Stopping prolia.: Has anyone sucessfully come... - Bone Health

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Stopping prolia.

Has anyone sucessfully come off Prolia and not had a fracture? I don't want anymore of this stuff. I've had 3 doses so far. Is it inevitable that you will fracture after stopping? Hope someone out there can help.

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I have not taken prolia - very nearly did, but in the end refused because of the possibility of joint pain and I was not prepared to take that risk as I have enough joint pain now as I suffer with osteoarthritis. I now feel that I definitely had a lucky escape.

From what I have read about stopping prolia and in this community too and from what the doctor said to me in the endocrinology department about possible rebound vertebral fractures on stopping this drug I would never suggest to anyone to stop Prolia without making sure they are first put onto another OP drug.

That is my view on stopping prolia.

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It seems this is a problem even if you've only had 3 injections. The full course is 10 injections over 5 years.

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I believe the advice now is that if you have started Prolia, to stay on it for life but of course not everyone is able to do this if suffering side effects whilst taking it. There should also be no delay in getting the next shot of prolia other than in the window the medics provide.

As Heron says there should be no delay in starting another OP medication if thinking of stopping Prolia.

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Sadly some of the ladies on the NOF forum have had fractures whilst on Prolia.

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I had such a narrow escape as Prolia was suggested for me but I declined saying I did not want to take the chance of more joint pain as I have it already due to osteoarthritis. I was then told about rebound vertebral fractures by the doctor who offered it to me. Nothing said before I declined though....

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That's disgusting, really glad you didn't go ahead with it.

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Can you send me a link to where it says that the full course is 10 injections over 5 years? What date did that start being the recommended course?

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Hi it's just what the nurse told me is the usual duration of treatment. But you then have to go on something else instead. But i do believe if you have been ok on Prolia that you maybe able to continue on it not too sure.

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I have been on Prolia since 2012. Never had any side effects. It "improved" my bone density tests. I am 63 and take calcium and work out. I have no pain. Apparently NO-ONE has been able to successfully stop taking Prolia without fractures. Many who have answered this post only have horrible things happen. I am wondering it there really is a way to wean off of Prolia, since there hasn't been one post from someone who has successfully weaned off of this med, I feel I just should stay on it forever. I went from osteoporoisis to osteopenia. It would be nice if someone could share that how and if they successfully navigated how to get off this drug. For now, I am going to continue on it.

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Such a boost to read your post, I am due to have my first injection next month. Can I ask did you suffer with any pain before you started your injections?

I have benn in chronic widespread pain for many years, I have tried steroid injections and ended up with my first spinal fracture after my second shoulder injection. Do you suffer with any jaw pain, I am really concerned about the side effects but after trying two different tablets and not being able to stomach either of them, my Doc feels the injection is my last resort. I have gone from having an excellent delta report 20 months ago to now being told I have osteoporosis.

I would love to hear your thoughts. Xx

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I took myself off it after injection number four. I did not go on anything else. I never had bone problems to begin with and since I do not trust my oncologist any more, I did not go back to him. I had merely been put on it for "prevention" due to taking estrogen blocker. I have since gone off the estrogen blocker as well, and at the advice of holistic doctors, I am taking other supplements to block bad estrogen and am doing lots of good things for bone strength. I went off Prolia because it has changed my body chemistry and I "feel" very strange all the time, like something is moving around inside me. Also it has made me lose the outer layer of skin on my lips, so I am always feeling saliva in my mouth and a horrible texture on my lips and all around the inside of my mouth. (the sores on my tongue came first and then went away) It affected me very differently from how it affects most people. I have been 8 months "clean" now and am praying that I do not get a bone fracture or that weird thing happening to people's jaws. My mouth is a mouth of misery and I keep waiting for it to improve. So far, NADA Anyway, I will be letting people know if I fracture a bone or not. So I am one person "so far" who is ok for my bones. I suppose if you started out with bad bones and have been on it an incredibly long time, you will never be able to go off it without going onto something else. Anyway, they all lie so much, I can't believe one word they say.

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Yes I agree with Kaarina. It also seems there should be NO DELAY in starting the bridging medication, which may perhaps have to be taken for about two years, because people who've had to delay a Prolia dose for whatever reason have also suffered fractures, even if they had no intention of stopping the drug.

