Came across this on twitter
New research re Biphosonates: Came across this on... - PMRGCAuk
New research re Biphosonates
50 Replies
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Thanks Keyes
Complicated stuff to digest but the headline conclusions are fascinating - and a bit worrying..?
I'm sure you'll get loads of responses to this one!
MB 
PMRproAmbassador
Ooops - thank you! Hadn't see this notification when i posted on VasculitisUK.
It is just another level of "are you really sure" in the alendronic acid story. Nothing would induce me to take it - and to date I was right, my bone density had hardly changed in over 7 years.
The success of bisphosphonates has been due to superb marketing of a new drug - whose feet of clay are beginning to emerge. What an appropriate metaphor...
Mmmm.. like many commercially available products, a triumph of marketing over quality maybe..? 
Not sure about quality - but a triumph of marketing yes. And a lot of doctors were convinced and cannot be unconvinced. What they learn at a critical stage of their training is difficult to undo...
Well said, could explain a lot about the standard Pred + AA script used by many doctors..?
Very likely...
My temporary GP treated me like a naughty child when I told her I'd never taken my AA and explained why (i.e. younger male, no family history, never so much as a bruise, played lots of sport, load bearing physical stuff, good diet, done my homework on Bisphosphonates, etc etc)!
A GP locum treated me to a lecture on Alondronic acid as well, when I went to see her about something entirely different.
What a 'privilege', El50 - I hope you're grateful for being lectured at by a medic who probably knows little about your personal health context?! ;-/ 
Really grateful Mark!!!
Well, El50, I'm not an expert in these things: but you are in very good company here for a wider (and possibly more accurate?) perspective!
Thank goodness for this excellent site.BUT I do wonder how many of these brain washed Medics would blindly follow their own protocol.
I do know several who are VERY broadminded!
I think that we could do with a few more of them.
The reason I said this was ---I went to see a locum GP with chest pain at the end of September.She did my BP.Sats.and took my pulse all fine. so she lost interest in my initial complaint and gave me at least a 5 minute lecture on not taking bisphosphonates. BUT I went back and saw my own GP last week c/o still off breathlessly and have now found out that I have heart failure.--- So afraid that I was not too impressed!!!
I would make a complaint about the locum via the practice - idiots like that who can't see the wood for the trees could kill someone.
Sorry to hear you have heart failure - what are they doing? Do they know yet what it is due to?
Thank for your reply PMR pro ---I have got cardiomegaly (Picked up on recent chest Xray) because of sudden bilateral leg oedema in Sept. - and now have dyspnoea on exertion. Waiting for a BNP test to come back done on Monday, and to have spirometry test on Friday.When I saw the locum I told her that I had bilateral lower rib pain in a band around front to back. I believe cardiac signs are not so precise in females so I wasn't sure what it was. Have had a clear abdominal and pelvic CT Scan.The other GP's in the practice are great.On the blood request form the GP, he wrote down that I was on steroids. am on 6mgs. -so dont' know if there is a connection.
So in limbo at the moment.
Do tell us what they decide is the cause of the enlarged heart.
I have atrial fibrillation which is almost certainly due to the autoimmune part of PNR/GCA having damaged the electrical cells in the heart - and that can lead to heart failure. I must remember to ask my new rheumy if HE thinks we should be monitored - the guidelines say we should in GCA. So many GPs just dismiss everything as "it's the pred" - rather than "Maybe its the PMR/GCA"...
in reply to PMRpro
Hi PMRpro,
The original " tweet " was from a Prof in Primary Care who is very into evidence based medicine. She commented that she wouldn't take biphosonates herself and that much more research was needed into the basic science as well as RCT's.
Her tweet prompted some responses, one of which was this.
ti.ubc.ca/2012/01/24/a-syst...
It's all very interesting stuff, especially since it's not clear what exactly the evidence base is!
What's not in doubt is the personal and NHS costs of fragility fractures. It's a shame that dietary measures and weight bearing exercise aren't promoted more. I would love to see a large RCT on the use of Vitamin K2.
HeronNS in reply to
Here's another: ti.ubc.ca/2012/06/14/a-syst...
One person on the PMRGCA forum said she was seen by an orthopod who asked "why on earth are you on AA?". He positively snorted when she told him what we are told. I'd believe that group of medics before the average GP and non-specialist who was brain-washed by the drugs reps.
Dentists are very unenthusiastic too...
My sister has been taking it for a few years now for another autoimmune condition. I keep trying to discuss it with her but she believes it will help. There are other domestic issues going on so I don't like to put too much pressure on her. It does worry me because of all the things coming out. I have told her that I refused to take it. She has had scans and says Dr says she needs it. Scary.
There was something on the radio about the findings a some months. I actually contacted one of the authors about. They had taken femurs from people who had had hip replacements and compared those who had taken bisphonates with those who had not. I believe it was quite a small number of people so they are not saying the findings are totally conclusive, but I think they may be on to something.
