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Ultra Violet Light Therapy, McGrath et al

Discussion in 'Complementary therapies' started by Erskine, Jan 19, 2006.

  1. Erskine

    Erskine Registered

    hi all, i'm new to this. had lupus for 15+ years, been controlling it mostly with alt med stuff till it got way out of control suddenly.

    i'm starting this topic because i'm trying to get more info on ultraviolet light therapy. there aren't many people doing it yet, you can see the study info at:

    http://content.karger.com/ProdukteDB/produ...ArtikelNr=81489

    there are many other abstracts, all legit study based. McGrath at louisiana state university is the number one researcher in the u.s. at this point. there is also a book about these therapies, Lupus Underground. you can find it at lupusunderground.com. there are abstracts from studies in germany i've also reviewed, all very thorough, but in german. (i'm fluent.) so far everything looks positive and legit. but too slow.

    please look at this info and tell me if it rings any bells. i'm looking for anything and anyone who has anything to support or deny these findings. i'll be adding to the topic as my research continues.

    thanks.
     
  2. Raglet

    Raglet Registered

    hmm, yep, a vague bell is ringing - something about some part of uv light being shown to improve sle (not the entire uv of course, that worsens lupus) ...... I just can't remember, it was around a few years ago and I haven't hear of anything since, which tends to make me think it wasn't very promising or we would all know about it.

    Clare, can you remember anything about it ? From memory it definitely wasn't a snake oil remedy, it was in a medical journal or something, just can't remember what or where though

    raglet
     
  3. Lily

    Lily Registered

    Hi,

    Yes Clare spoke to someone about this McGrath guy, she does know a bit about it and his claims were questionable according to some of his peers. Which would explain why everyone hasnt rushed out and tried it on us I guess.

    I'll let her fill you in when she is not mid-air flying [​IMG] Give her a few days.

    love
    Lily
     
  4. woodstork

    woodstork Guest

    I'm not sure about the ultra. light (but I would like to know). I was just curious about what alt. med therapy you have been taking for 15 years?
    Thanks.
     
  5. raggedyann1

    raggedyann1 Registered

    Erskine,

    This came up a couple months ago so do a search of this forum and I think you will find the information that Clare had at the time. I will say when it came up I went and checked my scleroderma site and found no new information for sclero which tells me that it hasn't gone anywhere in the last few years. But do search this forum to see. I would find it for you but am not well myself today.

    Karen
     
  6. Erskine

    Erskine Registered

    wow, i'll try to reply to all these comments:
    karen: thank you for looking into this further for me. i did a search of the forum, but it showed no results with the keywords i used. any help would be greatly appreciated. i'm new to the whole forum process, and i'm aware i may have missed an obvious way to search the archives that might have produced the info i was looking for.

    lily: "Yes Clare spoke to someone about this McGrath guy, she does know a bit about it and his claims were questionable according to some of his peers." the european meta-studies i looked at have been able to duplicate his results. there have also been several similar studies done in the u.s. that have also had similar positive results. however, you stated "Which would explain why everyone hasnt rushed out and tried it on us I guess. " i empathise with the seeming validity of the statement, but JAMA published an interesting study demonstrating it took longer than 20 years for physicians to routinely prescribe folic acid to pregnant women despite all the overwhelming evidence showing it was necassary and introduced no new risks. efficacy is not always the defining factor in availability. thank you for the comment nonetheless, as it contributes to an understanding of the current consensus on this treatment.

    any leads, or opinions, are greatly appreciated.
     
  7. Lily

    Lily Registered

    Karen the information is not on the forum, but you are right in saying its been discussed [​IMG]

    Erskine, its interesting that you have found studies that duplicated his results, we'd be interested in seeing them, so if you could post them it would be helpful. We all try and assist each others knowledge and understanding here.

