I would be very interested to hear from anyone who had problems after stopping Denosumab injections.
My bone density increased enormously having taking the drug for 5 years, a part from one or two issues after the first and second injections I had no problems.
I stopped in June 2017 and in at the end of October woke with back pain I felt as if part of my back was no loner there. After a long journey I discovered I had a multiple osteoporotic collapse of 5 vertebra and hairline fractures.
I understand that although in the USA they include a warning in the Patient Information Leaflet in May 2017 and in August the ECTS reported ‘Patients considered at high fracture risk should either continue denosumab therapy for up to 10 years or be switched to an alternative treatment’. It was not until September The European Medicines Agency (EMA) revised their advice – patients either being offered alterative medication or to continue with denosumab.
Posy White
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Posy-White
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I am so sorry to hear your story but it does appear to be the case that if one discontinues with prolia one must continue with another OP drug which will more than likely be AA or similar. The doctor I see for OP suggested I go onto prolia but when I saw him six months later I said I would prefer not to because of the possible side effect of joint pain as I have enough of that anyway due to having osteoarthritis. He said he agreed with me and then told me that on stopping prolia there was a possibility of rebound vertebral fractures and one had to either continue with prolia or another OP drug. Sounds like I had a very lucky escape. I have said this before, we and our parents, if either or both suffered from OP unfortunately appear to be the guinea pigs for these drugs.
I am pretty sure there are other members of the forum that have posted that they have suffered like you from taking prolia and stopping it..
I am in Vancouver, Canada a 62. male, but had early osteoporosis and was on Prolia for 1.5 years. I had significant improvement in my Dexa tests, but had to discontinue due to severe skin rashes. I was not told that I should bridge treatment to an alternative drug i.e. Forteo
and within 6 months had fractured 3 Vertebrae and my sacrum in two places.
The black box warning was not on Prolia at that time...late 2016, but studies had surfaced indicating a problem.
Sorry to hear you also had fractures, would you mind me asking did you have any spinal surgery or supporting physio?
I have complained to my Hospital Trust about the lack of care I received and started the process of raising the issue locally. When I started I did not have any ideas of legal action, I naively thought I would recover! As the days drag on and I have no income, as I haven’t worked since this happened I cannot help but wonder if I’ll ever be fit enough to work again and therefore need to rethink about options.
It would be a challenge to take up a class action suit, but sometimes you just have to do these things!
I am scheduled for sacroplasty (glue injection into the sacrum to bond the fractures)
on Sept 6. As for the vertebral fractures they are compression fractures and vary between 30 and 50%. Glue injections verteoplasty comes with more risk.
My biggest issue is that whenI presented my initial injury in a large Vancouver hospital they completely missed the fractures in the pelvis. It was only because I had a private
MRI done after weeks of pain that they were found. At of cost of $1200.
I would have the sacroplasty done privately, but is a complicated and not risk free,
but when successful is life changing.
I believe that when all of these incidents of early veterbral fractures comes to light
the drug company will be liable. It may not help us, we may provide an early warning to those ahead.
Every effort to determine why these fractures occurred (genetic or otherwise were run by my rheumatologist, and it was he who suggested the Prolia effect.
Hello,Just came across your post of three years ago… regarding sacroplasty. Have you had this done, and if so did it make any difference, improvement or have you had more problems? I too have a fractured sacrum and compression of L1 (first lumbar vertebra). Rebound fractures caused by discontinuation of Prolia and was not warned of any problems once Prolia was stopped!
In between me being referred and getting an appointment at a large teaching hospitals a medical review on sacroplasty was published so I went to the appointment with a lot of questions and an open mind. It had taken 5 months for me to get the appointment and it was 10 months since the fractures - any benefits seem to be in helping the bones to heal was if done in the first few weeks and the review seem to suggest that for a lot of people they heal just as well without the treatment. I had meet someone who had had it done and was full of praise for it.
However in my case the local hospital just had not realized how bad the damage was so I was not expecting the news I was given at the larger specialist hospital - The 'you have a few two or three fractures' became eight at first I thought they meant I had another lot of fractures but no all the fractures had the signs of being in at the same time. The reason it had taken so long for an appointment to be issued was my x-rays, scans and information had been sent to the 6 surgeons on the team none of them recommend the sacroplasty or any spinal surgery as I simple did not have enough bone left, the risk outwieghed any possible gain, I could end up in more pain and less mobility after surgery. I was told what had happened had to be viewed as life changing, I should look at adaptions to my house/ move if needed; talk to my GP about PIP/Blue Bagde, talk to work and be referred to Occupational Health as it would be unlikely that I would be able to go back to work. I would be referred to physio and the pain clinic.
