite all to read the most important chapters of 'Lupus Underground' here: [1] (password = lupuslight) --- especially appendix b - research from 1987-2003...you'll find a few of the more recent studies on the book's website - http://www.lupusunderground.com
- how about this entry under treatment research?: "UVA1 Phototherapy - a promisiing therapy that uses ultraviolet UVA1 radiation - long UVA wave lengths that do not promote sunburn and which are thought to block inflammatory immune factors by promoting apoptosis (cell death) in T cells. Several studies, both in the U.S. and Europe, have shown that UVA1 phototherapy lowers disease activity in SLE."
- BTW -the "Clearance deficiency" section nicely explains the UVA1 action, but it is unproven....so why is this allowed? this is, however, the same action that makes UVA1 effective for morphea & scleroderma - simply put, it kills immune cells. —Preceding unsigned comment added by 24.14.35.45 (talk) 17:12, 11 July 2008 (UTC)
- Spaced for readability. As I've pointed out on your talk page, the question is also one of medically reliable sources (of which your book is not due to the publisher) and undue weight. If UVA1 is a regularly used treatment, then the sources must come from peer-reviewed journals and books published by university or medical press.
- Clearance deficiency is referenced to the Journal of Autoimmunity, and there are other references on pubmed that discuss the term (i.e. PMID: 15893710; PMID: 16394661; PMID: 16724805 and a total of 79 searching for "clearance deficiency lupus erythematosus"). UVA1 lupus erythematosus produces 7 hits. This suggests WP:UNDUE; I would suggest working with the reliable sources to build a possible section (perhaps on a sub-page) and requesting a review. Note that "promising" is not neutral (and appears inaccurate as the latest article on pubmed was in 2006), and "several studies" is weasel-wordy. I would suggest citing, linking and summarizing the studies. WLU (talk) 18:27, 11 July 2008 (UTC)
my book may not be a "medically reliable source" but it's filled with medically reliable sources....as i said: appendix b - research from 1987-2003 + my interviews with top experts in the field.
my point about 'Clearance deficiency' (which by the way Dr. Hugh McGrath Jr. pointed out to me when he read it) is not that no one has ever heard of it - Dr. McGrath's point was it has never been PROVEN to be the case in lupus...so please, stop with the straw man technique ....who cares how many "hits" you get for the term -- what do the citations say?
and what in the world does 2006 as being the last pubmed UVA1 hit have to do with anything?
as for use of the term "promising" - fine - change it to "proven" —Preceding unsigned comment added by 24.14.35.45 (talk) 21:08, 11 July 2008 (UTC)
i've posted it under a newly created hed = alt med ...any objections? if so, please explain them...thanks24.14.35.45 (talk) 00:18, 12 July 2008 (UTC)
- Please space your posts appropriately per talk page guidelines. You might also want to review undue weight again - we are not obligated to report every possible topic, only the notable ones. It would be particularly helpful if you actually read the policies and referred to them rather than attempting to convince purely through logic, which is considered original research and forbidden. (the three revert rule is also a concern, and I believe you're in danger of violating it).
- Your book is not a reliable source, and can not be cited. You can, however, cite the sources it contains directly so long as no original analysis occurs (i.e. you don't cite the articles to re-state the conclusions in your book). Again, I point you to pubmed, where in combination with diberry you can produce perfect, error-free templates. Virtually everything found on pubmed can be considered reliable, and it's a pretty good index of the attention received by mainstream medicine since it's indexed by the national institutes of health, which is itself a reliable source. Little attention by a mainstream indexing entity suggests fringe topics; the NYT only suggests that it may one day be a treatment, not that it is.
- Alternative medicine is itself a fringe topic and its status on wikipedia is tentative and contested. You should carefully review WP:UNDUE as that is the main objection to the section in my mind, and discuss how it is not undue weight to emphasize this topic with essentially its own section. That section is not really about alternative medicine, I would consider it a coatrack for UVA1 therapy; retitling a previously removed section does not change the arguments against including the original content.
