Ultra Violet Light Therapy, McGrath et al

[Erskine]

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 (http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ProduktNr=224164&Ausgabe=230516&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.

[Raglet]

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

[Lily]

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 style_emoticons/<#EMO_DIR#>/laugh.gif Give her a few days.

love
Lily

[woodstork]

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.

[raggedyann1]

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

[Erskine]

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.

[Lily]

Karen the information is not on the forum, but you are right in saying its been discussed style_emoticons/<#EMO_DIR#>/biggrin.gif

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

[Erskine]

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 **** 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.

[Erskine]

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.

[raggedyann1]

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.

[Erskine]

"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 (http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ProduktNr=224164&Ausgabe=230516&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?

[raggedyann1]

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

[Erskine]

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.

[flowergarden]

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 (http://www.lupus-journal.com). 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.

[jarsofclay]

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.

[Lily]

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

love
Lily

[Tom]

Erskine,

I guess I will start here:
<div class='quotetop'>QUOTE</div><div class='quotemain'>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.
<div class='quotetop'>QUOTE</div><div class='quotemain'>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.

[Erskine]

<div class='quotetop'>QUOTE(Lily @ Jan 20 2006, 04:58 AM) Quoted post</div><div class='quotemain'>
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.

<div class='quotetop'>QUOTE(flowergarden @ Jan 19 2006, 10:47 PM) Quoted post</div><div class='quotemain'>
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 (http://www.lupus-journal.com). 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

<div class='quotetop'>QUOTE(jarsofclay @ Jan 20 2006, 01:34 AM) Quoted post</div><div class='quotemain'>
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.

[Erskine]

<div class='quotetop'>QUOTE(Tom @ Jan 20 2006, 01:33 PM) Quoted post</div><div class='quotemain'>
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.

<div class='quotetop'>QUOTE</div><div class='quotemain'>
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.

<div class='quotetop'>QUOTE</div><div class='quotemain'>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.

<div class='quotetop'>QUOTE</div><div class='quotemain'>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

[Lily]

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.


<div class='quotetop'>QUOTE</div><div class='quotemain'>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 (http://www.lupus.org/education/articles/lightsensitivity.html)

<span style="color:#FF6666">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). </span>

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 (http://en.wikipedia.org/wiki/Ultraviolet_radiation#Health_concerns_and_protecti on)

love
Lily

[Clare.T]

It's been acknowledged for some time now that UVA plays a role on some patient's disease, especially those with SCLE
The recommendation is for a broad spectrum sun block with both chemical and physical barriers.
In the UK, UVA protection is indicated by four stars.

Howver this therapy is using UVA1 a different wavelength ( or something) from UVB2.


In over 7 years of foruming I haven't heard from anybody who has had this therapy although, for comparison of novel therapies, I have read about 5 or 6 stem cell transplant procedures.

I asked my doctor who is a foremost lupologist, what he thought of UVA1 for SLE. He's the only triple certified physician in the USA, rheumatology, dermatology and internist, a specialist in the skin manifestations of connective tissue disease. He wouldn't dream of treating SLE patients with it at the current state of knowledge since the studies are quite inadequate and have not been duplicated and the risks of doing harm by causing cancer, other photosensitive skin conditions, and aggravating both skin and systemic disease is far too great, not to mention the aging and other unwanted effects on the skin. The A in UVA is said = aging, the B for Burning

For me my doctor's opinion is more than good enough.


The uses of UVA1 in dermatology is being studied in Europe as well as the USA.
As with all novel therapies, whether medicines or procedures, it takes a long time to establish their value, risks and benefits, as well as the long term side effects.
In my view that's as it should be. Imagine what would happen in liability !

Apparently the machines are very expensive about $500,000 so the specialists have to get the funding and to submit justifications for the purchases.

I don't think there's any comparison with folic acid. It does take time for information to trickle down to grass roots but we are talking here about the theories and them being accepted.

Obviously the UVA1 theory runs counter to all that is currently understood. It is very exciting but here we are concerned not only with risk taking but with practicalities. This discussion reminds me of the antibiotic therapy claims
At the moment how could a person access this treatment when the mainstream lupus expert rheumatologists wouldn't dream of using it, and who would pay for it. Participating in a study is being a guinea pig. And you might not get the UVA1 therapy so you could have gone to all that trouble and expense for nothing

From an article by Dr Provost
"There is clinical and experimental evidence that shows that ultraviolet light can also induce flares in people with systemic lupus erythematosus. The way that ultraviolet light triggers these systemic flares (or leads to the development of skin lesions) is not known. However, there is evidence that suggests that ultraviolet light is capable of leading to an increase in the number of auto-antigens to which the person is reacting "

There is also reliable anecdotal and measurable evidence of systemic disease worsening after UV exposure.

Although great strides have recently made in examining the role of UVR in lupus notably by Dr V Werth and her team, much is yet unknown about the exact mechanisms; in lupus dermatology, many questions remain to be answered. Much is surmise and assumption.