I am a cup half full person but that was a bit of a blow. BUT I did have 8 fractures and bone loss to the level of 4 vertebra missing most of the inner half so please dont be feeling you'll be going on the same path!
I have really pushed myself to maximise what mobility I have no one at the hospital can quite believe what I have been able to do. Okay yes I do have a wheelchair, but I have a spinal brace (very supportive so I can sit and stand quite well. I can walk short distances outside with crutches (I have Smart Crutches which I find much better than the ordinary ones) in the house I manage with a walking stick and the furniture. By altering what I wear in the main I can dress myself most of the time and with the house adapted really I manage quite well.
The Rheumatology Consultant (Large hosiptal) sorted my pain management far better than the local hospital Pain Clinic, I do have pain but in the main it's at a manageable level by wearing weekly Butec transdermal patches.
The person who's greatly helped me is a local McTimohey Chiropractioner who works on my muscles (not bones like a Chiropractioner) I've had lots of issues with holding my head up, neck and shoulder issues and one hip slips up 'rubbing' on a rib so I go every three weeks and get 'straighten out' !!!
You don't say when your rebound fractures happened. How are you getting on are you in a lot of pain or is that sort of under control?
I am 63 yrs, female also lives in Vancouver Canada, had early osteoporosis, been on Prolia for 3yrs, and thinking about discontinuing this med since I also have this terrible itchy red skin on my back for 3+ months without knowing the reason why, GP put me on Reactine everyday but somehow the issue continues. Other than that, I also got lots of problems with gums and the Periodontist suggests gum surgery, or I will lose lots of teeth. Reading your post about the fractures really scares me, may I know what medication you’re taking now? Back to Prolia or taking something else?
I am sorry about your fractures, I hope it’s okay now.
What I've gleaned from reading is people who must come off Prolia rather than remaining on it (unfortunately) for life, are being prescribed either teriparatide (Forteo) or a bisphosphonate. Teriparatide is a drug which actually stimulates bone growth, unlike the other medications, denosumab (Prolia) and the bisphosphonates, which both suppress the bone remodelling cells (osteoclasts which take away old bone). Forteo can only be used for two years. I don't know how long the rebound effects last when discontinuing Prolia but I expect the issue has been known long enough that there will be information available. Not taking a bridging medication of some sort does not seem to be an option as I doubt any amount of nutrition and exercise can overcome the rebound effect.
Prolia was considered a bit of a miracle because people's bone density increased very effectively. So much so that doctors felt quite happy to tell the patient they could discontinue the medication after a couple of years. Unfortunately as we've now found out a significant number of those people then developed "rebound osteoporosis" - a direct result of discontinuing the medication and nothing to do with the original diagnosis. So it would seem that new bone was being formed.
Now we know either a different drug has to be used for some period of time after discontinuing Prolia, or one has to stay on Prolia for an indeterminate length of time, probably for life.
Since some hAve stopped Prolia temporarily for a few months while getting extractions or dental implants and then returning to their normal 6 month injection, it makes me wonder if those with success may have not had a very poor bone density when they started. Also, maybe those who fractured either had low bone density before Prolia and fractured more easily when stopping. the injections? Worth consuderingz,
I live in the US. Discontinued Prolia because of impact to my immunity system. Within 4 months suffered 6 spinal compression fractures. I have since undergone Kyphoplasty which did accelerate the healing but did nothing to straighten my spine. I can no longer stand straight. This is a very debilitating condition. My doctor thought we had time for a medicine holiday. I would never recommend Prolia to anyone because from all that I have heard, complications are not worth it. In the US, General Practitioners hand it out like candy and don't pay much attention to possible side affects .
I most admit I tend to read the side affects, but unfortunately didn’t know about stopping risk until ‘too late.’ Interested to learn you felt the Kyphoplasty accelerated the healing, thank you for sharing that. I read the Cochrane Review on Vertebroplasty and need to talk to the Consultant before getting a better idea of what to do next as the report didn’t make great reading!
This rebound osteoporosis has only recently become general knowledge. There will be thousands of people caught in this trap now. Prolia no doubt has a place, but it should no longer ever be offered as the first line OP treatment.
