Are we being lied to about side effects of AA? Is there a better course of action? Or is safer to do

Both are bisphosphonates?

Both what?

Most of the OP meds are bisphosphonates under different names.  Want to really be scared - look up fossy jaw!

Yep!

Hi Allison, 

I am new to this board, and so if I'm posting this in an incorrect place, please help!  LOL....  I am curious, because my mindset about meds has been very similar to yours.....  what have you done "instead"??? 

Hello Jill,

I couldn't find the reply from Allison so I thought that I might as put my pennyworth in anyway.

I was diagnose with Osterporosis in October 2015 and without any further discussion or information my Dr put me onto Alendronic Acid immediately. Whilst trying to get more information I stumbled across this forum and have found many answers to all the questions I had. After lots of reading and buying a couple of good books, I have come off the Alendronic Acid and am making my own way to good healthy bones with help from the books, from friendly forum members and common sense. The alendronic acid and most of the bisphosphonates are not what most people believe they are. There are myriads of posts about the negative side. The scientific side agrees that they cause brittle bones if taken long term.

I'm quite happy to attempt to answer any queries you may have. Feel free to reply or mail me.

Regards

Aristotle.

Thank you Aristotle13 for the reply!!! I was diagnosed in 1992! Have been on quite the journey w this OP. Have been on several drugs but have refused most all for the last 15 or so years. Besides Forteo which I did and now my bones are "sinking" again. Just curious what natural stuff others are doing that is helping.

Hello Jill

I know that some sufferers who are fed up of feeling ill have gone the 'natural' route which seems to start with making sure that your zinc supply is adequate - supplement or food. Zinc is the building block that enables the bones to manufacture the collagen matrix upon which the calcium will be deposited. Additionally you need adequate supplies of calcium, vitamins D3 and K2 as a minimum. The D3 is often included in the chewable calcium tablets but the amount is barely enough to do the job properly. K2 is contained in some leafy vegetables but is probably best taken as a supplement. On top of all that you have to try and increase the alkalinity of your diet by eliminating things like caffiene, salt and others two numerous to type in. If you would details of a book which gives the whole picture but which the moderators have asked me not to advertise on the forum, please message me using the little envelope below my avatar icon. There are lots of good foods which help to combat OP, avocados are excellent as is tinned salmon and sardines with the bones still in (soft and chewable). On top of all that there is the exercising. Particular exercises are really good. This includes two legged jumping onto and off a step, lots of times. Walking is very good and even better if you have access to weights, starting light and gradually increasing until you reach your maximum. The walking and weights encourage the osteoblasts and osteoclasts to do their stuff (simplified, they dissolve and replace old bone tissue). Using the correct foods is very important since this determines whether your body will have an acid or alkaline profile. There are a lot of videos on the internet and some are very good at describing how the system works. There are also many good posts but they take a bit of finding and reading.

It's often better if you can come up with specific questions because it's easier to give an answer to one of those questions rather than a generalisation. For me, acid tablets are not the correct way and don't even work properly.

Hope that this has been of some use

Aristotle

This is definitely definitely good info! Some of that I have in place but not all. Yes, I would love info on the book. I will message you later to get the info! Thank you!

I'll private message you.

I think under reporting needs to be factored in. Also, even a minor side effect impacts on a person's life. An example of this would be the lady losing her sense of taste.

There are people on other threads venting about how fosamax has caused them issues.

I doubt my oral surgeon would agree that the ONJ is in the very rare category. Maybe even the medical people are not reporting the problems with fosamax and Prolia. He told me not to take the latter because of the lack of control for six months. 

He was not thrilled about any of them actually. He volunteers overseas as well as operating here in Australia.

I guess what I am saying is that I do not believe the quoted figures because of under reporting and lack of vigorous seeking the truth about the side effects. 

Many have minor side effects that impact their lives.

Hi Kathleen,  As we know ALL drugs have side-effects from mild and temporary to very serious and life-threatening. But I don't know HOW what you describe as 'under-reporting'  could be factored in to an evaluation of ANY drug's side-effects. How could it? Guessing is no good.

