I was offered my choice of bisphosphonates after breaking my shoulder and ending up with a diagnosis of osteoporosis. I initially opted for Reclast, a drug that only requires one dose a year albeit by IV infusion. I made an appointment to get the drug several weeks later. I wanted to have time to research my options.
After reading as much as I could during that time, I made an appointment with my bone health specialist to discuss the treatment. We spent 45 minutes discussing the osteoporosis literature. Despite being a physician, trained in endocrinology, and now pretty up-to-date on the treatment, I just could not bring myself to tell her that, yes, I would take the drug in any of its formulations. Why is that?
I am not anti-medication; I take a ton of them for various conditions that I blame on my mother’s side of the family as well as certain of my less than stellar habits. I also understand the seriousness of the disorder, not only because my broken bone hurt like hell, but also because I am aware of the dismal outcomes of people who fall and break their hips or fracture their vertebrae. This is definitely a serious condition.
I also know that I am probably not going to build stronger bones without some type of treatment. With the exception of taking calcium supplements, I was already doing all of the recommended lifestyle interventions. I started running in my late 20’s and have continued to do weight-bearing exercises until this day. I eat a healthy diet and I have never had to take any of the drugs known to weaken bones. I even took a selective estrogen receptor modifier (SERM) for more than 20 years. Although I was diagnosed with Vitamin D deficiency a few years ago, I have had D3 levels in the normal range since I started taking supplements.
So, my choice was taking bisphosphonates—the current drug of choice for osteoporosis—or taking my chances that I won’t get another fracture.
Related Content: Early Testing for Osteoporosis Gives a Voice to a Silent Disease
A crisis in the treatment of osteoporosis
An editorial (August 2016) in the Journal of Bone and Mineral Research, titled “A Crises in the Treatment of Osteoporosis,” makes it clear that I am not alone in my ambivalence about the current treatment of choice. A study that looked at bisphosphonate use in 22,598 hip fracture patients to prevent additional fractures, found that the use of the drug decreased from a measly 15% in 2004 to an “abysmal” 3% by 2013.
The authors of the editorial are Sundeep Khosla, MD from Mayo Clinic and Elizabeth Shane from Columbia University (the former with no conflicts of interest, the latter with a history of research support from Lilly, Amgen, and Merck, the manufacturer of the most commonly prescribed bisphosphonate, Fosamax). They note that although bisphosphonates are the “most widely-used drugs today to prevent and treat osteoporosis,” serious side effects, such as osteonecrosis of the jaw, atrial fibrillation, and atypical femur fractures, have scared people away from these drugs even though they are rare.
Citing an analysis of three randomized clinical trials of bisphosphonates, the authors point out that it is the relative risk, not absolute risk that needs to be discussed with patients fearful of taking these drugs. Here is what they mean:
- About 100 fractures (vertebral and nonvertebral) are prevented if 1000 women with osteoporosis are treated with a bisphosphonate for 3 years. The number needed to treat (NNT) is 10. The number needed to treat for statins is 56. The smaller the number, the better. An NNT of 1 means everyone improves with the treatment and no one in the control group gets better.
- For the 100 fractures prevented by taking bisphosphonates, 0.02 to 1.25 atypical femur fractures occur. The number needed to harm is 800 to 43,300.
To translate this, there is a very good chance patients will benefit from bisphosphonates and a very small chance that they will be harmed.
In addition to fear of the horrific, albeit rare side effects, there is the difficulty taking the drug in oral form. You have to take it on an empty stomach and not lay down or eat for at least a half hour. If you opt for the IV form, you have to get yourself to an infusion clinic to receive it, which is time-consuming and costly.
Stoking the fear
Fear is stoked in no small measure by the large number of stories on the Internet. Google “bisphosphonates” and you will almost certainly come across the prolific writings of Vivian Goldschmidt, Founder of The Save Institute (short for “Save Our Bones”). Her website proclaims the Institute provides
“…natural evidence-based solutions [for osteoporosis] that anyone can understand and implement”
The website is loaded with both testimonials, like this one,
“Been on your program one and a half years. my dexa was -4.9 a year ago, went back this year my dexa was -0.7. I am so happy with the exercises and the supplements.”
and “alerts” about bisphosphonates, like these:
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ALERT: Bisphosphonates Double the Risk Of Esophageal Cancer
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ALERT: Bisphosphonates Almost Double The Risk Of Vision Loss
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Alert! Never-Published Study Uncovers How And Why Bisphosphonates Cause Atypical Fractures
The alerts are accompanied by comments from readers that describe horrible side effects all brought on by taking bisphosphonates.
I don’t mean to pick on Save our Bones but the internet is flooded with bad bisphosphonate stories.
What’s a patient to do?
