Alternative therapies

[HeronNS]

Just a little update. I'm starting to taper to 5 mg prednisone, continue to benefit from low intensity light therapy offered by a physiotherapist, plus my good diet (low refined carbs, high whole foods) and varied exercise regimen. I also actively avoid stressful situations. This is a taper using dead slow method. Started at 15 in June 2015. I'm 68 and have no other major medical issues, other than a diagnosis of osteopenia, plus a few prednisone side effects.

[Celtic PMRGCAuk volunteer]

Wow! Heron, you are doing so well - it leaves one wondering how much of that might be down to the light therapy? Great progress - especially helpful for your osteopenia, too, having reduced so successfully to this stage!

[HeronNS in reply to Celtic]

Yes, I am very pleased! I think it must be mainly due to LILT as that is supposed to work by stimulating the body's own healing processes. At first of course I didn't know what to expect, and at every stage I still wonder if this will be the sticking point, but apart from a little stutter at 7 mg so far so good, and I feel better all the time. Time will tell, I guess!

[Queenfisher]

Great to hear of your continued success- keep going for it!😊

[pollyg263]

well done heron to getting down to 5 mg in such a short time with no flares. keep up the good work

[Parijm]

I read about the low level light therapy on a post here not long ago and had a look at some equipment on the Internet. I feel I would like to have a go and wonder if my Rheumatologist might suggest someone. I agree with all the points you mention, diet, stress avoidance etc. Listening to our body. I have been stuck on 8mg for ages, increasing and coming down again. This week I felt stable and have dropped to 7.5mg! This website has made me feel more confident to 'drive' my own reduction programme. Like everyone I want to finish the Prednisolone asap but am aware of stopping before my body is ready to.

[HeronNS in reply to Parijm]

I can't imagine doing the light treatments on myself, at least not the form which I get. It involves a pad studded with small lights being placed on a section of my spine, with an adjustment to the light level, and sometimes to the position of the lights, every few minutes for about 40 minutes twice a week. My physiotherapist also does other things to help me as I have mild scoliosis and osteopenia as well, but the light takes up most of each appointment time. The lights are adjusted using another machine, and I think people who perform this therapy undertake fairly intensive training.

bioflexlaser.com/about-us/

When investigating light therapy you do need to be careful you're actually getting an effective version.There's an aromatherapy business near me where they also perform various alternative procedures, some of which are proven useless, and when I told the owner about the light therapy she showed me a little gizmo which they use. It looked like a small paddle and obviously could not be used as effectively as the equipment being used for my treatment. Not to say that it might help promote healing for, say, a small cut, I don't know, but the light has to penetrate your tissues to quite a depth in order for it to have any effect on things like inflammation so there are three levels in the bioflex system, and each level has four stages. It takes several sessions to work through each stage. I've been going regularly since November, and will within a week or two have reached the point where we will taper off the frequency of the treatments, and depending how I am possibly just have fortnightly maintenance, maybe even as long as I'm on pred, we'll have to see.

[Dianapmr]

Haven't heard about light therapy. Is it available on the NHS. I heard recently there was an NHS physio in our town - one who gave treatments as opposed to exercises by NHS physios (which are painful to do). Sadly our NHS physio has lost funding. Private physio treatments are expensive about £50 a session.

Patients in France pay 15 euros a session. I would be quite prepared to pay a similar amount to the NHS though no hope of that happening.

[HeronNS in reply to Dianapmr]

I live in Canada. I think there are only a few places in the UK that offer it, unfortunately. Now, there is another person on these forums who has been trying pulsed electromagnetic field therapy, and that is probably a lot more accessible and may offer similar benefits, although I can't testify to that.

Participating in these forums and based on my experience and that of some of my friends who have sought non-traditional methods of treating various ailments, as well as those who have gone the ordinary route, I think we in the Western world are long overdue for a revolt against current "health" care practices. We need the medical professionals and administrators as well as legislators to understand that there are other ways to promote health, and at least permit us to have access to these methods in a supportive, regulated way, the same way we get standard allopathic medicine. We still need to be protected from those who tout useless methods, but I can't understand why some things that are proven helpful (like the right kind of physio, as a really obvious example) aren't part of every clinic's toolkit. Think of the money that would be saved and the suffering that could be avoided if the focus was on actively promoting the health and wellbeing of all citizens, not just trying to mend us once we're broken.

[Dianapmr in reply to HeronNS]

Yes, I totally agree, the health services should promote healing practices particularly for PMR. Certainly massage should be regularly available as our muscles get so taught with this condition.

Terrifying to think what the metatric(or whatever) does to our bodies and the once weekly pill taken before food. Have refused to take both of these. A friend's son at uni studied the once a week pill and found it harmful. When I told my GP this, she knew but said she still prescribes it.

[Parijm]

Thankyou HeronNS for your information. It is evident that sufferers of PMR or any condition will want to explore as many options as they can. Learning of a new therapy can give hope but of course we need to be aware of its efficacy and likelihood to be of help. I will keep reading and looking things up as there has to be more to help than Prednisolone!

[Greensleeves]

Well done Heron , the light therapy sounds as though it's doing something positive.

