Again, a GP would presumably have to refer you. I am not inclined to continue prolia as I really believe it is mostly a marketing program designed to convince us that it is useful; very little data that this is so, but endo wants me to continue.I think I might be better off NOT TREATING osteoporosis. Finding out whether you have any fractures of your vertebrae is of paramount importance. I just seem to get a lot of contradictory opinions and "we dont knows" from the medical professionals in Perth Aus I've consulted so far. I have had rheumatoid arthritis since my late 30s, am 74 now. So allowing the bone turnover to increase a bit by taking the drug less frequently might not be a bad thing, as long as it's monitored. However, I'm more worried about the possibility of fractures than retaining the old bone that Prolia built up. The guide below will help you find the insurance coverage most like yours. Bone Drugs, Bone Health, Osteoporosis, Prolia, Since You Asked, 1413 K Street NW, I suppose it's all a roll of the dice as to who is affected and who isn't. The Lamy article would suggest that I should go with the Reclast now. Vertebral fractures in Canada after Prolia discontinuation, Has Anyone Stopped Prolia with No Fractures in the Year to Two Year Period After Stopping - Please Share How You Did It & Recommendations. So my next post will hopefully be a success story of a different kind! Do not stop, skip or delay taking Prolia without first talking with your doctor. Definite signs of osteoporosis. I can only share my own terrible experience. Possibly the ones having fractures are the ones who have been on long-term medication of sorts which has interfered with their bone structure and their balance - a dangerous combination. or taking a drug holiday is not recommended when taking denosumab. Denosumab (Prolia) and the bisphosphonates are known to cause this horrible condition where the jawbone does not heal after any invasive dental work eg. Very uncaring doctors and in my opinion, taught only how to use drugs and avoid worthwhile natural alternatives for what ails you. I am so sorry you have to struggle with this situation. It's best to be your own health advocate. You should use an effective method of birth control (contraception) during treatment with Prolia and for at least 5 months after your last dose of Prolia. Re cutting the dose - Prolia comes in a tiny bottle with a needle that the doctor or nurse injects. Thats so sad. It's now been almost 12 months since my last missed Prolia injection (Mar 2020) so I have a way to go, but hope to start weaning off the Actonel in June (so 15 months after last missed Prolia injection, which is what my contact under the care of the Brisbane endo did). I would also contact the ROS for advice and guidance, as I suggested. The GP I'm now seeing (as my previous one refused to believe that Prolia caused any side effects and basically told me to go elsewhere when I became too much of a nuisance with constant complaints which she couldn't diagnose) is happy to let me stay on Actonel until the danger of rebound fractures has passed, and then start taking strontium citrate. Rheumatologist only says you should stay on it. I think it's just the luck of the draw. The cynic in me says that the drug companies make billions of $$$ out of the OP drugs, so I suppose that relentless marketing to GPs plays a huge part as well. Learn about side effects, alternatives, and more of Prolia (denosumab). Fortunately, nothing has happened to me yet, but I feel as if I'm a walking time bomb, and am extremely fearful as to what the future holds for me despite being in a far better place than you. This is typically a bisphosphonate (daily oral or once-a-year injection). I've also come to realise over the years that doctors, even specialists, don't know everything, and we can't just accept what they tell us. I assumed that you were taking alendronate 35mg per week as you mentioned it in your first message. However, the good thing is that you haven't had any vertebral fractures and your bone turnover markers haven't increased dramatically, so the Fosamax is obviously working in suppressing the bone turnover. It's a name for risedronate. Your predicament is dreadful. I am getting tired of doing so, it's exhausting on top of the illnesses and one should not have to get a correct diagnosis and relevant treatment. My two GPs, physio and endocrinologist have all been jumping around since the MRI two weeks ago which revealed the further deterioration, but no-one seems to know what to do. I do have an RA consultant, had one since this began in my late 30s. I hope you mend quickly and that the alendronate prevents further fractures. However, it carries a risk of serious side effects. 