I am 64 and have had Ostroporosis for 10 years. I have resisted drugs until 2 1/2 -3 years ago , when after doctors pushing me towards Prolia i decided to give it a go.
I had no ill effects, but with limited BMD gains and worrying about fact i had to come off in 5-10 years when i would be older, i decided to cease injections.
Bam- after 6 months- multiple vertebral fragility fractures! I have gone from being extremely active to being ( what feels like) a disabled geriatric.
Does this time pass with massive bone break down? Surely the answer is not to go back on drug forever and hope for best? Can i get back to normal “pre- prolia” bone formation and loss??
I want to nurse my baby grandchildren again, play with the toddlers, walk, sleep, garden, camp,
Amy thoughts on future progress i woukd appreciate thank you
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Katy12
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Hi Katy, I am sorry to read your posting. It is quite common knowledge that one should not stop prolia/denosumab without taking another op drug or fractures are likely to occur. I am surprised and saddened that presumably no one gave you this information when you stopped the injections.
This is lifted from the ROS (Royal Osteoporosis Society's information on stopping Prolia/Denosumab: theros.org.uk/information-a...
"Ending your treatment
When you come to the end of your treatment, you should start taking another osteoporosis treatment straight away.
This is because stopping denosumab causes a sudden drop in bone density and increases your risk of spinal fractures. Following denosumab with another osteoporosis treatment has been found to stop this from happening. Spinal fractures caused by this sudden drop in bone density are called rebound fractures.
In rare cases, you might be advised to stop taking denosumab without a follow-on treatment. This happens if your risk of breaking a bone is very low, and the decision should always made by an osteoporosis specialist."
I have tried to find the answer to your question but so far not found. The best advice seems to be to go onto another therapy immediately, as Prolia itself wears off in about six months - the interval between treatments. Fractures can occur at any time after missing a denosumab dose and I could not find how long the alternative treatment needs to continue. Unfortunately I think the rebound effects occur for longer than six months so the alternative treatment probably needs to be continued for a couple of years at any rate, in order to be on the safe side. Which begs the question, why prescribe denosumab in the first place?
Thank you so much for going to the trouble to do that research for me. I so greatly appreciate this.
I also have not been able to get any answers regarding ability for my own bones to start repairing themselves and subsequent timeframes following last Prolia injection.
I don't think it will go on forever, but it may last more than 6-12 months. I've read that bone turnover (ie bone loss) increases dramatically when you stop prolia, resulting in poorer bone density than when you first started it, but that your bone density does eventually increase again to its pre-prolia level. In this article it says that just 4 prolia injections can cause severe bone turnover for 2 years: academic.oup.com/jcem/artic....
Thank you I will have a good read - this might give Need some encouragement that there is a way forward without the drugs- might have to wrap myself in cottonwool for 12 months.
I have found it so difficult to answer this question. But this gives me hope.i will check it out.
It is now 12 months since my last injection I would really love to not take a drug and enable my bones to start restoring themselves. Can’t believe that we need to go onto another drug to offset more fractures not knowing what the consequences of a new drug might be. I am going to have bone turnover markers checked, But that takes two months for the results.
I wouldn't take prolia for that reason. I think you can stop after just one injection without the rebound effect, but supposing you get nasty side effects after the 2nd injection, or later ones, and have to stop at that point? I've even heard recently of someone whose prolia injection was delayed due to low blood calcium - but even a delay can lead to fractures! Bisphosphonates don't agree with me, so I'd have nothing to swap onto if I took prolia and then had to stop it! It shocks me how many GPs and consultants don't think this through properly!
Including detailed protocols for how to switch to Alendronate or Zoledronic acid, in order to minimze the risk of multiple vertebral fractures associated with stopping Prolia.
I recently stopped taking Prolia, my doctor adviced me to take Bisphosphonate for 2 years, and to have blood test for bone turnover measures - CTX & P1NP - every 2 months. i guess you shall do both.
Alendronic acid, as it is not sensitive to the timing of starting the treatment (But has more side effects compare to Zoledronic acid). First blood test is OK.
I am sorry to hear of your fractures, having 6 myself (2 of which have happened in the last 12 weeks I understand the pain you are going through).