- Per our capitalization guidelines the section title is off (should be lower-case "m"); the citation should also be in the form of an inline citation and ideally using citation templates. Gregory House should also be removed from Systemic lupus erythematosus#See also as vandalism. WLU (talk) 00:57, 12 July 2008 (UTC)
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- FWIW, I support a discussion of UVA1 before unilaterally inserting it. I'd be reverting myself were it not for unusual circumstances. Anon, please make a better effort to convince other editors that there is merit to the section; a sub-page would be an ideal location to draft a section and solicit suggestions from more experienced editors. A civil discussion rather than an edit war will result in a better section that will be defended by other editors rather than removed. I would also suggest signing up for an account so it is easier to communicate (and a sub-page would be specifically yours). Thanks, WLU (talk) 01:22, 13 July 2008 (UTC)
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- thanks for the feedback - and yes, i need to review the guidelines, etc around here, but my god they all seem rather complex at this point ... ..that said, my ignorance of the rules notwithstanding, i don't understand some of the comments -- how is UVA1 not an alt treatment when the accepted standard lupus treatment(s), is, has been & will always be drugs? (drugs treatments are considered standard in western medicine) ...put another way, UVA1 is not approved by the FDA (or any other regulatory body) to treat lupus, yet it is used as a treatment, regardless of the number that employ it --- that seems to qualify UVA1 as an 'alt treatment' by any standard....24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
- BTW -why is my book still being mentioned? i'm not posting it.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
- you have a section called "Treatment" - the one line intro states: "There are several means of preventing and dealing with flares, including drugs, alternative medicine, and lifestyle changes." ... there are drug & lifestyle sub-heds, but not a word on alt med...your argument that alt med itself is a 'fringe' topic does nothing but help define what the nature of alt med is - treatments on the fringe - that means they are to be ignored? there are peer-reviewed studies that can be cited to back up the effectiveness of a few of these things so why not include them? (for example, even the FDA admits there's plenty of data that supports the effectiveness of glucosamine sulfate in reducing joint inflammation - it's a standard alt treatment for many lupus patients)-- maybe my questions will answered if i can find the time to study your operating procedures, but i've always thought an encyclopedia was supposed to be a comprehensive reference work ...as an outsider i must say your operating procedures really do seem to undermine your usefulness as a comprehensive reference - it's like you're throwing the baby out with the bath water.24.14.35.45 (talk) 15:44, 13 July 2008 (UTC)
A treatment is "alternative medicine" if no attempts are being made to prove its efficacy scientifically. Clearly, one would prefer benefits from UVA1 to be confirmed in trials, rather than it being lumped with aromatherapy and meditation?
The book is being mentioned because you are its author. Despite the fact that it is not being mentioned, attempts to mention a treatment that you have devised could easily be interpreted as self-promotion. This alone would be a good reason for you to await consensus, and accept what other users have to say when this happens.
If glucosamine has an evidence base (which it has in osteoarthritis but not AFAIK in lupus) then it is not alternative medicine anymore. Generally, it is very hard to provide an encyclopedic account of which alternative medical treatments are used, because they are so diverse, so poorly regulated and insufficiently discussed in reliable sources. I have no problem with mentioning saw palmetto on the benign prostatic hypertrophy page, or echinacea on common cold, or St John's wort on major depressive disorder, because they are discussed extensively in sources regarded as reliable on medical topics. JFW | T@lk 16:42, 13 July 2008 (UTC)
- for the record, my book does not mention a treatment which i have 'devised' ... my book describes a treatment that Dr. Hugh McGrath Jr has devised - what i've done is replicate his work & written about it.
- also for the record - because nothing treats the disease of lupus directly - only it's symptoms - you'll never find a supplement that has an evidence base for treating lupus --- just its symptoms, which lupus shares with other disorders....for example, look again at glucosamine -- the FDA states: "Preliminary research suggests that glucosamine affects cytokine-mediated pathways regulating inflammation and cartilage degradation and immune responses." http://www.fda.gov/ohrms/dockets/ac/04/briefing/4045b1_04_Summary%20GCSOA%20FAC.htm --- while the form of arthritis lupus patients suffer from does not include "cartilage degradation," there are cytokine-mediated pathways regulating joint inflammation which glucosamine can positively effect....since there's apparently no evidence base that's it's helpful for lupus patients too, but they use it nonetheless, by your definition it's still alternative medicine, so why not include it? ... i understand 'it is very hard to provide an encyclopedic account of which alternative medical treatments are used,' but i don't see why the difficulty of the task would prevent a bunch of bright guys like you to attempt an overview for the sake of comprehension.
- but to make sure i'm understanding your point, let me offer a made-up example --- if there were a large body of evidence that showed, say, hydrotherapy was an effective short-term therapy for the inflammation/pain associated with OA, but it was never tested on a population of lupus patients, are you saying hydrotherapy could never be mentioned in an article on lupus?
- as for your question: "Clearly, one would prefer benefits from UVA1 to be confirmed in trials, rather than it being lumped with aromatherapy and meditation?" ...benefits have been documented in McGrath's successfully completed phase 1 trials, and in a few independent follow-up european studies...but further trials will not occur until someone figures out how to make money on this treatment which now exists in the public domain....so i think it has very much in common with aromatherapy and meditation...another point - if lupus did not effect more than (what's the cut off?) 4000 people, it would qualify as an 'orhpan,' for the same financial reasons, but it's not - there's a couple million of us here in the US alone.24.14.35.45 (talk) 14:37, 14 July 2008 (UTC)
- but to make sure i'm understanding your point, let me offer a made-up example --- if there were a large body of evidence that showed, say, hydrotherapy was an effective short-term therapy for the inflammation/pain associated with OA, but it was never tested on a population of lupus patients, are you saying hydrotherapy could never be mentioned in an article on lupus?