    To clarify and on a more personal note I guess what I was trying to say was that in the position I'm in I would be reluctant to try out this therapy unless I had a LOT of hard cold evidence it worked and would have no adverse effects on me. I cant risk making my condition worse, my balance is precarious as it is.

    And yes its true that with conventional medicines and therapies they are tested and re-tested again and it can take a long time for something to be recognised and approved by the medical profession. But then it also takes a long time for adverse results to surface in some cases and be attributed to a particular drug or treatment.

    Not ideal for us but when you are dealing with a life-threatening disease which is the case for many here. However its a safer option for now until more is known.

    Many of us have tried various things which we thought may be helpful, only to find ourselves still on the merry-go-round and no proof that it actually did make a difference in the long run. We sometimes attribute an improvement to certain things, but if we are still taking those things and we come out of remission we realise that it may have been pure co-incidence and it wasnt that that helped us in the first place. Lupus is reknowned for coming and going.

    I dont have the leeway anymore to try out things that 'might' work or things that could cause me an adverse reaction. Its essential to research options and decide for ourselves and each and every one of us is different.

    A lot of the problems come about because even though trials are done and things demonstrated we still have to bear in mind that no-one knows what effect that would have on the other meds we take. It can become a game of russian roulette for some. And whilst we may seem conservative here in our attitudes, we would hate to recommend or seem to condone a particular treatment which may cause someone harm, some of our members are quite vulnerable and clutching at straws at times. So we like to try and present all the facts and then ultimately its up to them in the end - as long as they go in with eyes wide open. So we welcome discussion and new theories as to what may or may not be helpful in managing our disease.

    Clare will probably put her 2 cents worth in when she comes back. The above is my personal situation and opinion and for each and every one of us it will be different. No two lupies are the same.

    love
    Lily
     
  8. Erskine

    Erskine Registered

    Roxana: "I was just curious about what alt. med therapy you have been taking for 15 years?"

    hi roxana,
    the list is very long. let me give you some background: i was a crewchief on fighter planes in the airforce when i first got symptomatic. using suppliments and diet, i was able to control the symptoms. later, i trained at the conservatory of luxembourg, became a successful opera singer, and the symptoms came back. again, i altered my diet, used everything from homeopathy to magnet therapy to keep singing, and it kept me going for a few more years. eventually, i started having real problems breathing. my o2 sats were in the high 80's and i was still trying to sing big roles, too tired to stand much less sing. if you know anything about the military or opera, you know they have one thing in common: seniority trumps competency. i soon learned, medicine works the same. for me, results counted, not credentials. if someone had a claim of efficacy, i tried it, and that was often a waste of time, energy and money. so i started to do the same thing i did in opera and airplanes: look at the data and ignore the sales pitch. the problem was getting access to the data. my wife (former ballet dancer with cfs) and i apprenticed to a homeopath and a naturopath in germany, and that gave us the standing to talk to the people doing alot of alt med research there. eventually, i became too sick to sing, and started practicing full time. in 1996 i gave up my position at the munich state opera to move back to the states and practice here. by 2000, i was still stable, but struggling with my symptoms. we (my wife and i) were seeing 60 patients a week, and all hell broke loose when i developed massive effusion in the lungs. at first we thought it was just pleurisy, but i nearly died as the drs. struggled to control the effusion. we tried every major alt med alternative to meds out there. i was also studying full time at the International Institute of Chinese Medicine at the time, and had constant access to some of the best people in that field, all to no avail. meds are what saved my life. alt med allowed me to take lots more meds than would normally be safe.

    in closing, i would say this: alt medicine has not provided a cure for lupus i could find despite great access, and i can drop a lot of names of people who say they've been successful and haven't been able to prove it once i looked at their raw data. everyone i spoke with was not being deceptive, they simpley didn't understand lupus well enough to differentiate subjective improvement from changes in blood work. most didn't even know a positive ana turning negative is proof of nothing. alt med does offer a way to reduce med usage and increase med efficacy. it has allowed me to work 60 and 80 hr weeks, even when i'm flaring. but in me, the disease continues to progress. this flare has lasted 4 years. but other than my lungs, i've had no serious organ involvement, and my increbily sceptical doctors(the kind i like best) attribute that to my proactive use of alt med.

    if you have specific questions about a particular therapy, i will answer what i can, and refer you to the sources i used to draw the conclusions i've come to. i don't believe in spreading opinions; i believe in sharing research, and you can draw your own conclusions.
     