All the time, research is giving a better idea into why the disease has so many forms of expression, affecting each of us almost individually. As the genetics and various separate malfunctionings of the immune system become better understood, the hope is to tailor therapies to the type of individual.

http://www.uklupus.co.uk/news119.html Dr Werth's work


Article on UV and lupus skin

http://www.saclupus.org/Lupus%20Pamphlets/...ythematosus.htm (http://www.saclupus.org/Lupus%20Pamphlets/Photosensitivity%20and%20Lupus%20Erythematosus.htm )


http://www.pnas.org/cgi/content/full/100/13/7503 2003

http://www.blackwell-synergy.com/doi/abs/1...81.2004.00094.x (http://www.blackwell-synergy.com/doi/abs/10.1111/j.1600-0781.2004.00094.x) 2004

http://ard.bmjjournals.com/cgi/content/abstract/64/11/1605

(An example of the complexity)

In addition to clinical realisations, there are also advances in the lab. For example there's now a test that helps determine which individuals are most likely to respond to methotrexate. The advantages of being able to predict the effectiveness of medications are very obvious - the saving of time and money not to mention suffering while trying a useless medication.

By clinical realisations, I mean the results of experience and lab work as well as studies. For example, the understanding that cigarette smoke is harmful in lupus and in rheumatoid arthritis plus reducing the efficiency of the anti malarials. Or that certain medicines and herbals can cause some forms of lupus or at least trigger the predisposition. Although we read that DIL is rare and found mainly in older men who are more likely to be taking drugs like procaimide, it's well known that certain antibiotics and the sulfonamides can cause lupus in fact SCLE cases are being caused by some very recent drugs such as fungicides. And of course there are the psoralen containing plants, both consumption and topical use in skin and hair care products or aromatherapy.

Why do some people react to these drugs or these environmental triggers when others don't.

Why are some people with discoid lesions or SCLE lesions not affected by UVR when others are highly photosensitive. Why do some people with lupus suddenly develop lupus specific skin problems or why might the lupus skin not clear when other disease symptoms have been treated. Why are some sensitive to UVA some to UVB and others to both.

Why do some people whose lupus was confined to the skin who have gone into non medicated remission suddenly after many years respite develop severe systemic disease ?

From a lupus minnesota article

"The UVA portion of sunlight can be divided into two parts: the shorter wavelength UVA-2 rays and the longer wavelength UVA-1 rays. It does appear that UVA-2 rays can be harmful for some LE patients. However, experts in this area are currently debating whether the longer wavelength UVA-1 rays might actually be of benefit in the treatment of cutaneous LE and SLE, or whether such rays might carry a risk of aggravating SLE disease activity"


http://www.lupus.org/education/articles/li...ensitivity.html (http://www.lupus.org/education/articles/lightsensitivity.html) 2003

"For people with lupus, light therapy ("phototherapy") generally has been considered a bad idea because of the exacerbating effects of UV radiation (UVR). Thus, the suggestion that UVR exposure (UVA in particular) might be used as a therapy has been seen as especially interesting.

Several publications, including in particular one randomized controlled trial, have reported apparent therapeutic benefits from phototherapy in both the cutaneous and systemic forms of lupus. (A randomized controlled trial is a study that compares two groups of patients, one set treated and the other set not treated. In a randomized trial, patients are assigned to the treated or non-treated groups by random chance.)

In 1987, McGrath irradiated 20 lupus-prone mice which develop a serious lupus-like illness with UVA, and compared their survival to mice that were not treated. 6 All UVA-exposed mice survived to 32 weeks, compared with the survival of only 12 of 20 untreated mice.

In later studies on human SLE patients, McGrath reported a significant decrease in disease activity after a three-week course of long wavelength UVA (UVA-1, 340-400 nanometers), given at a low dose for five days a week. 7 Therapy with visible light had no significant effect.

The same team also reported a long-term benefit of UVA-1 phototherapy in six patients with systemic lupus who were treated with one or two irradiations per week for several years, 8 while a single case of SCLE was reported to improve significantly after a nine-week course of UVA-1. 9

These studies and reports thus suggest that UVA-1 phototherapy may be both effective and relatively safe; however, the long-term risks with UVA-1 for skin cancer and skin aging are at best uncertain, so this cannot currently be generally recommended.

From an article about photosensitivity in SLE

<div class='quotetop'>QUOTE</div><div class='quotemain'> Photopheresis
Photopheresis involves treating a persons circulating white blood cells with UV exposure, after the he/she has taken a drug (psoralen) that increases the sensitivity to light. (This treatment is also known as "extracorporeal photochemotherapy," which literally means light therapy given outside the body.)