Were you not offered an alternative treatment on discontinuation of Prolia??
The reason I ask is that it is now general knowledge that on discontinuation of Prolia, a patient must follow on immediately with another treatment.
How many fractures have you and where are they located?
Do you know what your t-scores were before you began treatment and what they are now?
It is a fact that after discontinuation of any osteoporosis treatments bone loss will occur if not followed on with a different treatment.
With Bisphosponates this may be a little slower because it is absorbed into the bones and only slowly released.
To answer your question of will you continue to have more fractures.
The rebound fractures will not go on forever, and it is to be hoped that you will not have any more as result of discontinuation of Prolia.
However once you have one fracture you are at a higher risk of having further fractures.
Not knowing what your T scores are it is difficult to say if your bones will return to pre prolia but I would very much doubt it unless you get on some other form of treatment quickly.
You say you want to do all the things with your grandchildren again and return to doing many other things.
You mention sleep, have you not been offered anything to take for the pain whilst the fractures heal.
Taken short term these will allow your body to rest and heal.
Everyone is different and so much will depend on how you will be when the fractures have healed.
How long is it since your last one?
My fractures were spontaneous and I became less mobile with each of them. I am now disabled and have to get around in a power chair.
Not everyone is the same and some can get around better than others, I think if you have other spinal problems this adds to your disability.
Accepting that we can no longer do the things we want to is very very hard.
It is frustrating as well as heartbreaking, we have to focus on what we can do right now, even if it is very little.
I hope you make a really good recovery and if so would like to say follow the golden rules, No lifting ( and that will apply to your grandchildren, I know how hard that is having been in that same position some years ago.
They are now of an age now where different games are played and they love to help me.
They fall out over who is going to push me in my maual wheelchair!!!)
Thank you ladies for all your replies. Just that 3 Months ago i was cycling, hiking, dancing and doing gym. But following rebound fractures, still unable to lift, turn, twist, sit. I think my thoracic is improving but lumbar is very painful still- Cannot roll over in bed or get out myself. I finally insisted that I have an MRI as in Queensland / Aus doctors are very reluctant to give lumbar spine MRI as they are not Medicare rebatesble. I Get results later this week.
Previous to Prolia my doctors had been insisting for years (based on my BMD) that i take it. When hip was 2.5 and spine 2.7 i relented- i had no problem on the drug but after 2 years i researched and found out problems which i did not want to be suffering in 10 years at 75.
My doc said ‘now they are advising to go on Bhisphonates for a while first when coming off‘, but as he did not say why or insist, i could not understand why I would go from one Osteoporosis drug to another. So we decided that I would go on to an exercise program which I have been doing successfully.
My last Prolia was July 2019. My hip BMD reading In Jan had worsened to 2.7 and my spine had improved to 2.5.
I have old wedge fractures which have worsened to >20%, at T5 and T7 and endplate fracture t9 and concave at T 12. Awaiting recent MRI to find out about lumbar spine after fall.
I read the many experiences of you brave ladies- i am still hoping i do not need to go back on these drugs but its not looking hopeful. Just trying to get thru pain barrier at the moment then sort out the future direction😱 Thank you all😘
I'm so sorry to read your post - If you feel able to share and know your scan T scores like Sunseaandsand has mention it will be easier for the forum members to offer thoughts.
I was on Prolia for 5 years I made excellent progress moving from the mid OS range into the mid Osteopenia range. I was then advice to have a rest for the medication just at the time in the UK & Europe hospitals where only just taking on board the rebound problems as warned by the manufactures. I am a little younger than you but did go from being very fit and active working full time etc. to yes 'what feels like a disabled geriatric'!
Kaarina given you some good guidance - to call the ROS helpline and already others have offered helpful thoughts. I'm not sure that I can add much - if helpful I can let you know what I did etc. having had 8 spinal fracture as a result of stopping the Prolia. Due to the way my fractures happened and other problems with the local hospital I transferred to a larger teaching hospital the OS consultant there first sorted out pain reflief and a shorter term and longer term medication plan.