- also for the record - because nothing treats the disease of lupus directly - only it's symptoms - you'll never find a supplement that has an evidence base for treating lupus --- just its symptoms, which lupus shares with other disorders....for example, look again at glucosamine -- the FDA states: "Preliminary research suggests that glucosamine affects cytokine-mediated pathways regulating inflammation and cartilage degradation and immune responses." http://www.fda.gov/ohrms/dockets/ac/04/briefing/4045b1_04_Summary%20GCSOA%20FAC.htm --- while the form of arthritis lupus patients suffer from does not include "cartilage degradation," there are cytokine-mediated pathways regulating joint inflammation which glucosamine can positively effect....since there's apparently no evidence base that's it's helpful for lupus patients too, but they use it nonetheless, by your definition it's still alternative medicine, so why not include it? ... i understand 'it is very hard to provide an encyclopedic account of which alternative medical treatments are used,' but i don't see why the difficulty of the task would prevent a bunch of bright guys like you to attempt an overview for the sake of comprehension.
(bing!)The problem is one of verifiability, not truth. In other words, UVA1 may be a miracle cure that solves all the problems of all lupus sufferers (i.e. it may be true that it is a valid, useful treatment), but until it is written up in a medically reliable source, we can not verify that it's true. Verifiability is the standard because without a source, we are essentially asserting that our opinion is correct. That would probably be original research, but the greater problem is what to do if two editors disagree over whose opinion is correct. The only reasonable solution on a project of wikipedia's scope is to insist on using only reliable sources to expand pages whenever there is a disagreement. In this case, as a medical condition the appropriate reliable sources are journal articles and peer-reviewed books.
Articles must also allocate space and text to represent primarily the mainstream opinion on a topic. In other words, the most appropriate focus for an article is the scientific consensus on a topic, which means most alternative treatments do not get much play as they are generally not scientifically evaluated or reported in peer-reviewed journals. There's a lot of theoretically useful treatments for conditions, but we should not report on them until it has been demonstrated and reported as actually being useful and used by a substantial number of patients and doctors to treat the condition. When the evidence suggests that UVA1 is no more used or attention given than other fringe treatments, placing a section in the article gives undue weight to a topic that is fundamentally not particularly noteworthy as a treatment. If, however, you can turn up a significant number of sources reviewing UVA1 treatment that demonstrates it is effective, or extensively used, then it becomes appropriate. The attention must be given in sources relevant to a medical topic - peer-reviewed journals and scholarly books by university and other presses noted for editorial oversight. WLU (talk) 15:08, 14 July 2008 (UTC)
- you want you want peer reviewed studies? no problem...here's some of what's available on line for free (at least the abstracts):
"Ultraviolet-A1 phototherapy modulates Th1/Th2 and Tc1/Tc2 balance in patients with systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/full/44/7/925 "Efficacy of UVA-1 cold light as an adjuvant therapy for systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/full/43/11/1402 "Ultraviolet-A light prolongs survival and improves immune function in (New Zealand black x New Zealand white)F1 hybrid mice." - http://www.ncbi.nlm.nih.gov/pubmed/3593437?dopt=Abstract "Review : Ultraviolet-A1 (340-400 nm) irradiation therapy in systemic lupus erythematosus" - http://lup.sagepub.com/cgi/content/abstract/5/4/269?ijkey=88b94ab398db0fc95edb6157fa3db060d659b50f&keytype2=tf_ipsecsha "Longterm ultraviolet-A1 irradiation therapy in systemic lupus erythematosus." - http://www.ncbi.nlm.nih.gov/pubmed/9195511?dopt=Abstract "Evidence that Singlet Oxygen-induced Human T Helper Cell Apoptosis Is the Basic Mechanism of Ultraviolet-A Radiation Phototherapy" - http://www.jem.org/cgi/content/abstract/186/10/1763?ijkey=0f861943ea7399c498e8f08e9b22dc5a32d05d3c&keytype2=tf_ipsecsha "Ultraviolet-A1 phototherapy modulates Th1/Th2 and Tc1/Tc2 balance in patients with systemic lupus erythematosus" - http://rheumatology.oxfordjournals.org/cgi/content/abstract/44/7/925?ijkey=defa25748e4e3907b6fb2067302663bdf1a6ecfd&keytype2=tf_ipsecsha "Elimination of anticardiolipin antibodies and cessation of cognitive decline in a UV-A1-irradiated systemic lupus erythematosus patient" - http://lup.sagepub.com/cgi/content/abstract/14/10/859?ijkey=28b9579c8b539046283c5998d9ed819b8b3cb116&keytype2=tf_ipsecsha
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- how many more do you need before you decide UVA1 deserves a mention?24.14.35.45 (talk) 15:37, 14 July 2008 (UTC)
