Bioflex

[HeronNS]

Going to try low level light therapy to help me on my journey of pred reduction. First appointment next week. Curious to see how it goes.

[Daisyharper]

How come light therapy works I have been having it for the last 2 months but for psoriasis not my PMR ?

[HeronNS in reply to Daisyharper]

I don't know how it works but research shows that it does have beneficial effects in treatment of inflammation, although the physiotherapist also warned me that taking steroids interferes with the treatment. She says she has other PMR patients and felt it would be worth my while to try. I am getting down to a lower dose right now, nearly down to 8 mg and doing well so far.

[Gosingen]

I've never even heard of light therapy. I'd be very interested to know how you get on as my PMR/GCA (over 5 years since diagnosis) is aggressive and just had to increase (again) to 20mg, then reducing. It's a constant battle. Is this available in UK, do you know?

Wish you all the very best with this treatment.

[HeronNS in reply to Gosingen]

Look up the company BioFlex on the internet. I read about this in a book whose name escapes me right now, and did a bit more reading. The method was developed by a surgeon who experienced its healing effects himself. He developed it at a university in Ontario. I would not bother with any of the other light treatments that are out there as they probably are not effective for the ailments we have. The machines used apparently deliver light right into the deep tissues of the body (did you know we were so translucent?!).

[Gosingen in reply to HeronNS]

Thank you very much for your reply. I will look it up with interest. No, I suppose I didn't know we're that translucent, but knowing that most of us is water I suppose it makes sense.

Love to know how you get on.

Best wishes

[Daisyharper in reply to Gosingen]

HI Gosingen

Yes I am the having light therapy with the NHS and I live in Lichfield, IAd never heard of it being used for PMR, I wills I the nurse when I go , I have to go three times a week,started on 48seconds up to 2.30 seconds after about 12 weeks so it quite time consuming if you ne live local to where they have the equipment . Good luck

[HeronNS in reply to Daisyharper]

Interesting. My expectation for the PMR treatment is that the sessions will be up to an hour long as they use two different intensities of light and two different kinds of light, in sequence. But this is to get at deep tissues, not for skin for which of course is right there, waiting for the light! Daisyharper what kind of light is used in your treatment? Bioflex uses low intensity laser and LED. Have you found it has been effective for the psoriasis?

[Gosingen in reply to Daisyharper]

Hi Daisyharper

Thanks for letting me know you are having the treatment and on the NHS. I have no idea if it can be done where I live. I go to Queen Alexandra rheumatolory, which are excellent. Just having had to increase my dose again to 20mg I'm interested to learn of possible ways to reduce (even come off) the pred. I will ask my consultant when I next speak/see her. I'm assuming you are not being treated for PMR, is that right. It this treatment can help, I have all the time in the world so that's not an issue. Let me know how you get on.

Thanks.

[Daisyharper in reply to Gosingen]

Hi Gosimgen

Yes I am being treated for PMR not that well though .. I haven't seen a doctor since february ... And I have never been referred to a specialist .

My GP went on Maternity leave and my new one hasn't even been in touch since, I went to the health centre today and and couldn't get an appointment for some time, however as I have taken advice from this forum I have just follow the slow programme advised by PMP pro on predict reduction , , she always gives excellent advice. Anyway to get back to my light therapy it is UVB , which maybe different to what have been mentioned, it clears the psoriasis after a couple of months ..... And I am not sure it have any effect on my PMR , and also the dermatologist had no interest in the PMR

Hope this helps

[Gosingen in reply to Daisyharper]

Hi Daisyharper

Thanks for your reply. Sounds like you're having a rough time and not enough support from GP (or lack of interest from your dermatologist). Fancy not being referred to a rheumatologist. I'm obviously blessed with a lovely GP and an excellent rheumatologist.

I have learnt that I need to be assertive and ask for what I want, eg being referred to specialist. Not easy I know, but I find that if I'm asking in the nicest possible way that I need some help, I always find it works.

Re light therapy, thanks for letting me know it is UBV, which probably isn't what I was thinking of.

I really wish you the best of luck with your PMR. PMPpro gives excellent advice... good luck with it all.

[HeronNS]

The book is by Norman Doidge and is called The Brain's Way of Healing. The chapter about light therapy caught my eye as it has been used in treating symptoms of Rheumatoid Arthritis. What I am hoping for is that little extra help to enable me to get the pred dosage down without too much trouble as I seem to be prone to some of the bad effects. Right now, using the dead slow method, I am virtually pain free at nearly 8 mg, but I am aware that things are likely to get more difficult from now on....

[HeronNS]

Had my first visit with the physiotherapist today. She did a very thorough assessment. Then we proceeded with the first treatment. It consisted of me lying on my front with a small (about the size of a large hand) pad with multiple LED lights on it placed on my lower spine. It got pleasantly warm. Three 7 minute sessions, each time the lights slightly repositioned. Next visit in a week's time, if I show no adverse effects (she says it takes a while for the body to get used to the treatment, hence the first one is always shorter and only uses one type of light), I will get up to an hour of therapy with the LEDs being followed by infrared. If I'm not a wreck tomorrow it may be because of the treatment as I rushed twice to catch the ferry, both going and coming back, and also went grocery shopping. but I don't anticipate any noticeable effects for about three weeks.