The purpose is to try to decrease the chances of serious side effects from the light therapy. The whole blood is first removed from the veins, followed by separating out the white cells and irradiating them with UVA. Finally, the treated cells are re-infused into the body. 10

White cells treated by this process are significantly less active and have much shorter survival times than normal cells. This treatment has demonstrated success in several white blood cell-mediated diseases, and lupus is known to involve increased activity of white blood cells.

Knobler examined the use of photopheresis in an initial pilot study of 10 SLE patients. Eight completed the trial, which involved photopheresis on two consecutive days each month for six months and then in alternate months for a further six months. Lupus disease activity significantly improved in seven of the eight patients, and only a few side effects were reported. 11

More recently, Richter reported a patient with severe discoid LE who responded to treatment with photopheresis, 12 in contrast to the effect of UVA-1 therapy, which appears instead to exacerbate discoid lupus.

Neither UVA-1 phototherapy nor photopheresis are widely used as yet for the treatment of lupus. Clearly, further large studies on these types of treatment are needed. The long-term side effects of UVA-1 are unknown, and since lupus is such a potentially serious disease and may be exacerbated by exposure to ultraviolet rays, these studies should be conducted extremely carefully.


About the Author

Dr. Thomas Millard is a Research Fellow in Dermatology at the Department of Photobiology, St John's Institute of Dermatology, St Thomas' Hospital, in London, UK. This article has been adapted to serve as a Patient Education brochure entitled "Photosensitivity in Lupus."






References

1. Millard TP, Lewis CM, Khamashta MA, Hughes GRV, Hawk JLM, McGregor JM. Familial clustering of polymorphic light eruption in relatives of lupus patients - evidence of a shared pathogenesis. British Journal of Dermatology 2001; 144: 334-338

2. Millard TP, Bataille V, Snieder H, Spector TD, McGregor JM. The heritability of polymorphic light eruption. Journal of Investigative Dermatology 2000; 115: 467-470

3. Hasan T, Ranki A, Jansen CT, Karvonen J. Disease associations in polymorphous light eruption. A long-term follow-up study of 94 patients. Archives of Dermatology 1998; 134: 1081-1085.

4. Millard TP, Kondeatis E, Vaughan RW, Lewis CM, Khamashta MA, Hughes GRV, Hawk JLM, McGregor JM. Polymorphic light eruption and the HLA DRB1*0301 extended haplotype are independent risk factors for cutaneous lupus erythematosus. Lupus 2001; 10: 473-479

5. Millard TP, Kondeatis E, Cox A, Wilson AG, Grabczynska SA, Carey BS, Lewis CM, Khamashta MA, Duff GW, Hughes GRV, Hawk JLM, Vaughan RW, McGregor JM. A candidate gene analysis of three related photosensitivity disorders: cutaneous lupus erythematosus, polymorphic light eruption and actinic prurigo. British Journal of Dermatology 2001; 145: 229-236

6. McGrath HJ, Bak E, Michalski JP. Ultraviolet-A light prolongs survival and improves immune function in (New Zealand black x New Zealand white)F1 hybrid mice. Arthritis & Rheumatism 1987; 30: 557-561.

7. McGrath H, Jr. Ultraviolet-A1 irradiation decreases clinical disease activity and autoantibodies in patients with systemic lupus erythematosus. Clinical and Experimental Rheumatology 1994; 12: 129-135.

8. Molina JF, McGrath H, Jr. Longterm ultraviolet-A1 irradiation therapy in systemic lupus erythematosus. Journal of Rheumatology 1997; 24: 1072-1074.

9. Sonnichsen N, Meffert H, Kunzelmann V, Audring H. UV-A-1 therapy of subacute cutaneous lupus erythematosus. Hautarzt 1993; 44: 723-725.

10. Heald PW, Edelson RL. Photopheresis for T cell mediated diseases. Advances in Dermatology 1988; 3: 25-40.

11. Knobler RM, Graninger W, Lindmaier A et al. Extracorporeal photochemotherapy for the treatment of systemic lupus erythematosus. A pilot study. Arthritis & Rheumatism 1992; 35: 319-324.

12. Richter HI, Krutmann J, Goerz G. Extracorporeal photopheresis in therapy-refractory disseminated discoid lupus erythematosus. Hautarzt 1998; 49: 487-491.

July 30, 2003

[/b][/quote]

Here is the most detailed summary I have found on line about the therapeutic uses of UVA1 in dermatology and connective tissue disease.
http://www.biomedcentral.com/1471-5945/4/11

Edited to add that's the one you refer to.

