Prolia Gone Wrong: Jane's Problems with Prolia

[@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.

[@Maja-b5z]

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

[@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

[@margaretmartinpt]

Thank you for sharing your journey and experience with Prolia. I am sure many readers/followers will benefit.

[@NancyPriest]

Thank you. I have just started following you and I learned from you to absolutely avoid flexion. I took alendronate for about 6 weeks and stopped it. At the same time I kept reading and studying about osteoporosis. I am 77 years old and was diagnosed with osteoporosis last December. I have made my balance my priority. I am also following Dr Fishman's yoga program. You have said or written to be very careful about twisting. Since I read that I have been very careful about the twisting postures. I have so much respect for your knowledge and your hard work. Please let Jane know how grateful I am that she shared her story. I will keep her in my thoughts and prayers.

[@margaretmartinpt]

Will do. Thank you for sharing your story Nancy.

[@Elena-kc3vw]

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

[@margaretmartinpt]

You are most welcome.

[@pammini9893]

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!

[@margaretmartinpt]

Thank you. Good luck with your journey. I encourage you to read my post here: melioguide.com/medications/how-to-discontinue-prolia/

[@nannalambert3980]

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

[@peggyharris3815]

After listening to this...I needed 30 minutes of silence just to recover from the feeling of absolute despair and frustration I felt. Thankyou for warning about the wrong exercise and questionable doctors.

[@margaretmartinpt]

Thank you.

[@janicestone2308]

Thank you . I decided not to take the medications about a year ago . I have read about them . I’m a retired nurse and don’t think they are safe . My rheumatologist is not happy with me . I have your book and also try to be careful . I’ve joined a gym and am working on strengthening .

[@margaretmartinpt]

Hi Janice, Thank you for sharing your story. As you know everyone's bone density and quality are unique to them. Some have little choice but to take a pharmaceutical. I am glad your bone health was good enough to allow you to make the decision that felt right for you. Keep up the safe exercises.

[@Evelyn-h5q]

After a hip fracture during the follow up assessment 1 month after leaving the hospital the doctor who interviewed me insisted I take Prolia although I scheduled for dental work within the year and my osteopenia was not advanced. When I declined he called my GP and made a fuss. He was rude, arrogant and overbearing. I had enough on my plate making a considered decision and my GP isn't on top of all the research. I'm still with my gp and more or less manage things on my own with careful attention to the right kind of exercise, etc. Bullying has no place in medicine.

[@SusanNemmers]

Thank you for this wonderful information. I too have not taken any medicine yet for my osteoporosis, but I do walk every day and was considering getting a rowing machine… Would love your advice on using that sort of exercise for osteoporosis

[@MD-wn7xh]

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

[@margaretmartinpt]

Glad it was helpful!

[@daisygurl3601]

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…

[@Evelyn-h5q]

Tx for your comment, I am in the same position and taking great care to focus on the right movements during exercise and daily life as well.

[@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.

[@margaretmartinpt]

Thank you for sharing your story and for your kind praises. So glad you are in good hands.

[@susank5959]

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!

[@janicestone2308]

@@susank5959 I also take a exercise balance class and I have to be very careful since I have 2 compression fractures

[@dianesheard9309]

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.🤞

[@glindathegoodishwitch9244]

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.

[@margaretmartinpt]

You are correct that the exercise Jane described at around 2:50 was a sit-up. She was following the advice of a popular KZbin channel specifically targetted at senior on how to strengthen your core. Beware. There are many channels that simply want your clicks and they will post anything to get them.

[@glindathegoodishwitch9244]

Many thanks, Margaret. It's getting harder and harder to trust anything online. Appreciate.

[@luciatornel531]

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!

[@margaretmartinpt]

It sounds like your rheumatologist had a bad day. He must have confused you with a client on bisphosphonates. What he said to you is a safe practice if your on bisphosphonates - sometimes even longer "drug holidays" if your bone density is maintained. I am glad that Jane's story will ensure that you do not have the same fate. Keep well.

[@ruthr77]

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

[@margaretmartinpt]

Thank you

[@klotho1234]

After being invited to be on your program and spending a lot of time putting together a talk and getting it filmed, you decided not to put in on your page. I was disappointed then, and now we are seeing what I was trying to prevent! Susan Ott, MD

[@AuditioningByHeart]

I wanna see this!