- Great, I suggest you take those sources and draft a possibly new section on a sub-page (I can set it up if you'd like) and let us know once you are done. I would suggeset the use of footnotes and citation templates. WLU (talk) 15:42, 14 July 2008 (UTC)
- how many more do you need before you decide UVA1 deserves a mention?24.14.35.45 (talk) 15:37, 14 July 2008 (UTC)
- sounds like a lot of energy .... don't think i have enough to also start spending it on wikipedia, but thanks for your offer of help24.14.35.45 (talk) 16:35, 14 July 2008 (UTC)
OK, so perhaps we can conclude the discussion now. UVA1 is not yet ready for prime time, but can be mentioned when there is either evidence of widespread popularity or large studies that prove its benefits. I don't think a subpage is going to be of any benefit. JFW | T@lk 18:19, 14 July 2008 (UTC)
- Based on those sources, here is the sub-page with my comments on each. I'd say that more attention is needed in higher profile journals before a section should be added, but at least with a sub-page to start with it will be easier to integrate new information and add it if/when it happens. If it's a truly successful treatment, then it is inevitable and just a matter of time. So we might as well wait. WLU (talk) 20:28, 14 July 2008 (UTC)
- thanks again, but i can't edit the top section of the sub page you set up - there's no edit 'button' ...24.14.35.45 (talk) 22:45, 14 July 2008 (UTC)
[edit] simple treatment saving lives
Have you heard of the Road Back Foundation? There has been much success treating lupus and other connective tissue disorders with AP(antibiotic protocal). There are many testimonials of people that have given up hope, only to find this simple treatment affective. Check out the book by Henry scammell called"The Mew Arthritis Breakthrough". Grammies4god —Preceding unsigned comment added by Grammies4god (talk • contribs) 13:21, 14 October 2008 (UTC)
- This viewpoint has certainly been advanced on some pages, and on inspection of the evidence there is very little research showing any benefit from antibiotics. Moreover, there are concerns that long-term use of antibiotics might cause antibiotic resistance in bacteria. Finally, some antibiotics (such as minocycline) are known to be immunomodulators as well, indicating that we might as well use immunomodulators that don't carry the risk of antibiotic resistance.
- Antibiotic protocols are conspicuously absent from systematic reviews and narrative reviews in medical mainstream sources. This makes it very hard to include AP treated per WP:MEDRS. JFW | T@lk 13:40, 16 October 2008 (UTC)
[edit] You could have asked before removing
The finding has been reported on several studies. http://www.ncbi.nlm.nih.gov/pubmed/11221481 http://www.biomedexperts.com/Abstract.bme/14526478/EEG_examination_in_patients_with_systemic_lupus_erythematosus http://lib.bioinfo.pl/pmid:9660013 http://www.ingentaconnect.com/content/els/00134694/1996/00000098/00000005/art83589 http://www3.interscience.wiley.com/journal/120122847/abstract http://ard.bmj.com/cgi/reprint/37/4/357.pdf http://cat.inist.fr/?aModele=afficheN&cpsidt=16669598 —Preceding unsigned comment added by Inductionheating (talk • contribs) 08:15, 13 November 2008 (UTC)
- Could you clarify which edit you are referring to? If there are indeed typical EEG changes in people with SLE, what is their diagnostic and therapeutic relevance?
- In general, I would suggest posting PMID codes for these articles rather than URLs to various websites. All you need to do is type PMID and the number, and the wiki will turn it into a link to PubMed. JFW | T@lk 18:01, 13 November 2008 (UTC)
- I didn't sourced that info, because it has become a common finding. It's not typical as it is not a diagnostic tool. Whatever or not it is worthy of inclusion I do not know, I'll leave that to you. Inductionheating (talk) 19:47, 13 November 2008 (UTC)
"Common findings" usually still need a citation. In this case, I'm unsure if we need to mention EEG findings in asymptomatic lupus patients, because it would be pointless to do this investigation without expecting any information that would alter clinical management. JFW | T@lk 23:35, 13 November 2008 (UTC)
[edit] Distribution
Why is the disease so much more common in women? If it is known, it should be included. LordAmeth (talk) 03:35, 20 November 2008 (UTC)
- I agree that a good source on this would be useful. Women are generally more prone to autoimmune conditions. JFW | T@lk 16:16, 20 November 2008 (UTC)
- It's like several other autoimmune conditions which affects more women than men, parts of it has to do with hormal differences, testosterone modulate autoimmune response, it appears that estrogene does quite the opposit of what testosterone does. Sources could be provided about this but it would be more useful to add it in an article about autoimmune diseases in general. Also relevent is that generally the autoimmune diseases which affect more women that men, when they hit men it does it with a worst outcome. There are several suspected reasons for this but they fit better in a more general article about autoimmunity. Inductionheating (talk) 05:51, 26 November 2008 (UTC)
[edit] Just to be more precise: is it correct to say that it affects to hispanic women?
