Newly diagnosed with osteoporosis

Thankyou June much appreciated I have a score of Z-4 having blood test next week to find the cause, but won't take the AA tablet yet will try calcium and vitamin D supplements for the time being being,now going to look up the Mayo clinic you mentioned, thankyou again

I am reading magnesium is really effective too, Clive! I am making home made jelly with gelatin too. 

I'm taking a Magnesium supplement too.   I'm not advocating people pop supplements without research though.  Supplements also have their risk, but I think you can work out if you're getting enough calcium and Vit D3 and K2 and magnesium in your diet, and then, although I didn't because my GP's are useless and prefer just to shove a prescription for any old thing at you, you're best to discuss it all with your GP and have it based on tests for calcium levels, Vit D levels etc.  My husband did speak to a very nice man in the NHS somewhere who said my doctor definitely should have done calcium and Vit D tests before even thinking about shoving prescriptions at me but even when I asked for one after they said they didn't need to.  But I am going to, at his recommendation, at my next review, going to push for those.

Sorry you do not have a good GP. I love mine. She is the whole package: caring, competent and thorough! 

I will talk to her this week about the course I am taking.

She did send me home months ago to research the medications and think about what I wanted to do. So she is aware you do not take the meds without careful thought and full information.

She did prescribe fosamax after prolia was advised against by my oral surgeon.

It will be interesting to see what she says this time.

Kathleen a good GP is worth their weight in gold.  I do wonder if it's a smaller practice, where you get to see the same person each time, so get some sort of relationship with them, you're better off.  Where I go it's almost impossible to get continuity and the 'short straw' is the one where appointments are available LOL!

It is a bigger practice and she takes no new patients because she is so popular and is always booked. Short notice can be an issue but usually I can book in ahead and see her.

This next visit is going to be interesting when I tell her I have decided not to take the fosamax. I will let you know her reaction.

Ah that sounds good.  With ours you can't book anything unless it's within a specific period and if they're fully booked within that period, as they often are, then you just have to wait and try again sometime.  There is a drop in centre but it wasn't advertised at all and was the biggest kept secret around so they reduced hours because no-one used it LOL!

I have now read the whole article and it supports my decision to not take the drugs. Preventing falls seems more important as we age! 

The push to take the drugs has obviously come from a false premise and insufficient studies.

For some people they do more harm than good.

Eating well and exercising are more important than taking,the drugs.

Maybe what should happen now is educate people about looking after their bones especially as they age.

Our homes should be checked for safety and we should put in place a lifestyle in our retirement that focuses on diet and exercise.

It gives me confidence to reevaluate what I am doing and how I am living.

Thanks for the article, Allison!

Hi Allison. Contrary to what seems to be the opinion of yourself and a few others, I am not pro drugs. Despite being in the medical profession, I never took anything other than the contraceptive pill, for a few years, and the occasional travel sickness pill. If I was borderline OP, I would certainly have taken supplements and upped the exercise, but my t score was found to be 3.5 after 2 fractured vertebrae. I still felt I had a choice to take AA or not. Either way, I am at risk, but after talking to my Dr, who is fantastically knowledgeable about OP, I made the decision I felt was best for me. It is my body after all. I would never condem anyone who chose not to take bisphosohonates, but would urge everyone to read everything they can and remember, there is a lot of misinformation out there. There is always a healthy debate over drugs and medicines, even among the experts. We have 2people writing on this site who have a better t score thanks to their medication. I hope, when I am re scaned, I too will have improved. Good luck to everyone

Alison, I'd never condemn (as you put it) people for taking drugs in the hope of reversing a medical condition, let alone one as troubling as osteoporosis. What I do find fault with are Big Pharma, for aggressively promoting meds they know are dangerous, and doctors, for uncritically buying into whatever Big Pharma is selling. Also, not to be nitpicky, but I don't know that it's accurate to attribute a higher T score to someone's having taken medication, as one or more other factors could have contributed to the improvement. Without controlled, data-supported retrospective studies it's not possible to draw anything other than an association between having taken a med and a better score.

 

There is one aspect that I don't understand about Alendronic Acid - it is more successful for spinal oseoporosis than hip osteoporosis?  If fractures of the femur are a side effect, then if someone has osteoporosis in the femur, is that a contraindication for Alendronic Acid?  I don't understand how it can be used for that, in that case.