  9. Erskine

    Erskine Registered

    Lily,
    thank you so much for saying all the wonderful stuff that needs to be said. you're absolutely right. caution is so important, and i've been on that merry-go-round far too many times to recommend it to anyone else.

    the reason i decided to join this forum was to find out what anyone else might know about UVA1 therapy. as i surfed the net, i could find the studies, but no comments from real people with real symptoms and real experience with this therapy. i completely agree with the ground rules of the forum. the more data on this i can get the better. i have very good drs more than willing to monitor my bloodwork daily if i decide to try this out. we work as a team; i provide the data, and if we agree there's enough valid stuff there to give it a try, we go ahead and give it a try.

    of course, as i trolled the forum for the info i was looking for, and contacted manufacturors to provide me with equipement to try this all out, i realized that even a dead end would help others if i could present the data in such a manner that they could pass it on to their physicians and other forums. step one is finding every bit of hard evidence i can, pro and con.

    i also realized in last night's chat that i have access to tons of data i've already used to eliminate things like "the lupus diet" as a cure, and a lot of people would benefit from that information.

    so thank you very much for your feedback. your comments have saved me the effort of qualifying my own comments with the same concerns. i wish i had joined sooner.
     
  10. raggedyann1

    raggedyann1 Registered

    Erskine,

    Can you please link us to the studies that have been done on the uva therapy? That is one of the questions here. All credible medical research is available online with Pubmed I believe (could be wrong about the name) and so abstracts at a minimum are available.

    You will also find here that most of us have tried various alternative and complementary therapies but having additional experience from someone who has tried them and succeeded or failed is always welcome.

    I am very concerned by your statement that you have been flaring for 4 years. It is totally unadvisable for us to exercise thru the pain that will make lupus worse. Working long hours can also be a problem for keeping lupus under control. Just some thoughts that could be part of the reason why you are so very sick and flaring for so long. If symptoms are masked and covered up it makes it more difficult for your rheumatologist to treat you.

    I do agree that it takes a long time for general medical doctors to be up to snuff on current treatment practices. However many of us here on this site see top doctors in lupus and connective tissue diseases. If a new treatment is available or a complementary treatment proved successful our doctors will have us try them.
     
  11. Erskine

    Erskine Registered

    "Can you please link us to the studies that have been done on the uva therapy?"

    this first link is a gold mine. it references other studies that can be reviewed from this site.

