Am I understanding that the treatment echoes the condition? That prolia can cause the very thing it is supposed to prevent?

Yes, it causes bone loss.

My mom was on Fosamax for many years. After my dad passed, she came to live with me which meant she had been in charge of her own medicatiions for a long time. I looked at what she was taking and organized them and found 2 bottles of Fosamax so she was taking a double dose for who knows how long. However, she never had a problem with it and also never broke a bone. She was 91 when she passed.

I am not in favor of medications but I know I am probably being foolish to believe I can get away with that forever. I'll be 75 very soon and I don't take anything. My numbers are all mostly good to one or two that are borderline. I can live with that. I do use Advil on the odd occasion that I have any little pain and that works for me.

It's a very hard decision to make. I hope you find the answers you need.

I too am not in favor of medications, but then again, they do make a difference and mostly positive...or at least generally more positive than the disease they are treating.

I was hyperthyroid for decades which puts one at greater risk of osteoporosis. Bone scan shows osteoporosis in my wrist, but osteopenia elsewhere. Endo says, if you have it in one place, you have it. But hip replacement dr. thought my bones looked to be in good shape.

I was supposed to go for the shot today, but the nurse who would give it called in sick...don't know if that's a sign???!!!

I would definitely take it as a sign. I wish we had a "hug" choice because I would give you one for your struggle here. I, of course, would accept the hip doctor's assessment. But that is just me. :)

Annie, I can empathize with your concern about this specific decision. An endocrinologist recommended I start on Fosomax 9 years ago based on my frax score. I was relatively young to be on bone building drugs but I‘d had a diagnosis of osteopenia for years & was being monitored with bone scans also started earlier than the recommended screening age. My risk factors for low bone density included years of off & on prednisone for asthma control, being low & underweight,family history in father’s sisters, never bearing children, caucasion etc. I did have a healthy life style & exercised but still came to this point of having to decide on drugs. I asked about Prolia & the doctor said Fosamax was the ”gold standard” for treatment, While I was hemming & hawing she told me of a patient who had broken several ribs from the act of sneezing. That made me sit up straight. I decided then that the risk of jaw or bone necrosis was lower than the risk of breaking a bone without the drug. I took Fosamax for 5 years then had a two year holiday off, It was supposed to be 1 year off per my PCP but somehow that was missed, My last bone scan showed osteoporosis in spine. I’ve not lost any height or had any fractures & I still exercise for bone strength. I’ve been back on drug for 2 years, I’ve never had any issues with my once weekly pill. My PCP explained that the max lifetime length for taking Fosamax is 10 years with a break at 5 year point. I asked what happens in 3 years when I hit the 10 year dosing mark. Her answer was vague - a sort of we’ll deal with that when we get there.

I think one's age might play a part in one's decision. I don't know the research, but when are the risks for jaw necrosis and femur weakness the greatest? I mean, after how many years of taking a bisphosphonate? Factor that in with the number of years that you might take the drug and assess the resulting risk.

I still exercise for bone strength

Yes, whatever drug treatment you’re on, weight-bearing exercise is a very important component.

I do understand how important weight bearing exercise is for bone building. A personal trainer advised me to carry or wear weights when walking. She told me I needed to offset my lack of body weight. Thanks, I said. 😬

KW, your personal trainer is a keeper. Those adjustable weights wrapped around ankles and wrists will work, or some weights in a backpack.

KW, just so you know, the latest is that prolia is supposed to be usable for longer than fosamax and have less risk of the necrosis and bone fracture.

Annie, if you can message, I have info for you.

I was on Prolia for three years, with no trouble at all. My orthopedist said that he had never seen one case of femur fractures. He's my age, so he's been around awhile. My dentist said that he had never seen a jaw issue in his practice. He's the same age too.

