Osteoporosis...t score -3.4.......what meds to take.

I would disagree that "BAD side-effects are very rare indeed." See, e.g., an article published by the American Dental Association, "Study Finds Higher Incidence of Osteonecrosis of the Jaw in Alendronate Users," in 2009, an article published by the American Hematological Society, "Bisphosphonate Complications Including Osteonecrosis of the Jaw," in 2006, and many others, including more recent reports. There seems to be a growing recognition, at least in the U.S., that the incidence of so-called jaw death may be underreported because the numbers of people being prescribed bisphosphonates has increased dramatically in the last decade. While your statement that no drug is without side effects is hard to dispute, you fail to mention the unprecedently long half-life of the osteoporosis drugs: ten years or more. Therefore, side effects for these drugs, not counting relatively mild ones, are not correlatable with those for other drugs for which adverse effects are generally quickly reversible upon cessation of the drugs. As far as "significantly reduc[ing] the risk of fracture," only some patients gain this benefit from these drugs; a rather high percentage do not. And since FDA is now recommending a "drug holiday" after three to five years of taking bisphosphonates, due to the increasing number of reports of major side effects, it has yet to be determined if any benefits would be maintained after cessation, which renders taking them in the first place a proposition at least deserving of being questioned. Yes, the doctors have "heard it [concerns] all before," and they generally have a boilerplate response, designed to minimize any qualms. Patients must be their own researchers and advocates; we can't depend on doctors' being unbiased or even totally informed about every issue that has important ramifications for our health.  

 

Hi Allison, you've raised some great points and I'll try and respond to some of them as best I can. First - "growing recognition that so-called jaw death may be underreported because numbers being prescribed has increased . ."  How does this folllow - I would have thought the opposite is the case ie. greater numbers taking bisphosphonates (BS), greater reported incidence of side-effects??  Next, you're right, I didn't mention the long half-life of the BS drugs - sometimes stretching for up to 5 years after stopping the drug. To me this means that the bone protection lasts after stopping which is a good thing. . . but also means that side-effects can last for this period also. Not good. You said that other drugs for OP have side-effects that are reversible upon stopping the med. Not necessarily so. Serious, and again very rare, side-effects of strontium, some hormonal treatments,  teriparitide  and some othrs are not reversible. Next, it is indeed true that not all patients benefit equally (ie. reduced fractures) form thaking BS - it seems that those with the most  severe OP benefit most.  . . . I should also have made clear that the best approach re. 'whether or not to take any meds.' is  1) get a DEXA scan and know your t-score and 2) look up the FRAX questionnaire, answer a few stratightforward  questions - and it will compute for YOUR own risk of getting a major osteoporotic fracture in the next 10 years. If it is a significant risk, treatment of some kind is required - it's not good enough to just take Vitamin D and calcium, keep exercising - and hope. Everyone knows that hip fractures carry a high risk of mortality and morbidity and spinal fractures can cause extreme pain and deformity. For myself, I would rather risk a very rare serious side-effect of taking a medication (BS or other) than eg. a 20% risk of a debilitating fracture. So no treatment can have lethal side-effects!! Maybe I sound like someone who works for a drug company. Believe me I don't. I was diagnosed with severe OP (and PMR) and I tortured myself over various treatments and side-effects - then tortured my doctor and refused some medications. Very lonely time. My husband had the attitude of "you're paying an expert, take her bloody advice". So no help there. The reason this is so important is that it has been shown that long term use of steroids (>7.5 mg.) significantly increases the risk of OP - and a recent Irish study showed that 50% of patients do not recieve prophylaxis for OP.  Kind regards.

Hi Juno, thanks for pointing out that what I wrote about the rising use of bisphosphonates and the increase in reported side effects wasn’t clear. What I meant, as you restated, is that there is a greater number of side effects as usage of the drugs increases.

The half-life of the bisphosphonate drugs is not three years but rather a minimum of ten years, according to numerous reports. I do not think this necessarily means that the benefit persists that long, though it seems reasonable to think (or at least hope) that it might.