I mean, Systemic Luous Er.is not common among Spaniards. Shouldn't it say "latin americans" or "native south or central american" women. Citing Wikipedia: Hispanic (Spanish: hispano, hispánico) is a term that historically denoted relation to the ancient Hispania (geographically coinciding with the Iberian peninsula; modern day Spain, Portugal, Andorra, and Gibraltar) or to its pre-Roman peoples. The term is now used to convey the culture and peoples of countries formerly ruled by Spain [...]. Should it be corrected? —Preceding unsigned comment added by Karljoos (talk • contribs) 19:11, 28 December 2008 (UTC)
- We have to follow the wording used in the medical source. If the source says "hispanic," we must say "hispanic." The medical literature may have a precise definition of "hispanic" that is different from the way it's used elsewhere. The Wikipedia entry on Hispanic gives many meanings, and the most popular one seems to be primarily a political definition.
- Obviously native Americans from Mexico and Guatemala are for epidemiological purposes different populations than Europeans of Iberian descent, and you can't assume that a genetics-linked medical finding for one will be true for the other.
- But I noticed there was no source to support the claim that SLE is more common in hispanics and other groups. I checked that in Harrison's and there was no mention of that. In general, SLE is more common in populations as they live away from the equator and toward the poles, and that's the opposite of most American hispanic populations. I'll flag it [citation needed] and remove it if no one can come up with a source. Nbauman (talk) 19:46, 28 December 2008 (UTC)
- An extensive cohort study known as LUMINA was (is?) being conducted to assess the epidemiology of SLE in U.S. minorities. There's some data in PMID 15246029; perhaps it can be of use. Fvasconcellos (t·c) 19:53, 28 December 2008 (UTC)
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- I saw that. They're studying hispanic populations, but they don't say SLE is particularly prevalent in hispanic populations.
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- I just checked the NEJM review article on SLE, and they mention an increased prevalence in blacks, but don't mention anything about hispanics.
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- Obviously you can't assume that just because a disease is more prevalent in blacks, it's also more prevalent in hispanics. Or native Americans. Nbauman (talk) 00:04, 29 December 2008 (UTC)
- Well, of course. I was merely suggesting it as a possible source of relevant information, not a source to back up the statement currently in the article. I remember an article from a few years ago (around 2000–2001) stating the prevalence of SLE in Hispanics had never been reliably studied. Perhaps that's still the case? I'll try to track down a citation. Fvasconcellos (t·c) 11:26, 29 December 2008 (UTC)
- OK, it appears that particular statement came from the article's first reference (The Lupus Foundation of America): "Lupus is two to three times more prevalent among people of color, including African Americans, Hispanics/Latinos, Asians, and Native Americans." Fvasconcellos (t·c) 11:33, 29 December 2008 (UTC)
- Well, of course. I was merely suggesting it as a possible source of relevant information, not a source to back up the statement currently in the article. I remember an article from a few years ago (around 2000–2001) stating the prevalence of SLE in Hispanics had never been reliably studied. Perhaps that's still the case? I'll try to track down a citation. Fvasconcellos (t·c) 11:26, 29 December 2008 (UTC)
- Obviously you can't assume that just because a disease is more prevalent in blacks, it's also more prevalent in hispanics. Or native Americans. Nbauman (talk) 00:04, 29 December 2008 (UTC)
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- Then why does Harrison's, and the NEJM review article, only say that SLE is more prevalent among African Americans, but doesn't mention hispanics? I tried to find specific prevalence statistics by ethnic group, but I couldn't find any. I searched Google, and also searched PubMed for "((Hispanic Americans/statistics & numerical data) [MH]) AND ((Lupus Erythematosus, Systemic) [MH])" and couldn't find any citations. So I think your recollection is right. There are articles that say SLE is more aggressive among hispanic patients, but nothing about prevalence in the hispanic population. I can't find a peer-reviewed primary source for the claim that SLE is more prevalent among hispanics. I invite someone else to try. It might be mentioned incidentally in one of those LUMINA publications.
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- The Lupus Foundation of America may be a reliable source by Wikipedia definition, but that doesn't mean it's true. I checked a dozen mentions of "hispanic" on their web site, but couldn't find a source.
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- BTW, getting back to the original question that started this thread, Medline uses "Hispanic Americans" as a thesaurus term. So it has a very precise meaning. If that's the term a medical source uses, we can't change it. So Karljoos has a point. If the source was referring to hispanic Americans, the entry should reflect that. Nbauman (talk) 17:34, 29 December 2008 (UTC)
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- I found the article I was referring to—it's a 2001 review (PMID 11224734), and the abstract states "There have been no studies of the prevalence of osteoarthritis, rheumatoid arthritis, or systemic lupus erythematosus among Hispanic populations". Maybe there still haven't been any. I'll have a look at the LUMINA publications, but it won't be easy—over sixty articles using its data have been published.
