Studies of bisphosphonate in Therapeutics Initiative letters

Hi Kathleen, I'm not sure if I understand the first of your questions. By "taking drugs that affect bone density" are you referring to meds given to try and prevent osteoporosis? Or to meds given for other medical conditions that may be contributing to osteoporosis? As to whether someone in this situation should be given either biphosphonates or Prolia, I don't feel qualified to render an opinion ... though I might be able to hazard a guess when I better understand the first part of your question.

Your observation that bisphosphonates lead to no improvement in some people is, I think, well supported by the evidence. Of the articles I've come across (including the three letters that are the subject of this post), the phenomenon of the high number of patients needed to treat in order to confer any benefit is cited.

Patients posting on the merits of the osteoporosis drugs, as well as many authors of articles, often seem fixated on the concept of the relative "rarity" of catastrophic side-effects ... an argument that is probably doomed to a stalemate until further data accumulate. However, there seldom seems to be scrutiny given to the frequency and extent to which these drugs may or may not actually help ... likely because there's no way to measure benefit in terms of actual fracture prevention -- how can one quantify an event that hasn't happened? -- but instead having to rely on the surrogate outcome of increased bone density (which doesn't necessarily equate with bone strength).

 

If one has osteopenia but not yet has osteoporosis should they be prescribed drugs that supposedly treat osteoporosis? Seems like some people have been prescribed drugs for a condition they do not yet have is what I am saying whether it be Prolia or any biphosphonate.

Also, some have been prescribed drugs without even having had a bone density test.

Why do some people with quite severe osteoporosis fall yet do not break bones whilst others fall and break bones multiple times but have either no issues with their bones or only mild osteopenia?

I am thinking that this whole bone business is more complicated than a number given as a t score!

I have picked up on the bone strength vs bone density too which I think is explaining some of the anomalies I just mentioned.

We may not be doctors but we are researching and finding out information that does back our decision not to rush into taking any of the drugs.

 

Hi Kathleen

My understanding of the osteopenia/porosis problem is that osteopenia is just a name given to the early form of osteoporosis and that only T-score levels differentiate between the two variations. So I can see the logic in giving osteoporosis drugs to patients with osteopenia in an attempt to interfere with the progress of and possible ward off the full blown disease. I'm not sure that I like the application of this sort of logic since without regular scans to monitor the progress of the disease, there seems to no way to know at what stage you are at, especially since the progress is not linear and constant. (and probably can be affected by other factors but I'n not sure about this). I do know that some patients (my daughter for instance) have had osteopenia for many years and it would not have been sensible to have her take osteoporosis drugs for all that time, particularly with all the side effects. Presumably the relationship between bone density and bone strength is affected by the way that calcium has been previously deposited and could be affected by the 'toughness' of the bone which is related to its susceptability to crack propagation. Data on this seems to be in short supply but I think that this is worth a little spare-time investigation (It could also be pointless!)

If the drugs were harmless candy I might agree but as they have side effects and half lives I feel they should not be taken lightly if at all.

As the bones are measured again a 30 year olds and few are as lucky as my husband to have bones that good then some wear and tear must be expected.

Dr reaffirmed my belief that the drugs are not the best or only choice to deal with osteoporosis. She also offers other ways to attack the health issue of our bones.

I know you have chosen the AA route Aristotle and that is your choice.

As far as I know most doctors have stopped prescribing the drugs for osteopenia.

It is always good to hear your opinions Aristotle and it is fine if we do agree on everything as this is a very contentious subject.

I do like to know or deduce the reasons or reasoning behind things, hence my comments on Osteopenia and Osteoporosis. I.m sure that there are many who would reach other conclusions apart from what I consider the logical one.

Surprisingly, we do agree on most of the drug items.  If I had been more aware of what was as you say, a contentious set of drugs I may not have been so (complacently) keen to trust my doctor without first doing the checking up like I now do.  Having now been taking AA for around four months, I shall at least continue until the year is up and then hopefully have a scan and see what has happened and make my ongoing decision then. At the moment, most of the observable side-effects seem to have disappeared and the only remaining evidence is that I have thicker nails and my Lichen Planus is only slowly going back into remission. I wasn't aware but am pleased that most doctors have ceased prescribing AA for Osteopenia.

I ordered two books but they are still in the post somewhere. I just hope that they are as good as the bits that I've already seen.

Thanks for your comments. All the best.

No worries Aristotle. You have to make your own choices. We do agree on most things for sure.

