Well, I have sat quietly on this site for over 2 years, but today I declare war on this Bowen fad that has overtaken this site. I am a qualified British GP and hospital doctor (MBChB,MRCP). I have PMR and GCA. Bowen therapy was invented by an unqualified Australian who called himself an osteopath (but couldn't get into the Australian association of osteopaths) in the last century. He never formally described his method, so today's practitioners are pretty much making it up as they go along. They are not wicked. They are just deceived. You can become a qualified practitioner with a paltry 14 hours training. (Mine took 6 years). It claims to treat everything from Asthma to Zoonoses - an absolute giveaway for a snake oil treatment. There are only about 6 reported papers in the medical literature about Bowen. Good medical trials are double-blinded, randomised, controlled, peer-reviewed and published in respected journals. Not one of those papers would pass this test. There are thousands of papers on steroids and PMR.
Ladies, you can do whatever you like to try to get well. But please, do not believe that Bowen therapy is a cure for PMR or will help you reduce your steroids. Two people who post on this site have had wonderful responses to therapy and I am delighted for them, but anecdotal medicine is not good medicine. If I posted a reply to every person on this site, then the site would be biased in favour of my opinions. I choose to restrain myself and stick to established facts. And I am a GP, whereas these other posters are not.
I am very sadly going to have to leave the site if this nonsense continues, because it is open to misinterpretation and could actually harm someone if they believe they do not need steroids or can reduce using Bowen therapy.
To Saxjody .. I am one of those people who is finding relief with my pain with 6 weeks of Bowen Therapy rather than taking Methotrexate twice in different forms and which made me ill both times and I have taken all the other Steroid Sparing agents which gave me lots of side effects .. When I went for the Bowen Therapy I was told by my Therapist that she was NOTable to treat or cure my PMR and has never led me to believe she could and has always stated that I must continue taking my prescribed medication.I have tried for 11 years to get off of steroids and getting to 5mgs a few times for a flare-up to occur again and Bang up go the steroids again ..it is good you are a GP and understand PMR, unfortunately for me I haven't had much kindness from my GPs and previous Rheumatology teams ,but I am now with a very kind , caring and understanding Rheumatologist. I see him next month and I will tell him about my Bowen Therapy. Over the years I have spent money on my Osteopath having light massage for my sore upper arms and shoulders and ultrasound to my lower spine but I didn't get the relief I am getting now . I don't want to mislead anybody, we are all different and suffer with our PMR in different ways . Living with PMR is bad enough without misleading people that Bowen is a cure .I have Family that have fallen out with me because they think I pop the pills for the sake of it,which is not the case , I have been told this year by Family that I'm PATHETIC because I can't get off the steroids and That is when I decided to go for the Bowen . We are all different and to get some relief from my pain is wonderful . I am going to continue until I see my Rheumatologist next month and see how I go from there .I am getting out more , and most of this year I have been housebound but at long last I manage my pain better. Best wishes trish29
Hi trish29, nice to hear your comments. It is true, people do not understand the pain we are experiencing and also do not understand why we have to take steroids etc. I really feel for you. I got my wife to read the book by Kate Gilbert - PMR & GCA a survivors guide and my wife understands now what I am going through. Like you, I do not think any one has ever claimed that BOWEN therapy cures PMR but if it helps with relieving your symptoms, then keep doing it. Peter
Thank you PeTee70 , Peter is my partners name ,He is very good to me but he is 75 and was getting to the end of his tether with me this year as I just couldn't get any relief from my pain and struggled to get up off the bed, but he has seen a change in me since having Bowen and I have a more Positive approach to PMR . I feel for you to, somehow I feel it must be harder for a man..Today is supposed to be a Good Day for me as we are out to lunch with my Grandchildren and Daughter-in-law -law and I am tired already ,just taken my steroids so hopefully I will be raring to go by lunchtime . Yes Kate Gilbert's Book is wonderful but my family have never had time to read it , I take it away with me as a comfort in case I get a Flare or need to look anything up while I am away .. Best wishes to you and hoping you have a pain free day, trish29
Yes I know what you mean by tired. I used to be so active and now constantly feel tired and keep having to take naps. I think the only way ahead is to try and be positive, it is difficult but its the only way ahead. Hope you have a good day out.
I was 70 when this all kicked off and half way through training for my private pilots licence, that's all stopped now, just have not got the energy!, PeTee70.
I have left my copy of Kate Gilbert's book lying around in obvious places in the house where hubby and visiting son might pick it up and have a quick look through. It does lend itself to dipping into, so maybe if it were left with something like the crossword puzzle or the sports section or whatever your family is inclined to pay attention to?
Hello HeronNS ..I have tried leaving my Kate Gilbert book in exactly the way you Describe BUT nobody has time to pick
it up and look at it let alone read it .. They are just too busy .