The only mention of UVA1 in remedyfind. com is by that journalist himself

http://www.remedyfind.com/review_long.asp?id

I want to say more about his evidence so I'll have to come back to the topic later

Cheers
Clare

[Erskine]

i've been working all day, and i'm dying to spend some time with my wife, so all i can say for now is thank you all sooooo very much. i'd could just cry, knowing there are people out there willing to look so deeply into something that may turn out to be a total waste of our collective time. there are so many questions, and so few definitive answers. all i hoped for was a place to start, to look deeper. you have all given me so much more. thank you thank you thank you.

with the greatest affection and the deepest respect for you all,
erskine

[Erskine]

hello everybody,
sorry i've not gotten back to this as quickly as i'd have liked to. have these nasty blisters all over my hands that make typing a real pain. however, it gave me some time to do some other research:

first of all, i've read "lupus underground," by anthony debartolo. i've nothing particlularly enlightening to say about it. it's his story, relating his research, interviews with mcgrath and others, and how uva1 therapy has worked for him and most of the patients from mcgrath's study, some of whom have been using the therapy for as long as 13 years. it seems well researched, and includes an appendix full of studies worth reviewing if you don't have access to the internet. the studies are from 1987-2003 and are, for the most part, by the same researchers we've already cited in this discussion. an important quote from mcgrath: "the promises of the observations made to date lie in the usefulness of uva1 radiation in allowing patients to live with their disease, not in eliminating it." he doesn't call it a cure.

the obvious question is how reliable the research is. that's something you'll have to decide for yourself. debartolo does talk about how uva1 therapy has had an either negative and/or no impact on some patients. as he says in the introduction, if you're looking for more info about lupus, the best book out there is "the lupus handbook" by wallace. that comes as no surprise to most of us i'm sure.

so, having said all that, i'm not going to go out and make my own uva1 tanning bed to try this out. i do not recommend you do so either.

i would like to ask a question related to this topic though: does anyone notice a difference between direct sun exposure versus sun exposure through glass? (when i say glass, i'd like to limit the category to double paned glass with an approximate 1 centimeter gap between the panes). do you see the same severity of symptoms from both kinds of exposure? do you see more redness or more fatigue with one or the other? i had always assumed they would be the same, but i've never paid any attention to any differences if there were any to begin with.

apparently, glass blocks most uv, but primarily uvb. two panes will knock out almost everything below 340 nanometers (that's uvb and uva2, the kind that are thought to be responsible for lupus flares). in a sense, exposure to sunlight through a double paned glass is mostly uva1 exposure (and all the spectrums above that wavelength.)

on another note, someone commented that sunscreen usually covers both uvb and uva. many sites on dermatology discuss this in topic in depth. spf is not an indicator of uva blockage. because uva2 is known to cause flares, this is an important topic worthy of it's own discussion. you need to know for sure just what's getting blocked and what is not.

thanks to all,
erskine

[Lily]

Hi Erskine,

It may be different over there than it is here in Australia but it states on our product that "this broad spectrum helps protect against UVA & UVB rays" on the product. We have pretty stringent policies here that manufacturers of a lot of products cannot claim something that is not bonafide. Of course some things slip through the cracks but especially with things like sunscreens and other health aid products they are pretty finicky our TGA (therapeutic goods administration). We also have symbols on certain products like made to certain Australian Standards or approved by the Cancer Council etc. to give extra endorsement. Mind you a lot of products dont need that endorsement but if you are really paranoid about it then you can go for the Cancer council stuff.

The SPF is another subject altogether.

love
Lily

[Erskine]

hi lily,

i want to make a point that there are varying degrees of protection. it is important to match the degree of actual protection to a persons sensitivity.

SUNSCREENS: There are two basic types. Chemical sunscreens (PABA, cinnamates, benzophenones and salicylates) work by selectively absorbing UV light and acting like melanin. As previously mentioned, a sunscreen only needs to block part of the UVA2 rays to claim UVA protection, most sunscreen chemicals cover the UVB rays and only the shorter UVA waves. Physical sun blocks (zinc oxide and titanium dioxide) work by scattering UV rays and offer complete protection from UVA and UVB.

PABA is para-aminobenzoic acid, a chemical responsible for certain allergic skin reactions. Many sunscreen products have abandoned PABA, but may contain a PABA derivative. The ingredients with the broadest spectrum sunscreen coverage are: oxybenzone, dioxybenzone, and menthyl anthranilate. The only chemical that covers the entire UVA spectrum is avobenzone (Parsol 1789); it needs to be applied frequently and is not widely available. Most sunscreens are a combination of several chemicals in order to provide a good range of protection.

because lupus flares can be caused by uva2 exposure, your sunscreen must actually block those rays out or you are still at risk. australia is probably ahead of most of the world on this subject (do they really have much choice?), and Parsol 1789/zinc dioxide/titanium dioxide and a few other new products are no doubt broadly available. i tried googling ""this broad spectrum helps protect against UVA & UVB rays" and couldn't find exaclty what that phrase means. for patients with photosensitivity, "helps protect" isn't the same as "complete protection from uva and uvb."

hope this helps someone out there.

erskine

[Lily]

Hi

The best you will get is around 97% blockage of rays in Australia anyway, our highest SPF is 30, nothing blocks them totally unless you live in a dark room and never go out, unhealthy in itself. Here all broad spectrum sunscreens filter both UVA & UVB to a varying extent depending on the particular sunscreen. But dont forget sunglasses, hat and if really sensitive sun protection factor clothing (there is even a wash you can put your clothes through that will last a certain amount of laundering before it wears off). Some people here have tinted windows it all helps. It's also important to re-apply every two hours and have one that is waterproof and to apply enough of it - most people use it too sparingly and also dont apply it until they are actually in the sun, it should be applied earlier than that.