I’m aware that other drugs can also have irreversible side effects, including death. Still, the bisphosphonates are singular, I believe, for their exceedingly long half life, meaning that patients would likely remain at risk of the catastrophic side effects of jaw death and idiosyncratic trochanteric fracture (hip fracture that occurs in the absence of trauma, e.g., while getting out of bed), possibly for the rest of their lives, depending on their age when they first took the bisphosphonate. (People with osteoporosis tend to be late-middle-age older.)

I do not think it follows that the more severe the osteoporosis the greater the benefit. In fact, the reverse could just as easily be the case, i.e., the earlier that drug treatment begins, the better the chances of arresting the osteoporotic process. Either outcome seems pretty speculative. About the FRAX score, doctors I’ve seen have claimed the FRAX is irrelevant once you are diagnosed with osteoporosis, which I take to mean that it applies only to patients who are still in the osteopenia category.

I completely agree that osteoporosis is a potentially dangerous condition. Unfortunately, it doesn’t follow that the available treatments are safe or advisable. Hopefully, research scientists will come up with something a lot better when we are still able to benefit from it, though I’m not optimistic.

I also am unaware of any peer-reviewed, evidence-based studies showing that people with osteoporosis who opt for drug treatment sustain fewer fractures when they fall. Perhaps such as outcome is impossible to measure in real life. If that’s the case, the supposed benefits of bisphosphonates are purely theoretical, which would be in sync with the rather high number needed to be treated, per estimates, in order to prevent even one fracture.

I wish I shared your husband’s confidence in the so-called “experts.” I’ve seen many medical specialists in various fields over the years and have found them to be just as capable of being mistaken as anyone else, and also prone to clinging to consensus beliefs unless there is a major sea change that can’t be ignored. Consider, for instance, how the experts all insisted, for decades, that ulcers were caused by stress and ingestion of too-spicy food. You could probably have gone to hundreds of GI specialists and all would have espoused this. Now, of course, it’s known that bacteria cause most ulcers and that stress level and diet have nothing to do with it.

I hope for all of our sakes that the tidal wave of bisphosphonate prescribing is stemmed before many more people are harmed. You have clearly made an informed choice to opt for one type of risk over another. I don't think most patients are being given the full picture so that they can reach a meaningful decision. Instead, they are being scared into taking the meds by opinionated physicians, who are not immune to the influence of Big Pharma.

 

My GP sent me away to do my own research as well as see a dentist so I saw two. I am also seeing an oral surgeon for more information and to have an extraction plus a fragment removed from a gum. I am leaning towards prolia and its side effects are also scary. Your arguing with Juno is very helpful as well because you are both writing and arguing so well. I think to do nothing is really not an option though. My reading is high at -3.4. Swallowing a pill could be an issue for me because I often get my other pills stuck so that is why I am leaning towards the prolia. Once my dental work is finished I will see my GP who is a very thorough and helpful doctor. Well done to you and Juno!

I have had the extraction and root removed by an oral surgeon. I have the fosamax tablets and am considering having them changed into liquid form here in Australia as the liquid is not available. I am worried about getting the pill caught as I sometimes do get pills and food caught in my neck. I wonder if anyone has ever had the pill caught or if it would be safe for me to take the pill and hope for the best. Any advice would be welcome.

Hi Kathleen, I've not heard of Fosamax tabs. being "changed into liquid form" or being available in liquid form. . .  If, however, you have found that pills "get caught" when swallowing, did you tell your doctor this as he should know? It's very important that those meds. do NOT get stuck as they can cause problems if they do.  It seems that meds. by mouth would not be the best option but as you know there are other methods of delivering the medication.  . .  It must be a big relief to have had the dental work finished, we all hate it, so well done there! Kind regards.

Thanks Juno. My GP does know I have problems swallowing so she made some calls and located a special chemist who does the compounding at a cost. I might never get them caught but it is a risk as I do get other tablets caught from time to time. 

Hi Kathleen,  Well, as you live, you learn . . . . !  Never heard of that before. Let us know how you get on.  Take care.

