Has anyone found recent research on the number of women who have osteoporosis who opt to take meds vs. not meds?

[dcdream]

I'm trying to find recent research that shows the number of women with primary osteoporosis who take meds or refuse meds.

[Fruitandnutcase]

Can’t find exact % but I found these papers that might help answer your question. It doesn’t give exact numbers but I suppose you could say that refusing osteoporosis meds isn’t uncommon

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

[dcdream in reply to Fruitandnutcase]

Thanks for info. Appears from my own searches, that recent articles and research are harder to find. Have you read any articles that show research on the number of women taking the meds who fracture vs those who reject treatment? It appears world wide that researchers are trying to develop new drugs because world wide women do reject meds in numbers that are concerning. It seems it's about risk of fracture only, with the drug companies setting the goal post but perhaps the difference of benefit of meds over not doing so, isn't as large as one would think. that's what I"m trying to find out. What exactly does the research show today versus back in 2015. Seems like the medical profession continues to push the same drugs knowing women are concerned with them.

[Mark_ABH in reply to dcdream]

Hi dcdream, just FYI, the FDA has required pharmaceutical companies to demonstrate that osteoporosis medicines reduce fracture risk (vs. control/placebo) as a primary endpoint in order to advance in the approval process. This has proven difficult because showing a difference in fracture risk requires studying large populations for long periods of time. This is expensive and takes forever to turn around. It would be easier (and possibly more desirable from the standpoint of more new medicines being able to come to market) for pharmas to show an increase in bone density or a slowing in the rate of decline in bone density. That just isn't how it works, at this point. There was one medicine recently that advanced to another stage after showing improvement in BMD, so maybe the FDA will change what it requires.

By the way, I am not clear on what type of research you are looking for. There are new studies being done all the time on the currently approved osteoporosis medicines. What they are looking at now is which sequence is most effective (for example, should a patient at very high risk of fracture start on Tymlos? Or Evenity? After a year, should they switch to a bisphosphonate? Or switch to denosumab?).

[dcdream]

I thought by now, after having medicines like fosamax on the market for decades, that research would be available now to answer this question. What I do see is that there is a difference between how doctors dispense meds/protocol. For example, my primary doctor believes I should take fosamax for 2-3 years and then go off and on as needed for life. Yet, research shows that doing so tends to create brittle bones that fracture easier as time goes by. Often too, from research, it appears that these drugs don't give the results and then women are placed on another type of med for osteoporosis. I just saw an endocrinologist who believes I should take fosamax for 7 years and then go on and off for the remainder of my life. Two doctors, two difference protocols. Yet, research varies on this protocol as well. What I'm trying to find is what is the fracture rate of those who take the meds versus those who don't. I would also be interesting to see if those who don't take meds but use resistance training, strength training, proper diet and supplements (if needed) do as well or better than those on drugs.

[Hidden]

Hi dcdream,

I know what you are asking in terms of wanting to know the statistics for people who opt out of medication and treat with supplements, diet and exercise. The only thing I turned up in all my research is one women who has a Youtube channel showing she put herself back into osteopenia this way. That is it. I have, however, read many times on this forum and others many women coming back after time of opting away from meds sharing that their numbers have worsened.

I think the medicine needs much improvement. In today's day and age, you would think it would be a bit more advanced. However, there are studies and it has been shown to at the very least slow the progression of the disease.

It was a hard choice for me to decide on Fosamax (today was my third dose). I decided to because my diet and exercise were already what is recommended. My weight is good. I am very active and strong. I lift boxes in warehouse for living and walk miles a day as well as do strength training. Aside from taking supplements, there was nothing more for me to do to help myself without meds.

I realize now that I may have had this disease for a long time. Just because I just found out now does not mean it just happened. My periods were terrible from my very first one and I menopaused at 38 years old. Why? No one ever looked into it. What I am so mad about is no one said, early onset menopause causes osteo and you should do this or that. Nothing.