- I agree that if the source for our current wording was indeed the Lupus Foundation of America, we don't even know how accurate it is; the website's statistics section doesn't say where it, well, got its statistics from :) If a more robust source (I won't say "reliable", because the foundation does appear to meet that definition) can't be found, perhaps the statement should be removed altogether. Fvasconcellos (t·c) 00:12, 30 December 2008 (UTC)
- That's the Wikipedia paradox -- it doesn't have to be reliable, it just has to be a WP:RS. In medical entries, I think the standards for WP:RS are by custom a bit stricter. Disease organizations do sometimes exaggerate the importance of their disease.
- If you do have access to those LUMINA publications, you can just start with the most recent 1 or 2, maybe a good review-type article. They often have a general introductory background with the current epidemiology. I wouldn't read 60 articles unless somebody gave me a grant to do it. Nbauman (talk) 16:56, 30 December 2008 (UTC)
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- (outdent) Well, I have access to only a few. I read the most recent one I could obtain and it summarized no relevant findings on prevalence. What I did find was a comprehensive August 2007 NIAMS report, Future Directions of Lupus Research. It has a "Special Populations" section that summarizes the most important LUMINA findings, but I found what matters most to this discussion in the report's "Epidemiology" section. It's in the public domain, so I'm quoting it:
- Accurate estimates of the number of people who have a disease – as a whole and within specific groups – are important for a number of reasons, including understanding the disease and its impact; predicting groups and individuals who are most likely to develop lupus and, thus, are candidates for screening and preventive care; and providing care and services to people with the disease. Getting accurate estimates and updating them periodically can also enable researchers to determine if disease incidence is increasing and if so, start taking steps to understand why.
- But estimates about the number of individuals with lupus vary widely, depending on the study from which the estimate was derived. Different study techniques, methodologies, populations and definitions of what constitutes lupus can lead to vastly different prevalence estimates. The range is large and tells us little about the true magnitude of the problem.
- What most researchers agree on is that lupus is more common in women than men and that African Americans, Afro-Caribbeans, Hispanics, Asians, and Native Americans are affected more commonly than Caucasians. But even the degree of that discrepancy is disputable. The estimates range from a five to nine or 10 times increase among those high-risk populations.
- Prevalence and incidence figures for other groups and specific lupus-related problems can be even more problematic.
- —Fvasconcellos (t·c) 19:08, 30 December 2008 (UTC)
- So, what do you think? Shall we correct it ot not? The problem is that the study is America centered, where the definition Hispanic is applied to all Spanish speaking people, when for epidemiological purposes European (= Spaniards) populations are different than those from Latin America. --Karljoos (talk) 00:54, 1 January 2009 (UTC)
No. "it affects Hispanic women" is right. 75.118.170.35 (talk) 23:33, 24 June 2009 (UTC)
[edit] MCOTW
This article is now MCOTW. The article has been the subject of longstanding gradual improvement, but it needs a push to maximum quality. Given its protean symptoms and uncertain etiology it is really tempting to get drawn into speculation, and therefore we need to be stricter than ever with the reliability of sources. I'm personally tempted to restrict the main sources to core general medical and rheumatological journals, and only general and systematic reviews are to be used.
These are the reviews that seem to be the most suitable:
- Lancet 2007 doi:10.1016/S0140-6736(07)60279-7
(from the Hughes/St Thomas group, well know to employ alternative criteria)
- NEJM 2008 doi:10.1056/NEJMra071297
(from Rahman/Isenberg, acknowledged experts)
- BMJ 2007 doi:10.1136/bmj.39358.519491.AD
(from BMJ, focus on pregnancy)
- BMJ 2006 doi:10.1136/bmj.332.7546.890
(from BMJ, by D'Cruz from the St Thomas group)
We definitely need to cover fairly recent developments (which the reviews will cover) such as accelerated atherosclerosis, the therapeutic utility of mycophenolate, overlap syndromes, childhood lupus, pregnancy in lupus patients, neonatal lupus. JFW | T@lk 10:57, 1 February 2009 (UTC)
[edit] Causes vs pathophysiology
Currently we have separate sections on causes and pathophysiology. The only real suspected causes for lupus, according to Rahman & Isenberg, are genetics, viral infections (none definitely identified, EBV suspected), drugs and sunlight. I think we should put these in a smaller "causes" section and put all other information on immune dysregulation and pathogenetic antibodies in a section on "pathophysiology" that also outlines the main pathological findings. JFW | T@lk 16:49, 1 February 2009 (UTC)
- Lancet lists sunlight, drugs, Epstein-Barr virus, abnormalities of apoptosis, abnormal signal transduction of toll-like receptors, cytokine patterns (interferon signature; decreased interleukin 2 from T cells), genetics (i.e. CRP, serum amyloid P genes, FcγR receptors, apoptosis errors) and occupational exposure to silica, pesticides and mercury. Sunlight and occupational exposure I have just put into 'lifestyle' under treatment, but I'd support your changes of it being moved to causes, and have the rest put into pathophysiology. —Cyclonenim (talk · contribs · email) 17:05, 1 February 2009 (UTC)
There is considerable evidence linking trans fat in food to autoimmune disease and raised levels of inflammatory markers, especially in women. One of the studies is 'Dietary intake of trans fatty acids and systemic inflammation in women' by Mozaffarian D, Pischon T, Hankinson SE, Rifai N, Joshipura K, Willett WC, Rimm EB, in the Am J Clin Nutr. 2004 Apr;79(4):606-12. PMID: 15051604 . Could it be possible that high trans fat diet actually causes S L E ? Fullwill (talk) 19:36, 29 July 2011 (UTC)
[edit] lupus vs SLE
I have just gone through and changed relevent uses of 'lupus' to SLE, as before article was alternating. Although I think it would read better if the word was used rather than the abbreviation. I have also realised a number of sections e.g. treatment where using the term 'Lupus erythematosus' alone - which I may of changed for SLE, but if they are not SLE they may be wrong ... you may have to revert my changes if the two aren't interchangeable for the section in this article. :( LeeVJ (talk) 20:24, 3 February 2009 (UTC)
[edit] Opening paragraph and bulleted list.
