Wow, nearly three weeks since my last update! I've been receiving a light therapy treatment weekly, and seem to be doing well. ( bioflexlaser.com/ for those who want to know what I'm talking about). Going out of town for a week, so won't try cutting back to fortnightly visits until after I've recovered from the trip. Currently tapering to 4.5 from 5, and will monitor that very carefully while I am away, but so far it's going much as previous tapers have done so I'm pretty happy. 😄 The only PMR symptoms I seem to have are some slight stiffness and discomfort in the mornings which I might not even notice if I weren't looking for it. 😐
Alternative therapy update: Wow, nearly three weeks... - PMRGCAuk
Alternative therapy update
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HeronNS
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Good news HeronNS! There's an old saying: 'if it works, don't try to fix it'. There has to be a psychomatic element in all of this (for better or worse)? 
Possibly. Although this therapy is a far cry from the little gadgets being sold in those catalogues of odd things that come to my house at Christmas time. It's quite intensive and time consuming. But who knows? Maybe I'd have been recovering anyway. As I've said a number of times there really need to be some controlled studies for this treatment because if it is as effective as it seems to be for me it should be more easily accessed. Anything that gets the pred dose as low as possible is a good thing!
I couldn't agree more!
Good Q&A section here: columbiaintegratedhealth.co...
Thanks Heron NS, I've heard a couple of people here talking about integrated / alternative therapies. I'm open minded to this in conjunction with the mainstream advice.
Is this done in the UK? Does this cost a fortune if you were to go on a course of several sessions? Good luck with your complete recovery.
HeronNS• in reply to
It's available in a few places in the UK. It's provided by physiotherapists and chiropractors so if you have insurance coverage that helps. I suppose it's like any other of these strategies, like massage, etc., different people will respond differently. I'm fortunate that I've partial insurance coverage and it's a priority for me to reduce pred as much and as quickly as possible as I seem to have a tendency to develop some of the more serious side effects. You can find a list, possibly not complete, on the bioflex website: bioflexlaser.com/clinics/in... As every once in awhile I look on the Internet for some information connecting treatment of polymyalgia with bioflex laser I was pleased to find this site: chewvalleylaserclinic.co.uk...
I've only managed to find 2 other places listed in the UK - in the London area and in the Midlands somewhere plus this one near Bristol that Heron has given today - and one of the testimonials says it is "one of the very few". All the other LLLT refs I've identified are for dermatological use which is different.
If you live near Bristol possibly worth a try - but you're probably looking at a commitment of at least 10 sessions and possibly ongoing "maintenance" as the testimonial puts it! And no indication at all on the site what a session costs ...
• in reply toPMRpro
If it is using the latest technology, some innovative equipment, shall I say, £250-£600 Per session (London being the most expensive)?
HeronNS• in reply to
I am charged standard physio rate. If it were not covered I would not be getting it. At first it was once a week, then twice a week. Now cutting back to once a week again, then probably every fortnight. We shall see how it goes, and whether I can continue my pred reduction. It is a fairly long term commitment.
• in reply toHeronNS
Yes, that's one downside. The maintenance is frequent and ongoing. I looked at the model last night. The "equipment" might not be beefy enough to give you enough "boost" to cause lasting effects in a single session hence such frequent top-up would be necessary. I'm sure something far more robust will eventually come up sooner or later. I see that you could purchase the system Hope your PMR is easing off nicely!!
HeronNS• in reply to
I'm not sure what you mean. If pmr were being cured by LLLT that would be one thing, but it doesn't claim to cure, only to reduce pain, which is why it's helpful. And it has to be administered with care or it could make things worse.
Sorry Heron - I don't understand what YOU are getting at. If it were a cure you were looking at then there would be a finite process to be financed or completed - as it is, it is an ever-ongoing procedure. In the UK at least that would mean long travel to have the procedure done and hefty outgoings - no-one will finance it for us in the UK or most of Europe. I've had PMR for 12 years - just think about what I would have spent on it.
Coniston was talking about how the treatment must be too feeble, or words to that effect. I was responding to that. Forgive me for describing this therapy in such detail. It is useless getting a good converstion going in North America, and everyone seems to be on the UK forums anyway. Forgive typos. Using PlayBook on train WiFi and it sometimes will not let me correct without deleting everything.