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I was advised to take the top 3, prolia, Reclast, or Forteo. The first two are bisphosphonates and can ( not always) cause fine cracks. The Forteo sounded better with less possible drastic side effects but you can only take it for 2 years and then have to choose one of the bisphosphonates anyway—it’s like walking through a mine field out there! Big pharmas seem to be in the driver’s seat while we struggle for our lives—hormone therapy seems to be less dangerous but in the US they won’t use it after a certain age—I read in Europe they use bio identical hormone therapy and I asked one doc ( one out of 3-4 docs I’ve seen) about it—saying it was used in Europe—with women in their 60’s and 70’s—the doc just said well that’s Europe! They all have the same pills in their tool kit & no thinking appears to be allowed.—

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Did you end up taking anything? Or have you been able to start a natural regimen? My understanding is in serious cases a couple or at most three years of a bisphosphonate (but NOT denosumab - Prolia) can be beneficial, the problem comes with prolonged use as new bone is laid over an aging matrix. Whatever people decide I think everyone needs to be given good advice about natural means of improving bones, as that can do nothing but good and even gets one off on the right foot once a medication needs to be stopped.

healthunlocked.com/pmrgcauk...

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Thanks for asking HeronNS! I’m in limbo & a little bit in despair as I’ve not been able to fight my way out of this—I am interested in your research that you found about SOME Bisphosphonates being helpful. I’ve been lumping ALL bisphos. in the same category—potentially causing small cracks and therefore fractures and also staying decades in your system. I was interested in Forteo but it became a no when I found out you have to go right back on one of the many Bisphos anyway. ( waste of time?) is there a link or book you might suggest where I could investigate less harmful meds in the bisphos. category? Or if you could share your own findings on this question, that would be wonderful to hear. On a second question, I read that RA and loss of hormones cause osteoporosis—and if so why not deal with RA meds first? ( I have RA too) and hormonal issues? ( I understand in America they won’t use hormone therapy with you 10 years past menopause..but in Europe they do). So they first prescribed the biologics for RA and just recently a scan showed the hip was osteoporosis—so I’m trying to understand two powerful meds at the same time.... the pain & fatigue makes it challenging & that’s why your research is helpful ( even knowing we all react differently). Thank you for generously sharing with everyone!

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The link I sent above has a reading list at the end. Some of the links may no longer work because it's been a few years, but book titles are there also.

A good website is Susan Brown's Better Bones. She does sell supplements and equipment but you can ignore that part. You can google her.

I personally would never take a bisphosphonate, but I haven't needed to. I merely point out that if you are in more serious condition than I was it is probably safe to take a bisphosphonate for a couple of years. It's the longer term use which leads to the spontaneous fractures, hairline cracks and so forth. So far as I know. I do, however, know of a couple of people who have worked their way out of the osteoporosis range without ever doing more than what I suggest in my little essay - the nutrition/supplements and appropriate exercise regime. I honestly believe that more people could manage this way if they were given the information and support. Doctors simply don't know and most doctors believe you can't rebuild your own bones naturally. Not so - you can! But I am not medically trained and cannot advise what others should do. Can only give my own experience.

The most likely cause of fracture is falling, so maintaining and improving sense of balance and avoiding precarious situations are the best way to keep from breaking anything.

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Should have clarified this three months ago, but in case anyone else comes along and reads this post: Prolia is denosumab. It is NOT a bisphosphonate. Bisphosphonates can lead to hairline cracks and spontaneous fractures and jaw problems but usually after several years because new bone is being laid over an aging matrix. Denosumab (Prolia) works differently and when it is discontinued the bone remodelling cells bounce back and take away too much bone too fast and cause rebound osteoporosis - a direct result of discontinuing the drug, nothing to do with the original diagnosis.

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Thanks for clarifying—I think I was lumping all Osteoporosis drugs as either bisphosphonates or not—( and didn’t realize some without bisohosohonates aren’t necessarily without significant side effects) I was interested in forteo as it didn’t rely on bisphosphonates—but then again after two years they want you to pick something else or else they tell you, it will all come back. Have you ever read or heard of anything that might go with forteo after two years—I don’t want to have to go thru worrying about fine cracks or fractures due to my own medicine pick!