    http://www.biomedcentral.com/1471-5945/4/11
    The first study on UVA1 phototherapy in subacute cutaneous LE appeared in 1993 [73]. A nine week series of UVA1 phototherapy leading to a cumulative dose of 186 J/cm2 had been administered. Thereafter, an impressive improvement of LE lesions was noted. In another uncontrolled study conducted in 1994, ten patients with systemic LE were treated with 6 J/cm2 for 15 sessions during a period of three weeks [74]. Four of them continued treatment for eight months. The authors could verify a marked clinical improvement combined with a decrease of autoantibody concentration. Since then, two randomized double-blind placebo-controlled cross-over studies were performed. First, McGrath et al. reported in a two-phase study two groups of patients, one receiving 6 J/cm2 UVA1 five times a week for three weeks followed by a three week exposure of placebo visible light, the other vice versa [75]. Twenty-five patients completed this phase of the study. Both procedures were followed by an unblinded exposure of progressively decreasing UVA1 levels. Taking clinical as well as serological data in account, the authors proposed that low-dose UVA1 phototherapy might be superior to visible light irradiation. Second, Poldermann et al. tried to compare exactly the two different groups in a total of eleven patients [76]. Although no statistically significant difference between the two groups could be evaluated after an exposure of three weeks including 6 J/cm2 cold-light UVA1 five times weekly, significant clinical improvement was restricted to the UVA1 group. Apart from the short term benefit following UVA1 phototherapy, Molina et al. were also able to describe a long term benefit following low-dose UVA1 treatment (once/twice per week, 6?15 J/cm2) for a mean impressive period of 3.4 years in six patients of their former study [77]. Additionally, recent data of a case report suggest that UVA1 might contribute to a reversal of brain dysfunction and may also improve covered discoid lupus lesions via unknown systemic pathways [78]. As to our knowledge, no positive effects of PUVA treatment have been reported so far.
    "Even though holding the risk of carcinogenesis, photoaging or UV-induced exacerbation, UVA phototherapy seems to exhibit a tolerable risk/benefit ratio at least in systemic sclerosis, localized scleroderma, extragenital lichen sclerosus et atrophicus, sclerodermoid graft-versus-host disease, lupus erythematosus and a number of sclerotic rarities.
    Conclusions: Based on the data retrieved from the literature, therapeutic UVA exposure seems to be effective in connective tissue diseases and related disorders. However, more controlled investigations are needed in order to establish a clear-cut catalogue of indications."

    http://content.karger.com/ProdukteDB/produ...ArtikelNr=81489
    "A distinct improvement of erythemas and sclerosis could be achieved by means of low-dose UVA1 phototherapy which was applied with escalating single doses of 3-12 J/cm2 for 35 consecutive days."



    "I am very concerned by your statement that you have been flaring for 4 years."

    so am i. no med has worked to control it, except 150-300mg of indocin. (80mg of pred iv had no impact, and that was after months of that kind of dosage.) no organ damage though, so no chemo. several docs agree on that.

    "It is totally unadvisable for us to exercise thru the pain that will make lupus worse."

    that is not true for everyone. my pain worsens without exercise. i hate doing it, it's horrible torture, but when i don't, the pain is worse. my docs agree, the bloodwork get's worse too. everyone's lupus is different.

    "Working long hours can also be a problem for keeping lupus under control."
    you'd think so, wouldn't you? my best friend and i decided to take a step back from assumptions and track the info in a database, and see if it's true. after three months of filling out forms, the data said something else: in my case, negative stress makes my symptoms worse. positive stress seems to have no effect, or a slightly positive effect. so i only work on stuff i love to do, and that's within the scope of my energy levels. and voila, long hours have no impact. in case you're curious, i ran the results by my docs. they agreed.

    "Just some thoughts that could be part of the reason why you are so very sick and flaring for so long. If symptoms are masked and covered up it makes it more difficult for your rheumatologist to treat you."

    actually, i'm very sick because i have an extremely aggresive form of lupus. and after a year of doing nothing but rest, and then a year of various other ideas that had no impact, i said screw it, and did what i felt best, and my docs said, wow, no change. i see my 2 rheum docs, head of rheum VAMC, and head of rheum, u of newmexico, every 6 weeks or so. i do blood work when i'm feeling bad, every 3 or 4 weeks, and at least every 6 weeks. they aren't worried about my lifestyle, they're worried about why my antidsdna numbers haven't come down in 4 years, why my compliments are too low.

    " If a new treatment is available or a complementary treatment proved successful our doctors will have us try them."

    the study in jama on folic acid says we may be wrong to assume that. we must be our own advocates. would you agree with that?
     
  12. raggedyann1

    raggedyann1 Registered

    Erskine,

    thank you for the links I will read them in depth when I have more energy.