I understand that if I had been on another OS med before Prolia that a little of that may have remained in my system, but like you (if I have understood correctly) I had nothing, so the first thing I needed to do was to get back some 'bone strength' to limit further fractures. In my case the damage was pretty bad, as I had not just got fractures but 'lost sections' of vertebra. But the need to get some medication to stop further damage and with luck improve bone strength does seem very important in all cases. I 've just finished 2 years of Forsteo.
I also understand that now Prolia is considered suitable to 'take' for more than the original 5-10 years. It does not suit everyone quite clearly. My consultant suggested in March that I should go back on Prolia, but I was too worried at that if for some reason, e.g. Covid leaving the EU not been able to have the injection at the right time etc. etc. I've just started Zoledronic acid for a further year or two, as time goes on I can see I may well go back to Prolia. I do understand your worry and if I had not made such good progress on Prolia I would not be so keen!
Can I ask one further question it relates to scans - you said you had limited BMD gains when on Prolia did you have your scans on the same machine? I was very surprised to learn that there can be quite a difference between machines.
I do hope that you can get some good support and suitable medication that suits you, then with luck once you have recovered from the fratures you'll back to feeling more like your old self.
Posy- thank you so much for sharing that gives me hope. I am just really annoyed that I ever started prolia and was put straight onto it without something else first.
As well as just having had an MRI I am also having bone markers done but they take a couple months for the results to arrive; after that I guess a physicisn and doc will determine what drugs to go back on I guess. Wish I lived in a capital city or where there was more professional advice/ knowledge of Osteoporosis. Apart from everything else I do worry about the effect prolia has on the immune system as well.
However I don’t want to be like this for the next 20 years and I do want to be able to get outdoors again with kids so that may well mean drugs - which ones i do not know??
The physician mentioned that there was a study coming out of the Auckland University where participants took a drug for 18 months (think it was Prolia),, then had a number of months off -then the cycle started again- i Must research it.
Meanwhile I will have to be extremely careful. Thank you again for your advice, and especially for sharing your story.
I hope you also continue to be able to manage pain and enjoy life.
I stopped prolia after awful side effects with second, started risedronate (actonel) but only managed to tolerate it for 18 weeks sadly.
Was due to see bone consultant in September but this had been delayed and don’t have a new appointment.
I’m just keeping my fingers crossed that there is enough relay drug in my system to slow down the rebound effects.
I understand this period can last up to two years but of course not everyone gets rebound fractures.
I have numerous spinal fractures from before the prolia and following the last ones, bilateral sacral ala, I’ve walked with a zimmer and use a scooter when out. Life has certainly changed for me but I won’t take any more osteoporosis drugs as still have residual ones from prolia.
Hi Nannie-C - I've been using Actonel for 8 months as a relay drug to get off Prolia safely after 4 injections. Like you, I've had bad side effects from both drugs but am limping along with the Actonel as I'm too afraid to stop. I'm going to see an endocrinologist in December for guidance. My GP hasn't managed a patient off Prolia previously and is leaving it up to me to do the research.
Are you still ok 3 months on from your post despite stopping the Actonel - no fractures? Are you having bone turnover markers done frequently to monitor bone loss?
Might I ask what side effects of Actonel you experienced that prompted you to stop? My GP thinks that GERD is the only issue, but it hasn't caused that in my case.
I still have side effects from the prolia but the actonel symptoms have more or less gone. On actonel the flu symptoms have certainly stopped almost right away but the awful ibs still remains a bit. I never really got stomach symptoms just purely my gut to the point I tried missing it some weeks to see if it got better so I knew it was the drug. Sadly there just came the point where I said enough is enough and stopped it. I blame prolia for ruining both my physical and mental health. Mental health is not in the very long list of side effects but I’m sure I’m not alone in having these issues due to it. It really concerns me that people are getting started on Prolia without any knowledge of the rebound spinal fracture risk and having any plan in place to try and prevent them. I agree with others that it should be off the market but sadly too much money being made by very many for that to happen.
Interesting that you had gut issues from the Actonel as that has been my problem too. My health deteriorated insidiously when I was on Prolia - I went from being very fit, active, happy and healthy to dragging myself around feeling awful, and no-one could work out why. I experienced worsening gut issues for 2 years but, once I realised that Prolia was to blame for my increasing decline, I expected that once it was out of my system eg. 6-9 months after the last injection, everything would return to normal. It didn't - but then I started on Actonel almost immediately and everything worsened. So not sure whether the Prolia is still residual causing the gut issues or the Actonel. My last Prolia shot was 14 months ago. Surely it would have worn off by now?