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I'm afraid I don't know anything about the after effects of teriparitide. In fact it was for a while being suggested as a good drug to go on to deal with the rebound osteoporosis of denosumab. The more I learn about these drugs the more I wonder how anyone dare take them. There was a study done a few years ago, and I wish there were more studies like this, which showed exercise diet and supplements increased bone density at the same rate as the drugs do. And no side effects. A number of us have opted to refuse the drugs and have been successful in increasing our bone density solely through these means.

I think anyone who has been diagnosed with osteoporosis needs a proper assessment from a physician to make sure there isn't some cause for the osteoporosis which should be dealt with - calcium, vitamin D levels, parathyroid, other medications, the whole thing. Then a discussion about how to improve the bones through natural means. This can include instruction on techniques to protect the bones.

hindawi.com/journals/jeph/2...

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Hi HeronNS, that’s an amazing study... very rare to see something like this! Can I ask if you use any specific sites for research on Osteo or RA? I signed up for a scientific one for RA but it makes you drool for the future as the benefits won’t be available to patients for some time.

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I collected a lot of information back in my early days when I was told I had osteoporosis and this one was mentioned somewhere. It wasn't on hindawi at the time, and I think it may have gone behind a paywall on the site where I saw it originally, haven't checked lately as hindawi is available. I have told lots of people about it so I think it probably gets a lot of traffic if people have been sharing with others. Doctors really need to know this sort of thing because too many of them were told in med school that osteoporosis can't be reversed without meds and that is simply not true. I do think we all should get a lot more instruction on how to look after our skeletons from a much earlier age, not when we are already on the downward slope.

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Spot on! It sure could save a lot of grief and pain—I now wince when I see stories here with women diagnosed with “osteopenia” and then told to get on prolia!

I’m so glad you are able to share this knowledge—!

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Here is the sort of thing I've found. I ask specific questions of google and this is how I find answers. As I used to work in a library I have a pretty good idea how to sort out valid research from pie in the sky.

ti.ubc.ca/2012/01/24/a-syst...

ti.ubc.ca/2011/02/23/bispho...

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HeronNS, I think everyone being asked to get on bisphosphonates, first read these studies that HeronNS posted above! These studies are large and long term ( one is 8 years long) and seem to be independent—no vested reason other than the truth. These are summations which I need to re-read and you can get the full versions if needed. It’s exciting to see some hard evidence and research being done! I often wonder what other countries are doing for RA and osteoporosis—thinking that it just has to be better than this! I saw a documentary on Cuba’s approach to health and they involve the patient as part of the decision making team! The docs and nurses gather around the patient’s bed and they all discuss options—none of this here is the drug I’ve picked for you and your next call will be the nurse who will set up a meeting to show you how to use it—-ah but what if I have questions about this? What do I do? Use the portal? Answer yes.

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I too have stopped taking prolia. I had two shots and then terrible pains in my arms and leg and hip. I have cancelled my third shot and will not take another one. My arm pain has improved but my leg/hip still bothers me. Hoping this will improve with time. Let me know how you're doing. Good luck

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I had my last (six month) injection in April or May of last year. I did not go back to the oncologist in October. I am so angry at them for not admitting it's Prolia making me sick. The lining of my lips is so thin that I have to keep swallowing a weird taste. Also I have a strange wind or current that goes through my body , pushing me a bit forward like I'm on a cruise ship when I walk . Sometimes it kind of swirls inside me. This is not normal stuff you can find on the internet. But I can live with it. I thought by now Prolia would be out of me. maybe it will take two years. Maybe at that time, I could lose these effects and get a fracture?? I have no clue. I never really needed this poison inside me. It was given me as a mere precaution since I was doing estrogen blocker. I took myself off that one too. I am doing DIM like my natural doctor suggested. If you are taking Prolia for a serious matter, I don't know what to tell you. Surely there is something better out there for you than this horrible drug. Good luck. (and surely there must be folks not getting bone fractures. I wish I knew the statistics, but I am following my natural doctor's advice: getting lots of vitamin C to help me absorb calcium, also GOOD calcium supplement, vitamin D and K).