I'm not very familiar with Wikipedia editting so bear with me if I foul something up. The opening paragraph seems to jump to a bulletted list of... something, with no explanation of what that list is or why it's relevant. I THINK it's a list of similar diseases/variations, but don't have the expertise to write a transition or move it to a more appropriate section. 75.163.232.114 (talk) 06:41, 26 June 2009 (UTC)
- It is a list of other forms of lupus. It doesn't belong there or probably anywhere else in the article. JFW | T@lk 06:51, 28 June 2009 (UTC)
- Chronic cutaneous lupus erythematosus
- Discoid lupus erythematosus, a skin disorder that causes a red, raised rash on the face and scalp. Discoid lupus occasionally (1–5%) develops into SLE.[1]
- Chilblain lupus erythematosus (Hutchinson)
- Lupus erythematosus-lichen planus overlap syndrome
- Lupus erythematosus panniculitis (Lupus erythematosus profundus)
- Subacute cutaneous lupus erythematosus, which causes nonscarring skin lesions on patches of skin exposed to sunlight.[2]
- Tumid lupus erythematosus
- Verrucous lupus erythematosus (Hypertrophic lupus erythematosus)
- Neonatal lupus erythematosus, a rare disease affecting babies born to women with SLE, Sjögren's syndrome, or sometimes no autoimmune disorder. It is theorized that maternal antibodies attack the fetus, causing skin rash; liver problems; low blood counts, which gradually fade; and heart block, leading to bradycardia.[2]
- Childhood systemic lupus erythematosus, the pediatric variant of systemic lupus erythematosus.
- Drug-induced lupus erythematosus, a drug-induced form of SLE; this type of lupus can occur equally in either sex.
- Lupus nephritis, an inflammation of the kidneys caused by SLE.
- Complement deficiency syndromes
- These links might become part of a good "See also" section at the bottom of the articles. They seem to refer to other related WP articles beyond the scope of this one but of more interest to certain readers.
- Ocdnctx (talk) 19:17, 16 May 2011 (UTC)
[edit] Information about longevity
I'm wondering about this addition - the journal does not seem to be pubmed indexed, and may be on-line only in an uncertain journal. It also doesn't seem to appear in google scholar. Would it be possible to substitute a more obviously reliable publication? WLU (t) (c) Wikipedia's rules:simple/complex 23:10, 19 August 2009 (UTC)
[edit] Anaesthetic and Lupus
My doctor won't operate,he says they are scared of giving anaesthetic with the Lupus, why would this be,is it dangerous? —Preceding unsigned comment added by 41.19.3.49 (talk) 12:11, 4 September 2009 (UTC)
Possibly the agent used would not do your kidneys any favours. But as the user above stated, ask him...or her :) —Preceding unsigned comment added by 84.10.220.180 (talk) 19:24, 14 September 2009 (UTC)
203.211.107.129 (talk) 01:59, 11 January 2010 (UTC) I've got SLE with ANA and have low white blood cells etc but I've gone under General Anaesthetic twice since I found that I have lupus and had number local anaesthetic without any prob. It may be depend on your condition how far off or bad your SLE is? Better ask your doctor... :)
I WANT TO KNOW THE OUT COME OF LUPUS/SLE —Preceding unsigned comment added by 63.139.223.130 (talk) 20:44, 31 January 2010 (UTC)
[edit] Merge proposal
Stem cell transplantation for systemic lupus erythematosus is a tiny stub that should probably be merged into the treatment section here. WhatamIdoing (talk) 20:46, 17 February 2010 (UTC)
- It is also utterly experimental, and I even doubt that it should even be mentioned here unless a very good source is provided. I've sent the stub to AFD. JFW | T@lk 10:21, 18 February 2010 (UTC)
[edit] Merge proposal
Wondering if lupus erythematosus should be merged here and either redirected or turned into a disambig? Doc James (talk · contribs · email) 21:55, 17 May 2010 (UTC)
[edit] Images
We could use a real image rather than a drawing in the lead.Doc James (talk · contribs · email) 19:58, 28 May 2010 (UTC)
- Artists impression? Unbeleivable! No image at all would be preferable to such a woeful likeness. The "artist" (photoshop amatuer more like it) has overemphasised the subtle hues of the general case rash such that most people would, based on this image, miss an actual lupus rash when presented with the real thing. This is closer to a face painting than a lupus rash. Its a mockery and should be removed immediately, pending its replacement with a public domain reprentative image of a real general case. Abunyip (talk) 18:35, 27 July 2010 (UTC)
