Like so many others, I tried very hard to go the non-steroid route when first diagnosed with PMR in July 2013.
Tried everything suggested to me from a nutritional detox to multiple sessions of acupuncture. Unfortunately nothing I tried worked well enough to keep me functioning and be able to cope with both home and business obligations.
I now manage quite well on a combination of low dose pred and an anti-inflammatory diet. Would be interested to hear from anyone who has had success with a holistic approach.
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Queenfisher
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Queenfisher, a couple of other people have posted similar requests in the months I've followed this forum. I believe I still have a record of their names so will private message those to you. I don't know if they have posted recently.
I also tried just about everything along my 15 year journey. Nothing worked as a cure, but I did have some success with acupuncture. Being lucky enough to get a 12 session stretch via the NHS it kept me going all one winter. Unfortunately the nurse attending me was moved to a different location and although I tried others, they just didn't work in the same way.
I eat an anti-inflammatory diet as much as possible anyway, but some of the best AF foods I can't take due to an annoying hiatus hernia.
I suppose I'm following a similar route to you - I am on 5mg Pred for life and I have Bowen treatments on a regular basis. It really works for me.
Thanks polkadotcom. I am interested to know the acupuncture worked for you. Wish it had for me, I have a great acupuncturist I have used for all kinds of other things, but with the PMR it did nothing. Very frustrating!
For 5 years I managed PMR without pred - not out of choice but because the GP I saw simply didn't recognise it. For 5 years I never had a day free from pain, my lifestyle was limited and I lost out on many things. I spent a fortune on gym membership, my osteopath and Bowen therapist because those were the only things that kept me mobile. I tried other things, they did not help. Eventually I was given pred - and it was a miracle. Nothing would persuade me to go back.
Do not regard pred as the enemy. It isn't as simple as pred is bad, no pred is good. Without pred there is uncontrolled inflammation in your body and that in itself will predispose you to an increased risk of cancer and cardiovascular disease amongst other things. In that 5 years the inflammation probably damaged the electrical cells in my heart, I developed atrial fibrillation, and that means I need other medications to manage that as well as hypertension, also possibly due to the cardiovascular effects.
Pred may have its downsides - but so does unmanaged PMR. It can cause weight gain and osteoporosis because of lack of mobility, depression because of constant pain and inability to care for yourself or others as you wish. I could write on that for pages - I've seen both sides of PMR and pred.
Thanks for the words of caution PMRpro, I am appreciative of the wealth of experience you impart. Will most definitely continue to listen to my body and not get pred dose so low as to risk incurring other problems. Best!
Did holistic from May 2015 doing Tumeric, all organic, No processed foods. Was told about Bemer therapy Oct. 31 an electromagnetic mat you lay on for 8 minute session twice a day. I tried for six consecutive days and bought one. I could sleep on my side again after 3 days and squat down, get in and out of my car and I would say 80% back to where I was before this hit me. I can live with that - can golf again and hike but not the strenuous ones I did before - 3 to 4 miles most times not 10. My brother in California told me about this because he had friends that saw relief from symptoms of Mutiple Sclerosis, fibromyalgia and Rheumatoid Arthritis, so I thought it was worth a try and so happy I did so I do not have to go down the steroid road with all the nightmare side effects everyone writes of.
in reply to
Really?
I have scoured the internet and scientific papers for any positive information on electromagnetic therapy and can find absolutely no supporting evidence for it at all.
That's zip, zero, nothing.
The best evidence I can find for any benefits is the "placebo effect"
These units are hideously expensive and are making a few people rich whilst doing nothing for the chronically sick.
It's so much more difficult to be objective when a family member or close friend recommends something.
I think you are probably right - I was going to say the same and when I saw that DoctorOz endorses it I was even more of that view!
But here's a double-blind, placebo controlled, crossover trial. Probably peer reviewed - although the authors are obviously the choir master and the reviewers probably the choir judging by my experiences with papers in alternative medicine sent to mainstream scientists so whether it is really objectively peer-reviewed is another matter:
Though as I've said before - if placebo achieves a result satisfactory to the user - is that always wrong? Depending on the price of course...
in reply to
Know your feelings, I was skeptical also so tried for myself with life changing results. Everyone is different and responds differently. Go to YouTube and search Bemer therapy. Go to testimonials and there is a wealth of info. Including a video of a segment Dr.Oz had on Electromagnetic Field therapy. Can only speak for myself and results I have experienced.
I don't know how long you had had PMR - but there are syndromes that appear identical to it and the symptoms resolve in weeks with or without treatment. One of the criteria for a presumptive diagnosis of PMR is that the symptoms have been present for at least 6-8 weeks.
I'm not denying something worked for you - just putting another side.
Symptoms presented in fall 2014 and diagnosed in May 2015 and holistic approach all the way. Adding Microcirculation therapy has been a tremendous benefit for me personally. As stated in previous posts everyone reacts differently to any variety of treatments that are available. Personally I keep researching to find what helps me and share so others can research themselves.