I was lucky. I have access to a bone health expert and a PCP, both of whom have been willing to talk me through my bisphosphonate fears. Interestingly, what finally pushed me over to the “take them, you fool” side of the equation was a photo our Social Media Manager Steffie Harner found to accompany my own story on drugs and osteoporosis.
The woman in this photo conjured up visions of my much loved strong but shrinking, blue-haired granny. Although she didn’t fall and break her hip, she clearly had osteoporosis at the end of her life. This could have been her…or, it might be me.
Although I am an endocrinology-trained physician who has read the recent osteoporosis literature, it took a photo to really bring home to me what the consequences could be for me if I didn’t take the drug that my doctors and most osteoporosis experts recommend.
Patient decision-making in the era of empowered patients is complex and poorly understood. In the old days when doctors were gods, they (we) said it and you did it (or not).
However, in the internet era, the inputs into the decision-making process have grown exponentially. There is so much to see, read, and listen to. So, who would have guessed that my own informed decision would be so heavily influenced by my emotional response to a photo? This should give pause to all of us who pontificate about patient behavior.
10/1/16 Postscript: I took my first alendronate (generic Fosamax) pill almost a week ago and outside of the inconvenience of having to plan my morning around the dosing, I didn’t feel a thing. Everything’s good…so far.
2/11/2021 Postscript: So everything did not turn out to be fine after all. I took Fosamax for several months when I started noticing something was wrong with my vision. I had more floaters than usual and something just didn’t feel right. It took me another couple of months to get myself in to see an ophthalmologist. To my horror, he found on OCT examination that I had huge lesions in both of my eyes. He immediately suspected a rare condition called chorioretinitis.
I was referred to a specialist in that type of disease who was part of my health plan. The treatment was high dose Prednisone (definitely not good for my osteoporosis) and Cellcept – an immunosuppressant that came with many pages of warnings. Despite exhortations from my PCP, I discontinued the Fosamax deciding that a broken bone was infinitely better than going blind.
I got a second opinion from a Stanford doctor who is renowned for his work on this type of problem. Together we decided that my eye disease could have been related to taking Fosamax. This was primarily because my eyes were fine on OCT before I started taking the drug and scarred afterward with all of the known causes of the condition being ruled out by extensive testing. Eventually, I was written up as a case report in the Journal of Opthalmology.
Now, we don’t know with a high degree of certainty that Fosamax caused the eye disease. The only way to prove it would be to take the drug again and see if my condition worsened. Of course, I am not going to do that. So, dear readers, it is hard to know what to tell you about taking Fosamax or related drugs. The one thing I can say with certainty though is that we need much better treatments for this common and sometimes debilitating disease.
Patricia Salber, MD, MBA
Website:
https://thedoctorweighsin.com
Patricia Salber, MD, MBA is the Founder. CEO, and Editor-in-Chief of The Doctor Weighs In (TDWI). Founded in 2005 as a single-author blog, it has evolved into a multi-authored, multi-media health information site with a global audience. She has worked hard to ensure that TDWI is a trusted resource for health information on a wide variety of health topics. Moreover, Dr. Salber is widely acknowledged as an important contributor to the health information space, including having been honored by LinkedIn as one of ten Top Voices in Healthcare in both 2017 and 2018.
Dr. Salber has a long list of peer-reviewed publications as well as publications in trade and popular press. She has published two books, the latest being “Connected Health: Improving Care, Safety, and Efficiency with Wearables and IoT solutions. She has hosted podcasts and video interviews with many well-known healthcare experts and innovators. Spreading the word about health and healthcare innovation is her passion.
She attended the University of California Berkeley for her undergraduate and graduate studies and UC San Francisco for medical school, internal medicine residency, and endocrine fellowship. She also completed a Pew Fellowship in Health Policy at the affiliated Institute for Health Policy Studies. She earned an MBA with a health focus at the University of California Irvine.
She joined Kaiser Permanente (KP)where she practiced emergency medicine as a board-certified internist and emergency physician before moving into administration. She served as the first Physician Director for National Accounts at the Permanente Federation. And, also served as the lead on a dedicated Kaiser Permanente-General Motors team to help GM with its managed care strategy. GM was the largest private purchaser of healthcare in the world at that time. After leaving KP, she worked as a physician executive in a number of health plans, including serving as EVP and Chief Medical Officer at Universal American.
She consults and/or advises a wide variety of organizations including digital start-ups such as CliniOps, My Safety Nest, and Doctor Base (acquired). She currently consults with Duty First Consulting as well as Faegre, Drinker, Biddle, and Reath, LLP.
Pat serves on the Board of Trustees of MedShare, a global humanitarian organization. She chairs the organization’s Development Committee and she also chairs MedShare's Western Regional Council.
Dr. Salber is married and lives with her husband and dog in beautiful Marin County in California. She has three grown children and two granddaughters with whom she loves to travel.
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I loved your article as I, too, struggle with this same quandary.