There lives are just so busy . I caught up with some of them today for lunch and they are pleased I am looking better and down that bit more on the steroids . That is why this Forum is so Beneficial when you are reading about other sufferer's and know we are not alone ..I will carry on regardless.. Best wishes trish29
Saxjody, although I haven't had any personal experience of Bowen Technique, I really don't believe that anyone on this site has ever claimed that Bowen therapy "is a cure for PMR" or that it "will help you reduce your steroids" - we actually repeatedly advise that there is no cure for PMR, and that at this point in time the only treatment known/proven to reduce/control the inflammation of PMR is corticosteroids, occasionally with the so-called "steroid sparers" being added in to aid steroid dose reduction in some cases.
From my understanding of this technique, mainly gleaned from hearing of others' experiences, but also having experienced a talk and demonstration by a Bowen practitioner, is that, of course, it will NOT do anything for PMR. However, PMR produces a lot of knock-on problems, and I do have an open mind as to the possibility of this technique having a positive effect on those problems.
Please do not consider leaving the site - everyone's opinion is most valuable and your's as a qualified GP no doubt even more so. Also if your post has highlighted that some PMR patients 'looking in' might have misunderstood or been led to believe that Bowen will cure them without the need for steroids, then it will have proved a timely warning.
I have already replied to you over on the other thread where you said this. I won't repeat that here. What I WILL repeat, however, is that I, nor anyone else on any of the forums, nor any Bowen therapist I have met, has ever claimed that it will cure PMR. GCA has never been mentioned to my knowledge and I imagine I have probably read more comments on the forums than many others. If you had read a few more you would know that there are far more than 2 people on this forum who have said they have benefited from Bowen therapy.
Frankly, whether you - and other doctors - spent 6 or 16 years getting your qualifications does not impress me at all in this context. On this forum we exchange information about things that have helped us - and there are plenty of people who have found that a few sessions of Bowen have relieved pain that they have had for some time - pain for which the only answer their GP had had was "Here's a prescription for painkillers" or - even worse - "Well your blood tests are fine so it can't be anything..." where "important" was implied. Or it was "depression" - there are quite a few of us that was implied to.
I first developed symptoms of PMR nearly 11 years ago. I was still 51 (just) and was a member of a gym which I attended regularly. After a few months I couldn't do step classes properly, I couldn't spring up onto the step. I thought I was simply unfit. As time went on it got worse and finally I couldn't use the cross trainer for more than a couple of minutes without what I now know was claudication pain. For the next 5 years I repeatedly went to the GP practice with no result. The blood tests were normal so there couldn't be anything wrong. I saw a rheumatologist, it was OA she insisted and was extremely rude to me the following year when I got a recall and, being a good girl, I turned up for the appointment. I KNOW one GP had decided it was attention-seeking of some sort. I got not a single bit of help - except a prescription for the ibuprofen that was his answer despite being told it did nothing at all for the pain.
Someone recommended Bowen to me and I decided I had nothing to lose by trying it. My life was already greatly restricted - I couldn't go somewhere if I couldn't drive there and not have to walk for more than a few minutes. For the next 5 years the occasional session with an osteopath and sessions of Bowen every 5 or 6 months kept me upright and mobile enough to fall out of bed (literally) and get to the car to drive to another gym with a pool. After an aqua session in a warm pool I could move reasonably well for the rest of the day. The general muscle pain and stiffness of PMR never went away, nor did the tendonitis and bursitis, but the Bowen kept the muscle spasms that would develop every few months due to the poor gait under control. After begging for help, I was referred to the musculoskeletal clinic - a glorified physiotherapist who told me there couldn't be anything wrong with my back as I could touch my toes and he couldn't. I don't know if he thought he was being funny or clever - he was certainly rude and dismissive.
Never once in those 5 years did it occur to me to feel I was being badly done by by the NHS. Until I had a TGA (transient global amnesia). The "stroke lead" to whom I was referred by the incompetent consultant of middle-eastern extraction who decided I'd had a TIA (no evidence at all according to my head of medical physics clinical scientist husband, and he had also decided the TGA wasn't that but alcohol withdrawal) decided it might be epilepsy and I shouldn't drive. At that point I could barely move, I could barely get out of bed - the GP my husband called handed a prescription for Voltarol suppositories. How the hell he thought I could use them I have no idea. Bowen got me upright and walking - just 100 yards or so but the trochanteric bursitis it was also beyond this lot to diagnose stopped me doing much more. I was pretty well stuck in the house. I got up stairs on my hands and knees.
When I had a repeat of all this 3 years ago the local hospital here identified it all within a couple of hours. They also sorted the back muscle spasms out with some therapies that aren't to be found in the UK. One is something called "quaddling" in German here, "needling" in English. It is used all over mainland Europe and in some ways is akin to acupuncture - which I assume you also regard as quackery? Although it can also be done with either a muscle relaxant or cortisone it is usually done either with a dry needle or with saline in the syringe. It works. There are more things in medicine than you were taught at UK medical school. There are many more that are discussed and used in countries whose languages you don't speak.