My GP doesn't seem to think that Actonel could be the culprit for the gut issues and that GERD is the only side effect, but I've never had that. I also have nausea and dizziness, lack of appetite, debilitating fatigue, etc so am aiming to stop Actonel as soon as I think it's safe and see if I feel better. Living my life like this is not an option - I've just retired and have too much I want to do! I too skipped one of the tablets to see if I felt any better, but got rather worried as my bone turnover markers done 2 weeks later indicated that my NTx had spiked. So I haven't skipped any more and just force them down each week. You're brave to have stopped cold turkey despite previous fractures pre-Prolia. They would be life-changing and very difficult for you and you certainly wouldn't want to have any more. Hopefully the residual Actonel in your bones is providing a degree of protection. That is the question I want to ask the endocrinologist when I see him - would taking the weekly tablet say every second or third week be as efficacious?
I'm sure you're right - the mental health issues of fracturing most likely aren't being considered. Ending up using a zimmer or in a mobility scooter or wheelchair would be the worst thing imaginable. Coping with that life-changing event, not to mention the pain and ongoing treatment for it, would really challenge even the most resilient personality and affect one's ability to keep a balanced perspective on life. I so admire people whose lives have been ruined by these drugs or by having OP fractures in their ability to try to pick up the pieces and make every effort to get their stories out there so that other people don't fall into the same trap of using these drugs. Similarly, even if one is informed as to the consequences of stopping Prolia, managing one's exit plan is also emotionally very wearing, especially with the potential for fractures hanging over one's head and no-one seeming to know exactly what to do. It's the great unknown in this case that plays havoc with one's head. I don't seem to be able to think about much else right now...
I took Risedronate (actonel) for a year, during which time my existing IBS slowly worsened. I didn't realise the medication was the cause until I stopped taking it due to other side effects. My IBS settled right down almost instantly. I suggest you show your doctor the following, which lists both diarrhoea and constipation as common side effects of risedronate, neither of which is helpful for someone with IBS: patient.info/medicine/rised...
Thanks for your input, Met00. My gut issues unfortunately aren't as straightforward as constipation or diarrhoea, neither of which I have. Since I started on Prolia and more markedly on Actonel my bowel is constantly swollen with persistent gas and feels like it's thrashing around in distress. It's very uncomfortable and makes eating difficult so I'm not eating a lot and my diet is very limited (but nevertheless very healthy). It almost feels as if my gut flora have been wiped out and nothing is digesting.
My GP thinks it's something else and that neither Prolia nor Actonel could be causing this, but hasn't come up with any answers. I see that nausea and dizziness which I'm also experiencing are fairly common side effects of Actonel, and a few people have reported gassiness, so maybe that's a lesser-known side effect.
Unfortunately I can't stop taking the Actonel right now to test that theory because of the potential for rebound fractures after stopping Prolia. However, just knowing that others are having gut problems of various types on Actonel tends to make me think it's the culprit.
When I was having Prolia amongst othe..r side effects I had awful wind and constipation then after starting actonel all seemed ok at first and constipation settled. After few weeks developed terrible gut issues with wind, cramps, bloating and diarrhoea. I’d briefly had ibs many years ago and resolved it after removing lactose from diet but never like this. The diarrhoea at times - sorry for being graffic - but sometimes it was like passing pure acid. I did miss it a couple of times and found i was better these weeks, did that twice and as flu symptoms were increasing decided I’d had enough. My gut is still not 100% but getting there. All Drs have accepted my decision and some now realise I’ve probably read more on these drugs than them!
It's very interesting and reassuring to hear your experience of Actonel side effects on the gut, Nannie-C. They are so similar to mine (apart from the diarrhoea which I only experienced on the daily 5mg Actonel which I kicked off with because I couldn't tolerate the weekly 35mg initially).
What began in a minor way on Prolia just kind of exploded on Actonel. My theory is that these OP drugs destroy the gut bacteria - probably why GERD is a well-known side effect of Actonel. But no-one seems to know what is in the drug that affects the digestive tract. I asked my pharmacist who said she'd research it and get back to me, but nothing from her yet.