I agree diet and exercise play a huge part in recovery.

Sadly exercise is too painful for some and regarding stress , I can't escape it as I'm a carer .

I blame stress for being partly responsible for the PMR diagnosis in the first place .

As well as the Prednisolone, the only relief I had pre diagnosis was sports massage.

Painful but worth it for a few hours afterwards.

xx

[HeronNS in reply to Greensleeves]

Hi Greensleeves. Isn't prednisone supposed to deal with the pain? If a person is still in so much pain they can't exercise (and I don't mean heavy workouts at the gym, I just mean something, really anything, to get started) then they must surely need further medical intervention? And I know stress is sometimes unavoidable. But some stress IS avoidable, so we do what we can.... I am fortunate that I am retired, but unfortunate because my workplace provided me with companionship and purpose. So nothing is ever perfect. I post about the light therapy because I think it helps us all to know about things that could help us deal with this annoying and unpleasant disease.

BTW I am not pain free. I can't run or jog more and a few steps because I have severe osteoarthritis in a couple of vertebrae and they protest if I cause much impact. I've recently developed a wonky shoulder - I think it has taken over from my hip which seems much better.... and so it goes. But virtually no PMR aches and I have full range of motion. And the best thing is lifting of the profound depression that settled over me when I was ill in the middle of last year's winter from hell.

[Greensleeves in reply to HeronNS]

Heron , I think you're doing wonderfully well and ( excuse the pun ) , showing that there is a potential light at the end of the tunnel.

The prednisolone leaves me completely pain free , although I still have the stiffness .

I am able to walk and do Pilates . I was thinking more of a dear friend who has other issues with her bones , along with PMR . She's currently awaiting a hip replacement.

She's older than me , I feel very sad for her .

It's one of those situations where you want to help someone but know it wouldn't be good for your own health issues .

I understand re: the depression. I think that's part and parcel and seems to go with the whole PMR enigma. Exercise is good for our Seratonin . My GP was against Antidepressants.

I am sorry you're missing your work colleagues and have other painful health issues . But thank you for sharing your experiences.

It is a joy to read positivity.

I'd love to try that therapy .

Very best wishes . xx

[HeronNS in reply to Greensleeves]

I am so sorry for your friend. I guess I was just coming from a place of still being a "hale" (apart from PMR) elder. I can't say the prospect of becoming a frail elder is particularly appealing. At this point I can truthfully say that being old is better than the alternative, but eventually I suppose the alternative will become more appealing.

[Greensleeves in reply to HeronNS]

Yes it's better than the alternative, for now .

Saying that , my grandmother is happy and always smiling and quite matter of fact about death . She's 95 now and said 'it won't be long now , I'll probably pop off in my sleep ".

Bless her , she was nervous about it when I was a child but older folks are more accepting.

Anyway less of that . We are alive and we are fighting back .

Take care Heron . I look forward to reading how you're getting on .

xxx

[Suetum]

Following your post I found a practitioner in the South West but she says that the advice on use does not recommend it for patients on steroids as may cause a flare. Were you warned of this or what advice were you given? Thanks

[HeronNS in reply to Suetum]

Hi Suetum. Yes, There were two caveats. I was told that prednisone interferes with the effectiveness of the treatment, so I waited until I was tapering to 7 and expecting my adrenal glands to be starting up again. Also my therapist started very cautiously, with a short session (about 15-20 minutes) at a very low level to see how I would react. She told me that if the treatment is too intense at the beginning it can increase pain. She has been very careful with increasing my levels of treatment, really very much like caution in reducing prednisone, and I have never had any untoward effects. I did, however, find that I was very tired after one of the earliest treatments. As I walk part of the way home (about 1/2 hour, with a ferry ride halfway through) I have since then almost always taken a tea break and eaten a small snack before the expedition home, and have been fine. I started the treatment in November and am only now very close to the top light exposure available, so it's taken over four months to increase the intensity. The therapist has monitored my progress very carefully, always asks how I feel and periodically checks things like range of motion, muscle strength, etc. She says I've responded very well to the treatment. She's also successfully treated several other PMR patients.

I would say that if your pred dose is down to that physiological level, as mine was, it would be worth a try, provided that your clinician is as careful with the treatment as mine has been. I started with one treatment a week for a couple of weeks, then it was increased to twice a week with the exception of a Christmas break (when my taper also stuttered) and starting next week I will be returning to the once a week treatment. After we see how that goes and how I feel we'll reduce to once a fortnight. I think eventually it will be a monthly treatment until I'm completely off pred and have no PMR symptoms, but she says that is going to be up to me.

It's good that I have some partial coverage for the cost of the treatment as it is adding up, but it's been worth every penny. Am now well on the way to be being at 5 mg and PMR symptoms are less evident than they've been since I averted a flare when reducing from to 10 to 9.

[HeronNS in reply to HeronNS]

The low intensity light therapy consists of using two different kinds of lights. There are three levels of intensity with four stages within each level.

[Suetum in reply to HeronNS]

Thank you that is so helpful. I am tapering to 9 at the moment so will wait till I get a bit lower. I do the healthy diet and have managed not to put on weight although a bit moon faced. Avoiding stressful situation is not always possible!!