The idea of avoiding UV exposure totally may be desirable for some sun sensitive lupies, but its not practical nor is it without a price. We still need vitamin D absorption, important to many immune functions and bone health. As with most things moderation is the key depending on how the sun affects you.

From the Australian Cancer Council site on sunscreens:



http://www.cancer.org.au/documents/Use_of_...June%202005.pdf (http://www.cancer.org.au/documents/Use_of_SPF30_sunscreen_June%202005.pdf)

Cheers,
Lily

[Clare.T]

Sunscreens and blocks can't possibly claim to offer complete protection and they can only be a part of UV protection. Other important elements are minimising exposure & covering oneself effectively.

The Australians are probably the most well informed population on earth (perhaps New Zealand too) . It's a matter of major public health concern there.

A sunscreen can only be as effective as it is correctly used to provide maximum benefit it's reckoned that 'failure' is due to insufficient application

There is evidence that activation and thus potential damage can occur even when there are no visible signs.
Reaction and skin disease can start after diagnosis, sometimes years after.

Many of the medicines used in lupus therapy are photosensitising plus some important others like hormones Plaquenil is reckoned by USA and UK doctors to afford some degree of protection but that's only in addition to other strategies. Interestingly the view in Australia seems to be the opposite.

Like many aspects of life with lupus, it's a question of finding a compromise that suits the individual, of making well informed choices Then keeping your fingers crossed.

Some psoralen containing edible plants may well increase photosensitivity but I am not going to deprive myself of a major pleasure by stopping eating them. On the other hand it costs me nothing to avoid skin care products that contain photosensitising agents.
With time you find out what you can get away with,as far as you can tell. I discovered last summer that I do pretty well with an umbrella as well as my 5" brim sun hat. I also discovered that I will need a scarf when I am driving to protect against UV coming through the car side window. I know it was affected because that side of my face was worse than the other side just like I had a hand and arm affected one time years ago on the driving side. The answer to that is to wear a sleeve and gloves.

One doctor told me of a patient of his whose main interest in life was golf. Not the best pursuit for someone with highly photosnesitive SCLE. He had a chamois leather face mask made and wore wrap around goggles.

I have no idea what protection is offered by the tinted windows on transport, I simply do my best to be on the shady side of the bus or train or plane since I don't like the heat anyway.

The current top recommendation is Mexoryl. Look for La Roche Posay, Vichy, L'Oreal brands - they have to be ordered from Canada, because not yet approved by the FDA in its infinite wisdom. Some private pharmacies sell them at top prices You can get good proces on line.

If you look for the lowest number of ingredients with Mexoryl or Parsol and zinc and titanium micro particles you will be pretty well covered.
Fallene in the USA is recommended by the LFA. If you don't like any slight white effect then you have to look for one that is invisible or go for a tint. Fallene sell tinted and also a tint you can add to the base.
I don't mind a slight chalky effect, because it helps a bit to cover up rednesses and makes a good base for makeup.

SPF isn't really relevant IMO to people who are aiming for no sun exposure but when there's a choice I go for 50 or 60. Often brands for young children are suitable.

There are several posts about brands and the topic on medications forum

Best wishes

Clare

Some useful sites

http://www.epa.gov/sunwise/doc/sunscreen.pdf

http://www.emedicine.com/derm/topic510.htm

[raggedyann1]

I would also add in regards to windows and how they help or don't help. The problem is that we that have sun sensitivity have it in all kinds of severity. Newer homes in the usa at least are being built with dual pane windows but don't necessarily have the gap you mentioned. It really is trial and error for each of us. I for one don't have the problem with flourscent lights that people with extreme sensitivity do. I rarely leave my home due to other factors of my illness and when I do it is long skirts or slacks and long sleeves if my outdoor exposure will exceed 10 -15 minutes. I also wear a long brim hat if I expect to be outdoors for more than 10-15 minutes.

I have an additional problem with sunscreen since I also have scleroderma, when there is a high concentration of zinc and not really sure what else it is too drying on my face. I have found that sunscreen for baby's is kind to my skin. I don't have the finger energy to deal with lotion and then sunscreen. Most days I put on sunscreen in the morning after I was my face whether I am going outside or not. The one area many people forget about sunscreen is their hands. I make ahead of time if I am going out to reapply sunscreen on my hands when going outdoors.

I have to agree with Lily that many people do not apply sunscreen liberally or long enough in advance of going out of doors. My sunscreen specifically states at least 20 minutes in advance. The other thing I learned in chat one day a couple of years ago is to apply it liberally and wait for my skin to absorb it rather than trying to massage it all into my skin at initial application. I don't know exactly where the research would be on that subject and in this case didn't deem it necessary of research to validate.