Kyphoplasty is similar to the procedure you mentioned but Kyphoplasty is considered a bit safer: both procedures accomplish the same result but they must be done within a limited time frame to do any good. I believe that the timeframe is within 8 weeks of the fracture.
And yet I have read some others who skipped a dose just to have implants, then went back to Prolia successfully. Makes you wonder if those successful ones did not have as bad osteoporosis as others to begin with?
Also it seems those who dont fracture after prolia,regardless of t-scores,were usually on a bisphosphonate BEFORE prolia. It appears prolia only users are at greatest risk.
That's an interesting observation foxysharon - thank you for sharing it, wonder if any professional in the field has all so spotted it? I just had Prolia as I couldn't absorb oral medication and Prolia was the new wonder drug so was offered it. One of the reasons I wasn't offered other medication was as such using Prolia for the 5 years I no longer was in the Osteoporosis range, the other and main reason was when I stopped for a drug holiday, Prolia wasn't seen as causing problems.
Posy-White - I wouldn't take any of those bone meds for osteoporosis or anything else for that matter. Sure..they build bones, but the bones are NOT strong...they are porous. Me? I take HRT to stop my bone loss...I'm 70 and hope to be on HRT for the rest of my life...
Interesting idea to look into, thank you; I have always thought exercises geared to help develop stronger bones was the way forward for me. I’ve always been active so found this an easy to do option along side vitamins and eventually medication.
I was prescribed prolia December 2017 I was very reluctant to take but was advised by consultant and GP I needed it and not to be concerned about side effects. My last dexa scan has shown improvement now I’m worried as iv only had 2 injections. I should have trusted my own judgement and refused it , I had done some research on HRT and it appears to be a better option but my GP said no stay on the Prolia . I have had both wrist fractured some years ago and fractured my pelvis both sides 1 year ago I have also had a spinal fusion done twice 20 years ago . I have severe back pain and hip pains but I always put it down to surgery or bones healing now I’m not sure if it’s the prolia .wish I never started it . I do take supplements. I’m back in the hospital Wednesday to see if my right side fractured had healed I will discuss it with orthopedic consultant get his opinion it would appear if you start on it you can’t come off it . I’m prescribed it for 2 years only no idea why .
Denosumab (prolia) seemed to give really excellent results for improving bone density so it was thought that if enough improvement could happen in relatively few years it could be discontinued. This is before the rebound osteoporosis became common knowledge. Perhaps your prescribing doctor hadn't heard about it when you got your prescription. It's now being recommended that when people stop taking Prolia they start a different medication until the possibility of rebound has disappeared. The alternative being, it seems, to stay on Prolia for life.
You seem knowledgeable. Do you know which med or meds are being used when it becomes necessary for some to stop the Prolia because if side effects. And, are they just as bad with dental situations?
It is so confusing to know what to do for the best. I hope your hospital appointment goes well. Have you ever talked with one of the Nurses from the NOS helpline, they can signpost to information and be amazingly helpful listening and giving options. Posy-White
I've written enough about my similar situation elsewhere on this website, but yes, because of changes the doctors made to my appointment last year my Prolia injection was late resulting in multiple vertebral fractures that basically ended my active life. The word "delay" does not appear in patient warnings. The only warnings are against "stopping" or "discontinuing" without advising your doctor. But in my case it WAS the medical office that changed my appointments and there were no warnings on any of Amgen's literature that I was given that would have made me question this.
Thank you for sharing your news. I am so sorry to learn your life has be turned upside down basically through poor medical care. I have a horrid feeling that you'll be told / have been told, like I was as you have osteoporosis this could have happened at any time and it cannot be proved it was a rebound fracture connected to Prolia. I feel I 'need to know' the likely hood of it happening again, I'm waiting the results of more scans and x rays 16 months down the line to see how I'm doing now.
Coming to terms with what has happened is not an easy journey!
I have had one injection of Prolia 2 months ago and have never had so much back ache in my life. I was not told that if I stopped I could suffer rebound fractures but I am unable to tolerate oral medications. I have vowed not to have another injection but I am in a big quandary!
I believe it's considered unlikely one experiences rebound osteoporosis after a single dose of Prolia. The difficulties arise after two doses. Have you read my story? It may give you some ideas.