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I have had 3 shots. Ok on first one but don't feel well now got constant upper abdominal pain. Doctor was adamant i went on them because my bone density is very bad but i have never fractured. I'm not that elderly i'm 58. I've only found out that you have a very high risk of fracture of the vertebrae if you stop that can happen some months later. How many shots did you have? I wish i never went on them. Hope you remain ok.

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I had four shots and did not figure out why I was having weird effects until the fourth one when my tongue got super red and my mouth blistered. Then I became certain because all the other things were gradual. let's pray that we do not get the fractures they speak of. I forgot to say to you: work with weights and get all your nutrients as much as possible from your FOOD (though supplements may be necessary). I'm eating very healthy and crossing my fingers.

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I could kick myself for having s 3rd shot when the second one started to make me feel unwell but i was talked into it by the Osteoporosis nurse. Have you tried the weighted vest? I think i might look into it.

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I don't know anything about a weighted vest. I was never in real need of Prolia. It was given to me as "prevention" against bone loss when I did not even have real problems to begin with (because I was taking estrogen blocker, which depletes calcium) To think they are giving Proila so needlessly to cancer survivors just slays me. i wonder if they are getting kickbacks or something. Alternative medicine has other solutions for us that traditional medicine will not even look at! I wish you good luck with your health. I started to feel MY effects after shot number two , but it was so mild at that time , I did not connect the dots until shot #4. It could be a blessing in disguise that I got my weird side effects. otherwise I would still be having this poison being injected into my body.

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Weighted vests are not suitable for anyone with vertibrae fractures or poor T scores. Anything weighing heavily on the shoulders causes more compression.

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Hi. I received 2 shots of Prolia and stopped. During the time I recieved these shots I developed a huge bone spur in my heel that I needed surgery. Also my knee became necrotic and I just underwent a total knee replacement. Since the shots my life has changed in many ways. I stopped the shot and I have had no fractures. I am 5 months out from when i was due. I am 52 years old and probably never should’ve received those shots. I am on regular calcium and magnesium right now with vitamin D. No problems yet. FYI if there’s anybody out there that wants to take legal actions I am in. I called several lawyers and nobody wants to go after company because there’s not enough people.

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I believe there are enough people, if the comments seen on forums like this are an accurate picture of what patients have been discovering. There needs to be some huge public outcry, which could be triggered by the media doing an expose so that the patients realize they are indeed not alone.

I think at least in some countries there is the stirring of interest:

pritzkerlaw.com/recall/medi...

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I guarantee there will be a class action suit at some point. This stuff is poison. I feel so betrayed by my doctor brushing off my concerns and convincing me that it was safe. I had it one week ago and feel like my life has been destroyed. I'm only 46 but have had vertebral fractures in the past. He didn't tell me specifically that rebound vertebral compression fractures could occur. I now feel like I have the flu, every joint hurts, I am getting random shooting pains in my ears, burning in my shoulders, knees, hips and hands and legs are so stiff I'm walking strangely. I'm extremely fit and active. This is evil evil evil!!!!!!! I want my life back.

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It's SO EVIL. I really hope they make a huge lawsuit and that I can be involved!!!

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Poor you it sounds like you've had a bad time. Do you have osteoporosis? No one told me about the nasty side effects. When i told the nurse how i feel she denied it was anything to do with the drug. She also said you can't just stop it because of high risk of fracture of the vertebrae. Can you believe just after 3 shots that it could have that effect. I don't want anymore of them. I do have a bad bone density but never fractured. I am 58 and think could end up being on these for years. The more you have thd more risk of the nasty side effects. I take calcium and vit D. I think i will just take my chances and hope it does'nt happen. Good luck i hope you recover soon and remain fracture free.

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My doctor AND nurse both insisted I should stay away from the forums and not listen to all the negativity. give me a break. They ruined my life. Anyway, I am looking at it as a blessing in disguise. My side effects may finally go away and just think if I had never had the effects. It means years down the line, I would be a total WRECK because I'd have continued letting this poison invade my body, unaware of the damage it was doing.

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Gee, wonder why the doctor and nurse want you to stay uninformed. Clearly, it’s not simple “negativity”, but serious, legitimate concerns, based on multiple experiences that evidence harm as a result of the drugs. Are they really suggesting all of these women reporting these serious harms are just being “negative” about their experiences with the drugs? Thank goodness there’s forums for this, or these women and the harm caused them would be silenced even more strictly.