Erskine it is a matter of you knowing how sensitive your body is and having the right clothes, window tint, sunscreen etc. to give yourself maximum protection. Many states here in the usa require you to get special approval to apply a dark tint to automobile windows.

Karen

[Erskine]

I have no idea why it's taken me so long to find this website, but here it is:

lupuslight.com

it's a one page site that explains mcgrath's work on uva1 light therapy. i found it helpful. it also includes his email address.

[Clare.T]

I note the advisories on this site.


<div class='quotetop'>QUOTE</div><div class='quotemain'>

WARNINGS:
1. The therapy is adjunctive. It is not meant to replace standard rheumatologic care. Lupus is a serious disorder that is potentially lethal. All patients should be under the supervision of a physician, preferably a rheumatologist, trained and experienced in the care of lupus patients. The therapy is meant to allow patients to live more comfortably with their disease. It cannot be said that the underlying disease ever disappears.
2. The safety of the therapy has not been established in multicenter studies and should not be used except in controlled studies.
3. The UVA lamps used in commercial sunparlors differ markedly from our combination of lamp and filter and deliver light that is toxic to patients with lupus.

[/b][/quote]

Clare

[EdArnhem]

Dear all,

At Leiden University, The Netherlands, a thesis was published on UVA-1 therapy. It seems interesting enough to copy and paste you the summary. I personally would not mind my wife trying it out. The (amount of) stuff she is taking in now, does not seem to help at all (Prednison and MTX). Any personal experiences or views wil be appreciated.

Edited in ( CT)

Full article can be read at

http://www.lumc.nl/4030/samenvattingen/200604/polderman.html#Summary

(English text follows the Dutch)

UVA 1 therapy is a relatively new form of light therapy. .............
.......... Systemic lupus erythematosus (SLE) is characterized by the production of auto antibodies by activated B lymphocytes, giving rise to inflammation in various organs. The usual therapeutic options involve systemic corticosteroids, azathioprine, and cyclophosphamide but can be accompanied by various, possibly serious side effects.
On account of the well known risk of photosensitivity, we initially investigated the effect of merely 6 J/cm2 UVA 1, in a double blinded, placebo controlled, cross over study (chapter 5). After 3 weeks, this treatment resulted in decrease of both the SLE activity measure (SLAM) and the SLE disease activity index (SLEDAI), two validated methods used for the determination of disease activity in SLE patients. Although the UVA-1 treatment resulted in the improvement of clinical scores, the difference between the UVA 1 effect and the placebo effect was not statistically significant.
To investigate whether a higher dose has a better effect we treated SLE patients with 12 J/cm2 in a second study with a similar experimental design (chapter 6). After 3 weeks of 12 J/cm2 UVA 1, both the SLAM and SLEDAI had significantly improved. Additionally, UVA 1 therapy proved to be more effective than placebo treatment, when measured by the SLAM. In both in vivo studies an effect on auto antibody titers was observed. Apart from problems of temporary photosensitivity in some and slight activation of subacute cutaneous lupus erythematosus (SCLE) in one patient, no side effects occurred. With these controlled studies we confirmed the positive effects of UVA 1 radiation in the treatment of patients with moderately active SLE (chapter 5 and 6). The auto antibody profile of the patients was very heterogeneous, which is often the case with SLE patients. Nevertheless, a clear decreasing trend was observed in the anti SSA titers after UVA 1 treatment in the first study.
..................................................
In conclusion, UVA 1 can be effective not only in T cell mediated diseases, but also in B cell mediated conditions, like systemic lupus erythemadosus. It would be interesting to investigate the possibility of using UVA 1 therapy for other auto immune diseases.

[Clare.T]

Hello Ed,

Your PM isn't enabled or I would have PM-ed you to ask that you give full references for this paper : the names of the authors should be given and where it was published, the date, and, if you have it, the internet source and link.

We need to be quite sure there are no copyright issues.

I have therefore removed the bulk of the quoted text until we have these details - we can put it back when we have the assurance that it is OK to publish it here.

I'm sorry your wife isn't doing any better. Please give her our best wishes.

I have no further or more recent information about this UVA1 therapy.

It isn't available to the vast majority of us and I presume it is still highly experimental and controversial
So you would have to discuss the possibilities with your wife's doctors and see if your wife would be eligible for a study or trial.

I suspect that many doctors would not be willing to risk it, out of ethical concerns, and depending on the way lupus is affecting the patient and what other tried and tested therapies have been used.

Or even better known novel therapies like the high dose cytoxan ( Revimmune) over 4 days, not to mention meds like CellCept that are now widely used.

It is becoming increasingly difficult to access research papers and expert sources on the web. The majority are now available only on subscription or payment for short term access and reading the small print, reproduction is only with permission except in certain circumstances.
We might need to get the Site Owner's OK.

