[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]

Placebo Effect

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

 

[Erskine]

Update

So I've been doing UVA1 for a while now. I finally bought a bed and some lamps because it was getting a little pricey for me to use the commercial bed I had been experimenting with. (Bed and lamps ran me about $400.00 u.s.) I'm currently using 6 lamps in a half bed with Philips TL-10r UVA1 lamps. These are the lamps most often used in the studies I've seen, though McGrath added a filter eventually to keep all UVB out. I don't bother with the filter as it's a pain in the neck to get and plenty of studies have been done without the filters successfully. I do 20 minutes on either side of my body, approximately 4-6 inches from my skin.

My mother and my aunt also have SLE. They have also been using the same bed with good results. None of us have seen a worsening of symptoms. I seem to notice the positive effects the least, my mother and aunt the most. It's the usual: improved mental clarity, less aches and pains, overall better energy.

If you've read the previous posts, you know there's a lot of controversy about doing this. I felt it was in my best interests to give it a try particularly because I've not been able to tolerate the usual meds. Same goes for my mother and my aunt. Had we responded well to the usual meds, I doubt I'd have done all the research I have and taken the risk doing it. Additionally, I've been doing this hand in hand with my doctor, so that makes it much safer.

Regarding labs and bloodwork: I've seen no strong changes one way or the other. I track all three of us very closely, but it seems the main benefits are subjective. The research shows there can be changes in bio-markers, but it's not a given that you'll be one of the lucky ones with that effect. McGrath apparently saw far less effect in african-americans that in caucasians.

If you're interested in knowing more, please feel free to contact me. This isn't for everyone and it's not a cure. At best, it's a way to improve your quality of life. Those who've responded well aren't a large enough population for anyone to assume they'll be happy with this therapy.

 

[Clare.T]

Hello Erskine

It's good to hear from you again and especially to know that you are doing so well I am sure that many people will be interested in UVA1 therapy idea if they haven't come across it before but maybe not take the time to wade through the thread.

I wouldn't say it is controversial more that the lupus doctors are not sure enough yet to recommend it in the same way as they are hesitant to use new medicines without a lot of evidence about benefits, what sort of patient would benefit most and possible long term side effects and so on.

Trials and studies are a different matter. My doctor would be mortified if I suffered side effects and of course I might end up suing him !



Two points

1. This is not your regular tanning bed so it would be a huge mistake to rush off to the tanning parlour and irradiate yourself - it could be catastrophic

2. UVA1 is already being used for several other skin conditions. There are very good reasons as mention in your last sentence why it isn't used yet for any sort of lupus, not by the top lupus doctors. As far as I know anyway.


In more detail:

Q. I have cutaneous lupus. Lately, I've heard people discussing UVA1 phototherapy as a potential option. I'm interested in this treatment option. But because I'm photosensitive, I'm skeptical as to how this would really help me.
A. Here is the consensus statement from the newly-formed North American Rheumatologic Dermatology Society (NARDS) on the issue of UVA1 therapy for lupus.
"There is some published evidence based on a relatively small number of patients studied that supports the use of UVA1 phototherapy for some of the skin lesions of lupus. However, there is also published evidence that raises the concern that UVA1 irradiation might induce or aggravate abnormal skin changes in lupus patients. The specific dose and wavelength spectrum of UVA1 radiation delivered to the skin of a patient during phototherapy might be critically important as to whether UVA1 phototherapy might help or worsen lupus skin disease. Therefore, we believe that UVA1 phototherapy is at this time considered by most clinicians and investigators to be experimental and in need of further scientifically valid study. We fully support further systematic research on the clinical value of this type of photobiologic treatment in lupus. In addition to its effects on lupus skin disease, more valid research is needed on the effects of UVA1 phototherapy on the systemic manifestations of lupus. A primary mission of the North American Rheumatologic Dermatology Society is to foster and facilitate such research.

From an LFA Q & A session.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=603&zoneid=76

I also have the impression that it would be used as an adjunctive therapy not necesssarily as a replacement for the major disease modifying medicines that are essential for some people.

In my case, my doctor advised against it. They did have the machine and were using it for certain skin conditions and scleroderma if I remember rightly. If my doctor thought it would help I know he would have suggested it because he is one of those wonderful doctors who really cares.

I sometimes wonder what treatment route I would follow if I hadn't had a good response to medicines or couldn't tolerate them. But I wouldn't be able to build my own UVA1 machine nor if I could, would I want to turn up at my doc's suffering the effects of do it yourself therapies of any sort

Cheers and here's to you and your family's continuing good health

Clare

 

[Erskine]

Hi Everyone,

I haven't been around for a long time. Basically I was feeling great and got busy living. Was touring playing music, a bunch of stuff I would have found impossible before UVA1.

It seems McGrath has been busy publishing new stuff, here's a link to something recent:
http://autoimmunediseases.imedpub.c...-pathophysiology-of-the-disease.php?aid=21106

Don't know how I missed this years ago, but here it is:
https://academic.oup.com/rheumatology/article/45/6/653/1785119

So I'd say it works for some, probably not for everyone though.

Feel free to PM me if you have any questions.

Erskine

 

[x_claire_x]

Interesting articles...thanks for sharing it made fascinating reading.........glad it has helped you :0).

 

[Robin Jackson]

Lupus Underground: A Patient's Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy That Actually Works - UVA1 Phototherapy Paperback – November 15, 2004
by Anthony DeBartolo (Author)