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Nothing will ever be resolved unless everyone affected rises up and cries out to be heard. I wish I knew how to get the media to listen to us, or for any lawyers out there to be dedicated to collecting our info and helping us. Thanks for your concern, MiaLee. So far,it's the same thing with the mouth and the weird feeling not going away. When will they realize this thing lasts and lasts and lasts,instead of lying to us. So many lies!!

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Sadly, it’s just not our own concerns regarding osteoporosis. Our world seems to be taken over by Corporate greed that puts profit before people. It’s everywhere you look. Surely, there is a better way than this to conduct societies. They are like parasites on the rest of us. There is more than a passing resemblance to The Hunger Games. Maybe we do need to rise up, to save our children, and our grandchildren. Maybe it really IS time to rise up. When I think of my grandchildren, I think I don’t care about me, if I can change society to be more compassionate, kind, and fair, then anything would be worth it. Really.

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Glad you seem to be okay after stopping prolia on your own.

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Please count me in if you can find a lawyer to take our case. I am about five months out myself but I stupidly had FOUR shots. The side effects persist. One lady at a health store told me, "How long did it take you to get this way?" Well, then, expect that long to recover." By that basis, I have a year and a half left to go. There is one more thing you can do to increase your bone strength that my ND told me. Get REAL vitamin C (from actual food sources) C is the building block of calcium, he told me. I am eating tons of vitamin C as well as the other things you mentioned.

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I am very soon going to be putting all my energy into finding a law firm who will look into this again. Hopefully if we all join together we can stop this drug from poisoning more people or get physicians to quit pushing this on people especially when they are not informing patients of the side effects. My Dr pushed this on me like it was wonderful and talked me into getting it before I left office. A mistake I will never make again.

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Please remember me if you can find a lawyer who will actually go against Prolia. I heard that there was a law suit for those with fractures and now it's over. I mean, now they are giving that side effect on ads so you can't complain about it if you later got the fractures after the class action law suit. Too bad I never heard about it from my doctor. BUt nowhere on their list of side effects do they talk about MY two weird side effects, so anyone with weird effects, maybe we still would have a case since we were not warned of our specific side effects that could happen.

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I had my first dose and am crippled. If you find a lawyer let me know

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Count me in, too!

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OH THERE'S ENOUGH PEOPLE -WE ARE JUST NOT ORGANIZED -DAMN AMGEN AND THE DOCTORS WHO PUSH THIS EVIL DRUG...3 SHOTS AND I'VE STOPPED - AWFUL AFTER EFFECTS!!

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THERE ARE SO MANY OF USE SUFFERING INCLUDING ME- THE 3RD SHOT MESSED UP ALL OF MY BODY SYSTEMS...THIS IN UNBELIEVABLE....GLAD THIS FORUM IS HERE...!

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Do you think you will have anymore? I'm due a 4th one in August but I don't think I will have it. The nurse will try and tell me that it is in my best interest to have it and my symptoms are not linked to the Prolia but on 2nd and 3rd injection I haven't felt that good. I will be in fear of the vertebral fractures they say will happen once stopping this drug.

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Really outrageous actually, this drug pushing, and the brushing off of legitimate concerns regarding harm. Shows you how much our medical services are dominated by pharmaceutical companies and their interests, rather than interest in the public’s actually heath. What ever happened to ‘first, do no harm’?

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I really do believe that the nurse does think that this drug is the best there is for Osteoporosis but It's not her having it. She only knows what she has been told about it from the reps who work for the company who produce it. She even told me it would be her drug of choice if she had Osteoporosis.

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I wonder if she read through the posts on this forum relating to people and the harm they’ve experienced from the drug, if it would still be her ‘drug of choice’ . Sadly, no doubt when she is in menopause , she will be directed to a routine dexa scan, that will, unfailingly, indicate bone loss ( as they are designed to do), and she too, will be recommended these drugs.

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I do have osteoporosis. My fractures were postpartum at 31 years old. I did two rounds of Forteo for two years about eight years apart. Forteo is a wonderdrug. No side effects except it made me skinnier and stronger. I’m hoping the Forteo will protect me from any rebound from this evil shot.