I do not know why I hesitated taking AA to begin with before I even had done much in the way of reading My gut just said not to!

Then I thought about my difficulty swallowing sometimes and choking occasionally. From there I progressed to further reasons from my oral surgeon and general exploring on the Internet.

Thanks for your comments and interaction. I do appreciate it.

I have been diagnosed with osteopenia and my doctor is dead keen that I start AA.  

Given what a klutz I am, I'd be in tiny pieces by now if my bones truly are as fragile as my doctor fears they are.  

Surprised that your dr would be pushing this, as it seems by now to be general consensus in the medical community that drug treatment is NOT indicated for osteopenia. I'd get another opinion or two from drs in other specialties than the one who wants you to start the medication. Rhematologists as well as endocrinologists are both familiar with osteo- conditions.

Oh I said no right away, and will say no to anyone else and to all of the meds.  No second or third opinions required.  I'm stubborn that way!  She got much more keen after attending a workshop on osteoporosis so I have some suspicions who sponsored the workshop. 

Hi Anhaga

What were your T-scores and is your doctor really justified in using scare tactics. If you haven't had fractures and it's still at the osteopenia stage, there's a good chance that you are not as bad as fear would make you think. If your T-scores aren't too bad, there os probably no need to rush into AA and possible nasty side effects. The choice is obviously yours but there's a lot of sense in the papers by Dr and I'm hoping that later on in the year that I'll be able to change to a more natural form of protection.

Hope that all goes well for you.

 

Aristotle, this is the strangest thing.  I had the scan (at my request) and a summary was issued to my doctor.  She told me I had osteoporosis.  A few days later I asked for a copy of the report.  The report did not include the T-score.  I ws placed in category, low bone mass with greater that 20% risk of fracture within 10 years.  The doctor claimed that she did not have access to the full report (apparently she does, but who knows?).  I had already signed up for a special program at the hospital where the scan was done so I went to find out if I could get hold of the full report - this is given to us when we go to the program.  I haven't been called with a date yet and we are now talking several months ago, scan was in September.  However I did get in touch with the individual who prepares the packages for the program participants.  It was quite funny, really, because she said she couldn't give me my t-score because of privacy concerns, and we were both laughing because after all, it's my t-score!  She said she's get back to me and several hours later rang to tell me my t-score was - 2.0 which is osteopenia.  It's interesting, because I had gone around for several weeks at this time in distress bcause of the osteoporosis diagnosis, and all the rest of that day I kept feeling quite literally lighter, and lighter, as though a terrible weight was lifting from me.  I have to say my whole outlook concerning my health and how I could manage it changed for the better at that moment.  

I couldn't understand why they wouldn't tell me my t-score at first.  I'm in a high risk category because I take prednisone for PMR, and I had a broken bone two years ago, although I question the description of "fragility" fracture.  Now there are two things I can't do anything about.  I can't not have had a broken leg two years ago.  I can't not be taking prednisone.  But I can do something to strengthen my bones.  And I'm am mystified as to why they would not, without my insistence, tell me that third part of the puzzle.  I mean, if I have risks for heart disease or diabetes they are unlikely to keep one of the risk factors hidden from me, particularly one I can actually do something about!

Shocked that you got the run around about your scores and your doctor pushing Meds with osteopenia! 

You have a right to your results and full information and it is hard to credit that would happen in this day and age anywhere in the world!

It is really irritating.  I think there is a six month wait for the program, which just indicates lack of resources.  But I don't understand about the difficulty of having access to the whole report.

Anhaga, under what circumstances did you break a bone two years ago? If there was a traumatic impact that caused it, e.g., a car accident or a slip-and-fall on ice, then fragility fracture may not apply. (And therefore it wouldn't be an osteoporotic fracture.) I broke my wrist last winter in a slip-and-fall on black ice and no less than two doctors tried to tell me it was a fragility fracture. However, the endocrinologist, who is a tremendous fan of the osteoporosis medications, disagreed; he considered it a traumatic fracture. The point being that I think even some doctors don't understand the difference between fragility (osteoporotic) fractures and traumatic fractures, the latter being fractures that ANYONE, whether they had osteoporosis or not, could have sustained under similar circumstances. And if they fail to appreciate the difference and use the incident as a basis for deciding that someone needs a medication, this may mean that medication is given unnecessarily.

Yes, for sure. Kids falling out of trees or off bikes onto bitumen bears this out.

They don't sell those injuries as being anything to do with osteoporosis.