My GP is incredulous - says none of her patients on the OP drugs have these side effects. I spent a lot of money consulting a naturopath who couldn't come up with anything either - and none of the treatments worked. I'm on probiotics but no seeing a significant improvement. The bloating, even when I haven't eaten anything, is most uncomfortable, and the gas relentless. So it's comforting to know that I'm not alone despite what my GP says.
I can't wait to get off this drug and rue the day I ever heard of Prolia which started this chain of events! These drugs do more harm than good, in my opinion, and the people on whom they are thrust by doctors are woefully uninformed (probably because their doctors are).
I really do sympathise with you, they’re such debilitating symptoms. There are many groups on gut issues around and what I did when had the ibs years ago was to research Fodmap and their suggestions on trying to discover the things that cause the problems. I stopped lactose after using it, I’ve now gone back to it to try and help me get my gut better. Iyou on regrets on taking these drugs, especially the Prolia. I just noticed you are in Perth WA and I in Perth Scotland, small world. Stay safe
That is such a coincidence - both in a Perth but on different sides of the world! The Scottish Highlands are so beautiful, very different to my dry Perth.
I've tried the FODMAP diet under the care of a dietitian at least twice. It's often utilised in Australia as it was developed at Monash University in Victoria, so is well known. It didn't make any difference to my problems at all, but then I do eat a healthy Mediterranean diet so couldn't see that what I was eating would be playing a part in my gut issues. No, I'm fairly convinced it's a side effect of probably both Prolia and then the Actonel, when it went into overdrive. I'm going to discuss with my GP further on Friday. Good to know that I'm not alone in being affected similarly by these drugs.
Stay safe, too, in your corner of Scotland. What times we're living through!
Was on Prolia about 6 years before experiencing unusual leg pain. No reason for the pain was found. Finally started using a cane. Had been walking regularly before that time. Two years ago next month my cane slipped on edge of uneven pavement. I fell and broke my femur, resulting in surgery with rod implanted. Surgeon said it was a typical break from the drugs. Stopped the Prolia. I haven’t had any rebound fractures but have suffered some from back pain as a result of spinal stenosis. The leg pain is gone.
Oh how painful and debilitating. You know though it’s good to know that there is someone else out there who has actually stayed off any drugs and not had to return to Prolia or a similar drug after sustaining vertebral fractures – if this is what I have understood from you.
I am praying my fractures heal well- at this point in time I am concerned.
I am concerned I may sustain another fracture but I am also thinking This may be the only chance I get to stay off drugs for awhile. I’m only 64 - if I was 10 years older I might not be so hesitant To further drug treatment. I dont know.
Unfortunately I live in the city small city in Australia where there is no osteoporosis specialist or advisers- I can’t even seem to find that type of support apart from physios and pain management specialist.
I continue to research and I’m so thankful for his blog
Hi Katy12 - I'm in Perth, WA. So sorry to read your account of medical mismanagement leading to your fractures. Your doctor should have been aware in 2019 of the possible consequences of stopping Prolia without a relay drug. It has been common knowledge since 2017.
I'm on Actonel after 4 Prolia injections, last one in Sept 2019. It's a bit of a minefield as no-one is 100% certain of how long to continue with the relay drug. I've been trying to find a good endocrinologist to guide me as my GP hasn't managed a situation like this before but is very supportive of my doing the research to get off these drugs without fracturing.
What I wanted to tell you is that there is an excellent endocrinologist in Brisbane who does telehealth consults. Would that work for you? I was given her name by a contact on this site who has also stopped Prolia and has been on Actonel for almost 2 years. Her endo seems to be across all the issues and is highly proactive, querying interpretation of MRI results, etc. I will be consulting her if the endo I am booked to see here in Perth in December doesn't have the experience to manage my situation. I did phone to ask about an appointment and they are booking in March 2021 but your GP should be able to give you an urgent referral because of your rebound fractures. She might not have all the answers but at the very least should be able to plan a way forward for you. It's worth a shot.
Let me know if you want her name. I do feel for you. This should never have happened.
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