The rules for taking fosamax seemed like a lot of work.That being said, when I was diagnosed during the pandemic, I could not find an endocrinologist to take me as a new patient, so I finessed it myself by finding a hematologist who would give me the shot with a prescription from my PCP. That got to be burdensome, trying to make sure everybody was on the same page and on top of things.This year, I finally connected with an endocrinologist who is certified in reading bone density scans, and when I went to him, he said that three years of Prolia was enough and that I needed to move on to Reclast, which is a once-a-year infusion. Okay. The infusion itself was NBD, but the imediate side effects were like having the worst flu you could even imagine. Chills, fever, aches. If you ever have this, clear a week off your schedule. I can hardly wait for the next one. NOT.

The other bad part is that Reclast can affect your kidneys, so I have had to be careful with the Advil and Aleve, which affects them too. The doctor suggested Tylenol instead, which really doesn't do the same thing at all, and it affects your liver. I guess I have to pick which organ I want to lose.

I was doomed for this. Breast cancer at 38, menopause at 40 from the treatment. I lost probably 20 years of estrogen, and here I am. I have come to the conclusion that there are no good conclusions.

I've taken several of the osteoporosis drugs, Fosamax, Prolia and others. I've had femur fractures requiring surgery on both legs. Not saying anyone should not take these drugs. The old saying...you are darned if you do and darned if you don't.

the latest is that prolia is supposed to be usable for longer than fosamax and have less risk of the necrosis and bone fracture.

From what I’m aware, people on fosamax can take a drug holiday because the drug has long half life and stays in bone for many years, while Prolia does not stay in bone and must be given every 6 months continuously. Stopping it abruptly can cause rapid bone loss and increased fracture risk without switching to another medication. Both drugs can cause jaw necrosis and atypical fractures with long use.

My understanding is the same as palisades. His statement is what my endocrinologist explained when I asked about Prolia over Fosamax.

Reading all this scares me. I have both osteoporosis and osteopenia and am scared of taking drugs. I take 7 vitamins daily period. I just got back from having a cracked molar extracted. I'm not feeling that great right now with a numbed face. The first thing the dentist said was are you on any osteoporosis meds. I was 5 feet 6 inches, but have shrunk. I only weigh 108 pounds and have a very small build. My legs are muscular from the three miles a day of hiking, but my upper body is too skinny. It's genetic. My parents were thin, and my mother at 5 feet, weighed 100 pounds and never had a broken bone, dying at almost 92. But I have aunts from both sides who were also thin, and both suffered broken bones. So it's troublesome.

I decided against it I’ll take my chances and if a broken hip kills me, so be it.

I will check into K2 for sure.

Sherri, I have temporarily turned on messaging so feel free to send me that info.

Thanks in advance!

I too wondered if it was worth it.

My mother died after breaking her hip. but with all the other problems she had by the age of 89, it was a moot point.

My aunt sneezed and broke her back. She suffered for years after that.

I took Actonel 18 years ago for three years. I had some improvement in my scans. Then I went in for another scan 8 years ago and there was some decline, but not too bad.

I got another scan almost 3 years ago and I had osteoporosis in the hip.

I am taking my third Reclast infusion next week.

I have had no side effects and I love how easy it is. No having to remember to take it, I can eat right away in the morning. I can lay down or bend over when I want to'

You only take it for 3 years. My insurance covered it.

Sometimes when I wonder if it is worth taking a medicine, I ask my doctor if she would take it if she were in my shoes,

That's the problem with medicine...no "undo" button. I can alway start prolia, but once I take it, if it does damage, I can't undo it.

I've decided to cancel the appointment and I'm going to add K2 supplements in the form of MK-7 and see if that makes a difference.

Sounds like a very sensible solution. Good job working that out. Good luck.

My only thought on your plan of action Annie is that bone changes don’t happen overnight. That’s why the dexa scans are at least 2 years apart. It takes that long to see change positive or negative. I was very hesitant too so I get it. But, I based my decision on my frax (fracture) risk. I also believed my doc’s story about the broken ribs from the simple act of sneezing. Someone in this thread related an instance of spinal fracture from sneezing. IMO, if supplements worked well enough our doctors would be advising us to take them instead of medicine. The supplements might help us until we reach a certain point but then the big guns are needed. I believe in science.

I believe in science too. But regardless of the risk/benefit analysis of taking a drug, if you are the one with the dying jaw bone or the snapped femur, it really doesn't matter if it's rare or not. You're the one still suffering.

