how to discontinue prolia

Hopefully people are being informed by at least their GPs as to what could happen (I'm not sure how your system works in the UK - you say you had your injections at your local hospital). Administer Prolia via subcutaneous injection in the upper arm, the upper thigh, or the abdomen. I walk slowly like a very old woman!! I wish you the best for your future health. My doctor was really happy and said: "Just keep on doing what you're doing". Furthermore I don't think that such a pinned post available here would be nearly as diverse and difficult to navigate as what could be achieved here. I thought I was doing everything right. You are encouraged to report negative side effects of prescription drugs to the FDA. Prolia reduces the messaging which increases osteoclast activities in the first place. So I made an How risky is it to stop Prolia after one injection, concerning the \\"rebound\\" effect? Always felt really energetic prior now not so much. Do you intend to try to stop the osteo drugs once the situation is more stable? Hi springcross - it sounds like you were fortunate enough not to have a femoral fracture despite the pain in your right femur. Yet, I used to be very active. I didnt know, nor did the nurse who gave me the injections tell me it was dangerous stopping prolia. It is described as an "anti-resorptive agent", meaning that it stops the normal breakdown of bone that occurs in the normal turnover of bone in our bodies, while allowing the continued production of new bone leading to an increase in the bone density. Apparently zoledronic acid being so potent is the worst for developing ONJ. I know how difficult it is being on one's own too. Another issue is the groin pain you mention. 1 shot every 6 months could mean fewer doses than most other osteoporosis treatments Bone turnover markers (BTM) are blood and urine tests that detect products of bone remodelling to help determine if the rate of bone resorption and/or formation is abnormally increased, suggesting a potential bone disorder. I also have been off Fosomax for 3 weeks due to heartburn issues and my CTX numbers are back in the 300 range. I ask because I understand from reading everything I could find on the subject that the more bone density one Prolia builds up, the more that is lost on stopping. However, I will ask to have MRI of my spine and of femur to check for any small fractures of bone. Prolia may lower the calcium levels in your blood. It might be an "off label" use of the drug, so you would need to find someone who really knows what they are doing. It's wonderful to hear a success story of stopping Prolia safely. Re women going off Prolia: I suspect in years to come there will be an increasing number of women discontinuing Prolia, not only because of the side effects which can become worse the longer one is on it, but also because they HAVE to stop. Is Prolia provided in different methods? Fax: (202) 682-2648, Website Design for Healthcare Organizations by Blackbaud, Stocks, Workplace Giving & Other Ways to Give. Hi Arcadia. My doctor suggested i restart prolia! It sounds as if your doctor was ill informed if he said you could stop Prolia after three injections. Have you read Lamy's article on stopping Prolia? I think that is the scary bit - trying to decide when to reduce the dosage and let go of the security blanket, so to speak, if that's what you want to do. In Australia so hopefully will mention Actonel to my GP while going to Chinese herbalist I have read may help. So I wondered if your position was similar. I am still curious if there is some way to preserve the bone density gains from Prolia. In a Has anyone had sacral ala (pelvic) insufficiency fracture while on Prolia and/or a bisphosphonate? Reclast (zoledronic acid) was mentioned to me as an option by a couple of doctors in the early days of this little journey in stopping Prolia, but I wasn't (and am still not) keen after my bad experience with Prolia side effects. What speciality of consultant should i look for? By the way, the pain in my femur disappeared a year after the infusion as I didn't have any more (at least I think that's why). To be honest, I can see I haven't been monitored very well for the osteoporosis, either by the GP or the osteoporisis clinic of the hospital. 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 started Prolia in 2013 and stopped it in 2017 to undergo necessary dental treatment. Ultimately I was prescribed Actonel (risedronate) 35mg weekly which I took for 2 weeks but had to give up before the 3rd tablet due to intense neck pain, severe dizziness and vertigo as well as slightly blurred vision. magnesium, vitamin K2, boron, zinc, vitamin C, curcumin, vitamin B complex, etc. I agree. How long had you been on Prolia, by the way, and when was your last injection ? Prolia doesnt build bone. Multiple Vertebral Fractures (MVF) Following Discontinuation of Prolia Treatment: Following discontinuation of Prolia treatment, fracture risk increases, including the risk of multiple vertebral fractures. Hi again and thank you for your sympathy & kind thoughts. if they do not start taking a new osteoporosis treatment. I understand that Prolia has only been proven to be "safe" for 10 years but, when I questioned the endocrinologist as to what all the people who had been on Prolia for 10 years were going to do in terms of stopping it without experiencing fractures, she said that by that stage they would have done more trials proving that it was safe for them to be on it for 20 years! Hi Arcadia10, if you wish you can email the Helpline nurses with your queries instead, at nurses@theros.org.uk . How are you going? In 2016, I had a change in personal circumstances and became a bit slack in taking SC and I think at the same time the brand I was using (Doctors Best, ordered from the US) was discontinued and it wasn't so easy to source SC in Australia, so I just forgot about it, meaning to get back to it. What did we do before the internet! 