    I am surprised about exercise, I am guessing that you also checked how you do with just minimal exercise instead of such a big workout? That is not a normal reaction for the majority of lupus patients but we are all different. I do range of motion exercises almost daily and then have a recumbant stationary bike that I ride for varying lengths of time depending on my pain levels that day, it is the one piece of exercise equipment that doesn't aggravate my feet. I know that if I dont do at least the ROM that my pain levels in certain areas of my body increase.

    Curious about what medications you have had besides prednisone. Have you been on imuran, cellcept, cytoxan? and are you trying to get insurance approval for Rituxan? That is the newest treatment for lupus that is still off-label but showing good results for many lupus patients already. IF you read thru the med forum here you will see the various discussions of people who are currently or recently had rituxan treatment. Some patients unfortunately have to stay on large doses of steroids the rest of their lives.

    Of course every patient should be their own advocate. What I was saying is that some of us have the top lupus docs treating us and those doctors stay up to date on what is going on in the world of lupus. There are hundreds of horror stories on this site of members who had doctors that were clueless about lupus or at least clueless as to current treatment protocol. There are an equal number of replies helping patients find new doctors that will be up to date. We all spend time helping new comers learn to become their own advocates. It is critical that we are partners in our treatment process. I think on that point you simply mis-understood me.

    Please understand that my questions to you are not really about you but for the silent member and all the visitors that read posts on this site everyday. While exercise has proved to be good for you that is not true for most lupus patients. Most of the time besides being concerned for the member I am responding to/for I am equally aware of the rest that read the posts.

    Take care,
    Karen
     
  13. Erskine

    Erskine Registered

    from karen:
    "I am surprised about exercise, I am guessing that you also checked how you do with just minimal exercise instead of such a big workout?"

    i have, my testosterone drops like a rock, and that means more fatigue and less pain tolerance. as you said, it's definitely not for most sle patients. for me, aerobic excercise is the worst. no oxygen, pain, and even lower testosterone than no exercise at all.

    " I know that if I dont do at least the ROM that my pain levels in certain areas of my body increase. "
    same for me, after ten days of no exercise, i'm on demerol again. i've managed to avoid that for 6 months.

    "Have you been on imuran, cellcept, cytoxan?"
    i begged to be put on it, but everyone agreed, it's best reserved for organ involvement, particularly kidneys. since 150mg-300mg indocin/indomethacin keeps most symptoms in check, and i've been able to bring keep creatinine levels safe through supplementation, they say lets way till we have organ problems.

    "and are you trying to get insurance approval for Rituxan?"
    no, i'm stable even if i am flaring. they want me to try areva, but i'm not anxious to try that.

    "It is critical that we are partners in our treatment process. I think on that point you simply mis-understood me."

    i'm sure i did. i guess the best reason for answering this all is that i couldn't find anyone who had experienced what i did in lookig through the forums. sure, there are many commonalities, but there are also alot of points where my experience is far from the norm. if hearing about those experiences leads to a question a reader can ask a doctor that helps them in some way, then it was worth the effort. but i am well aware, i'm not the average sle patient. i'm male, that alone means alot that works for me won't work for others.

    thank you for all your feedback as i learn the delicate balance of contributing to this forum and finding answers to my own questions.
     
  14. flowergarden

    flowergarden Guest

    Interesting topic, as one of my docs sent me an article about this treatment the other day. He wants me to approach my rheumy about it, if I'm interested.

    As he sent me copies from a magazine, I don't know if it's online, although I did see a site listed: Lupus Journal. It's by Dr. McGrath, and is entitled, Elimination of anticardiolipin antibodies and cessation of cognitive decline in a UV-A1-irraddiated systemic lupus erythematosus patient.

    Lupus (2005) 14, 859-861.

    As I have aCl antibodies and considerable cognitive decline, I'm interested in learning more about it.

    Thanks for the info, Erskine. I will be reading up on it.
     
  15. jarsofclay

    jarsofclay Guest

    Maybe I am really dumb and shouldn't even post this, but wouldn't UV light worsen lupus? Seems to me that too much exposure to the sun makes me flare.. Isn't that UV? or am I misunderstood about the subject?