I was diagnosed only because a young doctor did my exam to stand in for my regular gyno and she suggested it. Thanks to her I am now aware of this before it may have been much worse.

I have never broken a bone and now I fear I am going to break into pieces. It is terrible that any of us are going through this when we should have been educated about it from our doctor at the proper time. We have all fallen through the cracks I feel.

I am also horrified that cancer patients experience this, I never knew. My heart goes out to them for all they have to suffer through.

As much as I want the no med approach to work, I think that is a big big risk to take. Much worse of a risk than that of the drug side effects.

[dcdream]

I share all your feelings and emotions. I, too, am like you with diet, exercise, normal weight, etc. At 68, I am still refusing meds since they do not remodel bone but rather create fake brittle bone that the body cannot remove, hence more fractures as one ages. I watched my mom do the entire meds protocol only to experience fractures and broken bones as she aged into her 80's. I'm disappointed that the drug manufacturers aren't bothering to research meds that are safer and more effective. I assume, as meds are now being pushed on men over 70 that either this will increase more research or just promote heavier existing meds. That's similar to how statins progressed in the USA. That said, this is a personal journey, one of risks that the individual has to determine is acceptable for them. Bone health consists of many components besides density and there are women with osteoporosis who do not go on to fracture, etc. It's a gamble women face. Best of luck with your meds and let us know how it goes. Maybe the side effects will be minimal for you, like most.

[Hidden in reply to dcdream]

Hi dcdream,

What you say about the meds not remodeling bone is correct for Fosamax. However, it is my understanding the the brittle bone issue occurs after long term use. For this reason, there are drug holidays.

My numbers are lower. It is the hope of me and my doctor that about 12-15 months of medicine we will go off and monitor from there. That and some life style changes may be able to hold me off a few years before seeing another decline.

My sister's son's ex wife's mother when in her early 50's had a femoral thigh fracture (more of a break) when she slipped one ice leaving from work to her car. No one called it for her until her other thigh did the same. She too, heathy, good weight as well as getting up at 4am each day to go to gym for her entire adult life. Non smoker.

There is one injection drug that actually makes new bone rather than slowing shed of existing bone. I don't know much about it but that it does exist. But I understand if that medication is stopped they need to continue with another and it must be stopped after an amount of time.

I am most concerned about the Jaw issue on these drugs. I aim to do my best with the aid of Fosamax over the next year to get myself to a place where I can hold stable a few years with no drugs.

Any route taken is a gamble. That uncertainty is so stressful and that stress increases cortisol which further worsens the condition. I hope we can do better for the girls yet to become women.

[dcdream in reply to Hidden]

I asked both my internal med and endocrinologist if the body can remove the fake bone to make way for new bone (the bone remodeling process) when one does the drug holiday. They both hesitated and one of them actually said, they weren't certain but maybe not. Asking friends who did do fosamax on the drug holiday protocol which my internal med doctor suggested I do, said that worked for the first decade but then they started to decline and find it wasn't working as well. One of them went on Prolia since fosamax no longer was working to keep her scores down. I'm not crazy about Prolia either. You seem to have a handle on your options and protocol which is also a good thing. I always feel, once you make a decision that's you're comfortable with, that's half the battle gone. That said, I also began a meditation program to deal with stress, am ramping up my healthy eating, am currently seeing a spine specialist for a strength training program and will continue to follow the research and hopefully something new will come up meds wise. Best of luck with your treatment plan and try not to stress too much.

[Hidden in reply to dcdream]

Hi dcdream,

I ask you and all others opting away from the meds to keep us updated every year on your progress. We cannot learn if the data is not provided. Please contribute to the cause and update your progress during your journey. Best of luck to you.

[dcdream in reply to Hidden]

I plan to do so and please also share your success or issues with being on meds. Best wishes for a successful journey.

[Watercolorgirl]

Get on the bone meds is my advice. And exercise and eat healthy too calcium and vitamin d as well.