This woman is 70 years old. Age matters in treating osteoporosis. The side effects (which could be many) aren't always worth the benefits (which are oftentimes small). There are things to consider before taking these drugs: Has she had fractures? Has her bone density been getting increasingly lower?  Can she increase her dietary calcium/vitamind D3? Read, research, talk to others, get a second opinion. We cannot rush to drugs simply because the pharmaceutical companies and doctors say so. We have to more proactive and in control. 

I am favouring Prolia but terrified of the side effects. My sister is on fosamax so that would be a choice too. 

The other tablet being considered is Actonel.

Hi, I have to say, be guided by your Rheumy. Of the 2, Prolia is the least hassle as it's 6-monthly. Fosamax is on the market for ages, Prolia is newer.  . . I have taken Forteo injections for one year and am now on Actonel since December last and to continue for 5 years. Had no problems with either. (Remember serious side-effects are rare). Actonel is very similiar to Fosamax. How's your sister doing on Fosamax? Keep in touch.

My sister has only been on fosamax for a short while. Her t score is better than mine at -2.8 and she is older. I got mine checked soon after my 70th birthday because it is free here in Australia. With Actonel do you have the same restrictions of when and how you take it as you do with fosamax? 

Probably the side effect I find the most scary is to do with the teeth and jaw. I do not see a rheumatologist only a GP but she is very good.

Hi, yes, you do have exactly the same "restrictions" as with Fosamax. You could opt to take it once a month - which would be a lot easier. I take it once weekly. It can also be taken daily . . . . . Side-effect of Jaw bone problems are really rare and are mostly found in patients taking infusions of very high doses of the medication (called bisphhosphonates) as part of cancer treatment. You have to balance risks here: you are MUCH more likely (if you don't take medication) to have a debilitating fracture than you are to have jaw bone side.effect. Let your doctor reassure you. Before I started on my med. regime I was, like you, questioning her about side-effects that I'd read about. In the end, I asked her would she give these meds. to her own mother and she answered " Not onlly would I give them to her, I sould take them myself". That did it for me anyway. Nothing is risk proof really. I have quited bad OP also. Good luck, Keep in touch. 

Thanks Juno. I feel better about it all than I did a week ago. I have to have a tooth extracted and a fragment dug out of a gum before I start. 

i understand why dental work has to be done before starting on Alendronic Acid. What if the need arises when already taking the weekly pill?

Yes, I have this concern too, George! I will have more issues in the future for sure! It seems there is a small risk and you would have to be very unlucky to have necrosis but someone will have this problem as it happens even if seldom!

that is the problem with side effects. Their incidence is not predictable. we do not suffer 1% of a 1 in a 100 risk. If we get it , we get 100%. if we get a crumbled dead jaw that has a very heavy impact on quality of life. of course crumbled vertibrae have a very big impact on quality of life too.

I hate being made to gamble. I don't gamble on the horses, but at the clinic I have to be a very high roller indeed.

I empathise with you George but what can we do? Can we go off the meds if we have a dental issue and if our osteoporosis has improved will that mean less risk? I am in Australia.

Thank you Kathleen. I live in England.I shall ask my GP next time I see her. Also how long she recommends I stay on Alendronic Acid as there is no agreement as to the optimum time. It does seem that the risk increases with duration.

Perhaps some one else will chip in.

Hi, it's definately advised to have a full dental check before you start eg. Actonel, Fosamax and others. As far as I know, except for hormone treatments ( which are not ofen used for older patients ) Forteo and Strontium Ranelate are the only meds. which would not have any effect (very rare) on jaw bone. . . Both are used to treat severe OP, Forteo is really expensive, both have to be taken daily, - and both have the possibility of serious side-effects (again very rare) but none of these relate to jaw problems. . . Again talk to your doc., she sounds very good. 

I'm not a gambler either George but life throws up these dilemmas at you. Really, I felt the only thing I could do in the end was to do extensive reading of research papers, write down my questions, talk it over with the doc., and then make a choice. Deciding to take no meds.  is still a choice. Also I tell myself, I could be run over by a bus in the morning - and what good would all the worrying have done?? I suppose the bones would have been in better shape anyway!!  