    I really have no idea..

    As far as exercise goes.. I am amazed at lupus who can go and do.. The more I go and do the more I send myself into the depths of a flare... really stinks.

    Maybe I am just wierd.
     
  16. Lily

    Lily Registered

    Erskine are you having regular urinalysis done as well as your bloods?

    love
    Lily
     
  17. Tom

    Tom Old Timer

    Erskine,

    I guess I will start here:
    QUOTE
    alt med does offer a way to reduce med usage and increase med efficacy. it has allowed me to work 60 and 80 hr weeks, even when i'm flaring. but in me, the disease continues to progress. this flare has lasted 4 years. but other than my lungs, i've had no serious organ involvement, and my increbily sceptical doctors(the kind i like best) attribute that to my proactive use of alt med.[/b][/quote]
    Wow, you are certainly proof that Lupus affects us all differently. Flaring for 4 years has to be awful and for most of us, this would keep us in a flare or in the hospital. I can certainly understand your drive to search for things to help you and I'm glad you have good doctors working with you. I on the other hand like to play it safe and keep my drug therapy down to the minimum, going with what works on a high percentage scale and what makes a difference for me.
    QUOTE
    sure, there are many commonalities, but there are also alot of points where my experience is far from the norm. but i am well aware, i'm not the average sle patient. i'm male, that alone means alot that works for me won't work for others.[/b][/quote]
    I think the aspect of gender differences with Lupus is very small if you compare across the board. Since Lupus can affect any organ in the body, I think the differences are mainly reproductive systems. Hormonal swings affect both sexes. I read that Sjogrens syndrome is less common for males but that we have an increased frequency of seizures, immune-mediated anaemia & lupus anticoagulant. I have to add in that kidney involment seems to be very high based on the men I have talked to with SLE thus far.

    It will be interesting to see how you do long term. Good luck on your quest and I look forward to hearing how it all works for you.
     
  18. Erskine

    Erskine Registered

    QUOTE(Lily @ Jan 20 2006, 04:58 AM) [post=391055]Quoted post[/post]

    Erskine are you having regular urinalysis done as well as your bloods?

    love
    Lily
    [/b][/quote]


    yep. i'm getting very good at it. i can still remember a time when it was difficult to pee on demand, but sle has given me quite a bit of control over that. i need to put that on my list of "why having sle has been good to me." #18: i can now pee on demand.

    and the test look good, so says my doc.

    QUOTE(flowergarden @ Jan 19 2006, 10:47 PM) [post=391035]Quoted post[/post]

    As he sent me copies from a magazine, I don't know if it's online, although I did see a site listed: Lupus Journal. It's by Dr. McGrath, and is entitled, Elimination of anticardiolipin antibodies and cessation of cognitive decline in a UV-A1-irraddiated systemic lupus erythematosus patient.

    Lupus (2005) 14, 859-861.

    [/b][/quote]

    thank you thank you thank you.

    i haven't been able to find anything more recent from mcgrath than 2003. and this is certainly a reputable publication.

    you might want to see if you can borrow a copy of "lupus underground" by anthony debartolo. you can google him. he's an investigative reporter with sle who based his book on mcgrath's studies. i haven't read it yet, but it's on order. i'll comment on this topic when it comes in.

    thank you again. please post anything your rheum has to say, neg or pos, if you're up to it. i'm trying to compile stuff to give my docs.

    erskine

    QUOTE(jarsofclay @ Jan 20 2006, 01:34 AM) [post=391041]Quoted post[/post]

    Maybe I am really dumb and shouldn't even post this, but wouldn't UV light worsen lupus? Seems to me that too much exposure to the sun makes me flare.. Isn't that UV? or am I misunderstood about the subject?

    I really have no idea..

    As far as exercise goes.. I am amazed at lupus who can go and do.. The more I go and do the more I send myself into the depths of a flare... really stinks.