Next, " people on other threads are venting about how Fosamax has caused them issues". Of course they have and I'm sure all are 100% accurate. But isn't that what these threads are for -  by their very nature they  attract people who HAVE problems to report them and check out if others have similiar ones?  I am aware of another forum (NOF) which has a thread called "Positive Effects from OP Drugs" . . . Also valid.

Next, " I doubt if my oral surgeon would agree that ONJ is rare" .  I don't know. Wouldn't he be the very person who treats such patients? So, many of them come to him for treatment but does that mean there's huge numbers? If, for example,  there are 100,000 patients taking Fosamax in Australia and he treats 200 per year that still makes it a very rare side-effect.

As I said above, the most recent meta analyses of these meds. calls for a much more cautious approach to their prescribing - gone are the days when they are to be  handed out as the cheap and cheerful solution to OP. Less people should be taking them for a shorter (monitored) period with proper dental precautions taken beforehand. . . . I intend to take Actonel for apx. 3 years after I finish my Forteo course and am not at all fearful. Next, " many have minor side-effects that impact their lives". Perfectly true. But does  not the pain of a  fracture and an increased risk of a second one, have an even bigger impact on one's life?

 

However, If I were really freaked- out about taking AA and had already had some fractures I would decline the offer from my doc.to take it  and would instead explore taking Forteo followed by another bone med.,- not a BP - perhaps Evista or something similiar. Forteo would help with pain (often reported), and would help prevent further fractures and would build new bone. . . 

Finally, it would be fantastic to know that medications of any kind were not needed for OP and that a rigorous regime of exercise and careful diet and supplements woud do the job, but, so far for severe OP,  no one has concinced me of that . . 

Kind thoughts Kathleen and I so admire your energy and positivity.  J

 

Drugs may have side effects and I take other pills but I have never felt like this before. My gut told me not to start. 

I don't believe there is a safe one yet. 

There should be more studies and carried out by independent bodies.

Every person taking these drugs could fill in information for a start as part of one of the studies so that the minor side effects could be recorded.

Have any countries banned fosamax?

Aren't there class actions in America already regarding fosamax?

My first concern is for my oesophageas as I already have trouble swallowing at times. My throat gets dry and I sip water day and night. Looking at the fosamax pill I said to myself a very loud "NO!" 

That may not be recorded and reported or among the so called facts but to me it is very real! 

Fosamax is too risky!

You're right Kathleen. If I were you ( with your oesophageal problems), I wouldn't take Fosamax or other oral BFs either.  . . but there are others that MAY suit . . . In the meantime, I was just thinking - did you ever consider wearing a hip protector?  I don't know what they look like, but you wear them under your clothes during the day and, it seems, they really work!  So, if you fall - no problem with the hips, and that's a huge relief!

(However I'll take it all back if it turns out that they look like you're wearing a form of armour!!!). My local OP Society really recommends them.  . . 

Juno.

I googled hip protectors, clicked on images and they look like girdles with strategically placed pads - likely invisible under most clothing!  A good idea to protect vulnerable body parts while one waits for treatment (either medicine or diet/exercise or both) to work.  Do you know if there is anything that helps stabilize the spine for those who are vulnerable to or already have fractures to vertebrae?

Hi Anhaga, that's a great question. I don't know if there is a 'spine equivalent' of the hip protector. You can certainly get back braces and they're sometimes recommended by physiotherapists but I seem to remember reading somewhere that prolonged use can affect muscle strength or cause muscle weakness of something . . . Worth checking out anyway.   J

Yes, I'd heard the back braces not a good idea as muscles would become weaker.  I've been doing back exercises for many years so not too worried for myself, but good to know when other people ask.  

There was a class action suit in Canada, which I think resulted in a payout by the manufacturer of fosamax of over six million dollars.  It took years to settle.

No, I would never consider that! My hips are not too bad anyway; it is the back that is my main issue. Two bulging discs could be the source of my side pain in the sacroiliac which is aside from the osteoporosis.

There are class actions in America if you google the key words you can see many headings. I found something about Merck that was very interesting and I told my husband. We are now both trying to remember what it was but I do know it was disturbing. It could have been that they were complicit in some way which made them not trustworthy. If we can recall or find this information unless it has been removed I will state it on here. 

Prolia was the other option and that is just as scary as the fosamax u fortunately.

I do know how to research as I have had scholarly training and experience throughout my educational studies. 