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Sunny rose, that’s interesting that you had two rounds at 8 years apart—when given my choices for osteoporosis drugs, I chose Forteo but they said after two years of it, I’d have to get on one of the other drugs—and the only ones left were the bisphosphonates—I haven’t started forteo I as I can’t find one without so many potential side effects. They said if you don’t get on another one after two years, you just revert back to where you were. ( could it be you didn’t take your first round for two years straight..or that perhaps your density scores weren’t that bad?) Anyone have knowledge of this dilemma?

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Hi,

I had three lots of Prolia - two of which I had to pay for myself - at a ridiculous cost.

I just told the GP I didn`t want any more. I wasn`t told of any side effects - and to date haven`t had any ( two years ago)

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That is encouraging. I hope i will be the same. It is ridiculous that this drug has this side effect. What is the point of it improving bone density and as soon as you stop it the bones revert back to worse than they were before.

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BLESS YOU - SOMEONE WITH POWER AND AN WORLD WIDE AUDIENCE NEEDS TO UNCOVER THE TRUE HORROR OF THIS DRUG FOR SO MANY - START WITH AMGEN A BIG ''PHARMA".....I'VE DONE THREE AND THERE WILL BE NO MORE - LIVED A NIGHTMARE FOR SEVERAL WEEKS!

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LET'S KEEP REPORTING - I AM GOING TO CONTACT MY LOCAL NEWSPAPER - THIS IS INSANE!

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I had 3 injections., then cracked a tooth that needed to be extracted. Bad combination! I developed Osteonecrosis of the jaw last June. It is still an ongoing concern. I stopped the Prolia and have not replaced it with anything. The rheumatologist thinks ideally I should be on something, but because of the jaw problem will not give me anything. I do not want to go back on any of these drugs anyway. There is too much unknown.

Complicating my story, I went ahead and had much needed hip replacement surgery in late April. No fractures during surgery, thankfully! I am 4 weeks out and appear to be healing.

I am doing PTdaily and taking 1200 mg slow release calcium and 1500 glucosamine. I also take 50,000 unit vit D2 twice a month. I am taking life one day at a time. So far so good. I really don't want to live the rest of my life on any of those bone enhancement drugs.

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Are you also taking Vitamin K2? A good introduction: healthline.com/nutrition/vi...

Sorry about your experience. There really doesn't seem to be anything you could safely take.. I looked up teriparatide (Forteo), which stimulates the osteoblasts, rather than damping down the osteoclasts, but research has shown it does not sufficiently prevent the decline in bone density after discontinuing denosumab (Prolia). So what you are doing is probably the best way.

Glad your hip operation has gone well. Best wishes.

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Thanks for your comments. I will ask my doctor about Vit K2. It sounds like it might help both my bones and my teeth. Best to you.

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Don't be surprised if your doctor doesn't know about Vitamin K2. My daughter, who is a registered dietitian, hadn't been taught about it and knew nothing until at my suggestion she read a book about it (Vitamin K2 and the Calcium Paradox by Kate Rheaume-Bleue) . I think since then there has been more information filtering into the West from japan, where its benefits have been known for some time.

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Thanks for the warning.

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Actually, sadly, don’t be surprised if your doctor doesn’t know anything at all about vitamins or nutrition period. These days, it seems our doctors have just become mainly drug pushers and their ‘information’ is what the drug companies tell them. What’s happened to our world? It seems to be a total takeover by big corporations. They are like parasites on the populace; our food, our water, our healthcare, our air, our environment, and on and on; poisoning us and so much harm done, all in the name of big profits for the extremely wealthy 1 percent getting even wealthier.

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I stopped Prolia because I was getting bad headaches TMJ systems my teeth actually hurt so dropped 10 pounds only was eating soft foods. Only took 3 shots my one tooth number31 last tooth on bottom hurt me for 2 months went to dentist had a crown on it. Sent me to oral surgeon he said if it bothers you extract it so I removed a healthy tooth.no more pain . 2 to 3 weeks later I developed painful lesions in my mouth. Went back to oral surgeon. Said it was Osteonecrosis from Prolia. I’ m due now for the shot but not taking it anymore I know I have to watch for fractures. Waiting for a big Lawsuit to start. Please think twice before starting this drug.

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