There is no real evidence that methotrexate or azathioprine will help people reduce their steroid dose - three papers done on small cohorts over a short time, one says it does, one says it doesn't and one doesn't know. The consensus on the part of the rheumatologists I have discussed it with - including doctors in Germany and Italy - is that it has no place in GCA at all and really there is no evidence they have seen that it really helps in PMR. MTX sometimes does appear to help people reduce - to start with but over longer periods of time a massive flare often appears. There are two possibilities there: either the patient doesn't have PMR in the first place but LORA or the reduction in dose was because the autoimmune activity was low, less pred was needed as a result. But doctor after doctor insists that a patient who can't reduce to their timetable should go on one of these so-called "steroid sparers" - that is anecdotal too, no different to us saying Bowen therapy might help some of the pain someone has. A lot of this pain looks like PMR pain and patients may be on a higher dose of pred than they need to try to manage it. Much of this pain will be reduced by higher dose pred but then reappear as the dose drops, it is mistaken for a flare and the dose raised again.
But I will tell you one thing - the gentle physical therapy that Bowen is has no side effects. Massage and physiotherapy can both lead to an increase in PMR symptoms - no-one I know has said that about Bowen. Do you also tell your patients not to waste their time going to a spa for a "wellness" session to make them feel better about themselves? Do you discourage them from experimenting with diet in an attempt to gain some control of their illness and how they feel and look? If you have never felt a need for any of that then I salute you - please don't deny us mortals some pleasures. A session of Bowen can be as relaxing and uplifting as a far more expensive visit to a spa.
I also had trouble getting my inflammatory condition diagnosed and it could have caused me to lose my vision.
I have biopsy proven (currently) GCA.
I was seeing a doctor at a well known, award winning hospital in New York City, U.S., I began to get strong headaches, nausea, dizziness. A high C Reactive was found in my blood tests. I had been treated for migraines for several years.
My mother had GCA.
One neurologist wanted to test me for GCA. At a later visit, the head of neurology, said he would not test me, because I was "too young" (58) for the disease and had only one marker (my SED rate was normal). He said my migraine headache had "mutated" into a different form and gave me a different medication. The medication didn't help. I went to several doctors seeking help. Four months later, a neuro surgeon I had been seeing for a different condition, asked if he could do a biopsy for GCA, the high CReactive Protein result had him worried. I agreed to have the biopsy.
The biopsy showed the enlarged macrophages and broken cellular walls and GCA was diagnosed and I was started on 100 MG's of prednisone.
I have some peripheral vision loss in my left eye.
I no longer see physicians at this well known, acclaimed hospital.
Symptoms of this dangerous, fast moving inflammatory disease were not taken seriously.
I have now also been diagnosed with mild PMR and a dissecting cartoid artery.
I don't use Bowen, but have found that gentle stretching and the anti inflammatory diet helps.
I agree with PMRPro that these diseases are under tested and under estimated by medical professionals. They are serious, painful, debilitating and can greatly affect quality of life. Symptoms need to be considered seriously. Passing off GCA symptoms can lead to a loss of sight.
I can and do endorse response by Trish, Celtic and PMRpor to your posting.
To write "But please, do not believe that Bowen therapy is a cure for PMR or will help you reduce your steroids." and then claim you have been continously reading postings on this site and then say "Well, I have sat quietly on this site for over 2 years, but today I declare war on this Bowen fad that has overtaken this site.".
Not one shred of evidence have you posted where anyone has ever said any 'it cures PMR or will help you reduce your steroids".
Can you point me to a single posting where this has been said?
What has been said frequently that some people find that Bowen can help them gain relief from pain - that three one hour sessions in consecutive weeks, which you have to pay for - if there is no improvement, then it is not going to work for you. This statement has been re-inforced by patients who have found relief within the three weeks and others who have not had any relief with the three sessions and the Bowen practioner has told them - 'no more sessions it is not for you'. This is honest.
As a GP who has PMR and GCA, you probably have speedy access to medical people whom we have to wait to see, some for many months, for, on average, 15mins (if we are lucky) and many of those medics have little or no experience with PMR and even less with GCA.
Perhaps if you had not refrained from passing on some of your expertise over the past two years you could have helped some patients who are sometimes quite desperate for help.
Yes, I had GCA and I have now been in remission coming up for 5 years on 31st December.
I had one of the rarer side effects with pred (there are 83 listed side effects for pred) and ended up in a wheelchair, a zimmer frame and a walking stick. I resisted Bowen for well over 2 years, it was the biggest mistake I have ever made during my journey with GCA.
I went and within three sessions was out of the wheelchair and using the zimmer frame less. Then monthly sessions and able to do away with zimmer frame. I still occasionally use my 'folding' walking stick. I now go once in six months for a booster.
Do I know how it works - NO Did it work for Me - YES.
And the best thing about it, it comes with NO side effects at all.
I would add that without a brilliant GP (who had had a GCA patient many years previously and none of the 4 GPs in practice she was in at the time had recognised it and that patient lost total sight).
I came along 20 years later and she was determined that would not happen to me and I was fast tracked to an brilliant Rheumatologist so I cannot ever thank my medics enough. I was lucky.