[@chriswalker7972]

Absolutely read up. Sorry Jane had such a difficult journey but thankyou so much for sharing this.

[@paulettelong6040]

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.

[@MamaPalma]

Thank you SO MUCH for sharing.

[@mitchell9353]

I was told by my Rheumatologist not to get my scheduled dose of of Prolia because I needed two extractions, knowing it could be 8 months or longer. No alternative drug was offered. I had read this is dangerous because of fracture risk so i saw another doctor who said fracture risk outweighs jaw necrosis. She perscribed Reclast yearly infusions. I did have an issue with the bone not healing after extractions and saw an oral surgeon who would not have cleared me for the Reclast but it was already done. So after a procedure and lots of antibiotics I'm waiting for the area to heal and will get a soft denture - no implants. Seems theres no clear answers.

[@margaretmartinpt]

Sorry you had to go through so much. It is difficult even among professionals there are many "opinions" as to the best approach. Whenever possible it is best to get 2 or three opinions before dental work is started but that is not always possible. I wish you rapid healing.

[@maryfox7440]

Very important information regarding Prolia.. Thank you

[@margaretmartinpt]

My pleasure

[@JanaWestMusic]

Thank you!

[@margaretmartinpt]

You're welcome!

[@lauriegauthier4445]

Wow! Thanks so much for sharing your story Jane! That’s horrible!!!

[@margaretmartinpt]

You are welcome

[@AJJ-v7l]

After having two injections of Prolia in 2023 that I was told I needed because of osteopenia, I learned about the Prolia Rebound Effect from a Facebook group and decided to refuse a third injection. Instead, I persuaded my orthopedics nurse practitioner to prescribe a bisphosphonate that, studies say, will lessen the risk of spontaneous vertebral fractures after stopping Prolia. I've taken four monthly doses of Boniva and so far, so good. By the way, the Rebound Effect can cause fractures from 7 to 42 months after the last injection of Prolia. Good luck to us all!

[@margaretmartinpt]

Thank you for sharing your story. It is common for the follow-up to be an infusion of bisphosphonate, which would be equivalent to a year's worth or twelve Boniva doses. Take care.

[@Aussiedreamer-pz5uw]

Thank you , I too have had two injections and won’t be having anymore 😒

[@farrahfrench7690]

1)They should have started you on another medication after discontinuing Prollia! 2) my physical therapist was a stick in the mud who would call me from across the room saying do flexion exercises and laughed when I said I won’t! I hope he gets a dose of his own medicine a thousand fold 🤬

[@elizabethbrouse5191]

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.

[@margaretmartinpt]

So sorry to read your story Elizabeth. I wish I had been able to safe you from everything you have endured. Stay strong.

[@dutchessoftruth5435]

I have been on Prolia for 2 years now. So far, so good. I had osteoporosis in my back and now its downgraded to osteopenia.

[@margaretmartinpt]

Thank you for sharing.

[@2stayfree11]

This is why I began more appropriate exercise program and low intensity vibration device instead of drugs for osteoporosis. And yes, doctors don't believe that exercise can improve bone health.

[@eh4232]

Can you share with us what LIV device you use, please?

[@enidhopkins516]

When I went on prolia 4 years ago I was aware of the dental restrictions. Also about going off problems. I went on prolia (my last hope). I was diagnosed osteoporosis before they had. Any medicines for it. Why did this lady go right to prolia? There are several medicines kinder to you and safer

[@cherylsack2466]

Thank you. Im on Prolia and have a gained information from this video. Honestly I'm afraid

[@margaretmartinpt]

The objective that both Jane and I had in doing the interview was not to create fear but rather to raise awareness. So that others do not suffer the same fate. You need not be afraid. You now have the information you need to stay safe. Take care.

[@louisazimmermann212]

Dear Margaret, i am new and just start following your videos. I was diagnosed a year ago with severe osteopirosis, in my spine and hips. The doctor told me that i must ask my health provider for a yearly Aclasta ivy. It will help to make my bones stronger. I did the procedure in Febr 2024 the pain in my joints, wrists and lower back is now even worse. What is your opinion towards Aclasta? Thank you so much. Im am 68years old.