I think that femoral fracture due to AA and other bisphosphonates would be considered a paradoxical effect, meaning it causes the very condition the med was intended to treat. Here in the U.S., the Food and Drug Administration (FDA), which is generally behind the eight ball when it comes to protecting consumers, has recently issued a black-box warning and recommended that doctors at least consider discontinuing any bisphosphonate in a patient who has been taking it for three to five years (a so-called drug holiday). However, the true duration of how long a med can be taken before it might lead to atypical femoral fracture or to osteonecrosis of the jaw (jaw death) has yet to be determined, so FDA is merely guessing. As long as atypical femoral fracture and ONJ continue to be considered "rare," guidelines for bisphosphonate use will remain murky. There is every indication that the catastrophic complications are NOT rare (and they aren't limited to fracture or ONJ; esophageal erosion and atrial fibrillation can be added to the list) and that they are being dismissed as such simply because data collection has not yet caught up with the massive wave of bisphosphonate prescriptions that are being generated due to the ever-growing population (i.e., potential consumer market) that is being told they have osteoporosis and that they *need* drug treatment.

 

This is the statins thing all over again, isn't it.  Yes, it will help some who actually need it and the risks without it are greater than the risks of taking it, but dispensing willy nilly is not the best way to go about it.

Exactly. I couldn't have summed it up better myself.

 

Agreed Chris  ("it will help some who actually need it").   Now - can someone please define  ' need ' for me please??   Who should take OP meds. then ?  (balancing risk and benefit).  There are many readers of these posts who may be in a complete quandry . . .   J

I think my GP did the right thing by sending me away to research instead of just prescribing there and then. 

It gave me time to see a couple of specialists and read online and consider my choices. 

We need shelter and food and water but we should be able to choose our drugs by making an informed choice.

I may decide to take one of the drugs in the future if I am unable to improve my bone health and my bone density deteriorates. 

My gut feeling tells me at present to wait.

As long as people are given the opportunity to decide for themselves which course of action they wish to follow each individual choice is right for that person.

 

Well I can only say who I feel DOESN'T need it and when I looked at the graph my husband managed to get from our GP's reception and I saw I was UNDER the line for needing treatment, I'd guess I'd come into the category of not needing it but I guess this is something for each person to make up their minds on.  The sad part is that many who are given this, like statins, won't benefit but just because the GP gave it to them think there is no risk.

I'm full of admiration for your GP Kathleen!

Exactly. Its your body

I would be hesitant to take it, if I was in your position too Chris

Then we agree. People should make their own decision based on their score, their past experience, (in my case the pain of 2 spinal fractures ) and as much information as they can gather. Everyone is an individual and no 2 situations are identical. I, like Kathleen have a great GP so I am very lucky I dont have the frustration of some people whoes Drs just hand out any meds. Mine listnes, advises, and encourages me to make my decisions. Unfortunately, not everyone  is so lucky

I abandoned it after 6 weeks because of side effects (dizziness) Alison, but a week or so after that we managed to get hold of my report from the hospital (it wasn't volunteered!) and I realised I didn't need it anyway!

I was actually thinking the whole lot were bad, but am now wondering if it's just the lot where I live:-)

I would not take anything I didnt need either Chris. I think, for now, you made the correct decision. Some GPs are still doing a fantastic job, so dont despair. You seem a nice person and I hope you can keep your t score at a level where you never need to take anything other than calcium, magnesium, Vit D3 and Vit K2.

Thanks Alison.  I shall certainly do my best:-)  I hope it goes well with you too.

Thankyou allison for you reply for the time being I will be agreeing with you on the AA drug and will look at the link you mentioned, I was wondering if you have an opinion on a product I have picked up called Osteocare it seems to have all the ingredients I'm requiring to help with my bones I've done a little research and can't seem to find any negative comments, I've had a Z-4 score from the local doctor which I'm led to believe means they are not sure the reason for my OP at my age until I've had blood test done so why he told me to take the AA drug without full information on the cause is another reason to hold off taking it.

Thanks again

Hi,  A few thoughts:  

It genuinely worries me that some people who may really need  medication for osteoporosis may be put off by the healthy skepticism of others. I say this without doubting for one minute the sincereity and concern for themselves and others of any contributers who question their own treatment advice. 