My PCP prescribed Prolia after evaluating my latest bone density test, now showing osteoporosis in my spine (not yet as bad in my femur). I discussed this with my periodontist and he said NO. He shared a paper showing a summary of the concerns from the dental and osteo communities. I would like to send you this PDF.
Why was I seeing a periodontist? I had to have my two front bottom teeth pulled as one had cracked in half. They both showed internal resorption (teeth were dying from the inside). I took Fosamax 12 or so years ago – for 4.5 years – and who knows, maybe this contributed to my dental issues. My periodontist said the bisphosphonates can linger in our bodies for 10 or more years. They definitely change the body’s natural bone-rebuilding process.
Let me know if you’d be interested in the PDF. The title is:
UPDATE ON DRUG INDUCED OSTEONECROSIS OR OSTEOCHEMONECROSIS: WHAT WE NOW KNOW
Please do send the paper directly to me at [email protected]. You are doing the right thing researching and getting second opinions. Be sure to check the credentials of anyone you consult – make sure they have the training and expertise to be giving you advice.
You may have to make a final decision about what to do in the absence of absolutely definitive information because that is the nature of medicine. There is still a lot we do not know about osteoporosis and the drugs used to treat it. Sometimes you have to go with the best (informed) guess.
Hello Dr. Salber,
I really appreciated reading your 2016 article on why many are reluctant to take medicine for osteoporosis ( https://thedoctorweighsin.com/why-are-so-many-people-taking-their-chances-with-osteoporosis/ ) .
Have just been diagnosed with osteoporosis (DEXA -2.7 – which decreased from -2.4 two years ago), my gyn doctor is recommending Fosamax, while my primary care brought up Prolia since I don’t seem to have standard benefits/reactions to many medicines. I will be meeting with an endocrinologist in two weeks.
I am taking this seriously (as I did two years ago – when I added a weight program to my running). My mother had osteoporosis and did everything right – everything they told her to do. She had at least 3 occasions of compression fractures of her spine/vertebrae. She also suffered from spinal stenosis, but I think that is irrelevant/unrelated. She walked, ate the right foods, and took most of the meds available over time.
So, I found your article quite interesting and informative. I had a couple questions if you might have time to answer:
1) You mentioned the article was updated with the following statement (in all caps) at the top of the article – however I didn’t notice anything in the article mentioning what happened to your eye and what this risk is – can you please elaborate for me? NOTE: THIS ARTICLE IS BEING UPDATED TO REFLECT THE CURRENT EVIDENCE AND MY PERSONAL EXPERIENCE OF DEVELOPING A RARE EYE CONDITION WHICH IS PRESUMABLY RELATED TO THE DRUG.
2) May I ask how your treatment went with Fosamax? Did you stay with that medicine and have better DEXA scans? Did you find an alternative that worked for you?
I’m not asking for medical advice, just answers to those questions to help in my research. There are so many hype sites for Osteoporosis treatment (natural) that it’s hard to find an honest article like yours. I respect you for that.
Thank you,
Scholastica
Hi Scholastica,
My PCP recommended Fosamax after I have what was said to be a “fragility fracture.” I took it for about 5 or 6 months stopping after I developed a rare progressive eye disease – chorioretinitis. All of the known causes of that condition were ruled out with testing. So my diagnosis fell into the unknown category. However, my Stanford ophthalmologist agreed with me that my history was suggestive that Fosamax could have been the cause. My case was published in the Journal of Opthalmology. The only way to know for sure that it was the cause is to take the drug again and see if the disease gets worse, but of course, that is not a viable option.
I did consult with an endocrinologist and was briefly on Forteo, but in the end, I stopped all treatment for osteoporosis because most are given for a limited time – usually a couple of years – and then you are back to baseline. So I am now in the “I am taking my chances” category. I am hoping new, more effective approaches to this common, progressive condition will become available in the future.
Meanwhile, I do what you do (eat right, lots of exercise (weight-bearing and long hikes – but not the kind of pounding exercise like running, jump-roping that are supposed to be good for bones.) I also try my best to not fall again. I always hike with hiking poles, I watch where I put my feet when I walk, and I do balance exercises.
Thanks for the nudge to update that article. I will move it to the top of the list.