Hi Juno. If the serious -- make that catastrophic -- side-effects of the osteoporosis drugs are truly "very rare," how improbable is it that, in various online patient forums, one can find numerous accounts of people taking these drugs who sustained atypical femoral fracture or who had healing problems in connection with dentistry? The fact that these problems may have been more prevalent in cancer patients than in 'ordinary' osteoporosis patients may have more to do with the intravenous route of administration in the former compared with the oral route in the latter than with which populations of patients they are given to or even in what doses. As Reclast and Prolia become more widely used, and as they are both IV-administered drugs, chances are we'll see a surge in reports of what the medical establishment has so far got away with dismissing as "very rare."

As for the "limited period - 3 years or 5 years max." you cite as a likely safe-use timeframe: this is an arbitrary range. There is no evidence -- just conjecture -- as to what time-period constitutes safe use.

As for the drugs' supposed ability to "reduce the incidence of new fractures by 48%": how can this be measured in real life vs. just hypothesized or inferred on the basis of increases in BMD, seeing as bone density is not equivalent to bone strength? By what measure can fractures that did not occur be quantified?

As to the points in your conclusion: it's well and good to try and get one's dental work out of the way before starting a med with an indefinite half-life. However, in my experience, dental problems have a way of surfacing unexpectedly and of needing prompt treatment -- delays inadvisable! -- when that happens. As for insisting on a brand name vs. a generic: good luck with that. I've insisted on brand names for several meds, as reports of generics that are ineffectual at best and harmful at worst are now commonplace. This required jumping having to obtain letters of medical necessity from doctors and importuning the greedy U.S. insurance companies (though I know you do not live in America, so maybe it's different). And if the brand-name was eventually approved, it was vastly more expensive, verging on unaffordable for many.

Best regards,

Allison (aka Nemesis)

 

kathleen: more than 1,000 lawsuits against Fosamax have been filed in U.S. courts. As far as I know, they are individual cases, not class action. U.S. isn't exactly a bastion of justice, as Big Pharma -- in this instance, Merck, the manufacturer of Fosamax -- and the FDA have ties to one another. (Most regulatory agencies in the U.S. are compromised, to one degree or another, by their ties to special interests.)

 

Have come across discussion of hip protectors in at least one medical journal article that stated they are ineffective.

Well, even though "ALL drugs have side-effects from mild and temporary to very serious and life-threatening" it can't be said that ALL drugs have half-lives of up to ten years. I think the bisphosphonates are rather unique in that respect.

What does it matter that patient forums tend to attract people who ahve had bad experiences with the meds? Isn't it more important that many hundreds have had those experiences in the first place? On the other hand, I've also read many posts from patients attesting to how they believe that these drugs have helped them.

How you can say that ONJ in 200 of 100,000 taking the meds makes the side-effect "very rare" -- implying this also makes it inconsequential -- is beyond me. We are talking about a catastrophic side-effect that typically does not resolve with any treatment. The health of one's mouth is key to overall health.

As for your assertion that " many have minor side-effects that impact their lives". Perfectly true. But does  not the pain of a  fracture and an increased risk of a second one, have an even bigger impact on one's life?" Well, no; I don't think that esophageal damage, chronic kidney disease, serious eye infection, or atrial fibrillation are preferable to "pain of a fracture or increased risk of a second one." Though those side-effects obviously aren't minor in themselves, possibly they don't rise to the level of ONJ or to atypical femoral fracture that resists healing. I'm not sure what truly minor side-effects of these meds would be, other than transient discomfort or problems so negligible that they clear up as soon as the drug is stopped.

My question about Forteo -- so far unanswered -- is: given that it does seem to build new bone in many who take it, if patients are invariably told by their doctors that after two years on Forteo they must switch to Reclast or Prolia to "maintain any gains," what is the point of taking Forteo in the first place?

On one point I do agree with you: neither exercise nor supplements is likely to make much of a dent in osteoporosis. But this unfortunate state of affairs does not mean that the drugs have an acceptable risk-benefit profile, or even that they necessarily build stronger -- not just denser -- bone.

Yes I gathered that. There was something specific about Merck that I discovered a good while back and wish I had made a note of it. It was along those lines but details evade my memory.