Well we are right to be cautious. I hope our primary health careers keep abreast of these findings. Thank you for the post!
I'm not yet on osteoporosis drugs but have been following the research for a couple of years. These drugs seem less than helpful.
Health and medical research studies, paid for by vested interests like pharmaceutical companies or food manufacturers, are often of poor quality. Nevertheless, these studies seem to influence medical professionals.
in reply to Joydeck
I don't think that's true. For a drug to be licensed there needs to be a randomised, placebo controlled trial which is what happened with Alendronic acid etc.
The problem is that the clinical trials only follow up patients for a short period of time, there needs to be ongoing research into the long term consequences.
For me the issue is the prescribing of these drugs without a DEXA to prove that they are needed.
Joydeck in reply to
Unfortunately, a randomised, placebo controlled trial doesn't guarantee the quality of trial design, execution and reporting.
Hi Joy, I agree that drugs have to go through extensive trials lasting several years. The problem it seems with bisphosphonates is that you then need to see the long term effects of people taking them which is not really possible during trials and that seems to be what is happening now.
The Cochrane review re Biphosonates and steroid induced oesteoporosis.
cochrane.org/CD001347/MUSKE...
Cochrane reviews are important as they look at all the research and " pool " the results.
There seems to be good evidence re spinal fractures but not so much for non spinal prevention.
PMRproAmbassador
I really do suggest people go to the discussion on VasculitisUK where there are several links which are well worth a read.
healthunlocked.com/pmrgcauk...
But just in case you don't, here is the Conclusion from one of them, a systematic review done in Spain:
"Conclusions
- There are no proven clinically meaningful benefits for bisphosphonates in postmenopausal women without a prior fracture or vertebral compression.
- Because of the small magnitude of effect and the high risk of bias in the RCTs, it is unclear whether bisphosphonates cause a clinically meaningful reduction of hip fractures in women with a prior fracture or vertebral compression.
- For any new class of drugs indicated to prevent bone fractures, it is essential that a clinically meaningful reduction in hip fractures be demonstrated before licensing."
Systematic reviews take all the known work and look at it all - it is an assessment by an unbiased and independent group. Which is more than be said for most of the documentation to be read about bisphosphonates, especially Fosomax, the original alendronic acid.
It is a parallel to the use of statins - there is no conclusive evidence they make any difference in women who have not yet had a cardiovascular event - but we are still put on them. It is a different matter for men and for women with a history of such an event and I have no beef with that - but a lot of us do not benefit from being exposed to their side effects.
Read Your Bones by Lara Pizzorno - way to go re taking care of your bones -
National Osteoporosis site report on the above.
nos.org.uk/news/2017/march/...
Mind it would not be my drug of preference there are others listed on that site which I would prefer if I ever needed too.
Bones till 97% even though I had GCA and a high doses of steroids and 5 years before it went into remission. Bone density never changed.
Yet another study showing that Biphosphonates are not the panacea. However most of the studies I've looked, at thanks to all your posts, do not involve patients like us who are taking glucocorticoids (Prednisone or Prednisolone), and that's where the Docs will try and convince us that they are right in their thinking.
The more I learn and understand about bone health, the more I am convinced that Magnesium and other micronutrients are woefully under researched and not considered at all by NICE in their recommendations for prescribing Calcium and Vit D supplements. The BNF (British National Formulary) only lists magnesium products as antacid preparations or as osmotic laxatives to be used prior to bowel surgery!
Keep up the good work one and all.
PS Don't forget that Calcium and Magnesium shouldn't be taken together. They are antagonistic in bone formation, or so I've read.
hindawi.com/journals/jeph/2...
How much of the COMB recommendations did you adopt Heron? I don't somehow see you doing jumping jacks??????
i use this as proof that food works! No jumping jacks for me as I have such bad osteoarthritis in my spine!
But you do walk using a weighted vest don't you? I really think this is something we should be making more of on the forums. Of course - I don't NEED the weighted vest - it's built in...
Yes, plus the Nordic walking several times a week, as well as regular walks every day, plus lots of physio and a few yoga exercises and tai chi....
But basically - ordinary achievable for most of us exercise is adequate not only to maintain bone density but also to increase it. Even when you are on pred.
Exactly. I was pretty fit before pred, although never athletic, so it was just a question of adding things which would challenge my skeleton, like the weighted vest, or keep my posture upright, like the Nordic walking, and improving sense of balance, the tai chi. Every one of these things was added to what I used to do for a specific reason, and it doesn't hurt that I enjoy these activities.
Thanks HeronNS, I've read it. very valuable article
I found this a very I interesting article. It seems there is very little fracture rate difference between those taking biphosphonate medication and those not but if I have read the article correctly, those on BP medication have far lower bone volume due to microcracks.
This is a great concern for those of us who have been on long term medication as I have been own (alendronic acid) for 6 years. I was on this even before I was diagnosed with PMR. My doctor has advised me to remain on it for as long as I have PMR which is only one year.
Thank you for the link.
Sandi
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