Hi again i'VE successfully got down from 20mg to 15 to 12.5 within 4 weeks of diagnosis. I have been told that I should go down to 10 within next few weeks and am slightly apprehensive about this from what I have read. Would bowen therapy help and when would it be best to start...?.Prior to dropping or when I try and drop? How many sessions would you recommend and for how long?
Also realise that it's a big drop but don't haVE smaller denominations of pred at the moment...but go back to rheumatologist on 6th November and hoping he will give me some 1mg as GP refused to. Any advice about how much to drop would help. On a positive note I find exercise and more control of my diet has meant that the moon face and weight gain has not started as yet...when should I expect that to start? Hope someone can help me thanx
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Adnamaxx
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You have reduced very quickly, four weeks to go from 20mg to 12.5mg. I should ensure you feel good before going down again. I only had 5mg to start with from the rheumatologist, he never told me there was a lower dose. I found this quite difficult, but now have 1mg tablets too. Why won't your GP give you 1mg? Thinking about it mine wouldn't either, I went to another GP who just wrote me a prescription in the end.
Bowen seems to work for a lot of people with PMR. I must admit it was a total failure for me. Book three sessions, my therapist offered a discount if I paid for them altogether in advance! If you get no relief after the three sessions give up, it is not for you. I hope it does work though.
The Bristol group recommends six weeks on 15mg, six weeks on 12.5mg then one year on 10mg.
I cut out simple carbs and gluten as I heard it stopped the moon face and it does seem to have worked. It kept my weight reasonably stable too. I did get hot sweats though which were dreadful and also fluid retention. It started pretty soon after diagnosis. You do not have to get the steroid side effects, there are around eighty two of them and I don't think anyone has ever been so unlucky to get all of them!! Some lucky people don't get any.
Thanx yes they offer 3 sessions at a discount. Think I will give it a go. Yes I too get sweats. Intend to stick to good diet as much as possible as like the feeling of being in control that brings anyway....but not beat myself up over occasional treat.
I started on 15preds in August and reduced to 12.5 then 12 and just gone down to 11 on 24th Oct. I have managed this with no real problems and feeling better due to side effects of preds being less .i have put on weight and have moon face but have really good diet struggle anyway with weight due to thyroid illness
When I ordered my repeat prescription from pharmacy I specified I wanted 5 and 1 preds .Intend just to reduce by .5 at a time .From site it appears slow and little is the best way forward to prevent flares occurring
GP informed me would need to be on medication for at least two year so their no hurry to get off it I don't want to go back to the extreme pain .fatigue and disabling life before Preds .
Lots of information on tapering Steroids on site so have a read through.
That's very encouragin. Will just drop to 12 when I get my 1mg. Tabs. My GP was adamant that I follow what the rheumatologist said and not got strength to argue as soon as I get those 1mg I can be in control. Thanx and hope you continue to feel good on lesser dose
Did you know that that Predict isilond also comes in 2.5? That's essential if you want to drop the dosage by 0.5. I think they are the only coated ones,so you might want to ask about Omeprazole if you are taking 5 and 1mg.
Yes I did but thanks for info .I am on Omeprazole had to ask GP for it as it wasn't given initially ,intend to cut the 1 in half to get the .5 fiddly but doable with pill cutter.
There is absolutely NO medical evidence that Bowen therapy will help you reduce your steroids more quickly. Bowen therapy is not a cure for PMR or GCA. It is an unproven, alternative therapy with no good research papers behind it. By all means have some therapy, but know that you are firmly in alternative medicine territory - some would say quackery. In my opinion, you might as well dance naked under a full moon - it would be cheaper.
Saxjody, I will respectfully disagree with your comments regarding Bowen therapy, and the other alternative comfort measures we, as sufferers of PMR choose to use. While none of the treatments we know will cure PMR or GCA, , my experience with Bowen Therapy as a gentle massage technique , resulted in an overall, general, sense of improved well-being. I have also used chiropractic treatments, acupuncture and various vitamin supplements to the same end . None was a panacea, but all, in modest degrees contributed to my sense of taking some control in addressing the physical, emotional and psychological challenges I face with this disorder.
While I agree with your position that scientific research regarding efficacy of Bowen tx is lacking, the experiences of many of will stand as anecdotal support that this and other non-scientific measures may be helpful in our day-to-day living with this disorder, with each providing some element of comfort. From that perspective, I believe it's reasonable to encourage others to continue to seek comfort measures that while they may not cure the disorder, will certainly do no harm.
Dancing under a full moon may even Do some good, what with the benefit of gentle exercise and all.
I do appreciate the varied perspectives of participants on this forum.
Saxjody, you would probably enjoy the book Trick or Treatment, I have just read it. It looks at clinical trials on various alternative therapies. It does seem that the placebo effect is often the reason for improvement. I was quite surprised at some of the things said, having tried various alternatives myself. As the book said some of the treatments may be harmless in themselves provided they did not stop people using coventional treatments as well. The website Quackwatch looks at a lot of alternative therapies. I must admit Bowen had no effect on me at all but it does seem to help a lot of people with PMR. In the book they reckoned the fact people were relaxing during treatment also helped.
I too will respectfully disagree with some of your comments about Bowen. It is, in the meantime, practised by many registered physiotherapists and included in their approach to back pain in particular. It is currently the subject of a 2 year study in the north of England to look at whether it can help with resistant back pain where the pain clinic is at a loss. The first therapist I went to practised in a normal, mainstream, GP practice. I know quite a few very sceptical people who tried it as a final resort - and were convinced by the result for them.