Over the past 10 years, I have seen, met and heard of patients that have lost total or partial vision. I have recommended that people download the BSR Guidelines on both illnesses, print them off and go to A&E has a matter of urgency.
Finally, I know two hospitals in the UK who have been sued over loss of sight so not all medics a clued up on PMR or GCA.
Look at Adnamaxx's posting. S/he has been diagnosed for only 4 weeks, is dropping steroids speedily and is already talking about Bowen because of the bias on this site. Bowen is a last resort when nothing else works - not something you need 4 weeks after diagnosis. Steroids are pretty effective for the vast majority of us. That's why I flipped today.
I am happy to leave the site to you Bowen believers but take care you don't bring the place into disrepute.
I see you are 'happy to leave the site to you Bowen beleivers'.
So you still will not share or help others with PMR and/or GCA.
You could try, instead of just reading people's pleas for help, just for a change and use your expertise in other fields.
I don't believe in many things and always insist that people check and double check, yes even prescriptions that GP's issue with the Pharmacist for compatibility, and double check any homeopathic remedies with a Pharmacist.
And if Bowen helps a patient wean more quickly and successfully off pred or to a lower less toxic dose, so much the better. The longer we have to stay on pred the harder it is to wean off it. Maybe if the alternative helpful treatments (no one says cure) were available early on in the illness we would all be better off. If someone is diagnosed quickly, and many of us suffer a year or much longer before diagnosis, and get their prednisone as first line treatment but it is backed up with Bowen and similar helpful interventions (diet, stress reduction, exercise, etc) maybe we would have far fewer people suffering the really bad side effects of long term steroid treatment.
I am one of the patients who decided to try Bowen - and I am very glad I did. I have many of the PMR/GCA and steroid add-ons, severe tendonitis, muscle wastage, fatigue, peripheral neuropathy and adrenal insufficiency. I also have T2 diabetes (nothing to do with Pred) GERD and Fibromyalgia (do you dismiss that too?) late-onset asthma, Osteoarthritis (hip replacement and knee replacement due in the next couple of months) and am hypthyroid............and I've got fed-up with listing them, it could make me depressed.
When I first had Bowen therapy, my therapist told me that it wouldn't cure anything, that no one, not even the man himself, understood just why it worked, just that it did. To say that I was sceptical would be to underestimate how I felt about it. However, when I stood up from the couch after my first hour-long session - well, to put it mildly I felt as if a great weight had been lifted from me, I could stand straight and I could breathe more easily. There's more to it than that, but I doubt if anything else I typed would be understood by you.
It worked for me - and if anyone asks me, that it what I tell them. I make no claims about it, nor do I urge anyone to try it. It gets mentioned when I am asked about it is all.
Should I give up my sessions because you don't believe in it?
"And I am a GP, whereas these other posters are not."
That is it in a nutshell isn't it? I really had thought the years of being patronised "Don't you worry your little head about such things, Doctor knows best" were past but it seems not. Whilst we may not be able to write MBChB after our names, you might be very surprised to find how many of us have also worked as healthcare professionals. How many of us also have degrees in science and are able to read medical publications with understanding. How many of us have spent many many hours searching the medical literature for answers when we were failed quite comprehensively by all levels of care. Not just in the UK but in the US as well.
Some of us spend our leisure time working to create and run support groups, web sites and literature written in language the ordinary man in the street can understand so that other patients know what it is they are facing when they are handed a prescription and a sheet of paper telling them to reduce so, so and so and who, when they go back to their doctor with a problem are greeted by them being dismissive of their concerns. A few of us work alongside doctors to help produce this educative and supportive framework - and have continued to do so in some cases well after their own illness has gone into remission and far beyond retirement age. A few people also (wo)man telephone helplines for scared patients to seek help at night or weekends or when no other support is available in GP practices where you have a 2 week wait (if you are lucky) to get an appointment. And some of us are involved in the research that should make things better for patients in the future.
These people have not "sat quietly on this site for over 2 years" - they have got off their seats and contributed to many people feeling supported and empowered in seeking answers to their problems when they felt alone. You probably know the significance of minor niggles, whether this is something you could safely leave until Monday - Joe Public generally doesn't and while I know for a fact that I have been the reason several people have turned up at A&E - I also know they got the care they needed to avoid loss of vision and, in a couple of cases, worse. There is a good reason that the DVD about PMR/GCA is called "You are not alone".
I can only add - in view of the views expressed in this thread - that my GP, who was a rheumatologist in a previous life, and my pain specialist, who is both a fully qualified and experienced anaesthetist and pain specialist and now a GP, both fully support the use of this sort of alternative therapy if it helps reduce the pain their patients are experiencing. They both also support the use of an adequate dose of corticosteroid and very slow reductions to avoid withdrawal discomfort. My GP tries to get me to reduce even more slowly than I already do. There is an entire department in one of the regional hospitals that studies using alternative therapies to support patients with chronic illnesses undergoing long term treatments. You may not be a believer - but I know a lot of doctors who are.
