Prolia For Osteoporosis - Jane's Story

When Jane was diagnosed with osteoporosis, her physician recommended she take Prolia (Denosumab). Unfortunately, the management of her Prolia was not as good as it should have been and Jane experienced a number of problems. Here is her Prolia management story.

There are two major lessons from her experience:

1./ You should not assume that exercises you find online labelled for "osteoporosis" or for "seniors" are safe for you to do. This applies to all social media sources, even those presented by Physical Therapists. Individuals with osteoporosis need an exercise program targeted at their fracture risk; this is particularly true for individuals with compression fractures.

2./ If you are receiving Prolia injections, it is due to the fact that you are at an elevated risk of fracture. I have many clients who need to be on Prolia because their bone density and bone quality is so poor that a fall could lead to a catastrophic fracture. The problem is not the medication. Prolia is very effective. Problems occur when the administration of the drug is not managed as well as it should be. This is particularly true when it comes to the termination of the use of Prolia.

Here is Jane's story.

RECOMMENDED READINGS
How to Discontinue Prolia

How Long Can You Take Prolia Injections

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Medical Disclaimer
All the information, content, and material presented in this video is for informational purposes only. It is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider.

[margaretmartinpt]

One of my clients, Jane, shares her story about how the management of her Prolia went wrong. When Jane was diagnosed with osteoporosis, her physician recommended she take Prolia (Denosumab). Unfortunately, the management of her Prolia was not as good as it should have been and Jane experienced a number of problems. Here is her Prolia management story.

There are two major lessons from her experience:

1./ You should not assume that exercises you find online labelled for "osteoporosis" or for "seniors" are safe for you to do. This applies to all social media sources, even those presented by Physical Therapists. Individuals with osteoporosis need an exercise program targeted at their fracture risk; this is particularly true for individuals with compression fractures.

2./ If you are receiving Prolia injections, it is due to the fact that you are at an elevated risk of fracture. I have many clients who need to be on Prolia because their bone density and bone quality is so poor that a fall could lead to a catastrophic fracture. The problem is not the medication. Prolia is very effective. Problems occur when the administration of the drug is not managed as well as it should be. This is particularly true when it comes to the termination of the use of Prolia.

[vorkosigrrl]

The ignorance of health professionals about osteoporosis is astonishing to me. I’ve had physical therapists and doctors who know nothing about the types of motion that are a danger for those who have osteoporosis. Why are they so ignorant?

Margaret is one of the few I trust. Thank you for all you do.

[Elena-kcvw]

Thank you to the brave and generous Jane for sharing, and to Margaret for your efforts in keeping us informed and safe.

[Maja-bz]

Dear Margaret,
thank you so much for sharing Jane's story. It is very important to raise the awareness about the danger of Prolia discontinuation. I read many scientific paper and clinical research on this topic, however hearing personal story have much higher value.
My experience is similar to Jane’s. Due to problem with dental implant endocrinologist decided to pause Prolia for 1 year, without the protection of bisphosphonates. During this period, I lost 20% of the bone, T-score of spine dropped from -3.7 to -5.3.
I was diagnosed with osteoporosis at age of 50, I did not have any fracture before starting with Prolia although T-score was very low, spine -4.0, hip -3.2. Now I have multiple vertebra fractures due to drug treatment. There are days I think that this is just a bad dream, and I will wake up eventually….. How things could get so wrong?
The problem with doctors is they do not share all the important information with patients. They prescribe medicines and when things go wrong, then is “ups….”, “bead luck”. For them we are just statistic, but their mistakes can make our life miserable.
Prolia is great drug and could be useful to many patients, with more benefit then side-effects, however problems might occur when it comes to the termination of the use, if it is not carefully managed, like Margaret said.
Regards from Croatia,
Maja

[susank]

I belong to a recrecreation center that offers a class for seniors called Active Aging. Without exception, each class involves twisting/rotating the trunk of the body, in several different exercises. I'm a retired nurse, diagnosed with Osteoporosis, and I know this is wrong! If I bring it to anyone's (management) attention, they put the responsibility on the participant rather than the instructor. You and I both know many people do not know/understand the dangers of twisting/torquing our spines. I just march in place when they do these, and pray that these (mostly) ladies will find out the truth sooner rather than later!

[nannalambert]

I learn more from Ms. Margaret than from my own doctor. Thank you so much.

[dianesheard]

Thanks for sharing Jane. I have been taking Prolia for 5 years now and luckily have not had any problems so far. My dentist is well aware of the implications of taking this medication and stresses the need for regular check ups to avoid any major dental problems.I exercise carefully and hardly ever miss a day of walking.🤞

[pammini]

Margaret, Thank you for all of your videos on Prolia. My Endocrinologist informed me initially of need for one Bisphosphonate treatment following discontinuance of prolia, but she did not describe the problems and mechanisms of long term usage and what is actually happening to the bones. I've been on Prolia for 4 years, last dose in Oct 24' and I will not take another dose for sure. I will of course work with my doc and take the follow on treatment once I discontinue. Thanks for all the detailed and researched content you provide!