From speaking with my dentist, you do not have to come off these meds. when having dental work done. He said that routine dental work, cleaning, fillings etc are no problem. The problem that may exist is if you need an extraction. This may need specialised care. But then he said something about root-canal (no problem) could be done instead. I'm not exactly sure how that works . . . 

Thank you Juno. That is helpful and comforting to know.

A report in a Canadian medical journal puts the risk of jaw osteonecrosis (jaw death) at 5 percent in patients who are on low-dose bisphosphonates for osteoporosis. This is lower than the rate who have the side effect while taking the drugs for cancer, but not so low as to be insignificant or to fall under the category of "really rare." It is likely that even the 5 percent is an underestimate.

Hi, in my research over the past year I have frequently visited the Osteoporosis Canada website. They discuss all the possible treatments and side-effects and descibe osteonecrosis of the jaw (ONJ) as extremely rare . . and mostly can follow dental surgery (extractions etc). Not supprisingly, they take the approach that the risk of fracture far outweighs the risk of possible serious side-effects . .   Now re.  fracture reduction, the following claims are made: Alendronate (Fosamax) reduces risk of spine and hip fractures by 50% over 2-4 years, Risedronate (Actonel) reduces of spine and non-spine fractures by 35%-45% over 3 years,  Zoledronic Acid (Aclasta) reduces the risk of spinal fractures by 70% and of hip by 41%.I don't know if these claims are justifiable, how would I? But there they are. Anyway, if there is a 5% risk of ONJ in low-dose Bisphosphonates based on this sound study (in hopefully a huge study population), it's beter than a 25% risk of a major osteoporotic fracture for me  - but I'll be sure to give may dental care top priority. . . .  Finally, if you had (or have) OP, what treatment would you choose for yourself?  God knows I gave it enough thought in the past while an this is the best I can come up with. PS. I agree with your views on the husband's philosophy!! 

I do have osteoporosis, likely brought about by long-term use of proton-pump inhibitors for acid reflux -- another class of drugs that doctors used to prescribe indiscriminately and that is increasingly being implicated in bone loss. So far, I've chosen to do nothing. Eight or so years ago, when I was about 54 (I will be 65 soon), I was told that my bone-mass-density exam showed osteopenia. Several doctors urged me to begin Fosamax; I refused. Time bore out that decision, as now the consensus is that medication for osteopenia is neither a good idea nor necessary in patients with no fracture history, whereas before it was being doled out like candy. My money is on a similar reticence about bisphosphonates occurring relative to osteoporosis within the next few years. Meanwhile, I came across an article about romosozumab, a drug still in experimental stages -- said to be more effective than any current osteoporosis drugs and without the risk of the same catastrophic side effects. I'm hoping this pans out, though in likelihood it will have its own downside.

My main point of departure with what you have written is that I don't believe the catastrophic effects are as rare as we've been led to believe. The  mechanism by which bisphosphonates may prevent fracture is apparently still poorly understood, but it's theorized that they do so by preventing bone turnover. Yet it's that turnover that keeps the bone from becoming rigid and, consequently, brittle. The drug-induced rigidity, it's thought, may predispose the bone to break -- in other words, to do the very thing it's supposed to prevent! The reported rate of this type of fracture is, I think, higher than ONJ, and is also the main reason that the Federal Drug Admnistration has now put the brakes on the duration that patients should remain on bisphosphonates.

 

Well said Alison, couldn't disagree with any of that. I certainly wouldn't have been keen to take meds for  osteopenia either, all other factors taken into consideration. I don't know where you live but here (Irl.) they tend to advise taking meds. only after a scan showig t-score  > 3.0  (I think). My own t-score was 4.5 with no fractures and need I say, no symptoms. So, deemed to be at "high risk of fracture", I really felt thrown in at the deep end. I was 61, slim, pretty fit, and, mad though it may seem, was really fond of in-line roller skating. Great balance! All of a sudden I was fearful that if I turned over in the bed I'd fractrue some vertebrae . . Rheumy wanted  initiially 2 years of Forteo injections - we eventually agreed to one year (finished in Dec. last )  and followed by 5 years of Actonel  (now on). I hope your suspicion about bad side-effects being more common than I hope, is very wrong - time will tell. I am not someone who tends to have confidence in the integrity of huge multinational companies but, for me, doing nothing was not an option. Take care.

