Success with Prolia?

I completely agree with your sentiment, but I too have found I need to do my own research to understand and help guide my own treatment. Osteoporosis is very complicated. A lot goes into getting us there, and a lot needs to be addressed to get us in a better place going foward. I too am a retired medical professional and thankfully that helps in my understanding of information. I do enjoy learning and understanding about medical topics or I wouldn’t have become an Occupational Therapist, however it has sort of taken over my life recently. Last August I fractured L 1 going from sit to stand from a very unsupported couch. Flexing my trunk foward got me because I was in a bad, low position to start and didn’t know anything about keeping my back in an extended, aligned position. My fall was spent recovering , saw my first endocrinologist in December who recommended Forteo to start with and Reclast as the follow up drug. When I asked them to get specific about actual weight bearing exercises they’d recommend I realized they had little to say. WOW, I was struck!! As an OT I have a background in exercise and have been a very active, athletic person my whole life. Prior to my fracture had been doing yoga 2-3x/wk, walking about 2-3 miles /day, hadn’t yet returned to the gym after the whole CoVID thing, and played tennis in the spring. The response was no more yoga, stop tennis, if walking, it should be a at quick pace. But, thankfully they mentioned their was a PT on YouTube, Margaret Martin PT that could provide some information. That’s where I started and from their I’ve taken a deep dive. My days revolve around exercise and study of osteoporosis. I participated in the “More Natural Approaches to Bone Health and Osteoporosis 2.0 Symposium “, hosted by Margie Bissinger at the beginning of April. I can’t say enough about how much information was shared throughout that solid 7 days of experts in the field. Before that I learned about the Marodyne, a LIV -Low Intensity Vibration platform -created by Clint Rubin and am awaiting its arrival. Currently , I am making my way through the book, Great Bones. What I’m grappling with now is the next step. Finding a local Functional or Integrative physician that will have the understanding to assist me in getting the testing that should be done before one decides their course of action. I’d like to avoid taking meds but because I’ve fractured I’m pretty sure that will be everyone’s recommendation at least for a short time. My dilemma is, for the most part, if you start with meds you’ll be on one or another with some possible holidays, for life. In the meantime my T scores could be getting worse but I’m committed to do all I can do naturally and feel good about the decision when I make it to go on one of those drugs. Hopefully what I’m doing for now will keep me safe, meaning fracture free till I get there.
Well, that was a really long winded response!!

@rjd Wishing you the very best in your journey as well!!
And hoping retirement can soon begin to be more what you expected !!

Good evening @mamgma and welcome to the Connect forum. Thank you for responding to another member. Sharing is how we build knowledge and that in itself is powerful. It is wonderful to note that you have no side effects with the Prolia injections.

As a mentor, I am able to read many responses to osteoporosis medications. It can become quite complex with so many options. We are all quite unique and our bodies handle medications differently. I can see how endocrinologists anxiously wait for patient responses. And on that note, I would like to ask you about your statement, "Prolia produces bone.....". My understanding of the purpose of Prolia is not to build bone but to protect the bone that has been created with the help of other medications like Forteo, Tymlos, and Evenity.

Would you help me understand your statement?

And may you be safe, protected, and free of inner and outer harm.
Chris

Perhaps long winded but extremely informative. I have nothing but total respect and admiration for your devotion to dealing with your condition. WOW....

If you do not mind, could you please share a couple of things? Your age. Your DEXA scores.

Perhaps if my profession had been related to medicine, or even to science, it would be less challenging and time consuming to research, review, and comprehend osteo related info. Then adding into that mix, the sorting out of all the fringe and outlier stuff on the Web.

It is why I appreciate MayoConnect and its effort at monitoring postings and occasional corrections. Have you discovered Boston Osteo on UTube? Not a deep dive but nonetheless helpful....at least for me...and even though my learning preference is reading, not videos.

I am reluctant about taking meds, but not vaccines, for just about any condition. Realize, however and unfortunately, that is what medical treatment in the USA is all about these days.

I too have been a tennis player most of my adult life. I still love it at the age of seventy three; the quality of my life will shrink considerably if I had to give it up. Because I had a rather miraculous result, in Dexa terms, after only two Prolia shots, I remain on the court and happy.

I hope you will share what you learn as you travel your information road.

Chris. I am struck by all the complaints about side effects of various osteo meds. I personally have had none on osteo meds but have had problems with other meds....and I take as few as possible.

Is there anything written about these side effects being related to interactions with meds for other conditions that a person might be taking?

Thanx for all that you do on this forum.

to @rdj ... Sure I'll share my age and DEXA Scores. I'm 65 and my most recent DEXA was 7/2021, so I'm due again soon and right after that having an endo appt. Wanting to get my ducks in a row before all of that if possible.
DEXA- 7/2021
Spine -3.3
L hip -1.2
L Femoral Neck -1.1
I should tell you that 2 of those values had improved significantly from my 2020 DEXA.(spine-3.6, L hip,-1.1, L femoral neck -1.5) which is when I began taking Algae Cal and Stronium Boost. So thought I was in a way better place than I had been, but suffered an L1 fracture Aug'22. I have since given up Stronium as I need to settle in my mind concerning that issue where much conflicting info is out there.
Hope that helps !! And thank you for the Boston Osteo tip, I'll certainly check it out! And its taken a while to recover and get back on my feet, but I intend to go hit the ball against a backboard real soon to see what it feels like while keeping my position in mind.

My Bone Density has improved while using Prolia for 1 1/2 years however, I have had issues with a bad UTI, bursitis in both hips and a tendon tear ( not sure if it is related). Most recently I have had low back pain and a popping in the low back. I think I will ask to go back to Reclast. It is concerning that you can not stop Prolia without transitioning to another bone drug due to vertebrae fractures.

What was the treatment for your vertebral fracture?

I can see why you were hopeful due to significant spine improvement score. Same Dexa machine? Expect your upcoming Dexa scan might be revealing.

I do not think I would be brave enough to try tennis backboard hitting after a recent fracture like yours, at least not before an upcoming scan. You must be feeling good.

One of my problems with susceptibility to osteo disease is that I am told I make absolutely no estrogen. Not just post-menopausal reduction or the little bit produced in fatty tissue but absolutely None due to being one of the very few, very fortunate ovarian cancer survivors for now over 10 years. Understand that estrogen might be connected to healthy bones but with my cancer history I am told in no uncertain terms that I cannot even consider HRT.

Osteopenia was first noted 4 years after completing my cancer treatment and went on alendronate with increased calcium in large part due to my mother's osteo dx resulting in 2 hip breaks after minor falls at age 73 (my current age.) She never learned to walk again because of dementia/alzeimers.

Did not want to go on osteo meds but I was already doing healthy diet and exercise to make sure my immune system had as much artillery as possible to ward off cancer recurrence. Wish I had known then about trace elements that might have been helpful with osteo.

Sending good juju your way in connection with upcoming scan.

Unfortunately, I cannot find where I read that bone growth during Prolia use is not brittle like the other drugs. It prevents the formation of osteoclasts. I am a bit alarmed by what I have read about discontinuation. I also am currently working on a diagnosis of lumbar spinal stenosis, which has me worried about Prolia as well.

@mamga who told you that only Prolia produces bones that are not brittle? To my knowledge, that is true of Forteo and Tymlos but not antiresorptives like Prolia or bisphosphonates and to some degree Evenity,

Also, you have to be very careful when you stop Prolia to go on a bisphosphonate or you rapidly lose bone and risk of spinal fracture goes up. McCormick's new book Great Bones has a lot of info on how to get the timing right for the switch to a bisphosphonate.