I take it as a fundamental truth that doctors want the best for their patients and that we as patients are questioning and intelligent. However, there is not an equivalence of competence between your consultant and yourself. Your doctor has studied for many years and practiced for decades more - often involved in reserch studies and always getting feedback from his own patients and colleagues. Contrast this with any of ourselves who carefully read up on our OP, it's treatment and it's side-effects. Valid stuff. But it has a side-effect of it's own: it significantly increases our stress levels and makes us anxious and fearful of perhaps making the  'wrong choice ' for ourselves - as though we are somehow responsible for treating ourselves.

Both Allison and Alison have made some brilliant points about OP medication. 

Allison ( two Ls) is essentially saying;

1) AA meds. are often prescribed unnecessarily.

2) These meds. can have severe side-effects that are more common than     

 we are lead to believe.

3) These meds. are questionable in their effectiveness. 

Some or all of these assertions MAY be true. I surely don't know. 

My only recourse as a patient is to rely on the accumulated knowledge, research and meta-analyses of independent major non drug company-funded centres who have world-wide respect and prestige eg. Mayo Clinic and others - and then to discuss their recommendationa with my own consultant. 

Remember if you are skeptical of everything, you are left with nothing, except your own natural predjudice and gut feelings - and are a lone person amid an, often contradictory, morass of research findings.

J 

 

I agree totally Juno. Life is full of risks and each one of us has to weigh up the facts. A good Dr/consultant has studied our condition and knows more than we do. Perhaps because we have been in the medical profession, we see things a little differently. I too would urge people to look at the Mayo clinic. Many years of studies have gone into this site and it is very informative. I would never advise people to take medication they dont need but it worries me too, that the internet is full of what people believe because they have read something that might have a grain of truth. A good Doctor expects an intellegent patient to want to be informed about the drugs they are prescribed and this includes the benefits and the risks. If we were all 30 years younger, treatments might well be very different, but we are where we are and must make our choices from the research and information available today. 

I think she feels things intensely as she actually relates to her patients. She has two small children so has a lot on her plate. 

My Crohns specialist is the same. He apologised for keeping me waiting one day but said his previous patient was very anxious and he needed to spend time with her to calm her.

My oral surgeon showed empathy and I noticed the plastic surgeon who did my facial surgery was kind and listened as well.

There is no need for them to be callous. The surgeon who operated on my shoulder had a big ego and possessed limited bedside manner so I dumped him four months after surgery. Negativity is never helpful.

I guess I want the whole package in those who care for me.

I really hope you find a GP who cares for you as she/he should!

Settle for nothing less!

Hi Juno, thanks for your generous words about my views. However, an additional point that I've made repeatedly (possibly ad nauseum ) is that the longevity of these meds in one's system (their half life), up to ten years, is more troubling than any of their side effects per se. Thus, a person who sustains ONJ, e.g., could be stuck with this condition indefinitely. (The literature usually describes it as untreatable.)

That said, in no way do I want to discourage anyone from taking a med if he/she feels it's needed or is willing to take the risk. I'm not anti-medication overall yet have found myself growing more leery of meds as ones that I'd taken unquestioningly for years -- sometimes decades -- relying on what you refer to as the greater competence of my doctors -- has, I believe, led to trouble. For instance, proton-pump inhibitors (PPIs), now sold over the counter in the U.S. (and probably U.K. as well?), which I took for at least 15 years, on doctors' advice, to treat reflux (GERD) symptoms, are now being implicated as contributing to osteoporosis, and I suspect that is why I have the condition to begin with. (I began expressing concern about PPIs early on, due to certain side effects [osteoporosis, unfortunately, wasn't yet on the radar screen], to which my doctors responded with amusement; if only I had placed less stock in their "competence.") Doctors in the 1950s used to prescribe thalidomide to pregnant women (for morning sickness, I believe), until it turned out that this drug caused birth defects. So, doctors' competence and authoritative-sounding websites like that of the Mayo Clinic are only as reliable as the next wave of authoritative data, which takes awhile to accumulate and show clear trends. My personal belief is that the writing is on the wall for the osteoporosis meds and that their use will drop drastically within the next few years. But that's my personal belief only.