Where are the randomized, controlled, double blind trials, peer reviewed and published in respectable journals? If you are as scientifically inclined as you claim the lack of evidence should concern you. You are always posting links to other publications. Where are the Bowen ones?
You are a self-appointed expert in all matters medical but haven't put yourself through rigorous medical training. That is why you pooh pooh my qualifications and is the only reason I mentioned them. Doctor- bashing is another of your biases. You are running a faux GP practice through this site, dispensing wisdom on areas way outside your expertise. Good luck to you. Why not get qualified and then you might respect the letters you currently despise that I worked hard to obtain.
You are the reason the Internet is sometimes iffy and have hijacked this site and this illness for your own personal purposes. Get a life lady.
And you keep coming back at me!
Let it go now. We can agree to disagree without being disagreeable. This was a debate about scientific evidence, not a personal slagging match.
Out of interest, why would someone with your qualifications sit quietly for 2 years and offer no support to patients who are very frightened. I'm an RGN and don't claim to know all, but when I see something that I can offer advice on I do.
I personally could have done with some reassurance over the last 2 years, but I'm sure your aware of that if you've been reading my posts. PMRPRO gives so much of her time supporting others in this group, something you've failed to do. So I would be greatful for the slanging match which you've started to end, it is a disgrace that you tell people to get a life, I wonder if you tell that to your patients too. Keep up the good work PMRPRO, Celtic and everyone else who gives up their time to help others.
in reply to
Are there randomised, controlled, double blind trials into the use of prednisolone to treat PMR and GCA?
I know that many patients are prescribed methotrexate, Leflunomide and Mycophenolate for PMR and GCA, is there any randomised, controlled, double blind trials to support this? Or is it a matter of physician opinion, observation and anectodal evidence?
At the end of the day which treatments carry the less risk?
"""Ladies, you can do whatever you like to try to get well. But please, do not believe that Bowen therapy is a cure for PMR or will help you reduce your steroids......and..............Get a life lady.""
I fear that the nature and tone of this thread risks upsetting people 'looking in', especially the 'newbies', who are after all very poorly people looking for help, something which I hope we have been found to provide to the best of our abilities hitherto. Can I therefore suggest, please, that we now give closure to this subject.
Pasteur was widely reviled by his peers because he believed in germs. The discoverer of the miracle cure prednisone won a Nobel prize, but later committed suicide when the side effects became apparent. GPs don't know it all, and the wisest humans are those who humbly admit the depth of their ignorance and are willing to listen to others.
Totally agree with Celtic's 2nd response of an hour ago. I think many are forgetting what this forum is aimed at - those newly diagnosed, usually confused and frightened people requiring help.
We may have different views of what has helped our recovery and what hasn't, and quite rightly make suggestions to others. But they are only suggestions, not edicts.
I have asked questions, learnt a lot, and answered quite a few when I feel I can contribute - hopefully some of my advice has helped others.
So can we return to what our aim is - helping others on this very rocky road we travel.
If you don't like the advice given, you don't have to take it and if you don't want to give advice, then you don't have to. Everybody is entitled to their opinion, but can we do it without getting vitriolic, please.
I have read through this thread carefully, twice, and with a growing sense of dismay. Some people have used it as an excuse for unleashing a whole load of resentment. People can give their money to whatever alternative therapists they like. However I don't think I have ever seen a website for any therapy as light on science as the Bowen organization website. Those of us who are involved with PMRGCAuk know we have a responsibility on this forum to safeguard the reputation of the charity. This goes for the way we treat one another as well as for the quality of the information we exchange and promote. So please for the charity's sake think twice before attacking any other member. And be aware that these forums are open to anyone. There are several medics who read posts in order to learn about patient experience and it would be an abuse of their position to offer clinical advice.
University Hospital North Durham Chronic Pain Services
The number of people living with long term conditions – and in an increasing numbers of cases, multiple long term conditions – is growing. The aim is to provide a more integrated community based service that offers better support for patients and service users, more education in self management, and, when people have problems managing their conditions, quick support to specialist help to avoid an acute episode and hospitalisation.
The Care Closer to Home strategy supports and enables the delivery of this and many other aims, including developing alternatives to hospital admission and enabling earlier discharge. Pain Management services at the Northern Integrative Health Practice in Sacriston, Durham helps meet this challenging ambition and provides NHS patients and service users with the following:
•pain assessment and treatment
•education, advice and support
•promotion of health and well-being
•prevention of illness or injury
What pain treatments are provided to help me?
The consultant at UHND Pain Management Centre here at the NIHP Durham will carry out an assessment and produce an individual Treatment Plan. This will consist of one or more of the following treatments and services:
•Acupuncture,
Bowen Technique,
Physiotherapy & Corrective Exercise
•Counselling, Psychotherapy, Psychology & Sleep Support
•Wellbeing & Self-Management Mentoring
You will benefit from the majority of these services at the UHND Pain Management Centre within the NIHP here in Sacriston, near Chester-le-Street, Stanley and Durham City. Some services, such as scans or intensive procedures, will require appointments at UHND but we will tell you in advance if that is the case.
