"Can you please link us to the studies that have been done on the uva therapy?"
this first link is a gold mine. it references other studies that can be reviewed from this site.
http://www.biomedcentral.com/1471-5945/4/11
The first study on UVA1 phototherapy in subacute cutaneous LE appeared in 1993 [73]. A nine week series of UVA1 phototherapy leading to a cumulative dose of 186 J/cm2 had been administered. Thereafter, an impressive improvement of LE lesions was noted. In another uncontrolled study conducted in 1994, ten patients with systemic LE were treated with 6 J/cm2 for 15 sessions during a period of three weeks [74]. Four of them continued treatment for eight months. The authors could verify a marked clinical improvement combined with a decrease of autoantibody concentration. Since then, two randomized double-blind placebo-controlled cross-over studies were performed. First, McGrath et al. reported in a two-phase study two groups of patients, one receiving 6 J/cm2 UVA1 five times a week for three weeks followed by a three week exposure of placebo visible light, the other vice versa [75]. Twenty-five patients completed this phase of the study. Both procedures were followed by an unblinded exposure of progressively decreasing UVA1 levels. Taking clinical as well as serological data in account, the authors proposed that low-dose UVA1 phototherapy might be superior to visible light irradiation. Second, Poldermann et al. tried to compare exactly the two different groups in a total of eleven patients [76]. Although no statistically significant difference between the two groups could be evaluated after an exposure of three weeks including 6 J/cm2 cold-light UVA1 five times weekly, significant clinical improvement was restricted to the UVA1 group. Apart from the short term benefit following UVA1 phototherapy, Molina et al. were also able to describe a long term benefit following low-dose UVA1 treatment (once/twice per week, 6?15 J/cm2) for a mean impressive period of 3.4 years in six patients of their former study [77]. Additionally, recent data of a case report suggest that UVA1 might contribute to a reversal of brain dysfunction and may also improve covered discoid lupus lesions via unknown systemic pathways [78]. As to our knowledge, no positive effects of PUVA treatment have been reported so far.
"Even though holding the risk of carcinogenesis, photoaging or UV-induced exacerbation, UVA phototherapy seems to exhibit a tolerable risk/benefit ratio at least in systemic sclerosis, localized scleroderma, extragenital lichen sclerosus et atrophicus, sclerodermoid graft-versus-host disease, lupus erythematosus and a number of sclerotic rarities.
Conclusions: Based on the data retrieved from the literature, therapeutic UVA exposure seems to be effective in connective tissue diseases and related disorders. However, more controlled investigations are needed in order to establish a clear-cut catalogue of indications."
http://content.karger.com/ProdukteDB/produ...ArtikelNr=81489
"A distinct improvement of erythemas and sclerosis could be achieved by means of low-dose UVA1 phototherapy which was applied with escalating single doses of 3-12 J/cm2 for 35 consecutive days."
"I am very concerned by your statement that you have been flaring for 4 years."
so am i. no med has worked to control it, except 150-300mg of indocin. (80mg of pred iv had no impact, and that was after months of that kind of dosage.) no organ damage though, so no chemo. several docs agree on that.
"It is totally unadvisable for us to exercise thru the pain that will make lupus worse."
that is not true for everyone. my pain worsens without exercise. i hate doing it, it's horrible torture, but when i don't, the pain is worse. my docs agree, the bloodwork get's worse too. everyone's lupus is different.
"Working long hours can also be a problem for keeping lupus under control."
you'd think so, wouldn't you? my best friend and i decided to take a step back from assumptions and track the info in a database, and see if it's true. after three months of filling out forms, the data said something else: in my case, negative stress makes my symptoms worse. positive stress seems to have no effect, or a slightly positive effect. so i only work on stuff i love to do, and that's within the scope of my energy levels. and voila, long hours have no impact. in case you're curious, i ran the results by my docs. they agreed.
"Just some thoughts that could be part of the reason why you are so very sick and flaring for so long. If symptoms are masked and covered up it makes it more difficult for your rheumatologist to treat you."
actually, i'm very sick because i have an extremely aggresive form of lupus. and after a year of doing nothing but rest, and then a year of various other ideas that had no impact, i said screw it, and did what i felt best, and my docs said, wow, no change. i see my 2 rheum docs, head of rheum VAMC, and head of rheum, u of newmexico, every 6 weeks or so. i do blood work when i'm feeling bad, every 3 or 4 weeks, and at least every 6 weeks. they aren't worried about my lifestyle, they're worried about why my antidsdna numbers haven't come down in 4 years, why my compliments are too low.
" If a new treatment is available or a complementary treatment proved successful our doctors will have us try them."
the study in jama on folic acid says we may be wrong to assume that. we must be our own advocates. would you agree with that?