I have fallen down a very long staircase on a cruise. I fell so fast my husband could not catch me. Nothing was broken but I sustained severe injuries and needed shoulder surgery. All four tendons were ripped off the bone. Nobody mentioned osteoporosis or how amazing that nothing was broken!

It really sounds as though you are a victim of a dictatorship that has "Knowledge is power" as its creed. I really hate these jumped up little unmentionables who try to keep you from the truth & vice-versa. These are data regarding you and no-one has the right to prevent you from accessing them. To have exaggerated the results really stinks and can be incredibly frightening (been there, done that with a threat of a cardiac artery triple bypass which was a load of rubbish and was sorted out with natural medications). Terrifying at the time though so I can understand why you were really upset. And now they're adding insult to injury.  I'm afraid that the actions of the medical profession leave much to be desired and they are also one of my trigger points so will now go and cool off and start thinking logically again.  Hope that you get some acceptable answers.

I do not blame any individuals.  Every person I've talked to directly has been very helpful.  But there seems to be some sort of inappropriate red tape tying things up.  Once I get to this promised workshop I intend to find out why my gp is so sure she can't access the full reports.  There seems to be a breakdown in communication between hospital and doctor's office and the patient is stuck not knowing.

Hi Allison with two Ls.  I was walking through a parking lot and down a semi-cleared pathway (skirting a caution tape that said do not enter so I've no one to blame but myself) but upon realizing it really was too icy to continue I turned to go back, putting my foot into what I thought would be a "giving" bank of ploughed snow.  It turned out to be hard ice, said foot slipped (all my weight was on this leg, because I was stepping into what I thought was snow) and the leg twisted sideways.  I heard a snap, thought "that didn't sound good" but assumed it was a muscle or something.  But when I went to put weight on that leg again the pain was excruciating and I did, at that point, and only then, fall onto the ground.  Usual scenario, deserted parking lot suddenly had two or three people in it ready to assist one of whom called ambulance.  At first thought leg not broken and told I'd be fine to go on planned holiday in a couple of weeks.  Turned out upon closer inspection of my x-ray by orthopedic specialist next day that I had sustained a "tibial plateau" fracture.  Single most common fracture in Canada, thanks to our climate I suppose.  No displacement, rapid and uneventful healing, but also no holiday.  Returned to work at earliest possible opportunity once fully mobile again and promptly developed PMR.

Regarding your fracture experience, It's probably wise for everyone except ice-skaters to avoid ice except when you have no choice. Glad that winter is over and we probably won't have much in the way of ice & snow until late in the year. You really were unfortunate to fracture your leg like that but it really does sound like the sort of break that could happen to anyone even with high density, tough bones like I used to have but now am not so sure and I certainly don't want to put them to the test.  I have around eight months to go before there's any point in trying to get a new scan and this gives me plenty of time to 'bone-up' (excuse the pun) on alternative methods of beating the Openia and the OP.

I don't mind if you ignore the next query, but what is PMR?

Thanks for chatting, it's nice to know there are persons who still believe that communication is a great help at passing information and opinions. I still learn loads of new things every day, just hope that the memory holds  out!

Polymyalgia Rheumatica.  I am in this discussion group because the treatment for PMR is steroids which ups my OP fracture risk to "high".  It was mentioned in passing while being seen to at the hospital that I was lucky I hadn't torn tendons etc, as the broken bone would heal more easily.

I think you are correct not to take oral bisfosfonates Kathleen when you have swallowing and choking issues, despite your t-score.  Not sure if you  are making a joke/ pun when you say your gut says no.

Hi. I think you might be interested in looking at the studies of Douglas C Bauer MD Professor of Medicine and Epidemiological Biostatistics. He has done extensive studies in OP and is a proper Doctor. 

Professor Bauer is a practicing MD as well as doing teaching and research.

Vast majority of his research over 30 years has been on osteoporosis.

 

 

I just had a bad feeling. Pun was unintended!

I may change my mind in the future but not feeling trusting so far. 

I understand your feelings. If I was in your position, I would not consider oral meds for OP either. We all have our different reasons for taking the action we take. Perhaps if I had not suffered 2 spinal fractures already, having done everything to prevent OP, I would feel differently. Having a brain tumour on my balance nerve, diagnosed a few months before my OP diagnosis also influenced my decision. But, as time goes on, we must keep our options open and reasses our inital descisions. What is right for us now, might well be found to be the wrong decision in the future. But, I do respect everyone, to make their own decisions.