Hidden, was very interested in your post. I am newly diagnosed and am suffering quite badly. The Recommendations" made on this site are, I hope, just that, recommendations. I would not be "brain-washing, or influenced, but I do have an open mind to such recommendations, whether complimentary or "real".
I will give anything a chance. and that is why I have booked one session - purely for that reasons, to make up my own mind!
I found this forum about a year ago when I was newly diagnosed with PMR. I received very little information from my doctors other than it is an autoimmune disease, I would have to take Prednisone long-term, and I was to watch for sudden headaches or loss of vision. I had never heard of PMR before, and I knew no one who had it, and I felt very alone, sick, and lost. Reading all the posts here, whether it was about meds, symptoms, or adjunct therapies to try, gave me a lot of insight into my disease, and gave me some direction in dealing with it. As I read each post, I could see that different things helped different people and this disease affects each of us differently too. As I have worked through the first year of my PMR journey, I have had a GP, rheumatologist, neurologist, pain control doctor, physical therapist, chiropractor, and orthopedic surgeon trying to figure out the source of a headache that I had for 8 months. I won't go into all the gory details, but I ended up with some pretty invasive procedures that each doctor was sure was going to cure that headache. As each of those failed, I tried Bowen therapy. I was one that it didn't help. I tried 6 sessions just to make sure it wasn't going to work, and unfortunately it didn't. Was I mad and thought I was being conned by some snake oil cure? No. It was actually very relaxing, and although it didn't help what I went in for, I was so stressed out by that point, that the therapy itself was so calming that it did me good in that sense. What finally got rid of my headache? I hadn't been able to do massage because it seemed to flare up my muscles, but I found a massage therapist who specializes in myofascial therapy (with a lot of work on trigger points) & after 2 sessions in August, my 8 month headache started to dissipate and by the third it was gone and hasn't come back. I've continued to go to have him work on some the muscle cramps and knots that continue to plague me in other areas. These are all things that started with my PMR. This man does not have a medical degree, but he has more knowledge in this area than any of those with the initials after their names did. And before you think I'm some poor uneducated sap who believes anything I'm told to go try, I'm a dental hygienist with a pretty good medical education myself and anatomy & physiology knowledge. This is a rather long way to comment on the medical doctor's claim that Bowen is no good. I think it's up to all of us to educate ourselves on whatever treatment we choose to try on our bodies. When you've tried all the things the doctors suggest, and no one can tell you what to try next or who to go to when they've exhausted their ideas, why not try something else that isn't invasive and isn't going to cause any harm? If you try it, and it doesn't help, just don't do it anymore. Seems pretty easy to figure out to me.
I'm a science/tech writer, daughter of two medical professionals, and personally have little regard for 95% of alternative therapies myself and definitely think some need to be regulated, and many should not be funded by taxpayer money on national health programmes. But I also think people are welcome to try what they think might help and though I may think the positive results are most likely the good old placebo effect from believing it will help, well hey, that's a good outcome right there .
But we all struggle(d) enough with these conditions without being belittled for personal choices. And I do agree with others that it would certainly have been a plus to have someone with a medical background participating and supporting others (there would certainly be room for example, for some polite and thoughtful discussion on any concerns about particular alternative approaches).
In the time I've had and recovered from PMR and met so many others with it, the single most common thread we all have had is misdiagnosis, incorrect treatment and little understanding of the actual experience of having PMR or GCA from GPs and sometimes, rheumatologists. A lot of GPs would benefit from taking 10 minutes to google the conditions! Typical example: I know a man put on 20mg preds and told he could come off it in 2 years when PMR 'burned out'. Nine months later he was still on 20mg, expecting to remain on 20mg. So many come here stating their GP put them on 20 or 30 or 60 mg preds for PMR -- all well above the recommended starting dose of 15mg here rheumatology.org/Portals/0/.... Too many say and think we shouldn't have pain while on steroids, but we nearly all have pain while on steroids and really struggle day to day. I saw endless, appalling examples of how too many medical professionals ignore and patronise older people and don't listen to them (having this condition as a younger person (early 50s) was a real eye opener).
I feel so fortunate to have GPs who were always supportive.
My father was a much loved prof of medicine of international profile. One of his greatest concerns was this: too many who went to med school were excellent students but hadn't a clue about bedside manner -- medicine was about working with people, not diseases. He considered bedside manner to be at least and often more important. In that context: the tone of the original post is truly depressing.
Hi Doc, Last I heard , nothing cures PMR/GCA. prednisone is the only treatment I've found for this disorder, and it does help reduce 75% of my pain. my docs have freely given me opiates for the remaining 25% pain. Wow!
i continue to experiment with "snake oil" remedies to avoid using opiates.
I agree, I am taking Methiotrexate and there seem to be a lot of posts saying there is scientific proof that it will not help in PMR but Bowen therapy does not seem to need such rigorous testing.
The one thing I will say is some people seem to make you feel better just by talking to them, they are the people who would have been called healers . The present system with G.P.s where you are just randomly allocated to whoever is free does not leave you feeling cared for.