Of course those figures should have a MINUS before them ie.  t-score > -3.0 and my t-score - 4.5 . . ..  . . . 

Juno, that is extremely high! I am scared with -3 4!

Well there's no point being scared really. I am hoping that after a 18months of treatment the bones will have improved, at least microscopically if not seen on scan - which will indicate that they are becoming stronger and hopefully less likely to break. I am very aware that people with low bone density may not fracture yet some with quite "mild" OP can. A friend (47) a really fit runner slipped on ice during the winter and  fractured her coccyx and 2 wrists. Eventually a DEXA scan osteopenia, not yet OP. Because of her fractures, she was prescribed Actonel - which she takes less that half the time. . . My -4.5 score was in my spine, the rest of me was fine (hip, wrists). Neither of us had family history of OP but of course there are other contributing factors and I have my suspicions!! So Kathleen, whether you have treatment (of whatever kind) or not , the BIG thing is to avoid FALLS at all costs. Falls = fractures = disability, hopefully temporary. So, I have started dance classes to improve balance and brisk walking for fitness. Both are weight- bearing and good for bones. Also Vit D and Calcium obviously. So there - that's it in a nutshell! Being panicy won't help, look on it as a challenge - and be glad it's not somethiing worse. Keep in touch. 

Well I am using a walker and will continue to do so. I had to because of vertigo and I still have mild dizziness but the vertigo is much improved! -4.5 according to my physiotherapist is extremely high and very susceptible to breaks. I am clumsy anyway and have falls every so often so I think the walker will give me confidence to keep moving. I was back in the pool for the first time yesterday since getting vertigo so that will help me. I hope you manage not to fall.

I went to an oral surgeon today and was given some invaluable information. He has seen hundreds of patients and treated necrosis of the jaw. He advised against my taking prolia because the management with necrosis is problematic. Instead, he suggested I choose either fosamax or actonel. You can take either of these for three years without damage to the jaw when having an extraction. After three years if you need an extraction you have a blood test called CTX and if you get a reading of above 150 you are safe to have the extraction. If it is lower then stop the meds for a while to get the reading up before having the extraction. There is more control with fosamax and actonel than prolia. He will extract one tooth for me as well as removing a fragment from a tooth extracted many years ago. I was very happy to be able to access a specialist with this experience and knowledge.

That is invaluable information. Than you very much for passing that on. I shall tuck it away carefully (although I hope I shall not need it)..

Very helpful Kathleen, thank you for that. That means I may have two more years of Actonel before I have to make "the decision". As I mentioned, my own dentist (not oral surgeon) talked about root-canal treatment to be done instead of an extraction, but I was not sure what that was all about. Hope that I need neither and that, after a few years on Actonel and one year of Forsteo injections, I have the jaw bone of an elephant !!!  Mind yourself. J

 

Your numbers are exaggerated. The benefits are far, far lower. I advise people to look at the current (2016) numbers for these drugs. The risk of osteonecrosis of the jaw is not "rare," by any means. 

I am pleased that you are pointing to what I, too, believe to be the myth of "rarity" of catastrophic side-effects of osteoporosis drugs, as my own layperson's research on this matter confirms this. For instance, a recent NY Times front-page article, masquerading as news, asserted that "millions" are "missing out" on the "benefits" of the drugs out of fear of "rare" (I think the adjective "exceedingly" may have preceded "rare" side-effects. Yet this puff-piece was followed by an avalanche of reader comments, many of which cited either firsthand experience of adverse side-effects or firsthand knowledge of such side-effects due to being close to someone who had had them.

Note, however, that you are responding to a thread that is more than a year old. Perhaps you could start a new thread raising the question of the drugs' dubious risk-to-benefit ratio?