Hello everyone, I am a little afraid to respond here in case I upset anyone, however, here it goes. I have had PMR and GCA for many years, managed with steroids, I can't tolerate the other drugs. I do still get the occasional flare up but find that I benefit from Spiritual healing. There is a website which has been created to send and receive loving healing energies, it's free. If anyone would like to check it out here it is: loveportalnetwork.com
What is most important to say is that complementary therapies are simply that complimentary to traditional medicine and not instead of. I have worked all my professional life in the NHS so this paragraph is most important.
Mgt1234...Thank you for posting the link. I will definitely check it out. I am a believer so certainly not offended by your post. I can't speak for others. We are all traveling a tough journey....I'm appreciating all the information posted. I've learned so much in a short time. I, now, look at these illnesses ( GCA/PMR ) entirely different. I am now going to up my prednisone dosage rather than tapering. I know the pain I'm in needs to be taken care of before I think about the end result. I thank all of you. Such a wonderfully kind group with such a wealth of knowledge. Bless you.....
I've been taking steroid treatment since diagnosis in June '15. I also felt that I should do whatever I could to mitigate whatever the underlying causes of the inflammation might be - and of course none of us really know the answer to that. Like many, I try to eat even healthier than before, and exercise appropriately. I have started treatment with a physiotherapist who gives me low level light therapy. Google Bioflex for more details. Only time will tell if this is really helpful but I have to say this, I had absolutely no difficulty reducing my pred dose (using DSNS) from 10 to 7. Then we came up to the Christmas break, and several weeks without regular treatment (I'd been going twice a week) not so easy trying even the .5 mg from 7 to 6.5. So we are going back to the twice weekly schedule to see how it goes, and I don't expect another break in treatment for at least a couple of months. That should give me a good idea whether or not it is helping as I am approaching a fairly low dosage. This alternative treatment has been shown through studies to be useful in treating the inflammation of rheumatoid arthritis. To my knowledge no studies have been done for PMR. But I figured I had nothing to lose. Even if I have to stay on pred for a long time, the lower I can get my dose, the better and that is why I think we need to keep open minds about alternative treatments.
I would totally agree that we need to keep open minds HeronNS, and that is why I posed the question. I have been on pred for 18 mos now, and although I am doing well with it at the moment, who knows what tomorrow will bring. Therefore I am wanting to evaluate and possibly try alternative methods of bringing the inflammation down that will help me get my pred dose lower. Medical science does not have all the answers, and although starting on pred was a miracle for me when I first began, I am very cognizant of the fact that it has the potential for some very serious side effects, so I feel the lower I can get my dose the less risk I face in that direction.
I welcome any more suggestions of alternate therapies that members have had personal success with and will be looking into all of them. I sincerely thank those that have responded this far.
It is basically a diet that attempts to avoid foods that are thought to be contributory towards inflammation in persons suffering autoimmune diereses.
it is believed, that whilst healthy individuals can, for example tolerate the nightshade foods, those with compromised immune systems may be more likely to suffer adverse effects from them.
The theory being that avoidance gives your body the best chance of healing itself.
Google exposes a wealth of information on the subject but you do need to sift the "wheat from the chaff" pun intended!
Personally I try to avoid tomatoes (where possible), all wheat and grain products, potatoes, rice, (except in very small quantities and then only Canadian Lake rice) I have never been a processed food person with the exception of sausages, but then I make my own anyway. I did all this and more before diagnosis (with the exception of tomatoes) so it has not been a change for me anyway.
All I can say is after a treatment I feel very relaxed and sleep like a baby but it needs to be a very gentle treatment to avoid pain.
I also practice Rekie
However my physiology is everyone is able to do it if they know how .It is a gift that cost nothing so should not be charged for .A lot for so called practitioners have jumped on the band wagon and are charging a lot for a treatments .Which I personally think is wrong. If you are open to something new, look for a Rekie share group in your area and go along and judge for yourself.
Its a oriental healing system harnessing the energy that is all around us .
Can be hands on or hands off no need to remove clothing .
I used it on my dog who had cancer in his mouth and although Vet told me their was nothing more they could do he lived 6 years after biopsy was done .No vet at the practice could understand why he survived so long and why he was so laid back despite all the treatment he had.
Placebo effect yes on a human I can understand but an animal would not have any idea what was going on .
He was the most laid back Jack Russell you ever saw
The definition of Reiki on Google is: a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being.
I've not had personal experience of it, but friends have, and some of them have even learned how to do it. They are quite matter of fact about it.
I think we can be quite sure that the human body has an energy field and some of the non-Western cultures have been able to study and manipulate it successfully. The light therapy I've been getting originated when a North American doctor was exposed to the healing effects of light therapy given to him by a Russian - this doctor had a long standing injury healed by the process and ended up chucking his successful surgical career and researching light therapy.