100 was top of the list - high risk, which frightens me. I'd been on Prolia several years and because of a change of doctors (one retired) my shot was a few weeks late. How are you doing? Unfortunately, the nurses' knowkedge is limited (although some of them do know a lot, of course). I'm looking for ideas about this. Low numbers show that the drugs are suppressing bone turnover. 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. On Monday, I will phone my RA nurse because I have other problems to discuss as well. Its taken me a long while but I now no longer take everything my GP tells me as gospel. Again, I've been using Lamy's article as a guide. I am so sorry this has happened to you! You must be relieved that your CTx has stabilised, so your bone turnover is obviously under control. Withdrawal symptoms happen when you . Approaching the 2 year mark for fosomax (2.5 years since last Prolia shot). My first metabolic bone study on this regimen will be 8 June when I'll see what the bone turnover markers are doing. Here is his reply to my email: You are right. Doctors just don't know all they should about what they're prescribing, and the clinical trials are also often too short to be reliable indicators of results in the long term. Great that you declined to take it. How do you inject Prolia? For women with osteoporosis after menopause at high risk for fracture. Regarding Paget's, no I don't have that. I wasn't willing to roll the dice on taking nothing. What is the most important information I should know about Prolia? Anyway, it sounds as if you're not having these tests done, and I'm surprised by that. The administrators have to be the ones to pin posts and there are so far only a couple of such posts, very generic, for this community. Self-Care Tips: If your Prolia treatment is stopped, talk to your doctor about other medicine that you can take. Thanks for the good wishes! So the issue now is the way forward and that largely depends on your bone density. What if people HAVE to stop taking it because it hasn't proven to be safe after 10 years of use? So it appears that the most significant treatment effect that Prolia has is in the spine, hence the superior increase and then catastrophic decrease resulting in multiple vertebral fractures. Denosumab has proven effective at building bone density and reducing spine and hip fractures. She explained Prolia's unique mode of action and that when you stop it, you can lose the bone it saved -- and more!!!! Interestingly, being on Prolia did nothing for hips but my spine improved to -1.1. I started taking SC when I was first diagnosed in 2012 as I didn't want to take bisphosphonates. Always flu like symptoms. Never again! Perhaps someone else on this site can provide some input. 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. Yes, the research shows that many women do show bone increases. Happy to hear you found it interesting Arcadia10! Are you still on the alendronate? I can only share my own terrible experience. I'm back on it now and am afraid to get off without a safe plan. Sometimes everything just gets overwhelming. Good to hear that you're on Fosamax (which I read is the second choice after ZA) and apparently haven't had any problems, either in taking it or in terms of fracturing. Whatever, the problems were enough to make you stop having Prolia injections - which is the beginning of problems on a different level, unfortunately. And I do hope to stop Fosomax when the danger has passed. I can only imagine your frustration. So not sure why CTx should optimally increase and NTx should decrease. One doctor I spoke with said he is only prescribing it for his elderly patients. She stated that once a patient received two or more Prolia injections, there is a risk of the rebound effect (i.e., rapid bone loss and increased risk of fracture) at the discontinuation of Prolia. 5. ONJ is osteonecrosis of the jaw. This gives us a viable option for when she is completely", "Thank you for your response to my question. So another one crossed off the list! Why OP drugs in the first place? It's now seven months since the second lot of fractures were discovered and I'm hoping that they have healed. When will everyone wake up and realize what are doctors are doing to us? I went off it cold Turkey because I didn't trust what they would do next to me. My new GP tells me she has about 200 patients on Prolia. In clinical trials, results also suggest that people who stop taking denosumab and did not start another treatment. Of course, you might have already decided to go with the reclast infusion, but I'll throw this into the mix. I asked her about Actonel and she said not proven. I have postponed the oral surgeon consult due to covid and not really wanting to get a reclast shot. The guide below will help you find the insurance coverage most like yours. This is quite shocking, she could see the pain I was in. My DEXA in Feb 2021 shows that my bone density has not quite returned to what it was prior to starting Prolia in Mar 2018 - an unexpected surprise. It's easier for them to tick a box, job done, regardless of my problems. 