Prolia treatment for osteoporosis: What is your experience?

@feather and @cherriann

I agree with both of you 100%. Women are getting smarter about this whole subject and not blindly accepting what healthcare professionals tell us all the time. There has to be a more holistic approach from providers and it behoves us to be more informed about everything...both genders included.

FL Mary

A good source of information is Pub Med....free to set up an account + “alerts,” so you will be aware of the most recent articles (from medical journals) on the particular subjects of interest to you.
Alerts can be set up for specific meds, “fracture prevention,” “osteoporosis,” etc.
View articles in order by date - most recent first - and customize settings for arrival in your e-mail box as often as you want them, e.g., weekly.
Yes, it’s easier to rely on your doctors for information, but if you put the effort into reading the latest peer-reviewed studies - at least, the abstracts or summaries - you are less likely to regret the choices you make going forward.

@mslw
That's a great source of info...just did a brief tutorial.
Thanks! So much better than Googling.

FL Mary

You’re welcome....glad you are using it!
...much better than Googling because you’re getting medical journal articles, the source of your doctors’ information, instead of less reliable sources.
Even if full text is not available on Pub Med, there’s an abstract + full text can be requested through your local public library - which probably has statewide interloan access - or a medical library. There’s also an easy way to pay for full text through Pub Med when it’s not available.

@cherriann this is such a difficult and confusing situation. I do know people who have taken these drugs and had very good success with them, but there are the opposite also.
I am at the beginning of this journey, recently diagnosed with osteoporosis and waiting for an appointment with an endocrinologist. If a person does not use these drugs what are the other options besides taking calcium and vitamins D, and exercises? I start a short series of PT sessions next week to learn the best exercises that help with this.
JK

I am 65, female, and about to receive my fourth Prolia injection. I am afraid of drugs and have a track record of reacting to meds. I know there are many papers in medical journals outlining negative effects of Prolia and other osteoporosis drugs. However unlike the doctors who specialize in this area who have four years of medical school plus another 4-6 years of residency and some who continue on doing research in this area, how can we ever really know what the doctors know? My own endocrinologist heads up the osteoporosis department in a major hospital in a large city. She has led the research in studying astronauts and weightlessness in space and bone loss. These doctors see the whole picture, have read many more papers than we ever will, have seen so many patients over many years. I do feel that my endocrinologist has my best interests at heart. And as someone who is scared of drugs, I made a decision to trust my doctor who seems quite dedicated to her patients.
Exercise, calcium, vit d was never going to "cure" my osteoporosis. My bone density has increased on Prolia and I worry a little less about fracturing. Science is always evolving and five years from now there may be something new to try.

@sue225. I too avoid drugs whenever possible but recently it has become less and less possible to do so. Thank you for your post, it is somewhat reassuring if my endo does suggest prolia. When you started on prolia how bad was your bone density? I know there only a couple of drugs that increase density, most help to maintain it.
JK

@contentandwell
Hi,
This is indeed a complex and confusing situation but everyone has to decide for themselves and trust their instinct. What I am doing currently for my osteoporosis is taking a daily formula of vitamin d3+K2 and a bone and joint formula ...both powders dissolved in water . I am avoiding as many foods with oxalates as I can since I recently found out that they tend to inhibit the absorption of minerals like calcium. I have stopped eating spinach and some other greens which I had been eating almost daily for years for eye health.

Diet and lifestyle are so important for bone health. I do have 3 gym classes a week and have upped my walking which is a great weight bearing exercise. Since I don’t smoke or have any organic medical problems ,have great BP and weight and no fractures, I have decided I am a good candidate for not taking drugs. I did take Boniva and Actonel about 15 years ago with minimal improvement. This is purely a personal decision and based on my holistic approach to good health.

It’s been stated before but do your research, asses your overall health and lifestyle and listen to what your doctor has to say and then make a decision. My point is not to blindly trust what any doctor says before you do make a decision. If anyone decides to continue drugs , I would also urge them to include healthy activities and watch their food intake because you can’t always rely solely on drugs.

FL Mary

I dont have my report in front of me but the numbers were over -3 for both the hip and spine and there had been a steady decline for several years with a big decline over an 18 month period. I also am petite and small-boned. In addition, my celiac disease was mis-diagnosed for many years. I was diagnosed as a celiac in my early 20's and probably had celiac disease from day one. So, there were many years of malabsorption of nutrients, (my ability to achieve a high peak bone density was compromised).

@imallears I am restricted in using things like powders you mention due to being post-transplant. Many of those things are not very well regulated so are not recommended.
I also go to the gym three days a week, and do three days a week in the water. I was thinking the water may not be much help but I have been noticing that the resistance of the water really does have an impact if you are vigorous, which I am. I do a water aerobics class for an hour and then about another half hour of water jogging. My arms and legs are definitely tired when I am done. Exercise is of course recommended but overall there have not been many studies proving its efficacy, particularly walking. I was reading a book that was recommended to my sister by her doctor, "Strong Women Strong Bones" by Miriam E. Nelson. In it, she speaks of a test group of walkers vs non-walkers and there was no improvement in bone strength with the walkers which is very surprising I think. Of course walking is very good for other things too so even if it is little help for osteoporosis it does help with overall health.
I will listen to the doctor and then do some additional research. My PCP knows that I do not easily take recommendations for drugs. He is not a big advocate of many drugs but right now he is trying to get me to take BP medication. I have given in on the cholesterol medication because my endocrinologist pushed me on that and I trust him very much. I will be seeing a different endocrinologist for my osteoporosis probably and unfortunately, that appointment is not until January. My PCP does have me on vitamin D and I also take calcium that has a little vitamin D in it.

@sue225 It's so ironic that being petite is more of a risk! I was much heavier and all of that extra weight actually helps to keep bones strong. Now I am not very overweight at all so that is an added risk along with taking prednisone, and also taking omeprazole. Omeprazole can cause the calcium to not be as easily absorbed I have read.
JK