1998-2022 Mayo Foundation for Medical Education and Resreach. So you're 11 months out from your last injection and haven't transitioned to a bisphosphonate. Reply (1) Report Prolia is definitely one of those concerns and because similar questions keep getting asked it would be helpful to have a pinned post which has some of the answers to direct people to. An update 1 year later on my mission to discontinue Prolia safely: I've now been on weekly Actonel (risedronate) for almost 12 months. I had been on Protelos (Strontium Ranelate) for 7 years prior to March 2014 when the European Drugs Agency suddenly withdrew it, stating heart attack & stroke risks. Ctx numbers have leveled off and decreased slightly. It's a prescription drug that treats osteoporosis and bone loss in certain adults. They started the FAQ because we kept pinning posts and it was getting too unwieldy so this is just an attempt to bring some order to the chaos. It is appalling that doctors are still administering this dangerous "medication". Always felt really energetic prior now not so much. My experience is that most medical professionals, specialists included, are woefully ignorant of the side effects of the medications they prescribe. I've only got 4.5 more months to go on Actonel in terms of Prof Lamy's 24-month protocol, and will have to start weaning off the Actonel at some stage. I had a head first fall down the stairs and sustained two wedge compression fractures in between my shoulder blades (T4 & T5). Just a thought as you mention you've been off Prolia for 1 month now - you do realise that there is a risk of vertebral fractures if you don't replace Prolia with a bisphosphonate immediately, don't you? It's completely insane. Although the NHS is quite a remarkable institution, it does not really look at prevention - saving money they think, when in fact it costs a lot more when serious problems arrive and of course affecting the patient's quality of life and often patients die prematurely. Prescribing Information and I have been on Fosomax for a little over a year (my last Prolia shot was October 2018). So it always takes so much energy I dont have and perseverance. Prolia increased my bone density quite spectacularly by over 10% - but at a high price now that I'm risking vertebral fractures by discontinuing it. I'm still on the Actonel 35mg weekly, but struggling with the side effects which seem to get a bit worse as time goes by. The odds of having a fracture post-Prolia without following up with another drug are between 5 and 15%, from what I've read, so not terribly high - but what if you're not one of the lucky 85%? So another one crossed off the list! I have seen many private doctors over the years, not always a success, unfortunately. So I don't need to take any more vitamin D but it's part of my Citracal tablet and I don't see any harm in having a bit extra. The implications and life-changing effects of fracturing vertebrae made me decide to abandon all thoughts of crossing my fingers and hoping for the best (aided by various supplements, including strontium citrate) and start taking the 5mg Actonel. Yes, msw67, everyone's experience appears to be different. My doctor was really happy and said: "Just keep on doing what you're doing". Don't leave it too long. He's not quite correct when he says you have to be on it for life as there IS a way off Prolia if that's what you decide you want to do, and after only 2-3 shots, you are better off than those who have had 10 years (20 shots) of Prolia. No-one knew what was going on. They did not have anyone really good there for a long time and then, I understand they had 2 endocrinologists who hhave now left to go and work in Australia! So the issue now is the way forward and that largely depends on your bone density. Take care, all the best. Thanks for sharing that. During that time three vertebrae broke leaving me in constant pain and unable to resume many normal activities, travel, etc. My last NTx test was 29 (up from <20 two months prior) and I requested a CTx which was 100. Yes, that is the scary part - they are fully aware that there are health-compromising issues once people want/need to stop Prolia, but just carry on merrily prescribing it (and probably not informing their patients of the implications of discontinuing it). Thanks, Heron - lots of valuable information there, especially regarding specific supplements which are easily available OTC or online. When I share my story I don't direct people to the FAQ., they get a link to my post. Ended up at hospital with chest pains, bladder pain, and finally got a red blotchy rash on my face and eyelids for a month. So the Fosamax has done the job of keeping the lid on your bone turnover. If you were to have a half dose as per Dr Aliya Khan's protocol (which I mention in a post below), presumably all the person administering the Prolia shot would do is stop injecting when the syringe is half empty and dispose of the rest. Have you run into this or heard about it? The RA is most unfortunate too. I've heard that these femoral fractures can start off slowly with increased cracking over a period of time and then just snap. Both BMD and BTMs are indicators used to diagnose osteoporosis. As this is apparently a vertebral rebound fracture, I'm