Juno, I think you're absolutely right that there isn't an equivalency of competence between doctors and patients when considering areas of medicine such as surgery and radiology. Endocrinologists, who are the main ones dealing with osteoporosis, undoubtedly know a lot about bone mineralization and various biochemical parameters. But I don't think they have any special powers when it comes to decreeing the prevalence of side effects as "rare" vs. "not uncommon"; they are subject to the same evolving body of data as laypeople. And the evidence that a rather long list of catastrophic side effects is less uncommon with bisphosphonates than previously thought appears to be mounting.

 

Juno, you are right - there are some who may need this and be better for it, there's no doubt about that.  It's very difficult - we need to be able to read all the facts and then make up our own minds, based on those facts and our age etc.  (and a full comprehensive hospital report helps here) and do what we feel is best for us.  It's a fine line between being unbiased and open and being influenced by possible side effects and we do all have to make up our own minds what's the best way forward.  I can absolutely see where you're coming from.  I think we are fortunate to be able to research meds and them make a decision for ourselves.  I think we HAVE to be sceptical though.  Well, personally I do, having had terrible consequences (that I never recovered from) from taking statins when no-one had a clue what my problems of poor muscle tone etc. were caused by, then the endometrial cancer after being prescribed 3 x the recommended dose of estrogen and so on.  I don't feel that questioning what a GP hands out is wrong - I think these days it's necessary.  It is easy to be overwhelmed with research studies and so on but I think in the end you get a gut feeling what is right for you and make your decision based on that.  Of course, it may or may not be the best decision and I suspect most of us are in a turmoil at one point or another, but then the prescription given by the GP may or may not have been the right decision either!  Oh I wish it were all black and white!

My GP did not know about the blood test to check for the safety of teeth extractions that I was told by my oral surgeon. She thanked me for that information and was going to forward it along to her peers.

I think they are learning too. The oral surgeon has worked on hundreds of people with ONJ  in the last half dozen years or so and we are a small place more than an hour from Melbourne.

Maybe the records are lagging behind the actual happenings and much information and knowledge is old.

Out of 70 patient reports on one site only a few were positive which I guess is partly due to the reality that when things go wrong people turn to the Internet.

I appreciate what you write on here as much as I appreciate Allison's comments because with the opposing views it is a valuable way to go to and fro the arguments for and against the medications.

I am split to a certain degree whilst favouring natural management at this time.

This is what worries me Kathleen - and even when I saw the GP and handed her a print of the online recommendations to prescribers for the estrogen where it had all over it that unopposed estrogen could cause endometrial cancer, she still insisted that she'd used that dose for many years and it was fine!  Some years back someone said to me they have to list all the side effects on meds to cover themselves, but I realise these things are listed because they are possibilities.  I honestly feel that any doctor should be duty bound to point out the possible serious side effects of any medication they're prescribing.  Or maybe a pharmacist could be handed this responsibility but someone needs to.  Yes, I like opposing views.  I'm always happy to hear the view that someone has that is opposite to mine - it helps make for balanced decisions.  What worries me about AA is that it seems a bit airy fairy just how much it might help to prevent bone breaks, even if it builds up bone density - the possibility of bones becoming more brittle, hence the risk of femur breaks from using it, balanced with the jaw problems, this all has to be looked at very carefully if prescribed, and I think a full discussion with a GP!  It's not something that should just be handed out unnecessarily or with no discussion.

Re. your last sentence. I don't know. Maybe many shades of grey makes life more interesting. . .  Kind thoughts, J

Well good luck with that Kathleen, and let us know how it's going. It's also very reassuring that you have a good GP with whom you hae ongoing contact.  Take great care to avoid falls.  Kind regards, J

Hi Allison, there's a story told here about a tourist who, finding himself totally lost in the wild countryside, stopped a local farmer for directions. The farmer thought for a long second (!) and then, with a troubled face, said " firstly, I wouldn't start from here at all ".  . . . 