I completely agree. The malar rash in this drawing does not correspond to the actual regions of light exposure at all and looks nothing like the actual rash seen on patients with SLE. This is a travesty. I'm going to remove the image, as I agree that no image is better than a misleading image. Hopefully someone can find an image that is actually illustrative of the malar rash seen in SLE. —Preceding unsigned comment added by 173.52.182.136 (talk) 16:05, 5 March 2011 (UTC)
[edit] Lupus and the brain
This should really be merged here.Doc James (talk · contribs · email) 20:20, 31 May 2010 (UTC)
- Merged. Doc James (talk · contribs · email) 18:45, 8 September 2010 (UTC)
- Nice work! :) By the way, do you think you can get your hands on any recent scans? That "brain scan" image (I guess it's a scintigram?) is a whopping 32 years old. Conventional radionuclide scanning has long been superseded by MRI and SPECT in this setting. Fvasconcellos (t·c) 19:33, 8 September 2010 (UTC)
[edit] Picture of lupus butterfly rash
This is actually a poor picture of the butterfly rash, probably since it's not real. Classically, the lupus rash "spares the nasolabial folds" which this picture doesn't do. Type in lupus rash in Google images and you will see what I mean. Almost every time the nasolabial folds are spared. I happened to notice this since I was studying for my boards right now and something looked off about the picture.Chrisscrewball (talk) 07:59, 15 November 2010 (UTC)
- Unless someone uploads a higher quality image with the right permissions this is not likely to change. JFW | T@lk 08:53, 15 November 2010 (UTC)
[edit] chances are
what are my chances when being positive in ANA and negative in anti strand and anti smith
- No point asking a complete bunch of strangers on a website. At the same time, ANA positivity is exceedingly common. What matters is the clinical presentation (i.e. symptoms), the ANA titer and the IF pattern. JFW | T@lk 14:03, 20 December 2010 (UTC)
[edit] Aspartame
Shouldn't something be mentioned about the link with Aspartame? Saw nothing about this in the article. —Preceding unsigned comment added by 82.39.48.187 (talk) 15:17, 30 January 2011 (UTC)
- Provide a reliable medical source, and it might be worthy of inclusion. More likely, it sounds like it might be a bit tenuous. JFW | T@lk 18:24, 30 January 2011 (UTC)
[edit] kids?
can kids get lupus? —Preceding unsigned comment added by 76.186.15.139 (talk) 00:04, 16 March 2011 (UTC)
- Yes, but it is very rare. More common in those with inborn deficiencies of the complement system. JFW | T@lk 00:38, 16 March 2011 (UTC)
[edit] Needs an introductory picture of a butterfly rash
Needs an introductory picture of a butterfly rash —Preceding unsigned comment added by Ocdnctx (talk • contribs) 19:11, 16 May 2011 (UTC)
- Please find us one. We used to display a photoshopped one that was not illustrative. JFW | T@lk 13:06, 17 May 2011 (UTC)
-
-
- Here's a link to a few pictures: http://cure4lupus.org/store/index.php?main_page=page&id=187&chapter=1. Could we ask permission to use one? The second one down is especially good, because it illustrates that it doesn't really look like a rash in the usual sense (not 3-d), just a serious but oddly localized sunburn. You can also see that it doesn't extend as far back on the cheeks as the drawing here does. This is almost exactly what mine looked like. I'm in remission now, but I promise to submit a photo to WP should I be unfortunate enough to get that horror-show redface again.--TEHodson 21:14, 29 July 2011 (UTC)
- Can we use a link in the article?--TEHodson 21:15, 29 July 2011 (UTC)
-
File:Lupus facial rash.jpgJidanni (talk) 15:18, 30 September 2011 (UTC)
[edit] File:Lupus Brain.jpg Nominated for Deletion
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[edit] Contagious?
The "Transmission" section should come right out and say if it is contagious using plain English. Jidanni (talk) 15:20, 30 September 2011 (UTC)
[edit] File:Lupus facial rash.jpg Nominated for Deletion
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