[@margaretmartinpt]

Hi Louisa, The symptoms you describe are a well known side effect of Aclasta. I am sorry that you have to suffer with this pain. It sounds like you need to seek the care of a new doctor who can provide guidance that does not include another injection of Aclasta. Try to keep moving, doing safe exercises that support your body. If you do not have my book Exercise for Better Bones, it would be a safe place to start. Your young enough to rebuild. All the best.

[@sandysyoutube3810]

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

[@HolleyGould]

Thank you truly.

[@margaretmartinpt]

My pleasure.

[@pamelag.00]

For any older folks who aren’t particularly KZbin savvy. There are content creators out there (often using AI) who are not professionals or at best don’t have the knowledge necessary to do osteoporosis videos. Particularly exercise. I see stock clips of old people bending & touching toes. I posted that this is a “no go” & the person posted “Go slow & work up to it!” Well I knew from Margaret Martin’s book not to do this at all!

[@GailFeltman]

Thank You for sharing! ❤️❤️🙏🏻🙏🏻

[@margaretmartinpt]

You are welcome

[@martcoleman]

Margaret Martin, could you please post links to videos that explain which exercises should be avoided if we have osteoporosis? Thank you!

[@margaretmartinpt]

If you enter youtubemargaretmartinexercises to avoid you will get directed to most of the videos on the topic. My book is also a good starting point to learn from.

[@selma5885]

Was it the exercise or coming off the prolia that caused the fracture?

[@chorushong-kong3981]

Thank you!

[@margaretmartinpt]

You are welcome.

[@enidhopkins516]

I was told if you go off prolia you’ll break your back. In other words you can’t go off prolia for any reason

[@mariankaskel1256]

It would be helpful to know specifically what types of exercises to avoid when taking medication for osteoporosis. Do these warnings apply for biophosphonates such as Fosamax?

[@joannelivengood7914]

There are exercises that are contraindicated for those with osteoporosis, not just for those on osteoporosis medications. The exercises to avoid are those where you flex forward and twist and extremes of extension. Margaret Martin's site is fantastic to find how to perform daily activities and to develop a safe exercise program for those with osteoporosis.

[@kaysmith4558]

So what exercises should we do? I was told to do resistance training like lift weights, is that too much.

[@joannelivengood7914]

@@kaysmith4558 You need to do exercises for posture, balance, impact and strength training. Where you would start with an osteoporosis exercise program will depending on your physical condition and knowledge of how to safely exercise. Review Margaret Martin's KZbin channel. She has great videos on where you should start with a program and offers a variety of exercises depending on your level and ability. It would be best to start in person with a PT that has knowledge on how to treat patients with osteoporosis. Margaret also does virtual consults.

[@lindasexson1483]

​@kaysmith4558 weight training is good as long as you aren't bending and twisting.

[@shazben9822]

I have taken myself if of alendronic acid after I think being on them about 7/8 month Iv read so many terrible things about these drug I’m going to take my chances Zoldronate acid has been suggest one a yr for 3 yrs but then what ? Am I cured I don’t think so My thinking is if I don’t take them there not going to cause me any fractures in my spine or my jaw my teeth need work doing on the m so this again scares me I don’t do much excersise because I have severe emphysema and struggle to breath The pain in my back if awful I had two severe wedge fractfracture t 7/7 that weren’t picked upI wax misdiagnosed and told my back pain was all muscular and told to carry on the muscles would heal Well they didn’t but my spine wax fracture that bad it cause kyphosis I can’t sit for more than 10 min I have to get flattish on my back , but to flat I can’t breath so have started to sleep on my side and treat the pain with whit tigger balm It’s not a miracle but sure gives me some relief if only for short periods And helps me to sleep more soundly So who are we supposed to listen to ? Iv reachearced that much now I’m spinning I’m trying to keep the anxiety down because I can’t breath and pain on top is just a nightmare Iv had enough to be honest If I were an animal I would of been put out of my misery but not a dog and our doctors are not exactly helping I

[@diananava4529]

How long was Jane on Prolia?