Hi Teeshot....I just read your post from 7 months ago and was wondering how you were doing. I like you only had one shot of Prolia and will not be getting another. I also like you have pretty bad back pain since Prolia shot. Did you go on a rebound drug and if you did which one or did your Dr. say it wasn't necessary since you only had one shot. Thanks so much for any information you can share. One last question...how is your back feeling now since Prolia is no longer in your system.
I also understood like HeronNS said it's not very likely after only the one dose of Prolia. But sorry to read about your back aches. I like you am unable to take oral medications, but have been offered injections / infusions. The ROS website has details of the varies OS medications or it might be worth calling the helpline to talk with on of the Specialist Nurses to get a few more ideas about what could be more suitable and meet your needs.
I am so sorry you have suffered from ceasing to take denosumab. They do say you can't stop it. It sounds horrendous, and I am just about to start on that journey. I suppose they probably think I won't live another five years, but who knows. Perhaps go back on AA and lose all yer teef!
This post is an older one, when I had the problem of rebound fractures in 2017 hospitals in the UK had only just had the directive to offer a follow up medication if stopping Prolia denosumab. Unfortunatly for me I was at a small local hospital and they didn't understand the full implcations of not offering other medication; the journey for me hasn't been great but 'you have to get on' with the situation you find yourself in don't you?
Since then I changed hospitals I've had a two year course of daily injections, followed by trying a yearly infusion, but that didnt really suit me, as I developed an eye problem , so two years ago I went back on to denosumab. Basically denosumab suited me my bone density greatly improved, so I'm hopeful the same will be happening this time. I'm looking forward to having a scan in about a years time. I understand that it is now considered 'safe' to stay on denosumab for more than the first suggested 5 year period. And as things change and there are new developments who knows what the next few years will bring!
My fingers are crossed for you that you too will not have problems in having the denosumab injections and your bones will improve. If you have any concerns I have always found the Specialist Nurses on the ROS helpline really helpful and supportive, do phone or email them if your worried.
Hey, Posy! I didn't notice your post was three years old! Stupid! Thank you so much for your reply. I am sorry you really went through the mill as a result of medical ignorance, and I just wonder why you came of denosumab if it suited you.
You're right; we do have to get on with the situation we find ourselves in, and I have a nagging feeling that I should contact my haematologist or my nurse, just to make sure denosumab doesn't interfere with my blood counts. It frightens me to read about the pain some people get when starting the drug. It was a doctor that I met socially who recommended it, as being a better alternative to alendronic acid; he didn't say anything about side effects. Oh well, I'm not prone to that kind of thing, so fingers crossed. Thank you so much for the education that I was sadly missing.
My story is a bit difficult, the hospital stopped the the denosumab - back in 2017 it was thought you should only take denosumab for 5 years. So in June 2017 my scan showed I no longer had osteoporosis, I'd improved so much on denosumab. Therefore I was not offered any further bone medication, unfortunatly for me I had rebound fractures 4 months later. The fractures where pretty bad so I was then offered daily injections-Foresto for two years, that took us to the start of lockdown when no one was quite clear what the future held. I didn't want to be in a situation of not being able to get to the hospital for the denosumab injection etc. so went for a yearly infusion, which if late wouldn't cause the same problem.
So you were a hostage to circumstances! How could they put out a drug like that but not have the knowledge about stopping it! Those rebound fractures sound awful, cos presumably, they just happened without any cause. I'm so sorry you have gone through all that; I do hope you are on the right road to a strong skeleton now.
Not that I'm a great defender of drug companies but the warning was flag up in the US and Canada nearly a year before taken on by UK and Europe. And then it seem to be a slow process I stopped the drug in June 2017 in September of the same year the message was disseminated to UK hospitals and had the fractures at the end of October 2017.
I guess the reason the drug is still used is it works and works very well for many people, but some people have had horrid side effects/ re bound franctures. Making it very hard to decide if this the best treatment. - ROS website has factsheets about all the different bone medication which, I have found very helpful.
I am looking forward to my next scan to see if my bone health has improved, but given I have not had any more fractures that's a good pointer that things are going well.
I had 1 Prolia in Feb with many side effects. Worse ones were white sore on my lower gum and hurt. Went away after 3 days. Next one was broke out with a horrible rash all over. ER gave me a mega dose of steroids. Said it was an allergic reaction. Then of course the
Chills
Headaches
Body Aches
Cramps
Teeth and Gums hurting
Still have the aches and now this is the 3rd time I broke out in a rash. On steroids once again. Aug I will be relaying off Prolia with Reclast infusion.
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