Or simply a summary of the content as it refers to lupus would suffice as it is now.

Of course maybe some of our members do have personal experience of this therapy.

All the best

Clare

[Clare.T]

Ed has found this medscape article about the work at Leiden.

http://doctor.medscape.com/viewarticle/538594


Wishing all Well

Clare

[Erskine]

that link also has a link to an article in

Oxford Journals
Medicine
Rheumatology
Volume 45, Number 6
Pp. 653-655

http://rheumatology.oxfordjournals.org/cgi/content/full/45/6/653

it's worth a read.

[Erskine]

I started this thread and I tried really hard to find some good answers to my questions about uva1. I finally decided to give it a try after a good year of research.

Instead of buying all the equipment to make it happen, I decided to buy a couple of meters to measure uva1 and uvb light output so I could go to a tanning salon and try this therapy out without actually owning a bed of my own.

After a few phone calls, I found a local salon owner who claimed to have a tanning bed with the lowest uvb output in the industry. He uses the same meters to measure light output, but I tested his bed myself just in case. Sure enough, it was almost a pure uva1 bed. UVB levels were lower than in most of the studies I've read about, so I tried it.

Unfortunately, the place I get my bloodwork done doesn't measure anti-double stranded dna titers above 200, so I can't use that lab measurement as a way to determine how it's working. So far I can only talk about the subjective changes I've noticed.

I have less brain fog. I seem to have less pain. I definitely have less fatigue. But that's all I can say for sure. It's a big difference for me. I can't say it would effect anyone else the same way. My reaction has been in keeping with the studies; it's a great thing to add to traditional medicine with the supervision of a good doctor open to the idea and willing and able to monitor changes.

Since it worked for me, my doc ok'd having my mother try it. She's 63, SLE for about 10 years.

In her the differences were far more dramatic. Her energy level and mood changed right away. She was far less fatigued. Her brain fog was gone.

Downsides? It wasn't a cure all for either of us. SLE marches on. The membership at the tanning salon is $115 a month, but we go in three times a week, so that's fine for us. It would be too expensive for a lot of people.

Biggest downside? Finding a physician who's familiar with UVA1. One guy lectured me for 15 minutes about the studies he was familiar with from before 1998, and then told me the recent studies were all flawed, even though he admitted to never having read them or even discussing them with an informed colleague. Then he told me they weren't published in peer-reviewed publications. The saddest thing is he's a professor at the local U.

So that's the latest from me on this topic.

[Maia]

That's interesting the results so far for you and your mother. I hope it continues to help... I hope you have continued on with your regular medications too.

[ALWIN]

Hello Erskine

This thread is new to me, so I have been trawling my way through it tonight with interest. I will need to see all the suggested research myself and take a good long time to digest it all.

After years of relatively minor, but persistent problems, I was diagnosed with SLE, Hughes and Sjorens 6 months ago. I have an open mind, but until I learn more, I have decided follow the standard advice I read here very closely. It has served me well to date. So everything I read interests me.

You mentioned using this particular tanning bed 3 times a week, but I am unsure how long you have been using it for, how many minutes your sessions last, or how long you had used the bed before you noticed any changes.

Do you know if (and if so - how) UVA1 affects serotonin?

Please will you stay in touch to let us know if the improvements continue, or if there are other effects later?

Regarding your note about exercise early in your posts - I too find exercise helps me. I was a cross country runner. Then I moved on to using the gym instead. Now I only swim, but find this this reduces muscle stiffness & minor pain. When I am flaring I only walk (I often sleep for a long time on these days), or do a few gentle laps in the pool.

I too find that if I do not exercise, even when I feel quite poorly, I seem to get more pain. I find the cool (our public swimming baths are a bit chilly in the UK if you ask me!) temperature of the water wakes me up mentally, and the exercise warms me up fast enough. At first I thought it was a daft idea, that the rather cold water would make me ache more, but not a bit of it.

I do not know if the effect more physical than psychological or vice versa, or if it even matters. It just works for me.

I am female.

Good luck Erskine.

[ALWIN]

PS

I don't actually enjoy the swimming at all when I am ill, and the rest of the time it bores the pants off me. Still - as long as it is helping ...!!!

[nicky00]

I have also just come across this post and it took me a wee while before I noticed how old the first post was.

I would be interested in Do you know if (and if so - how) UVA1 affects serotonin?.

I would also be interested in the placebo effect.

Recently I took part in a clinical trial. I would like to think that I am not easyly placebo'ed (sp?).

However I do consider that taking part or trying something in the sense of feeling 'proactivly positive' or 'positivly proactive' may hold some significance in the final outcome.

Just thinking out loud.

Nicky

[Erskine]

That's interesting the results so far for you and your mother. I hope it continues to help... I hope you have continued on with your regular medications too.
No choice, no meds no breath. I'm pretty dependent, the surest way to achieve "patient compliance."