[MD-wnxh]

Jane, thank you so much for sharing! Margaret, thank you for allowing Jane to share. This is valuable information.

[daisygurl]

I’m so sorry for what you have gone through, Jane. I appreciate you sharing your story. I am still resisting meds, as I do not think there are any good options. Peace and blessings…

[angelaearl]

I was diagnosed with Osteoporosis in 2019, by then I had two vertebral compression fractures due to poor medical advice. Finding Margaret was a life saver as I didn't know where to start to learn about this condition, so thank you for all the advice and information you make available.
I now have a good Rheumatologist and safe exercise programme. I have been on Prolia for 5 yrs, so far so good with minimal side effects.

[susiefloosie]

I took Prolia only one time and it seemed like every joint including my jaw hurt. Worst thing was that my doctor's PA told me I had osteoporosis before I took this med....and I didn't. I didn't find this out until months after I stopped taking it. I did a lot of research and was told you have to relay with another drug after stopping Prolia. No one told me. Since then, I have had so many issues...back pain, knee pain, a torn tendon, ankles, etc. I looked further into Prolia and heard so many people tell their awful stories about that medication. Not one doctor (and I went to many) even knew what I was talking about.

Im a young 60 year old who has just been diagnosed with Osteoporosis. I’m very active with hiking, backpacking, kayaking, etc. My Orthopedic doctor said I needed to get a Prolia injection twice a year. I’m scared to death to do this! So many side effects and warnings. I’m just at a loss on what to do. I feel I have many good years of being active left in me. It’s what fills my soul. So, what do I do? I’ve looked up exercises, weight bearing it says is good, Thi chi is good. Twisting and certain yoga poses are not good. I just need direction and all my doctor said to me was if, I didn’t get the injection and I fall and break a hip, I could die. I need help. I want to do whatever is best for my body and my future.

[elizabethbrouse]

I was diagnosed with osteoporosis ( years of osteopenia ), and so my primary care physician told me I could just stop Prolia, as it wouldn’t help
me any more. I did stop, and then read in a Mayo book on osteoporosis that an abrupt stop in Prolia will result in an abrupt increase in bone loss. I then had 2 lumbar compression fractures, with resulting complications of scoliosis, stenosis, numbness right foot and constant left lower leg pain. Mayo recommended Reclast for me. I have had 2 doses. I am following Margaret and trying to rebuild my life.

[glindathegoodishwitch]

Thank you so much for sharing your story, Jane. It's certainly thoughtful and generous of you and underlines so much of what I have come to learn about osteo, exercise and medication. Glad you are in a better place now, but sorry for your fractures.
I have to ask, at around 2:50, the exercise you describe sounds like a sit-up...if so, that truly highlights and proves that exercises labeled osteo-safe can be 100% inaccurate *and* dangerous, as per Margaret's well-emphasized first point...well taken.
Sorry if I got that description wrong and you were not doing a sit-up.
Best to you.
Thanks to you, Margaret for all you do and trying to keep the osteo community well-informed and safe. I have followed you for years, online and using your book as well.

Edited to add: Your rheum's crucial lack of information is horrific. I also believe she is responsible for your fractures, but I'll just let that drop right here. My wish would be that you took that further.
Just to let you know, I've had similar experiences with rheums, not re: medication, as I have never taken it, but their lack of any path other than osteo meds. They barely wish to listen to you, they want only to scare you into taking medication. Not saying it doesn't work well for some. Certainly, I know many who take it and they say they haven't fractured, yet I have noticed that they all have curvature of the spine. So I don't really understand that.

[ruthr]

Thank you so much for sharing your story. Wishing you healing.

[qtrolazyg]

I am on prolia and knew that I could not stop without adverse impacts. I started receiving prolia injections at about the same time as Jane and have done so without interruption. I think all of the points Jane made are very important to know and appreciate her willingness to talk about it. Thank you both

[paulettelong]

Margaret, your advice is the place to go for people with osteoporosis who are looking for guidance with exercise and physical therapy. Also, I had an unexpected thigh fracture when on Prolia. There were other factors that made me more vulnerable, however. After it happened, I had expert care from a respected endocrinologist. I stopped Prolia and was put on the bone building med Forteo. It worked for me and my DEXA scans greatly improved. This is not for everyone, however. The point Jane made about stopping Prolia without a replacement needs to be heeded. For me, an endocrinologist was the help I needed. Be informed on every level and make sure the source of your information is true and if something doesn't seem right trust your instinct.

[luciatornel]

Thank you so much Jane for sharing your story, sorry that you went through all of that pain. Thanks, Margaret for this informative video. I was diagnosed with osteoporosis in 2019 and I've been with Prolia since then, 5 years now. I read about the rebound effect not long ago and I was terrified. I reached my rheumatologist and he told me that nothing like that would happen to me because he would put me on Prolia vacation for one year and then come back with Prolia. But now after hearing Jane's story, I'm really concerned. I live in Canada and waiting for another specialist is too long. So I will reach my rheumatologist again to talk about another drug after stopping taking Prolia. Thank you so much, and good luck to us all!

[sandysyoutube]

Why did you, Jane, go back on Prolia when you had such problems.