No, it does not cure or even manage PMR - and I have never ever suggested that when recommending it. What it often can help with is the "add-ons" which appear to be frequently exacerbated or even caused by myofascial pain syndrome or muscle spasm - and Bowen does seem to have an effect on the trigger points dispersing them somehow. I don't care HOW it does it, it does help many people. It also doesn't require one to beg on bended knees to get the GP to do something other than hand out pain-killers without end - and please don't deny that happens.
There are many things practised all over the world within the context of mainstream medicine that are po-pooed by the average UK medical practitioner. I have had treatments from GPs and specialists in Germany and here in Italy that work extremely well but which I cannot access in the UK. Mention of some of them in the UK brings a similar response from GPs to yours to Bowen. Unfortunately, the UK disdain to read research written in any other language - and often in English too if it didn't originate in the UK.
Purplecrow has already said the rest. I struggled with the concept of suggesting an alternative therapy on the forums for a long time. Until several of my friends in support groups had also tried it with considerable relief. Now I do suggest it. I shall not be stopping until someone shows me it has caused damage.
I'd echo what some others are saying and definitely avoid trying to drop again that quickly. All the research indicates that too-fast drops create problems such as flares that make it harder to reduce and makes people remain on prednisalone even longer. Perhaps your GP is not familiar with the separate but similar documents from the US and UK professional associations of rheumatologists that give specific guidance on doing reductions. 20mg would already have been a very high starting dose that now, would be considered atypical for most cases of PMR and the reductions are far faster than the recommendations. I'd also get a pillcutter and cut your pills to the needed dosage and follow the rheumatology document guidelines. You shouldn't really need 1mg pills for quite a while; even on the final reductions it is possible to divide the 2.5mg ones with a pill cutter (my best friend was my pill cutter! ) The PMRGCA-UK website has a link to the UK document.
On moonface etc -- many people, maybe most, never get these side effects on the doses of preds given for PMR, and they do tend to go anyway, when they are there, at 10mg doses of preds and below, which most people reach fairly quickly. These side effects are more likely on higher preds doses taken over a longer period of time; as for GCA for example.
I watched my diet as well, and never had any issues. I actually was one of those who have the opposite side effect from preds -- I lost weight on it. This is also a potential side effect though much less common.
I was diagnosed with GCA on May 4th and am currently on 20 mg steroids. For the past 7-8 weeks I've suffered with MYO and been waiting for it to ease, with the past 2 reductions - instead of which it's got so bad that I am now almost immobile. The agony getting out of bed, or up from a chair (or even reversing those) is indescribable. So I have finally booked a Bowen appointment for November 10th. I'll book up for the 3 sessions to start with and let you know how I get on.
I do so hope that it works for you. My first one is booked for the 10th November. I am now almost immobile; in so much pain, and putting my hopes on the Bowen.
Hi I had my first one last week next one booked for Thursday and can't wait. I am not sure if it was the treatment but felt so much better the day afterwards. I really hope it works for you too. Good luck and keep me posted x
Hi Adnamaxx - first of all can I apologise for not responding to you this morning - I was distracted! What I would have said then is this (and it isn't any different having read one member's diatribe again Bowen):
Bowen isn't something that will make any difference to normal PMR pain and stiffness, the right dose of pred is what you need there. That is what you are seeking with the reduction plan you are using - the lowest dose that manages the symptoms as well as the starting dose did. You have been very lucky so far - you have been able to reduce by a lot very quickly and that is great. You may be able to go straight on to 10mg and still be fine - only trying that will show if you can. If you develop pain and stiffness when you try it then my response would be to go straight back to 12.5mg where you are obviously fine - and then reduce in smaller steps. We in the support groups, from the experiences of many patients over years, believe that 1mg at a time is more than enough - that is based on anecdotal evidence at present.
Bowen is something that MAY, not necessarily though, help with some of the other things we develop alongside PMR. Having PMR does tend to make us walk badly and that can put strain on our back muscles - they may become very tight and hard and eventually unable to cope with any more strains and they go into spasm. There are several ways this could be dealt with - some are easily available in other countries but are not common in the UK or you have to wait for a referral to a doctor who does use the techniques. Cortisone or muscle relaxant injections are often used to relax the muscles. If there are signs of myofascial pain syndrome then they may be given into the trigger spots. But these are things you have to get via a doctor.
The trigger spots and the hard, tense muscles can also be addressed by massage - but that can be a problem in PMR, making the muscles very sore, especially if you aren't used to massage. Physiotherapists and sports massage therapists can also do manual mobilisation of these trigger spots which you can feel as hard knots in the muscles. Many of us have the experience that Bowen therapy can also help in many cases - and it is particularly gentle with no risk of side effects which is why many of us feel it is reasonable to say on the forums it has helped us.
I would say that if all you have is generalised stiffness and pain and that is being managed by your current pred dose, try the drop to 10mg first - and then work from there. If you can get to 10mg without problems now, you are down to a relatively low dose of pred and then you can work on a slow reduction in small steps to get even lower. If you have problems with this next drop - then reassess your next step.
And since I find a Bowen session as uplifting and pleasant as a massage - I'd say you can always try it anyway and see if you feel any different or better.
I can only add - in view of the views expressed elsewhere 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.
Thank you for taking the time to address my issues. Going to give Bowden a go nothing to lose except ££😊! Feeling a bit achy still on 12.5 for past two days and guess you are right that I need to stay at this level for a while longer.
Update ... had first bowen therapy today. Lovely lady and relaxing experience if nothing else....chance to lie down for an hour. At one point the pain in my neck was unbearable and lots of the moves seemed to focus my neck pain.....This has subsided now and interestinly was where my PMR pain was the most acute. She said she could feel a lot of fluid in my left shoulder this is a pre_PMR pain that has been bothering me a lot lately and it would be great if she can help me. Intend to do 2 more and hope it helps. Thank you for all your comments . Good to hear your varied opinions.
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) The PMRGCA-UK website has a link to the UK document. 
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