Thanks Anhaga, for the information.  I did my usual look-it-up routine after receiving your post and find that it affects the "Girdle" regions and can cause a lot of pain and weakness in those areas.  I had a recent cortico injection for just such a problem in my right shoulder, but didn't know the name of it. Also hadn't realised the connection to OP.  It seems to have been a bad move all round. The injection eased things for around three days and then the aches & pains returned even worse than before the injections. I'm still working on this by incorporating gentle shoulder exercise and being careful not to overdo things which is probably what I did after the injection took effect. That's something else that I've learnt! (the hard way)

PMR is always bilateral, so if only one shoulder was involved it's almost certainly not pmr.  Also I doubt whether a shot of steroid will affect your bones.  The problem with pmr is the chronic nature of the disease and needing to be on prednisone for a long time.  I've been taking it for going on nine months now, although some people take prednisone for many years and do not suffer bone thinning.  A very idiosyncratic ailment!

Hi Alison, thanks for the information.  I've been and had a quick look at some of his work but there's loads of it and I thought about buying a book on the subject. Then I saw the price  - £222; rather more than I'm currently prepared to fork out so it will need some time sat in front of my machine reading, before I'll be able to get an insight into his work.  If you have any links to downloadable papers can I be cheeky and ask you to send me a private mail with them in.  Thanks.

Can you get it on loan from a library?

Interesting as always but I'm afraid that most of the problems discussed on these pages are relatively new to me so that I don't have any real information until I've had time to read up. This is very much the situation at my doctors.

I'm good at jumping in with both feet and I usually learn loads on the way, it's just unfortunate that it's too late to be useful by the time that I've digested things.

. You have my good wishes and thanks for replying.

Well, I know what you mean about learning things too late.  There's an expression I like to use although I don't remember where I first heard it:  "Experience is what you have when you no longer need it".

I tried to send you something, but it did not go. The book will be expensive because it is for academic use and not for the general public. His reacherch covers trials and double blind trials over a 30 year study into Osteoperosis.

Sorry, but I dont know how to send a private link.  Try looking on a very well known video site. Osteoperosis update on diagnosis and treatment. It is an hour and a half but well worth watching as he covers many of our questions

Found the presentation, will schedule 90 minutes for tomorrow morning.  Thanks a heap.

It may help. It may not. But I feel we need to keep an open mind and gather as much info as we can. He is a proper Doctor and a professor and having devoted 30 years to the study of OP, he certainly is worth listning to.

For future refernce, if you click on the little envelope under someone's name it will take you to a page where you can choose to send a message.

 

I totally agree. It's very difficult to present a credible case if your mind is already closed and you haven't gathered all the information available.

I concocted a link for the presentation and have sent it to you as a test in a private message.  It would be nice to know if this system works properly.

Thanks. Simple when you know how

yes. It worked

Tried it a few minutes ago, hoping that i successfully sent a link to Alison.

Hi Alison,

I managed to view and listen to the uTube Osteoporosis presentation and was quite impressed withe quantity of data that had been collated and arranged to give a coherent answer. If I read it correctly, it seemed that the end product was a recommendation that if you have a high T-score or a previous fracture, you should take AA for five years and then lay off it for five years.  I'm not entirely convinced and now one of the books that I ordered has arrived - The Whole Body Approach To Osteoporosis.  More reading, hopefully interesting. Not until after I've cut the grass!

It has been a pleasure hearing your views Aristotle and I wish you well for the future. However, I will not be on this forum again, as tomorrow, I have to deal with my other  devastating medical problem and despite my OP being bad, my brain tumour is taking priority, for now. I will take this opportunity to wish everyone good health, strong bones and less pain in the coming years. Good luck to all, whichever path you choose to follow. Best wishes Alison

Alison, I hope everything goes well with your challenge. May it be cured and you can enjoy your life.

Thank you for your input. I know we have not always agreed but that is okay as it shows different perspectives.

I wish you well in the future and hope you receive all the support you need.

Wishing you all the best, Alison.

The other Allison

Alison, I wish you all you wish for yourself. Please don't let this be your last post. I (and everyone else) would love  to know how you're getting on. In the meantime, I'll miss your wise and gentle voice.

Love light and peace,   Thelma.  x

Oh dear, Alison.  What a journey this life is for you.  Hugs.💐

Hi Alison, I too have enjoyed chatting to you and getting different perpectives on our mutual problems.  I sincerely hope that everything goes well for you and that we find you back on this forum in the not too distant future.

You'll be missed.