I posted above about the LLLt that I've been getting. I had a session yesterday, and after a conversation with my physiotherapist she made sure to give me a significant amount of time with the lights. I had been feeling not so great after trying to reduce to 6.5. (just one day at a time, never really got going with DSNS). As of this morning I have taken 7 mg again for five days, also I did feel a bit better before the treatment yesterday. By the evening I was feeling quite a lot better, and today much more confident that I'm at least safe at 7 (was getting a bit concerned about that). Once I'm sure I'm stable again I will try for 6.5, but not in the middle of a three week break from the LLLT.
I had PMR for 5 years without the doctors I saw being able to work out what I had. I managed fairly well - I was rarely pain-free and it did require a lot of changes to what I did but what made more difference than anything else were Bowen therapy and a friendly neighbourhood osteopath. I went to the gym every day Mon-Fri, starting with an aquaaerobics class and sometimes Pilates or Iyengha yoga - both of which helped a lot but had to be adapted quite a lot and I couldn't do them at the level I had before PMR. The best bits were the sauna and steam room! But after that I could move so I went home to work.
Then I had a massive flare - after having had a transient global amnesia episode, something no-one knows the cause of. That was when I found out what I had - I came here to our ski flat where I didn't have to fight stairs. I went up the mountain most days when the weather was good - and by the time I came back down I could move freely! I managed to get my skis and boots to the store at the bottom of the mountain so I didn't have to carry them - and after fighting my way into my gear I could just get to the gondola. The first couple of runs every day I must have looked a picture! But after a couple of hours doing very short runs interspersed with rests on the lift I could move almost without pain. The rest of the day I researched and by the time I went home I had found a description that fitted what I had perfectly, PMR - and eventually found a GP who agreed. Six hours after taking 15mg of pred I could move without pain. It wasn't perfect but a major improvement.
In the meantime I have had another major flare but worked out it was a mixture of the PMR together with myofascial pain syndrome. Here in northern Italy I was sent to a pain specialist in the local hospital who worked on the back muscles which were as hard as boards until all the spasm had been relieved. She also used a technique called quaddling or needling. It is commonly used here in mainland Europe and I know it is available in the US. No idea about the UK, I doubt it somehow, but it has similarities to acupuncture in that needles are used but is different in that the needle is on a syringe and saline or muscle relaxants are injected in several places close together. It burns at the time and is exquisitely painful but it works to stimulate the spasmed muscle to relax. It is rarely instantaneous but for me, although it helped immensely, I kept relapsing.
Eventually I had a wisdom tooth removed - it was affecting my bite and contributing to the whole problem of the spasmed back muscles - the pain specialist was just getting me moving again - and the effect of the compromised bite due to the wisdom tooth was sending me back within a few months. Since then I have been a lot better, the back muscles haven't the same strain on them!
I'm down to 5mg pred - 4mg is just OK but lower is not, but I don't think it is the PMR/GCA, I think it is more likely to be poor production of natural corticosteroid by the adrenals - pain doesn't come back, I am totally exhausted without what is, I suspect, "replacement" steroid.
I believe very strongly there is a role for alternative and complementary therapies in this illness. For some people with mild disease they may keep you off pred. I managed for 5 years but it wasn't comfortable and my lifestyle was severely limited. Since I now live in mainland Europe there is probably more available here than in the UK. But not even what I have found here was enough to manage entirely without pred. Bowen therapy has been a life-saver for me but it only repositions the muscles - your back muscles in particular will suffer badly from trying to find a comfortable position and eventually go into spasm - my back was as hard as boards!
However - if you develop GCA then relying entirely on alternative or complementary therapies is not advisable. If you have GCA that affects the blood supply to the optic nerve the only thing that will reliably prevent you losing at least some of your vision is pred, used quickly enough and at high enough a dose. PMR can sometimes develop into full blown GCA - and that can affect your heart and aorta as well as other major arteries. It is not something to play about with using only complementary or alternative therapies, you need an effective antiinflammatory to stop what is effectively a stroke affecting the optic nerve which can result in permanent loss of vision. sometimes spreading to both eyes. I'm not saying that because I don't approve of complementary or alternative medicine, there is far more to it than most UK doctors are prepared to admit and both are used in tandem with mainstream medicine here, it is something I have discussed with practitioners and most of them agree with me.
Both alternative and complementary therapies can be invaluable in helping deal with the side effects of pred and possibly can reduce the dose you need - but they cannot always safely be used as a 100% replacement. If the blood flow to the optic nerve is compromised you are at risk of going blind - irreversibly, as the optic nerve dies and does not regenerate. There are people on this forum who have suffered that.
I have been slated in the past for recommending what was described as "quackery" - it's water off this duck's back. It has its place - but is not, cannot be, a 100% replacement for pred. But many of these therapies can make life with PMR/GCA much more comfortable. I would always say try something that appealed to me at least once - if it helps that is a positive. But don't believe the claims that promise something miraculous, because to date there isn't anything that good. If there were then there would be nobody needing this forum!
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does anyone have any side effects from alendronic acid
Just a year in and clear about personal approach
Deadline approaching for feedback of the steroid taper web application
What do you think? Anyone had any strong side effects?