    Maybe I am just wierd.
    [/b][/quote]

    apparently, there's a difference between UVB and UVA. most sun screen just covers UVB. from what i understand, lupus flares in photosensitives are caused by UVB exposure. to be safe, just consider all sunlight UV exposure as a probable cause of flares. and you're not dumb, you're just too curious to pretend you're a genius who knows it all. i admire that.

    sounds like your reaction to excercise is pretty common in sle. that would make you more normal than weird. it would appear that i am the weird one. find what's right for you and stick to it. what's right for others can be a starting point for a great discussion with your doc. maybe it's something you can try, maybe not. either way, get help figuring it out.
     
  19. Erskine

    Erskine Registered

    QUOTE(Tom @ Jan 20 2006, 01:33 PM) [post=391119]Quoted post[/post]

    I on the other hand like to play it safe and keep my drug therapy down to the minimum, going with what works on a high percentage scale and what makes a difference for me.[/b][/quote]

    i'm on the same page with the minimum meds, and high %. if anything else had worked, we'd have moved to that.

    QUOTE

    I think the aspect of gender differences with Lupus is very small if you compare across the board.[/b][/quote]

    that's a comparison i'd like to see actually studied more closely.

    QUOTE
    Since Lupus can affect any organ in the body, I think the differences are mainly reproductive systems. Hormonal swings affect both sexes.[/b][/quote]

    i don't disagree with you, but you might want to look into that idea more closely. my rheum totally disagrees. he thinks there are distinct differences in day to day problems and response to treatment. overall outcomes may be similar, but that doesn't mean everything else is. i'll defer to his opinion as he sees sle patients almost exclusively, male and female. just look at the latest studies in how women respond to aspirin versus men.

    QUOTE
    I read that Sjogrens syndrome is less common for males but that we have an increased frequency of seizures, immune-mediated anaemia & lupus anticoagulant. I have to add in that kidney involment seems to be very high based on the men I have talked to with SLE thus far. [/b][/quote]

    this illustrates my point exactly.

    be well,
    erskine
     
  20. Lily

    Lily Registered

    Hi Erskine,

    Yes definitely advisable to choose a broad spectrum sunscreen that filters both UVA & UVB rays. I think the majority of the ones on the market today do that and thats what I was advised by a Professor of Dermatology and the Prof who looks after my Lupus.


    QUOTE
    apparently, there's a difference between UVB and UVA. most sun screen just covers UVB. from what i understand, lupus flares in photosensitives are caused by UVB exposure. to be safe, just consider all sunlight UV exposure as a probable cause of flares. and you're not dumb, you're just too curious to pretend you're a genius who knows it all. i admire that.[/b][/quote]



    http://www.lupus.org/education/articles/li...ensitivity.html

    Why are people with lupus so photosensitive?

    The science of sunlight in lupus is complex and poorly understood. Several studies over the last 30 years have examined the role of ultraviolet (UV) light in lupus.

    UV light is invisible light from the sun with a shorter wavelength than visible light. UV is divided into UVA, UVB and UVC (which doesn't reach us because it is absorbed by the atmosphere). This part of the light spectrum is illustrated in Figure 1.

    In general, UVA ages the skin and UVB burns (i.e. "A ages, B burns"). Early studies from the 1960s suggested that only UVB was important in causing photosensitivity in lupus.


    However, more recent studies have shown that UVA can also cause skin problems in lupus. The substances in the skin of individuals with lupus that react with the UV light are unknown, but suspects include various proteins as well as genetic material (DNA and RNA).


    It does mention McGraths studies in this article but also puts in a note of caution as long term effects of UVA-1 (the light source he did his studies with) because the long term effects are unknown esp as far as skin cancers, aging etc are concerned.

    Here's an interesting article on the three forms of UVA light.

    http://en.wikipedia.org/wiki/Ultraviolet_r..._and_protection

    love
    Lily
     

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