Alternative practitioners do not work like this and so can inspire confidence in people who are not listened to.
To "Celtic", "Volunteer", "Dorset Lady", "Piglette" et al. Please continue your good work; lots of us, myself included, would be lost without you, and I have an excellent GP practice.
I choose to have Shiatsu every 6 weeks, and find it very beneficial, but I know it is not curing my pmr symptoms. There is surely a link between mental and physical wellbeing, which I would be foolish to ignore. I cannot, and don't speak for others; we need to make up our own minds.
Thanks for your kind words. This forum helped me greatly when I was first diagnosed completely out of the blue. Never heard of GCA, let alone knew it's effects ( more's the pity). My view us that If I can explain or help others going through what I went through then I'll chip in with my tuppence worth, but I'd be the first to say, what was good for me, MAY be good for you, but it MAY NOT!
Totally agree with your comments about mental and physical wellbeing. That's sometimes where our traditional medical treatment falls down.
And thank you from me too, Charlie. Having come out the other side of the PMR and GCA tunnel, and remembering well what it was like at first to feel so alone with a diagnosis of something I'd never heard of, if there is something I can pass on from my experience that helps just one person, then I'm happy to help.
And you, just like many other contributors here, are helping too - just hearing how you are finding Shiatsu beneficial may just grab the attention of someone else who might be considering it. For me, it was Tai Chi/Qi Gong classes that I found really boosted my feeling of well-being - the energy boost was almost instantaneous following each class.
Here's to your PMR 'journey' continuing smoothly, Charlie.
Wow, what a can of worms. I would be interested to know what caused the medical doctor to post this criticism of Bowen. It appears to have come from a place of misunderstanding. I think we can all learn from this, that there is space for open discussion about alternative therapies. And I agree completely that none of this should have included insults of others. One reason this is hitting a nerve with so many may be because we are, for all our gratitude to prednisone, deep down terrified of it and what long term treatment will ultimately do to us. Of course we will try anything to lessen our reliance on pred, and increase our feelings of wellbeing and control. If our chosen alternative therapy works for us, and no one is hoodwinking us into giving up our necessary steroid treatment, then whose to say that any of us are wrong? I for one am grateful when others share what has worked for them, and if I find anything that helps me, I in turn will share it.
Sometimes when writing and not talking face to face words and phrases look different. We don't have the luxury of looking and reading expressions.
It is informative - and I quote - ' a can of worms' but we are all adults, mainly over 50 and as 'newbies' are most likely to be in the same age group are well able to sort the wheat from the chaff.
When Pain Management Clinics, which are run by the NHS, are using it and other therapies, to assist people who have Chronic Pain perhaps it is because they recognise that alternative therapies do help some people and to those who have Chronic Pain and are referred to a Pain Management Clinic then it must be a blessing that some of the help offered does not involve more drugs as nearly all of these patients are already on many drugs.
I leave you with good wishes and with the hope that all of you with PMR and/or GCA have better days.
What is Bowen therapy? I live in the US and had pmr and now have Gca. I have only used prednisone. My Rheumatologist is talking methotrexate but there are no positives I can find. There is a trial drug tcz but no solid results yet. So Doctor I agree with you. Unfortunately the cure is worse than the disease, but what price eyesight.
I suggest you google it - "bowen therapy therapists list usa" should bring up a suitable list of links so you can find out a bit about it and whether there is a practitioner near you who you could ask for more details.
It is an alternative or complementary therapy - hence the disagreement that has arisen. Nothing will replace pred in protecting your sight since you have GCA, Many of us have PMR, all of us with considerable skeletal muscle problems. Some of them don't respond too well to oral pred at the doses we are on but some of us have found it helped for particular aspects such as back/neck/shoulder pain.
However - whatever the symptoms any of us have to deal with, I believe that if there is a therapy that others have found to help reduce their pain levels or improve their feeling of wellness it is worth investigating. They may not be for everyone - but even a good massage that makes you feel slightly better about yourself and your patient journey is worth it in my book. Bowen can also achieve that for some of us - but is far gentler physically.
I had PMR for 3 years and was on various doses of prednisone. At each relapse there was pain until the higher dose kicked in. Then came GCA. There is muscle fatigue from the drug and I have developed issues I.e. Sugar and pressure. For me personally it's more the prednisone destroying my body than the disease. But I have access to my doctors always. My GP and I text after hours and weekend if I need him. It makes life a little easier or comfortable living with this disease. But a nightmare being on steroids. It's nice to have this group. I feel lucky to have found this website. Thank you all for writing and sharing.
What can it hurt? I just check in from time to time & wonder if many people are not put on too many meds to the point they really don't know what is helping & what is not. None of the medications are easy to take & have significant side effects. So if Bowen therapy serves no other purpose that to offset depression seems worth a try. I appreciate all the time many of the bloggers put in on this sight.