hoping that it won't be followed by others as Prolia is known for causing multiple rebound fractures. This bears out what I had been reading in the published medical literature. I had to request xrays many times and it was only someone who assisted my orthopaedic surgeon (now retired) who made the request when I went to see her as a follow up post knee replacement operations. I manage to see the same GP nearly every time because I explained to her it would be better for me, the patient and for her too. So that begs the question - how many elderly people have osteoporosis and yet live happy, healthy lives without suffering a fragility fracture? I was just about to suggest you contact NOS when I see the Administrator post below regarding ROS. Thanks again and I hope you will come off the bisphophate treatment safely. ONJ seems to be more prevalent the longer one is on these drugs, although I read recently of someone who developed it within 3 months of starting Prolia. As I am now on a bisphosphonate to get me off Prolia without fracturing vertebrae, my dentist is very unhappy and has said that he won't be doing any invasive work on my teeth while I'm taking it. angryandfrustrated in reply to HeronNS 3 years ago I want to know how long this the rebound effect is active? I had no facility fractures prior to the Prolia rebound fractures. Hi Arcadia10, an Adelaidean here finding myself in a similar boat. The alternative (possibly fracturing vertebrae) is too awful to contemplate. I am 53 and have just started testing to see if they can discover a cause for my Osteoporosis. I reported to my consultant the pain I had in my femur but he didn't order any X-rays although I did have a dexa scan followed up a couple of years later which showed my femoral neck was worse but my spine had improved. I guess in a way you did do this with this post. SC worked really well for me in the past and doesn't appear to have any side effects, so I'm keen to dump the bisphosphonate with all its horrible risks and take SC again. However, the NTx should decrease as the bone resorption is inhibited. I do really feel for you, JGBH. I would think you can get a per diem nurse willing to do this. Yes, please update me when you get your DEXA results. Why OP drugs in the first place? You mentioned the importance of testing the bone turnover markers (as recommended by Olivier Lamy in his most interesting paper which I have read). My bone turnover as indicated by the CTx blood tests is being suppressed to within acceptable limits, up from 100 in Aug 2020 to 430 in Nov 2020, then 630 in late Feb 2021. I am the only one (apparently) to report any side effects and thus have had to stop having the injections. You must be in the USA as you mention Stanford, so the 5mg Fosamax must be available there. I was interested in curcumin but as I said, I have a sensitve stomach and couldn't take the black pepper I don't think. So much is at stake when withholding critical information like this. X-rays showed I have problems in the lumbar spine area. So I would push for every possible x-ray, scan, MRI etc on your spine as soon as possible to find or eliminate VFs caused by Prolia. I switched to alendronate 70mg weekly shortly after the first fracture, and now it appears to be a waiting game. "How long has she been on Prolia? It's important to have it checked out. Some meds are necessary but I'm sure that a lot do more harm than good. And I should add: You cannot just "reduce" the dose. I'm in a similar situation and find that friends lose interest in health problems very quickly and there is little ongoing support. What was it before starting the injections? I liked him, but I don't know yet how able he is, not sure how much experience he has of RA, probably very little or no experience of osteoporosis. Some GPs really - you'd think they could be a bit more sympathetic when dealing with people suffering with conditions like this it makes me wonder why they are doing the job if they can't do it properly. People have started having multiple spontaneous vertebral fractures as early as 3 months after the date of their last missed injection, so 9 months after their last injection. But I don't think I would do very well with the blindness now that Prolia is attacking my retinas! -I only had osteopenia, but was told that I could avoid osteoporosis completely with Prolia. I suppose that's not the only indicator that it's appropriate to start an OP drug. So I need to make another appointment with her and try to push things forward. The list price for Prolia is $1,477.16* , per treatment every six months. Multiple Vertebral Fractures (MVF) Following Discontinuation of Prolia Treatment: Following discontinuation of Prolia treatment, fracture risk increases, including the risk of multiple vertebral fractures. Prolia is destroying me (as noted in other posts) but when it was stopped years ago many bones broke. I was offered strontium in the early days by my then consultant but it was new at that time and had the