Progress report from alternative treatment front

[HeronNS]

Just a little update for those who have been following my guinea pig treatments with low level light therapy for PMR. I appear to have successfully tapered to 6 mg prednisone and am now starting a taper to 5.5. As before, depending how things go, I may try to cheat the system halfway through the taper by going from 5.5/6 to 5/5.5. It worked for the past two reductions. Feeling well, probably slightly better than when I was at 7, actually. 🌈

[Queenfisher]

Good to hear of you having success with the LLT -way to go! I am continuing to experiment with an alternative treatment also, and having some success with the PEMF machine. It has taken me two weeks to get a feel for what it does to my body and figure out the way to use it. It is supposed to reduce inflammation and also increase blood flow so am hopeful it may allow me reduce my pred level before too much longer. I am taking it super slow right now though for as the Dr. told me, it took a long time to get sick and will take a while to get well again. For right now I am enjoying a much-needed energy boost each day and am beginning to feel like myself again after two years of feeling like an "old person" had taken up residence!

[HeronNS in reply to Queenfisher]

Is that the electromagnetic machine? I think Prince Charles had a broken arm (from polo) many years ago. It didn't heal and didn't heal until he had some sort of treatment with magnets and or electricity. I tried to find more info on the internet, but came up blank.

[Queenfisher in reply to HeronNS]

Yes it is pulsed electromagnetic field (PEMF). One of our other members on this site mentioned she used one with great success, so I did a huge amount of research, and then tried one in a doctors's office. I had not heard of them before this, but apparently they have been used for years for sports injuries as you say. I expect if you google on PEMF you will find some info, there are quite a few different manufacturers out there.

[HeronNS in reply to Queenfisher]

I've just been doing a bit of reading! Apparently it is useful in treating "osteoporosis-prone women" also.

[Queenfisher in reply to HeronNS]

I didn't know that, maybe it is doing me more good than I realized! The one I am using has many different energy levels on it and also a "relax" program. After consult with the Dr. I used that setting very effectively last week for pain relief as I have been coming down from a flare. Hopefully now my flare has gone I can try some pred reduction shortly.

[HeronNS in reply to Queenfisher]

So is your doctor onboard with this alternative treatment? Mine just sort of grimaced when I asked for the physio referral and told her it was for light therapy (yes she wrote the referral).

[Queenfisher in reply to HeronNS]

I didn't need any kind of referral fortunately, and I found a local physician who had a PEMF machine in her office for use with her patients. They let me go into their office just to give it a try - very nice of them! Of my two regular physicians here, one just wags his head at me (as he does frequently) but is supportive of anything I want to try. The other is more into alternative medicine and is quite fascinated by what I am trying. Wouldn't be surprised to see him put one in his office at some point. QRS, the company who I bought the machine from have put me in touch with a local Nutritonist who has used one of the machines to great results with her own health issues, so both she and a Dr at QRS are guiding me at present.

[HeronNS in reply to Queenfisher]

I needed the referral so our insurance would pay for part of the cost.

[Queenfisher in reply to HeronNS]

I am amazed insurance would cover part - that's great!

[HeronNS in reply to Queenfisher]

It's physiotherapy that's covered. And as my coverage is limited, I've already reached this year's limit of 80% of $500 per calendar year (although I understand that if I pay the next $500 myself the insurance kicks in again. I've never before needed treatment for that long so not sure exactly how it works).

[PMRpixie in reply to Queenfisher]

Is this similar to a "tens" unit?

[Hidden in reply to Queenfisher]

Glad you are giving it a try again! The key is low intensity and step up slow. Let me know how it goes. I am 12 weeks of Bemer therapy and really seeing relief.

[Queenfisher in reply to Hidden]

Hi there! Good to hear from you, so glad it is going well! Yes I felt it could work for me if I just could get the intensity low enough. The Bemer was too strong for me, so after a great deal of research and talking to alot of people I have ended up with a QRS machine.

[Nap1 in reply to Queenfisher]

Please tell me what this machine is called (full name) and what it does. Thank you.

[Queenfisher in reply to Nap1]

The machine I have is the QRS 101 Home Therapy, and another member here uses a Bemer 3000. They are therapy mats that you lay on that produce a pulsed electromagnetic field to promote increase in blood flow and microcirculation to enhance healing. They have been used for many years for sports injuries, and I saw recently where they are beginning to be used after knee replacement surgery to lessen pain and speed recovery.

There are several maufacturers, and machines with various features and quite a difference in price. I chose the QRS machine because it has a "sensitive" setting with varying intensities at lower levels which suit me better - plus it was less expensive than some of the others.

If you cannot find a doctors office which has a PEMF machine you can try out, you can rent the machines on a trial basis for a couple of months before you decide to buy.

Best thing is to do lots of research on the different manufacturers websites and even call and talk to them before you decide. I spent many days doing just that before I was ready to go ahead. Having used it for just a couple of weeks, I think I am only just beginning to scratch the surface of what it can do for me.

[Pollyanna16]

I was wondering about that as I have one but hadn't thought to try it for PMR

[HeronNS]

It's not clear whether Pollyanna, 19thhole and Alison are referring to the low intensity light therapy or Queenfisher's pulsed electromagnetic field. Neither of these are related to transcutaneous electrical nerve stimulation. Although as they each utilize a section of the same spectrum of vibrations that bathe us perpetually in this universe it makes sense that they could all work in some way to stimulate the body's own healing mechanisms. 💡

[HeronNS]

Re intensity of light therapy - I was started at about 15 minutes at the lowest level. There are three levels, with four stages within each level and I'm currently working up to the highest level; each session lasts about 40 minutes twice a week. All the exposures have been to the spine and adjacent tissues. There is a machine now available for home use but it's very expensive and I don't think I'd be able to treat myself anyway; it would likely be more practical for someone with a specific injury, like a bad knee or other joint.

[jbarie1]

As you taper your Prednisone check your morning temperatures,midday temperatures and nighttime temperatures to see if you are potentially adrenal deficient. When I tapered too much or too quickly(at 5mg)..... I subjectively felt greater morning fatigue upon arising, inability to stay awake when watching movies or listening to lectures... I also felt greater cash  and lower extremity pain  as I tapered... especially as I was getting out of bed in the morning.....my morning oral temperatures fell to 96 degrees and rarely reached  98 degrees during the day.... in other words the objective findings clearly matched my subjective feelings of fatigue.. moreover I felt that I had some memory deficits frequently forgetting recently acquired information which was not apparent before I tapered to my prednisone to the 5 milligram level... all of the side effects of tapering have been well-established by others.... more importantly... my morning temps returned to normal once I abruptly elevated my prednisone from 5 milligrams to 7.5 milligrams... I can't say that oral temperatures will be a true gauge of Prednisone deficit for everyone but it certainly works for me and correlates quite well with my subjective responses to tapering.... unfortunately I have not undertaken any saliva tests to clinch the diagnosis... JBarie

[HeronNS in reply to jbarie1]

Thanks for your comment. I'm currently at 5-4.5 so will stay aware of what you said.  Although temperature taking is unlikely to become part of my daily routine!