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Ultra Violet Light Therapy, McGrath et al

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

  1. Clare.T

    Clare.T Registered

    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.pnas.org/cgi/content/full/100/13/7503 2003

    http://www.blackwell-synergy.com/doi/abs/1...81.2004.00094.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 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

    QUOTE
    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
     
  2. Erskine

    Erskine Registered

    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
     
  3. Erskine

    Erskine Registered

    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
     
  4. Lily

    Lily Registered

    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
     
  5. Erskine

    Erskine Registered

    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
     
  6. Lily

    Lily Registered

    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

    Cheers,
    Lily
     
  7. Clare.T

    Clare.T Registered

    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
     
  8. raggedyann1

    raggedyann1 Registered

    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
     
  9. Erskine

    Erskine Registered

    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.
     
  10. Clare.T

    Clare.T Registered

    I note the advisories on this site.


    QUOTE


    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
     
  11. EdArnhem

    EdArnhem Registered

    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)

     
  12. Clare.T

    Clare.T Registered

    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
     
  13. Clare.T

    Clare.T Registered

  14. Erskine

    Erskine Registered

  15. Erskine

    Erskine Registered

    I finally tried uva1 therapy

    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.
     
  16. Maia

    Maia Registered

    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.
     
  17. ALWIN

    ALWIN Guest

    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.
     
  18. ALWIN

    ALWIN Guest

    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 ...!!!
     
  19. nicky00

    nicky00 Registered

    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 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
     
  20. Erskine

    Erskine Registered

    No choice, no meds no breath. I'm pretty dependent, the surest way to achieve "patient compliance."
     

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