I'm not interested in hip protectors myself - just responding to someone else who mentioned them and wondered what they moght look like. 

I think the problem may be that people often don't break a hip because they fell, but they fall because their hip broke.  So it behooves us to remain as strong as we can throughout ourlives.

Kathleen, You mentioned that, for yourself, " I do know how to research as I have had scholarly training and experience. " I think your overviews of research and publications have started many an interesting debate here. 

I absolutely never meant to imply anywhere that this was not the case. And I sincerely apologise if in any way I offended you. I think everyone here would agree that your contributions are educated, personal - and valued.

Kind regards,  J 

Hi Allison,  Re. the side-effects issue: I think the readers of this thread (if any!) have now had the Pros and Cons of Bisphosphonates argued thoroughly by now. And my energy is flagging fast!  We'll have to just agree to differ - You essentially feel that BFs have really serious side- effects which are significantly more common than reported and have  questionable efficacy.  I, on the other hand, am convinced  that serious side-effects from BFs are quite rare, they are one valuable treatment for OP, and are effective if used correctly.  Both of us have read extensively. 

I wonder if the differences between our approaches lie in our different backgrounds??  Predictably enough I come from a medical/paramedical one. My father, while working in the US (age 38) sustained a leg injury which seemed to be a precipitating factor in the devolepment of full-blown RA (genetic predisposition anyway). The only treatment at the time was Steroids and they were the miracle drug of the time (1950s). Their effect was amazing and he basically returned to normal. So the steroids' treated' the condition and kept him going for another 32 years until he died of kidney failure, caused by, guess what??  It was all there was as treatment at the time and they caused havoc with his body but, without them, he would have been in severe pain in a wheelchair and unable to work.  He was a thoughtful intelligent man (a scientist) and knew what he was doing but had no choice. He just couldn't have tried to carry on using painkillers.  Nowadays there are amazing drugs to treat RA which effectively prevent degeneration of the joints. They can also have really seious side-effects and have to be monitored carefully. . 

What I'm trying to get accross is that sometimes you just have to jump and decide. And niether decision is guaranteed to be the correct one because we can only decide in the present. I never asked him, but I guess that my father felt he made the correct decision - because he got >30 years of a relatively pain free life. But it was far from ideal . . . . 

BFs are far from ideal but they are the first line of treatment for OP - for certain patients. I have taken them briefly and at the end of my Forteo treatment I'll take them (or Evista) for 3 years. Then I'll hold on for a new emerging wonder-drug -  no doubt with the risk of THEIR  accompanying  serious side-effects  . . . . Nothing for nothing in this world, I'm afraid.

Finally, have a look at Wilie Online Library (no charge)

" Managing Osteoporosis in Patients on Long Term Bisphosphonate Treatment: Report on a Task Force of the American Society for Bone and Mineral Research". (13 authors).  Published Jan 2016. 

PS. Not a 'Nemesis'. Perhaps a 'Buddy' by now . . . !!     

 

Thanks Juno. Your contributions are important too because you present the opposing view and without which some of us would be listening to our own voices and not challenging those!

Most of us are probably dealing with other health issues as well which feed into our emotions and arguments.

I especially value the interaction between you and Allison and I have tried to bring in people from other sites just to read those.

Always food for thought.......

Let us all keep reading and arguing!

Hi Kathleen, 

You said " Most of us are probably dealing with other health issues . . ". It's certainly true for me anyway. I have PMR for which the only anti-inflammatory treatment is a steroid, Prednisone used  in reducing doses for apx. 2 years. Funnily enough, steroids also accelerate bone loss, which lead to a Dexa scan, which lead to the OP diagnosis, and the BFs -  and on we go!

Did I say 'funnily enough' - not funny at all . But definately could be worse.

Finally, thank you for the compliment but it's not appropriate really - Allison argues well, I'm just pig-headed!!   Kind regards,   J

I have diabetes which is under control, Crohns which is under control, diverticulitis, gallstones, an incurable skin disease, two herniated discs causing nerve issues, osteoporosis, and others that are controlled LOL.

It could be worse!

What has everyone else got on their list?

Hi Allison,

I am new to this board, so how it all works is new to me..... what are you doing for OP that you are "sold on"???  thanks!