• in reply toPMRpro
Yes, thank you, PMRPro. The whole year spent in Harley Street could end up £6000 easily 
Having said that as you were able to correctly point out, PMRPro, this originally "derma" equipment has been applied in different medical areas. It might be worth keeping an eye on. Have an awesome Spring day!
Would make a 10-day trip to Switzerland look quick and cheap by comparison... 
HeronNS• in reply to
Coniston you can now buy a home model. Personally I wouldn't use it for pmr, but it could be good for healing injuries or something a bit more "defined" than the diffuseness of pmr. The therapy I get is all directed at the spinal column and I can't imagine being able to manage that myself.
• in reply toHeronNS
I would personally say, "alternative" may not be an accurate word for this type of "therapy" after reading. Yes, it seems that somewhat wires got crossed, thank you for clarifying for me, PMRPro. You probably picked up what I meant, which was so superb. xx
HeronNS• in reply to
Coniston and pmrpro I'm really sorry you feelthis way, and that youfeel it necessary to place treatment and therapy into quotation marks. I'm not easily hoodwinked, I have been recovering really well. You can't deny that to be at 4.5 after ten months and no flares, on the contrary increasing wellbeing, is not bad. But if you feel as you do, go ahead and report my posts and get them deleted as the last thing I want to do is cause harm to others. I thought it would be of interest to people who are looking for alternatives. FYI I suppose my out of pocket expenses for my physio which icludes more than light therapy will be less than $1000 Canadian for the year. Sry about typos.
We aren't going to demand your posts be deleted - and I haven't put anything in quotes. Nor is it anything to do with being "hoodwinked". However, I do think you are overreacting to what coniston has said - and presumably what I have said.
We are merely trying to explain that here in the UK this isn't really an option - there are, to my knowledge, just 3 centres, it sounds as if coniston has identified one in Harley Street in addition. For us, in our system, it would mean a commitment of a lot of time to travel and a lot of money out of our own pocket. Very few people, relatively speaking at least, have private medical cover and I would be surprised if it covered such a therapy. Getting private cover for an existing illness is very difficult/expensive so no-one else would be able to join in.
My comment about the "skin version" was because when I spent some time looking for this therapy in the UK the majority of the links I found were for dermatological purposes - and that is a very different thing.
Yes, to be at 4.5mg after less than a year is good - but you cannot say it is entirely due to the LLLT. A sample of one cannot say that "this works" and in any case there are too many variables. I started with 15 mg and was down to 5mg in a month - and was fine as long as I was on 5mg. As soon as I stopped I had a flare, obviously, but possibly I'd have been fine at 5mg for far longer. About a quarter of patients are off pred in under 2 years, some of them far less. If your long term maintenance dose is, say, 3 or 4mg, which is perfectly possible, then you would have been able to reduce steadily and relatively simply as you have done - by no means everyone has problems and on the forums we rarely hear from them. You have also done a lot with diet haven't you? That is also a confounder.
We aren't getting at you or the therapy that you are obviously getting something out of - we're just pointing out that, like the Swiss clinic the other day, this isn't something the average UK pensioner with PMR can really consider trying. In the same way, the therapies I have been able to benefit from here in Italy are not all easily available in Britain either. I mention them, and try to find sources in the UK - they are generally far more likely to be found than LLLT and almost certainly less costly - but they still have to be paid for by us.
I'm a pensioner, but have extra insurance through my husband's plan. I was appalled that you were apparently likening it to the Swiss clinic but misunderstood that you were referring to the cost aspect. I apologise. But you must admit that I do try to make it clear that there's been no prper research and it was always only an experiment. It would be great if the US and Canadian groups could get going. Re diet, I was trying to counteract sugar levels and bone thinning. The only really new thing is Vitamin K2 supplement - if that's enough to ease pmr then everyone should be taking it.
Not very knowledgeable about the product used in this discussion. However, will mention....along with Calcium, Magnesium and Vit.D3...K2 has had many studies done. I've used all of the above for quite some time. As with most supplements.....hard to say what the outcome will be. My DEXA was showing severe osteoporosis and the last one after being on Prednisone for several months showed only osteopenia. Good enough for me.
Thanks. Just rereading The Calcium Paradox, such an interesting book.