@KW PNW Z8- medicine isn't science.

I've had my share of contradictory diagnoses/treatment recommendations. Had I done what some docs advised, I'd have ended up an invalid. I'll spare you the details. I'm sure I'm not the only one with such experience.

Annie - I do agree with you that there is no undo button! Your opinion is the only one that matters in making this kind of decision. I also do understand anyone’s hesitation over taking these drugs. I have the same feelings about the efficacy of taking supplements for the many conditions people take them. That’s a personal decision too. I wanted to bring up the point about the length of time it might take to see any change, good or bad, from taking either a prescription medicine or a supplement.

@wintercat_gw - I can’t agree with your note ”medicine isn’t science.” Your opinion is the only one that matters to you so that’s fine. But, your comment made me think about my opinion so I looked it up. AI’s definition says it better than I can & I offer it here - not to change your opinion but to better define mine.

Yes, medicine is considered an applied science or a branch of health science, not a pure science, that utilizes the principles of biology, chemistry, and physics to diagnose, treat, and prevent disease. While medical research (biomedical science) is pure science, clinical medicine combines scientific research with humanistic skills.

@KW PNW Z8 - There are numerous articles, including by MDs, arguing that medicine is not science. Here's a link to one entitled "Medicine is not science: guessing the future, predicting the past"

https://pubmed.ncbi.nlm.nih.gov/24953194/

As for the AI results, there this note at the end of the AI results you posted:

"Note: There is a strong counter-argument that medicine is becoming increasingly Evidence-Based Medicine (EBM), and ignoring scientific data in favor of "art" can lead to lower quality care".

As for me, I'm wondering: If medicine is science, why are medical second opinions necessary at all? And have you ever had the opportunity of overhearing docs arguing about a case without said docs even realizing they're being overheard? It's a life-changing experience, believe me.

@wintercat_gw We can find much to support both of our opinions. What’s important here is that Annie has made a decision that she feels good about and that makes her comfortable.

@KW PNW Z8 - I joined the discussion only when you referred to medicine as science, and my purpose was to discuss a general issue, not Annie's issue.

The problem is neither medicine nor science is pure, but rather adulterated by the medical/industrial complex, grants which bias the research outcomes or bias which research is published, and supplements which may not be studied because there's no big $$ in it like there is with patented medicine. Not to mention basic incompetence and fraud which affects every industry, but especially where the $$ flows. Moreover, a doc may know more about medicine than I do, but I know more about my body and how it feels and reacts than they do. So we have to be our own advocates, make our own judgments as to what we are comfortable with, do our own cost/benefit analysis and hope we are relying on accurate information. It's a mare's nest out there, but it's all we have.

As my old dear doc used to say, if you want to stay healthy, stay away from doctors!

Let’s leave out the adulterated aspect of medicine and science for a moment to clarify the fact that medicine is a science based field, grounded in biology, physiology, inorganic chemistry, organic chemistry, medicinal chemistry, pharmacokinetics, clinical trials (evidence-based medicine). Moreover, modern medicine has advanced through experimentation, statistical analysis, and reproducible researches.

It’s interesting to note that the author (Miller) in the pubmed article above is not a MD, only holding a Bachelor of Science degree. His arguments of diagnosis as using past cases to infer current ones, and treatment as an educated guess about the future are misleading because medicine is a science-based practice applied to complex, unpredictable systems (i.e. human, animal), which means it also requires judgment, experience, and probabilistic reasoning.

However it’s well known that medicine can be less predictable than science fields like engineering because patients are highly variable (genetics, environment, behavior), clinical decisions are often made under uncertainty, and predictions are probabilistic and not exact - so some people on Fosamax over time may develop jaw necrosis, but many people may not.

Be sure you are getting plenty of protein and calcium. Weight bearing exercise is important as well as including some impact and balance exercise. I recommend checking out Dr. Lisa Moore and her Brick House Bones site on YouTube

After try Boniva, Fosamax and one other that I’m unable to remember the name of, with no benefit, I went on Prolia several years ago. My numbers have improved, and I’ve had a dental implant which went well.