Nap, I have also experienced both PMR and GCA, and my sole treatment was Prednisolone. Methotrexate is a disease modifying drug and sometimes added when a patient is having difficulty reducing their steroid dose, but it is used alongside Pred and not alone. A large trial has taken place with Toxilizumab but as you rightly say there are no published results yet.
With regard to your question about Bowen therapy, I have no personal experience of this therapy myself but the following is how Bowen has been explained to me in brief by a Bowen practitioner:
"It is a gentle hands-on treatment where the therapist works on the fascia, the connective tissue that wraps around muscles, which they believe can become twisted and cause pain - often somewhere else as the body compensates for the original injury. Although it is not known how the technique works, it is believed that it sends the body into a deep state of resting so the muscle tension is spontaneously released. If results aren't seen within two or three sessions, clients are advised to stop."
Thank you for the explanation. I don't have muscle pain right now. But the weakness that is a side effect from the prednisone is horrible. I know it gets better as I reduce but I've already had 1relapse since July so am on 30 down from 40 for 2 weeks. 30 for 2 weeks and probably need another 2 weeks on 30. At what pace do you decrease?
Nap, like you I am still on a high dose of preds. I have been on 60mgs for 5 weeks, came down to 50 just over a week ago, and in 2 weeks will come down to 40 mgs, then see my Rheumy again and hopefully keep on coming down, but maybe a little slower. Luckily apart from a little soreness in my head, but no need so far for any painkillers, things have been alright. As you say, the weakness and tiredness are the stealers of you lifstyle, and I pray that I eventually get a bit of myself back rather than just being an invalid. It is a sould destroying disease.
Nap, when reducing from these high doses following a flare, it is often easier to get back down the second time around, but only to a point just above where the flare occurred, which then needs to become your 'maintenance dose' for a little longer than the first time around. If you are someone who had raised blood test markers at diagnosis of GCA, then these should be repeated prior to each reduction and used as a guideline together with your symptoms. However, you might find it more successful to reduce in 5mg decrements rather than the hefty 10mg you are doing at present. That should also make it easier to see at which point any symptoms are returning and quickly increase back to the previous dose, remaining there a little longer next time around. It's very much trial and error in finding what works for you but generally the smaller the reduction the more successful it is likely to be.
"Complementary medicine refers to healing practices and products that work in conjunction with traditional medicine. For example, a cancer patient receiving chemotherapy may also undergo acupuncture to help manage chemo side effects like nausea and vomiting. Alternative medicine differs in that it is not used as a complement to, but rather as a substitute for traditional therapy. An example would be a cancer patient who forgoes recommended chemotherapy and instead chooses to treat the disease with specific dietary changes"
These terms alternative and complementary unfortunately tend to be used interchangeably. This could be one source of confusion.
I certainly never got the impression on this site that Bowen was being recommended as a cure/substitute for conventional meds. I've got Parkinsons and there is more than one medication which is used successfully to improve the quality of life in spite of nobody really knowing why it works. There's a whole raft of research based on using drugs already used for one condition which have been found anecdotally to help with another condition in persons who have both conditions. Where would this research be if nobody listened to anecdotal reports from actual patients? People are not idiots. I tried the Bowen and no claims were made by the practitioner. It didn't do anything for me but I am quite prepared to believe others whose experience is different .
A friend of mine was diagnosed with cancer, I believe of the pancreas. He was given the proverbial three to six months. He pursued not only the latest in standard care, but also followed up with non-traditional treatments, most particularly Chinese medicine. I'm not sure if he did tai chi or qi gong as well. He maintained a high quality of life for two years, and died peacefully in his home with his family beside him. He was in his late fifties. What he said was the Chinese medicines helped him enormously in dealing with the usually debilitating side effects of standard chemotherapy, etc.
I've been a member of this group for about four years and have never felt that the mention of Bowen therapy has taken over this site. It is mentioned occasionally as an option to try in conjunction with medication.
Apart from a lot of general knowledge about GCA and PMR the main thing that has stuck in my mind is the need to reduce steroids very gradually.
I'm very grateful to have found this group and thank everyone for sharing their experiences.
I was diagnosed with PMR almost a year ago - starting prednizone last March. It works but I have had flares at 13mg and 10 mg coming down from 20. I am at 13 again and experiencing another flare. I have tried to control it with Bowen. She is supposed to be excellent and also teaches the technique. I have gone twice and after each time my
Pain has increased dramatically. I don't believe I should go back. Yesterday when I left I could barely walk.
Oh dear. As a Bowen Therapist I can testify to the wonderful results I have had treating people with all sorts of ailments. Snake oil it is not but you are entitled to your opinion.
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A lot of GPs would benefit from taking 10 minutes to google the conditions! Typical example: I know a man put on 20mg preds and told he could come off it in 2 years when PMR 'burned out'. Nine months later he was still on 20mg, expecting to remain on 20mg. So many come here stating their GP put them on 20 or 30 or 60 mg preds for PMR -- all well above the recommended starting dose of 15mg here 
your history of PMR, GCA
GCA OR STIFFNESS FROM PMR
PMR - increased risk of GCA
PMR morphing into GCA