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. And I decided on Fosomax after Prolia for 2 reasonsseemed like it maybe worked better in preserving bone density and I didn't like the idea of a yearly injection. I've tried our osteoporosis organisation here (Arthritis and Osteoporosis WA) but they can't give out any medical advice. It might be worthwhile getting in touch with Endodoc as he certainly appears extremely knowledgeable and is across all the issues with Prolia. Thanks, Heron - lots of valuable information there, especially regarding specific supplements which are easily available OTC or online. Hope this helps. He decided I was to go on Zolendronic Acid so I had one infusion of that and I was told I would not have to go back for a year. I had my BTM done at least once a year after being diagnosed with osteoporosis and before I started on Prolia to see how things were tracking (as I had refused medication). I now check everything. I am showing it to my doctors however. I do have an RA consultant, had one since this began in my late 30s. Luckily I never have anything more than a 6-monthly scale and polish - and intend to stop the bisphosphonate as soon as I am confident that my bone turnover has been suppressed enough for me to be beyond the fracture danger period. However, an increasing number of patients are developing so-called rebound vertebral fractures, because of a considerable increase of bone resorption after cessation of denosumab therapy. 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. By comparison, the reference ranges for NTx are: Premenopausal: 17-94 nmol BCE/mmol creatinine, Postmenopausal: 26-124 nmol BCE/mmol creatinine. You're a year ahead of me in this (I had my last injection in Sept 2019) so I'm learning a lot from how you're managing your situation. So far neither the osteoporosis specialists I have been in touch with nor the manufacturer of the drug seem to have practical information about this. Hopefully the daily Forteo injections will be effective in building up good, healthy bone. Take care, and especially in light of your increased vulnerability if exposed to COVID-19. Anyway, I was referred to the area specialist osteoporosis clinic who organised Forteo for me. I have been on Fosomax for a little over a year (my last Prolia shot was October 2018). Just a few weeks after that shot was due (when I was waiting to see the new doctor and get that Prolia shot) I had a backache like I've never had before in my life. As I live in a city, I just take it for granted that I can switch to another healthcare provider if I'm not happy with the one I'm seeing. Thanks again for the help and advice and kindness. Sorry to bombard you with questions but you and your doctor appear very knowledgeable about all of this and I'm still groping around trying to navigate my way out of this mess. The package insert mentioned ONJ and atypical femoral fractures but I was told these were extremely rare by the endocrinologist who prescribed me Prolia - and that none of her patients had any problems with it. Yes, I did eventually found out what ONJ is, but thanks for explaining. Dr. Khan is a scientific advisor to the IOF. 1699 sounds dangerous to me. Your GP should be managing your referrals, though, telling you where to go and who to see, but I understand this is somewhat different in the UK to Australia. Bone Drugs, Bone Health, Osteoporosis, Prolia, Since You Asked, 1413 K Street NW, So I don't intend to continue with prescription meds and am aiming to go down the natural route. Hi JGBH - I'm only too happy to help if I can with my limited knowledge. What a great thing is to have now a reliable GP Endocrinologist. It is appalling that doctors are still administering this dangerous "medication". I belong to the PMR community and we are extremely active and the people who run that community have pinned so many threads over the years they've just created a FAQ pinned post to gether together ones like my one on osteoporosis and a lot of others. After your treatment with Prolia is stopped, or if you skip or delay taking a dose, your risk for breaking bones, including bones in your spine, is increased. At the end of 2017 and in 2018 I had total knee replacements and the biologic drug I had to help slow down the RA stopped working, having work very well for over 17 years. When I raised my eyebrows in disbelief (because I have since come across papers published in the medical literature in 2017 that document this problem - a year before I was put onto Prolia), she said "well, actually we did know - we just didn't accept it". Prolia is a prescription medicine used to treat bone loss in