[Erskine]

Nice to meet you Alwin in Village in Lancashire.

I use the bed three times a week for 10 minutes per session. My mom uses it the same, three times per week, but she can go for 12 minutes. I burn if i do. We started back in late August, and we've pretty consistent, with the exception of a week off for Thanksgiving.

As to changes, we both noticed changes after the first session, just as many people have described in the studies, and De Bartolo in his book, Lupus Underground. (I don't advise you buy it.) Less brain fog, less fatigue, less pain.

Do I know if uva1 effects serotonin? No, I've never read anything to that effect. I wish it did. My lupus pain is relatively well controlled, but my fibromyalgia pain is through the roof. I used to take Amytriptiline for it, but I took it without ever having been diagnosed as bipolar, so it took me for a massive manic ride the likes of which I've not been on before. (I bought thirteen properties and nine cars in 2 months). Before the amy, I tended towards bipolar, but I was hyper-functional. Anyway, I had to stop amy, mostly 'cause I ran out of money, (sorry, bipolar joke), but now I'm taking Lyrica and it almost works as well. I tried 5-htp, but it just doesn't do the job for me without an iv drip. (No, there is no such thing, just wish there was). I had to take it every couple of hours or I was just wiped out by the pain. Serotonin, I need you.

I'll stay in touch as to the progress of the uva1 therapy. I thought maybe I should quiz my mom again on how it makes her feel, and she told me yet again how totally convinced she is it makes a difference for her. We both took a week off for Thanksgiving, and we both felt worse, but that could be placebo talk or maybe just my relatives, I'll have to think about that one. I'm waiting on my DS-anti-dna to come down under 200 so I can see a difference, but so far no luck. If I do drop below 200, it'll be the first time in several years. My c3 and c4 are below the recordable range (i think i have a lazy lab tech), so if those improve, that would be major too. Either way, I'll let you all know. And if anything goes downhill, I'll let you know about that too.

You were a cross country runner? I was too. 10k in 31:36 at the age of sixteen. But there was a really cute girl ahead of me if I remember correctly... I also had to move on to the gym, but I can't swim. I can only lift weights, and only with long pauses between sets. Otherwise it's massive pain as my muscles seize up from lack of oxygen. That's when I can work out at all. I'm glad you found something that works for you, even if it is chilly. I'm in New Mexico, so we say, "If you don't like the weather, wait five minutes." I'm always waiting for it to warm up...

Oh, and I'm male. Please don't hold it against me, the women in my family seem to....he, he, he...

[Erskine]

I would also be interested in the placebo effect.
Nicky

Who knows. I have no labs that are in the readable range. Anti ds dna is too high to read, and complements (c3, c4) are too low to even graph. I suspect a lazy lab tech.

I do feel better. I took a week off and I felt worse. I started again and I felt better. Could be a placebo, the cute girl at the counter, or the sight of seeing myself look healthy every morning. (I was pretty grey, and that's not so attractive in an hispanic male.) Who knows. My doc is on board, it's 28 bucks a week, I figure I can keep trying this. A little less fatigue, a lot less brain fog, a little less pain.

My mom feels like a new person. Much less brain fog, much less fatigue, much less pain. The placebo effect may be stronger in her. After a week of therapy, I came over and caught her cleaning the garage at 9am. She wasn't even getting out of bed before 10. She's up every morning early now. She's convinced it works, and I know better than to argue. Viva el placebo.

If either of our labs change, I'll post it.

[someonesfriend]

Is there any way you could control for the placebo effect? Not sure you'd want to, since this seems to be helping you (whether its the UVA or the placebo effect) and I can see how you wouldn't want to mess with it...but if you really wanted stronger evidence, at least as strong as you can get from a study with only two people...could you get the people at the tanning place to give you and your mom some sort of "normal" light, that's known not to have any effect - I don't know enough about this to know what that would be, since I know photosensitivity is an issue in lupus so "regular" light might not be the best choice, but it would have to be something that is known to be harmless and also have no documented positive effects...hey or no light, UV rays are beyond the range of human vision right? so can you even see whether or not you're getting a treatment? - and not tell you when they give you UVA and when they give you the placebo? Ideally it would be double-blind, but not sure how they would be able to do that unless it's set up so that you never see whoever turns the thing on (no idea how these machines work, sorry!). And the people at the tanning place would obviously have to cooperate, record which days they give you placebo and which they give you treatment (and pick randomly each time too), and then you'd have to document your symptoms after each session. This also assumes that the effects dont last longer than a day or two after each session, but from what you said about taking a week off for Thanksgiving and seeing a difference, it sounds like the effects are fairly short-term. Maybe you could do a week at a time, so each week they'd flip a coin and give you placebo or treatment, then the next week do it again, etc. Sorry, getting a bit carried away here - what matters is that you're feeling better, it's just if you wanted to be able to draw more general conclusions that you might want to try to do a randomized blinded study while you're at it.

sf