side effect (possible side effect) of diarrhea, I declined but I think that was strontium ranelate. Happy holidays. meganisi on this site has been on Actonel (risedronate) EC weekly 35mg for 18 months until May. Do let me know how things go and also what your T-scores are when you locate them. Is it possible for them to stop taking Prolia without undesirable consequences? I agree. avoid rebound fractures of the vertebrae. In clinical trials, results also suggest that people who stop taking Prolia and did not start another treatment experienced more vertebral fractures in the 10 months after treatment than people who had been taking a placebo. Cancer is big business. Compared to other osteoporosis treatments, only Proliais1 shot every 6 months. They got up to the low 900s which should have rung louder warning bells and the first fracture happened about six weeks afterwards. My DEXA scan of March 2022 showed that my bone density in my hip is still better than it was pre-Prolia, which is a bonus: I'm actually very pleased with these results as I expected that my two years on Prolia followed by two years on bisphosphonates trying to shore up the gains would have left my bones in far worse shape than before I started. I've done so several times. My GP has told me that there is no guaranteed way to discontinue Prolia safely, i.e. Did you have any particular reason for discontinuing Prolia? I just noticed that today on re-reading. I did contemplate legal action but the thought of years of aggravation put me off although I was advised that I had a case for clinical negligence. For women with osteoporosis after menopause at high risk for fracture. For Prolia the window for procedures is probably 6-7 months from last dose. Supplementing with too much calcium has recently been identified as causing heart disease and too much calcium can actually weaken your bones! But I'm really frightened because of the experience I've had! most patients taking it were elderly women who are prone to UTIs anyway. Also I have read of Drs prescribing medication, even Prolia, when there have been no fragility fractures and DEXA results of 2.5 and even less - it really is scary out there! During those 3 years, I had no side effects at all and that fact, taken with the apparent bone density "improvement" and no history of fragility fracture was probably why they thought a drug holiday was appropriate. She is kind but its difficult here in the UK to get things moving if one is old and has multiple health issues. I'm with you re these osteoporosis drugs being marketed to the physically and emotionally vulnerable as essential to prevent fractures when there is actually a vast amount of money to be made by the drug companies in doing so. I'll try to answer some of your questions. I had my baseline metabolic bone study tests done on 8 June and get the results from my GP tomorrow. A little over a year ago my doctor retired. Now advised need to be on for lifetime. Remember thalidomide? I was given Actonel (the once weekly tablet taken standing up) for 3 years 2005-2007 and it did nothing for me. It makes me so angry as like you, had I known the dangers of the drugs, I probably would not have had them. Not easy when one feels exhausted and unwell. Unfortunately, once one reaches retirement age they are not keen to spend more money on you. She said that which drug is more effective in preventing rebound fractures when stopping Prolia is a matter of discussion and debate in the osteoporosis world, and that there is no clear answer to this yet. The aim is to keep it at <50. I was put on prolia many years ago, was not aware nor told of any serious problems regarding this drug. People have ended up disabled, in wheelchairs, having a series of operations, and the pain is excruciating, apparently. The idea of a reduced dose of Prolia originates with Canadian endocrinologist Dr. Aliya Khan who Endodoc refers to as his 'superb colleague.' Good to hear from you, msw67, and thanks for inquiring about my side effects from Actonel. So it looks like you're being tested for CTx markers every month or two and that the idea is that the figure should keep increasing. Should be easier from there and let you know how Im travelling. That is apparently what increases the bone density on DEXA scans, and presumably is why people have atypical femoral fractures and probably the rebound fractures further down the track - the quality of bone is very poor. Unfortunately it's only the heavy-duty meds which will get one off Prolia safely, I understand. My new GP tells me she has about 200 patients on Prolia. Do not stop, skip or delay taking Prolia without first talking with your doctor. (I'm trying to describe this briefly; it took them longer to explain it). Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked. Alendronate (Fosomax) is the drug of choice for hopefully maintaining bone density and preventing rebound fractures after stopping Prolia according to my Stanford doctor. There is a weekly enteric coated version of risedronate which apparently only starts to get absorbed once it is in the large intestine. Please do not suffer by remaining undiagnosed! If someone told me to "do this for 2 years and you'll be fine", I'd follow their advice religiously, but every supposed way of mitigating rebound fractures seems to be hit and miss at present. Even Prof Lamy says "there is no recommendation for the management of VF/MSCVFs occurring after denosumab discontinuation." In 2014 and 2015, my spine remained stable at -1.9 although the BMD lost a little bit. I was due to see him again in April. Here I have a regular GP who knows who I am when I walk in, is across all my medical issues, and makes referrals accordingly. It's wonderful to hear a success story of stopping Prolia safely. 4. Any use of this site constitutes your agreement to the Terms of Use and Privacy Policy and Conditions of Use linked below. I think the risk of fracturing is higher the longer you've been on it. Has anyone suggested a reclast infusion? I rely appreciate it. It might be worthwhile getting in touch with Endodoc as he certainly appears extremely knowledgeable and is across all the issues with Prolia. When I asked the endocrinologist at my appointment 2 months ago why she didn't tell me that one couldn't discontinue Prolia safely because of rebound fractures, she said "we didn't know". As a matter of interest, is there any reason why you didn't opt for the Reclast infusion first off instead of the oral Fosamax? In the 12 months from when I was first diagnosed to 2013, my spine increased by 3.9% from -2.2 to -1.9 although my total hip decreased by 4% from -3.1 to -3.3. On Monday, I will phone my RA nurse because I have other problems to discuss as well. I found a paper which is a guide for dentists to be able to gauge a patient's risk of getting ONJ. I hope you found an answer. Oh, how nasty re the fall down the stairs and that seems to have been the catalyst for your being put onto bisphosphonates, first pamidronate, then ZA. The cynic in me says that maybe there's some residual Prolia effect suppressing my bone turnover as it's only been 3 months since my missed injection, but time will tell. It is truly appalling. It is not known whether Prolia is excreted into human milk. I'm sorry to hear about your uveitis on top of everything else. My endocrinologist who is across all this stuff said "you're lucky you only had 4 shots" which is why I came to that conclusion. Crazy that you had to go through this in the first place. My NTx was 45 in Feb 2018 before I started Prolia in March 2018, so <50 as targeted and just below the middle of the reference range. There is a bit of an overlap there from the osteoporosis point of view as I saw one here for several years at one of our teaching hospitals after I was diagnosed with osteoporosis. Hi again and thank you for your sympathy & kind thoughts. But there are choices other than Reclast. How long had you been on Prolia, by the way, and when was your last injection ? I only saw him once, in January and was due to see him again in April, this had to be postponed till ? If a dose of Prolia is missed, administer the injection as soon as the patient is available. The prevalence of these new vertebral fractures is still u I spoke to the new endocrinologist on 23 March and she's kept me on the Actonel until our next telehealth consult on 13 July. Both she and my new GP have no first-hand experience in getting their patients off Prolia as they tell me that their patients haven't had any side effects. Cant be seen on X-rays. Denosumab is an effective treatment for osteoporosis. This is because the bone-density building benefits of denosumab are lost quickly after you stop taking the medication if you do not follow up with a few years of a medication like bisphosphonates. I was never told I couldn't stop OR even be late taking a dose. I expect that will also happen with you on Actonel. The decision ultimately needs to be yours on what choice you make; however, I would add that if two doctors are saying the same thing there must be something to it. She did suggest that I switch to Fosamax, but I was loath to do that as I've sort of made friends with Actonel after a year, and prefer the enteric-coated bisphosphonate as I have enough digestive issues as it is. I am due for a bone density scan. Have a wonderful time over the festive season! But I know there is something else going on, not that I want to have anything else wrong but I know there is another problem and I need to know, even if nothing or little can be done for it. 1 shot every 6 months could mean fewer doses. Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine. They have now put you in basically a no-win situation..I hope what you're doing now will help you. I'd been on Prolia several years and because of a change of doctors (one retired) my shot was a few weeks late. All bone drugs do not treat the root cause of osteopenia or osteoporosis.

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