women who are at high risk for fracture receiving certain treatments drug treatment is not working for some reason or, if treatment is not yet being given, that maybe it should be considered. It is in a little vial that is injected. There will be masses of people having rebound vertebral fractures - and their bones will be in far worse condition after 10 years of turnover/resorption being slowed than mine are after 2 years. (thought it was earlier). Hopefully she will be amenable to your suggesting you have your BTM monitored or can tell you why she won't order it. Endocrinologists or? Please keep me posted on how you are doing. I was rather dreading getting them. I've not had any side effects at all. One would hope for at least some improvement to have made the whole exercise worthwhile. So much is at stake when withholding critical information like this. I have explained my concerns but I don't think she really knows enough about this and have been referred to the osteoporosis clinic at the local hospital but my appointment has been temporarily cancelled because of the pandemic and I am in the high risk patients, shielding. At least, this is what Ive been told and is what Im doing after having been on Prolia for 3 years. ONJ sounds nasty and I'm not surprised that you stopped taking Prolia because of this potential side effect. Don't leave it too long. The bone markers are key. Hopefully the next CTx will be similar and you're beyond the fracture danger period. In the literature, they keep saying that "studies need to be done". Because of the potential for serious adverse reactions in nursing infants from Prolia, a decision should be made whether to discontinue nursing or discontinue the drug taking into account the importance of the drug to the mother. At least you could then explain your concerns to him without actually having to go to the hospital. A further MRI six weeks ago didn't show any new fractures. It took quite a few months of work to clear the problem then remove the tooth and eventually put in a new tooth. It appears that it is more efficacious in this regard than Actonel if you look at my CTx results by way of comparison. As to a "smaller dose" again, even if I could get someone to reduce the amount in the prepackaged vials I have no evidence about the safety of this. And, regardless of their attitude, you have a right to appropriate medical diagnosis and treatment. The protocol is very complicated and requires prescription drugs and I could not do this on my own. That's a significant achievement! 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. I am the only one (apparently) to report any side effects and thus have had to stop having the injections. I was on Prolia starting in Oct 2015 with my last shot in Oct 2018. So you're not really "trapped". I don't take a Vitamin D supplement, but am outdoors a lot in a sunny climate. The idea of a reduced dose of Prolia originates with Canadian endocrinologist Dr. Aliya Khan who Endodoc refers to as his 'superb colleague.' One of the nurses saw my post on this site and suggested I do so. Reclast stays in your system for at least 12 months, so one might be stuck with unpleasant side effects for a long time. He would be able to order the scans and tests for bone turnover markers if you don't want to ask your GP to do this. I was just sending you that link to show you what the FAQ, which has just been started and is a work in progress, looks like in that community. It is as quick and painless as a flu shot. I had no facility fractures prior to the Prolia rebound fractures. I had 6 injections over 3 years because at the time I was told that any more than that risked atypical femoral fractures. Ultimately, I think they've got too many patients to be able to give you their undivided attention and care. Take care, all the best. Prolia (also known as Denosumab) is a drug used in the treatment of osteoporosis. Posted by kdryder @kdryder, Mar 5, 2021. 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? Would you have to return a stable CTx for a period of months before deciding it's safe to stop? They have no right to consign you to the scrap heap because you're "elderly". A December 2018 scan showed that spinal bone density had plummeted to -3.7. Prolia is a prescription medicine used to treat osteoporosis in men and women who will be taking corticosteroid medicines I forgot to mention side effects-once off arrhythmia, once off vision loss,always chronic muscle and joint pain. Prolia is a prescriptionmedicine used to treat bone loss in women who are at high risk for fracture receiving certain treatments for breast cancer that has not spread to other parts of the body. I've decided to see an endocrinologist as I want to hand the management of getting off Prolia and then getting off Actonel over to someone else. They have now put you in basically a no-win situation..I hope what you're doing now will help you. Olivier Lamy is a Swiss professor at the Lausanne University Hospital. Prof Lamy wrote the definitive guide to discontinuing Prolia safely in his paper Stopping Denosumab (2019) and I have been following his protocol as a guide, but using Actonel instead of the recommended Fosamax. 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