I received my first injection of Prolia early June. I have had some side effects and decided not to take anymore. My question ( for those who have taken Prolia) is have you gotten any adverse effects from stopping the drug. In the pamphlet it says that your bones go back to whatever condition they were in prior to shot. I'm wondering if I can expect anything else that's not mention. I'm mostly worried that my bones will be worse than before. Calling Amgen doesn't help. They just read from the general information. Not layman terms.
Thanks for any replies. Barbara
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Batbara
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Thanks kaarina. I actually was asking about side effects if you STOP taking Prolia after one shot. I have read about all the possible side effects when your on Prolia. I'm just wondering what to expect when I don't continue on this drug. I've only had one injection, but won't have another. I'm sure there are other people who have stopped this drug too. So I was looking for any feedback on stopping Prolia and any possible negative side effects.
Ooops, sorry. I have heard that side effects from Prolia often do not go immediately on stopping the injections. I have also read that one really has to choose another drug if stopping Prolia. It has been suggested to me that I start on Prolia as SR is being discontinued next month but at the moment I am strongly veering on refusing this infusion.
I think you are fine after one shot. Find other means such as nutrition and exercise. I am trying to stop after years because it has compromised my immune system.
I had on shot In October and am doubting I want to continue. I don't want to be on something for my entire life and it's just too new. Getting a 2nd opinion as my first doctor is very pro-Prolia. Wondering if I should definitely take Fosamax especially with the reports of increased risk of fracture once Prolia is stopped.
Were your vertebral fractures after a fall or did they just break for no reason. I’ve been on prolia 6 years and don’t plan to continue. Response appreciated.
Read all the literature. There are many problems including jaw fractures. Even common dental procedures can be problematic. I am trying to get off as it has really compromised my immune system. The doctor that started administering to me didn't tell me anything and it has been several years. I would not be shocked to see one of those class action suit adds on TV!
Hi birdmama, it's pretty disgusting how doctors withhold info on this drug, or they are really just ignorant because they only know what the drug reps are telling them. My doctor didn't tell me all the side effects either. Usually I research a drug before I agree to take it. Unfortunately this time I didn't since I have been hammered for years by all my doctors. I also chose prolia because I'm limited to drug I can take because of other health problems.
I haven't had too many aches and pains now. Just lost some hair, but that's the least of my problems. Would give up all my hair to have health back.
I agree with you that there will probably be a law suit against AMGEN in the future. They should sue the FDA too for approval of this drug. They have deep pockets and all these drug companies are so powerful due to money. It's sickening!
Hope you don't have any bad side effects due to halting prolia. Wish you the best.
I agree birdmama ... I was also put on this treatment without information regarding potential side affects. I will be a part of that class action suit should it come to pass.
That is good to hear, Jayge. I expect you now know that it is not advisable to stop Prolia without going on to another OP medication so as not to undo any good the Prolia may have done and to avoid possible multiple vertebral fractures.
Hi, Barbara I had 3 prolia injections and then stopped because I constantly felt or was ill. I also had pain in my joints where I had problems using stairs. I never had this before the shots. Now that I have stopped I have pain in my lower back, hips and knees. Do you know whether there is calcium depletion in your bones once the prolia is stopped? I can't get any answers and I am worried about fractures.
Prolia should not be stopped without starting another type of treatment such as a bisphosphonate (fosamax, ect.) The cessation of prolia leads to rebound bone resorption (breakdown) and can cause multiple vertebral fractures. Bisphosphonates are imbedded in the bone so they don't carry the same risk. Both meds have the risk of osteonecrosis of the jaw and atypical femur fractures but the incidence is rare.
I totally agree but when I was prescribed Prolia injections every six month for the last two years my specialist never told me the consequences of not renewing the six monthly injections. I got an abcess on the lower jaw L4 tooth and the dental hospital could not remove it due to Prolia injections. I had to abandon the Prolia injection renewal in January and wait 6 months to have it taken out by a specialist who would not cause trauma to the jawbone. Within 3 months of not renewing Prolia I got terrible backache. My GP said to take antiinflammatory tablets and it was just 'old age'. I'm 63 and size 10 and very active golfer, dancer and healthy lifestyle. I insisted on having an MRI. Within 1 hour of the MRI my GP phoned to ask when I fell or had trauma. I said I never had any injury. He told me that I had fractured the L1& L2 vertebrae on my back. I was shocked. I attended a orthopeadic specialist and he told me that the fractures were as a result of not renewing Prolia.....rebound effect and rapid loss of bone density.
I have read Prolia documents, patient advice and see NOTHING warning women of the dangers of this injection. The fractures crippled me in terms of what I could not do to live an ordinary life. I had to give up my job and attend physiotherapy weekly as my whole frame locked. I could not walk longer than 10 minutes and had to build up walking after physio treatment.
After 4 months I was 70% recovered and a new problem arose. This time my fingers started to touble me and I found it hard to type text messages, use laptop.Eventually my middle finger swelled up and my GP sent me to A&E to check for infection, gout or fractures. They gave me an XRay and Blood test with an All Clear and to use antinflammatories for 10 but to no effect.