 I wouldn't quibble with anything you said above, except I may have a more positive outlook than yourself. Alison (one 'L'), made a great point earlier when she said essentially, that 30 years from now, (when none of us may be around),  OP treatments may be very different. However, we only have research information available today to choose from - coupled, I would add, with the urgency of our present physical condition. Risk either way, sure maybe it makes life less boring !!  J

Well, if hundreds of people in the area of Melborne suffer from ONJ, with all that sun, what hope is there for us poor souls, who live in the northern hemisphere with a July average of 12degrees. Now another delema. Off to the sun tomorrow. Do I ditch the factor 50 I have used all my adult life, to top up my vitamine D and risk melanoma? Eek one risk after another!!!

Hi Chris. How did you get on with your tooth problem? Are you still taking antibiotics? Sorry if you have already said and I missed it.

Me?  I'd go for the tan in moderation of course. Unless you're a red head, in which case I'd slap on the factor 100  as you won't get a tan anyway - and why fry??   Assuming you're off on holiday, have a great one AND don't think ONCE about bisphosphonates !!  T

Not a red hair in sight. I have never been a risk taker. Always played it safe. But, your right, who wants a boring life. I have a plane to catch. Best wishes to all.

Hi Alison.  It's so sweet of  you to ask.  STILL have the problem but it is hugely improved.  My dentist told me to go to the GP to get the cephradine, so booked the appointment in with the head nurse who was then going to get it signed by the GP.  He refused to sign it, saying it was dental and not part of their budget, so phoned the dentist and he put the prescription in the post.  It is certainly heading in the right direction.  I bought some of that stuff they advertise on tv for bleeding gums - corsodyl and hope that's helping too.  So yes, still taking the tablets LOL!  But optimistic.

Re your tan question that I've just seen - yes, I'd go for the tan.  If you do it gently and don't get burnt you should be fine.  I even left off my face cream this summer for a few days when I was ending up with brown arms and legs and top of chest and a white face LOL!  But a tan makes you feel so good too!  And it's relaxing in the sunshine as well, so have a brilliant time!

You sure have a fun time where you are, with the medical profession.  but its sounding much improved. I take great care with my skin always. Seen a lot of burns in my time, but have never risked it. As for me going out without make up....... Never!!! Might meet someone I was at school with. Need to go. Plane awaits. Bye for now

Have a brilliant time Alison:-))))

I saw my lovely GP today and I said to her she might be angry with me because I had decided not to take the fosamax at the moment. I told her what I was doing instead. She listened and appreciated what I had to say.

 She then said there was another way to check my risk factor and she went to a site where she put in all my details and results. My risk factor is actually low according to the site. One was less that 4% for fracture.

 Another part was 81% okay.

 She did say none of her patients are reporting any bad side effects.

 I will pay for a bone density check next year because I cannot get another free one for a few years.

 If I have not managed to improve my bones I will rethink the medications offered.

 She has patients on prolia so was surprised at the possibility this may be banned in America.

 She was unaware that many people are putting up issues with the medication on line.

 One of my results from the bone density scan is actually -4 .3 that is for L4 on my back.

   So, some interesting points there.

 Discussion, anyone?

 

Kathleen, thank you so much for this information!  It does rather shed a different light on the risks of fractures, doesn't it!  When you take this into account, and add in the risk of fractures WITH something like Alendronic Acid when it's being given to people who aren't at much of a risk anyway, it makes you wonder just how successful it is?  Are they claiming success when people aren't actually at much risk anyway?  This is all a question and not a statement.

Kathleen, I'm not aware of a potential ban on Prolia in the U.S., so am wondering where you read this?

It was an individual who stated that on another site. It may not be correct. She seemed convinced though! A few people were saying they had bad side effects from Prolia. Out of 70 comments very few were positive for fosamax or prolia or other meds. As I said before it might be because people without an issue just get on with life.

Actually there are lawyers advertising so it may be more than just one person stating this. I have read so much and gone to so many sites I am not sure exactly how many people have stated that prolia may be taken off the market. I type in osteoporosis and combinations of forums and complaints etc. or fosamax and people's experiences with taking the drug. There are numerous places to read what people are writing. 

There are a number of class-action lawsuits against the manufacturers of bisphosphonates, including the makers of Prolia. The side effects of all of the meds are so similar that any eventual removal from the market would likely affect the entire class of drugs.

 

They have been around for so long though if that was going to happen it would have happened already.

  I was surprised that my GP has no patients reporting side effects.