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kkelly
05-06-2006, 06:33 PM
Hi -
Has anyone tried or researched UVA 1 light therapy to help control symptoms? I have recently read a book called "Lupus Underground" by Anthony DeBartolo, reporter who got Lupus a few years back. He put together a tanning canopy using special UVA1 bulbs - Philip TL 10R lamps. A doctor Mc Grath in New Orleans has done several clinical trials as well. They all seem positive 70% have responded very well. Decreased meds and increased energy. Anyhow if anyone has any info or has tried this therapy, I would love to know.
Thanks
KK

Saysusie
05-07-2006, 03:19 PM
Apparently, there was a double-blind test with placebos and UVA -1 cold light therapy done on lupus patients. Here is what I found:

OBJECTIVE Treatment of patients with systemic lupus erythematosus (SLE) often implies strong drugs with possibly serious side effects. Thus there is a need for new immunosuppressive treatments. Long wave ultraviolet A (UVA-1) cold light therapy is an anti-inflammatory, immunomodulatory treatment with a possible systemic effect and few side effects. In the current study low dose UVA-1 cold light treatment was tested to determine whether it reduces disease activity in SLE.


METHODS Eleven patients with SLE were treated with UVA-1 cold light treatment and a placebo light treatment in a double blind, placebo controlled, crossover study. In two consecutive 12 week periods the patients were treated in the first three weeks with UVA-1 and placebo treatment or vice versa. The primary variables were the SLE Disease Activity Index (SLEDAI) and SLE Activity Measure (SLAM).


RESULTS The mean SLAM and SLEDAI showed a significant decrease of 30.4% (p=0.0005) and 37.9% (p=0.016) respectively after three weeks of UVA-1 and a non-significant decline of 9.3% (p=0.43) and 12.2% (p=0.54) respectively after three weeks of placebo treatment. In this small trial the difference in reduction of the disease activity indices during UVA-1 compared with during placebo treatment failed to reach the conventional border of significance (p=0.07). The total score of quality of life measure RAND-36 did not improve significantly, but the subscore for vitality did improve.


CONCLUSION Low dose UVA-1 cold light treatment was strongly suggestive of lowering disease activity in this double blind placebo controlled study, and no side effects occurred.

Saysusie

kkelly
06-12-2006, 03:30 PM
I tried UVA-1 light therapy by getting a local tanning salon to equip a bed with special Philips TL 10R bulbs which emit primarily UVA-1 light. The specifics of how this works can be found in the book Lupus Underground by Anthony Bartolo. Anyhow - I have been doing this therapy for one week now and immediately I felt relief from the dreaded lupus fatigue and fog. I don't know if this is for everyone - supposedly it works much better for caucasians but I really wanted to post this to share my experience........If anyone has any questions I would be happy to share....

jesseyleigh
02-04-2008, 10:57 AM
How do you find out if a salon has UVA-1 beds? Its always worth a shot

kkelly
02-04-2008, 07:57 PM
Hi
Just reading your post now....Most tanning salons don't have the UVA-1 equipped beds. You might have more luck at a hospital or clinic specializing in treating psoriasis with this treatment.
Be very careful b/c regular tanning beds are very dangerous for lupus patients. I had to get the tanning salon to order in the special bulbs from Philips and it wasn't cheap.
I am not using the bed right now but I do think it helped me for awhile and I plan on using it again. (I am hoping to get pregnant so obviously can't use it if I do). Good luck and if you have any other questions about it - I'm happ to share.
Karen

debartolo
06-19-2008, 06:29 AM
hi....I'm Anthony DeBartolo --- i just saw this thread after setting up one of my own here on UVA1 therapy....sorry for the duplication.

I joined the board to provide a link where you can read the little book i wrote on-line for free, but i apparently can't post a link.

as for what i just read in this thread - i'm thrilled that at least one of you have tried this (sort of) & gotten good results --- but i'm very concerned about anyone going to a tanning salon - even if they're willing to put in TL10Rs, because this lamp still give off a little UVA2 & UVB....so, while you might be able to get some immediate short term relieve, i'm afraid over time even the little UVA2/UVB you're getting might do some harm - at the very least, it's certainly counterproductive.

if anyone can figure out how i can get the book posted here, let me know - would love to talk about it with people who already know what i'm talking about!