Meanwhile, stay in touch here. Having a community of people in the same boat can be a powerful experience. Pat
My doctor urged me to go onto Prolia injections after I sustained a slight fracture to one of my ribs after tripping on a broken pavement whilst out training for the marathon. After the first injection I noticed a painful and very strange sensation throughout my whole skeleton coupled with leg muscle pain. As the six months came closer I noticed some improvement. Days after the second injection the pain came back but much worse as was the muscle pain. I rejected a third injection and was put on Actonel weekly. After about three weeks the pain returned and each week got worse. Stopped taking the medication and began reading about how these medications work. Appeared I was getting thicker bones due to my bones not shedding old cells. Went to doctor and was told could still experience a fracture in the future due to that old bone being brittle. I’m done. Bought the Savers institute program and have made changes. Started on marine based calcium, Vit D3, Vitamin K, spirulina, garlic, magnesium, zinc and MSM.As I have always exercised I am now increasing the level again as the pain in my bones and muscles wears off, with a focus on weight training. My vegan diet ( I was vegetarian for 35 years with a quite high dairy intake, so much for dairy being good for your bones!) was already sound so I am trying the alkaline approach. A non smoker and non drinker I would prefer quality of life and not getting crippled with pain from an elective medication.
I took fosomax for nearly 2 years. About 1 year in, i developed pain in my hips and going down my legs. I mentioned this to my PCP but he did nothing. By the second year, i began researching about fosamax and fractures and decided to discontinue taking the fosamax – in fact a recent visit to an Rheumatologist told me that those feelings were a precursor to a femur fracture. So “save our bones” may have saved me from a fosamax fracture. The other thing of note was that nearly none of my t-scores were improved by the fosomax. And two years after discontinuing the fosomax, my t-scores remain stable. Now this doctor wants to start me on another medication. I am still on the fence as to whether i will accept his offer. So yes, call me skeptical but i don’t believe the current medicinal offerings for treating osteoporosis are all that they claim to be.
Hi Gary. Thank you for your comment and a great reminder that this post needs to be updated – until I get that done, there will be a disclaimer on the story. I did start on Fosamax after being nagged by my PCP (remember I am an endocrine trained internist as well). I was most worried about tie of the drug to spontaneous femur fractures. Who would have thought that I would end up getting a very rare inflammation of my retina (chorioretinitis) that may well be due to the Fosamax. Although the only way to prove it is by restarting the Fosamax and seeing if the eye disease gets worse. Of course, I am not going to do that. Instead, my clinical history was written up by my Stanford specialist and I am now a case report in the Journal of Ophthalmology.
Good for you to paying attention to your symptoms and for having a doctor who listened. My internist keep pushing me to take the Fosamax even after I got the eye disease. It stopped after the case report!
We need better prevention and treatment of this common, sometimes debilitating condition.
Thank you for the reply. The only reason i am even aware of my osteoporosis in the first place was due to a Life Line Screening Test that showed a T-score of -0.5. The test is somewhat subjective but in this case they were right. When i mentioned this test to my PCP, he just blew me off. I have found that doctors don’t like LLS tests (or perhaps it was because he did not sugest it). The new doctor is suggesting Prolia. The side effects of this drug scare me more than the Fosomax. I was blissfully ignorant of my osteoporosis before the LLS test. Are you aware of FRAX (Fracture Risk Assesment Tool)? Using this tool, it says i only have a 13% chance of a Major osteoporotic fracture and a 5.2% of a hip fracture over the next 10 years. That sounds like some numbers i can live with versus drug side effects. Unfortunately, the internet is full of information (both factual and plenty of unqualified opinions). thanks for your web site and best of luck to you in finding the best option for you.
I think that showing a picture of somebody fallen is a classic case of “Stoking the fear” No treatment will keep you from falling, though you might have better odds of keeping your bones if you take drugs that intervene in the natural process. You also might have even better odds if you do weight bearing exercises and pursue the latest nutritional info on supporting the bone rebuilding process (vs, blocking parts of it) but sure, people want pills and docs want easy interventions, and there are products that are being marketed. You somehow dismiss all this with “I run and take calcium and it’s not enough” I would think not. So you conclude, gotta take these drugs are you will get broken bones. Honestly, most at risk will get broken bones anyway sooner or later, whether they take the drug or not. Unless they die of other diseases first.
I read the published article and question the wording and tone of many of their statements and implications. They act as though current drug treatments have “conquered” the problem when in reality, it has slightly reduced (or delayed) the numbers of fractures. Most will still occur even with the intervention and it is not a cure.
Maybe I’m wrong, but you (or the information you share here) also seems to play with statistics in the manner that when you state the risks of ONE type of atypical fracture considered to be a “cost” of Biphosphonates, you do not compare apples to apples to indicate what that risk is among the same number treated for the same time to get the benefit. The time frame is not stated, but apparently of the 1000 treated your statistic chooses to ignore “cost” to 900 of them and ONLY consider the “cost” or bad effects from the drug on the 100 who apparently responded to the drug intervention. There is a problem with this lopsided comparison beyond deceptive statistics, including bias on the part of only noting side effect on the selected 100 responders and not the 900 others who also took the drug – with zero benefit. We want to know the “cost” to the whole group needed to treat in order to get benefits for the 10%.
This is not to conclude that this intervention does not have a reasonable cost/benefit ratio for some or many but simply that this is not an accurate way to portray the reality.