This is a serious question and I don’t want anyone to think I'm being sarcastic because I'm not. Is it reasonable to imply that if something cannot be accessed by a poor UK pensioner perhaps time should not be spent on discussing it? Where does one draw the line? I really do feel very unhappy that I ever raised the subject.
I would think there should be only very few subjects off limits. Then of course, I'm an American Perhaps something that is known to be a sham or in someway dishonest should be removed. Most other subjects can be of some help. Personally, I use supplements and believe in them....not everyone feels that way. I don't believe any subject should be dropped because of expense. I'm sure we are living different lifestyles. What might be worth the expense for one might not be for another. We're here to help one another. So far, I've found this to be a fantastic, helpful site. One that just may get me to the place I want to be.
You shouldn't feel bad, HerronNS. You've just presented a subject not everyone is familiar with.
Keep trying. CJ
Dear HeronNS,
This is not so much to answer your question but just wanted you to know I have so enjoyed reading your interesting posts. Found them extremely helpful, particularly re bone health. I have improved my diet and now take VitK2 and that is from someone who never could see the benefit of supplements before.
It is so difficult on Internet forums to gauge if what you write will be received as you intended. I rarely post but love this forum. All those that contribute have been so helpful. I really would have been alone without it and appreciate everyone's views and ideas to make this miserable illness more bearable.
A big thank you,
All good wishes ,
Irene
That isn't what I said, implied or otherwise. I've already suggested that maybe you overreacted to a comment that you hadn't understood correctly - that's not unusual on a forum where a tone of voice can't be heard.
I too find your posts very interesting - but if no-one points out this isn't easily available here then others may get their hopes up only to have them dashed. This is a charity based in the UK, so the vast majority of users are there. The other forum is also UK-based, although with quite a few US contributors. There are frequent comments made which don't apply in every healthcare system - most commonly about things that can be done in privately-funded situations. Newcomers don't know and wouldn't think that NS means Nova Scotia and you aren't UK-based.
Yes. But if you use your private insurance for any "expensive" alternative, let's say, for a course of 5 sessions or "cutting edge" therapies, wouldn't they increase your private insurance premium? I am sure that unless there are good effects from the therapy, these days, people won't keep paying for the "treatment" . Great to hear about this! Thank you for sharing, HeronNS
HeronNS• in reply to
They only know it is physiotherapy. We get covered for 80% of $500 per calendar year, but if I spend another $500 out of my own pocket the insurance kicks in again. All that's needed is referral from doctor.
Thanks everyone. Spent day in Toronto, mostly with friends but went to Gardiner ceramic museum. After telling you all how well I've been I now have a cold caught from dear hubby, which could help explain my hypersensitivity yesterday. My plan is to experience a traditional three day cold, so will be much better tomorrow, in Belleville with my lovely daughter.
Enjoying warm sunshine in Prince Edward County, eating ice cream outdoors. I heard 21 cm snow fell near Halifax (home)! Taking a chance and continuing taper to 4.5 as no pain or stiffness and cold nearly gone.
I saw the temp forecast today for Calgary was 23C and Seattle 28C - is that normal over there are this time of year?
Sry to delay reply, my Playbook is having a nervous breakdown. Interesting question but I don't know the answer. Historical data available on theweathernetwork.com. I think at this time of year weather can change very quickly depending where the systems are coming from. Take layers and raingear as you might for UK!
Really cheerful aren't you!
Oh I thought I was being practical!
Of course you can leave the rain gear behind because you could always buy new if needed!
If it will be warm it's easy - you do the same as here: umbrella!
It's the thought of needing the same as I need for the UK - that's an awful shock when suddenly you need a pullover and waterproof in July...
I don't ever remember being in Calgary, other than passing through on the train in 1968, and its climate will be very different from what I'm used to, which might be more like Scotland only probably sunnier (Ns on same latitude as Northern Spain).
Might as well update as life has been a bit different this week. Took o ernight train Halifax to Belleville via Montreal last Wednesday and Thursday. Caught hubby's cold and was unwell but functioning for about 48 hours. Nearly fully recovered. Tapering to 4.5 and not aware of any increased muscle discomfort. Maintaining vitamin regimen, and walking, but most other habits thrown out the window. Going home on Wednesday. Forgive typos, can't edit.
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