After two weeks of aninflammatories I got a dreadful burning pain from my fingers rightup my arm to underarm and it was as if I whole arm was burning on a B-B-Que. The tears fell from my eyes with extreme pain. I returned to my osteo specialist for my back fractures and when he saw my finger he ordered an MRI and on reading results for the cellulitis he rushed me into hospital for a week for intravenous antibiotics x 3 every six hours. I was referred to a hand specialist who diagnosed Flexor tenosynovitis. On release I was prescribed 2 different antibiotics....20 daily for a month with physiotherapy and then I had to bind the finger with compression bandage for weeks to bring down swelling. I had no infection. I think my body is breaking up as a consequence of the withdrawal of Prolia. I never had fractures in my life and never had swelling of any kind in my hand. I now hear all my bones creak and the facet joints can be heard if I try to exercise or massage my bones.
My dental specialist told me that Prolia Injections stay longer in the body than bispho powders. I attend a top Osteoporosis specialist for over 15 years and I told them from the start that my dentists preferred me to use one type of treatment for bone density but they decided to switch me to Prolia Injections but never mentioned dangers of withdrawing. I have forgotten most of the names but Protolis powders nightly and other bisphosomates powders were my treatment up to 2 years ago. Do the Pharma firms think that women over 60 will never have a tooth extracted or have cancer treatment. Necrosis of the jaw is listed as a problem with all bisphosmates and Prolia but no mention of how to deal with an urgent extraction or getting dentist and medical specialits agreeing on how to communicate with the best interests of the patients or communicating with each other.
The Osteoporosis Clinic read all my 6 MRI's before and after treatment and they prescribed a Superdrug... PTH....synthetic parthyroid hormone injection nightly for 2 years in view of my vertical compression fractures on my back.
If anyone wishes to pursue a claim against Prolia manufacturers I want to be first in the queue. It is unacceptable that the withdrawal of this drug for other medical reasons like dental extractions is not documented on their medical leaflet. The top dentists I attend have stated that it is a dangerous drug and they are not happy treating patients using any form of bisphosimates or Prolia. It's time all medical consultants started to communicate amongst themselves and their patients. We are the Guinea Pigs for the drug companies and they are mysoginists as it is mainly women who post menopausal suffer from osteoporosis.
My life has changed as I had to give up my job, give up golf, giveup gardening, give up dancing and I live in fear of what comes next. I'm afraid to wear all my lovely high heels and feel I'm old when in my head I'm 28 but actually 63 years young at heart. I've spent over 4,000 in the last ten months on medical consultants, medications, XRays, MRI's, physiotherapy and my health insurer has paid over 6500 to date for my treatment.
UNACCEPTABLE that drugs prescribed are more dangerous than Street Drugs.
I am now 58 and was on Prolia for three years before my doctor took me off without replacing it with anything else resulting in ten vertebral compression fractures.
Your story is so close to mine.This is a drug that should never have made its way into the market.I am stopping after 4 injections .I do fear the consequences but feel I have no choice. Looking for a law suit in Canada.I kept quiet because I just thought all my issues and pronounced pain were a result of aging or not coping as well with the pain..... not true
It is good to know that not only Prolia can possibly cause osteonecrosis of the jaw but also the other drugs too? So if you give up Prolia and start another drug, there will be the same risks of the osteonecrosis.
Hi! I was started on Prolia due to I had a severe reaction to Fosamax. My muscles were severely twisting tight, worse than a charley horse. VERY intense pain. It felt as if you could actually look at my back and see big muscle movement. Was told to stop (obviously) and had to wait 8 months until the Fosamax was out of my system. I was then started on Boniva, with the same effects. I was also told to start taking Calcium and D3. Sent to an endocrinologist, who told me 2 types available: subQ Prolia, and the other one was IV, but that really I think only helped the spine), don't remember the name. I fell and landed on my left hip (no fracture, but bad bruising) and broke my baby toe (got caught). He gave me my due shot, due to the hip involvement, but told me he wants to stop it. That my bones will go back to what they were. My 1200mg Calcium and D3 are helping maintain. So I will see what he says next time I am due. I will be out of luck if that's the case.
Hi Jan ... I am in the same boat. It is not until today that I finally realized that my sudden failing health was likely attributable to Prolia. I was a strong, healthy breast cancer survivor with low bone density probably due to 5 years of Post treatment Tomaxafin (which decreases estrogen production). Now I can not walk without pain and/or at least discomfort, I have heart palpitations, sore gums, and achy flu like symptoms.
Sorry Jan, don't know the answer. Unfortunately if you call Amgen and ask for information, they are very vague and not really helpful at all. Makes one wonder just how much they know about this drug that they are promoting. Scary!. Wish all of us luck going forward!😁
From what little I have read, stopping denosumab (Prolia) may well lead to rapid reversal on bone mineral density (BMD) and may predispose a person to fractures again. If denosumab (Prolia) is to be discontinued then alternate therapy should be considered to prevent the loss of the gains in BMD with denosumab.
Have you called the helpline at NOS and asked a nurse this question?
Hi, please read my reply to PharmaM above. In my case I was told by the Dental Hospital not to renew my Prolia injection as I had to have a lower jaw tooth L4 removed. I had to take antibiotics for the abcess and after 6 months they removed the tooth. Within 10 weeks I got my first fractures in L1 & L2 vertebrae depite the fact that the Dexa showed no osteo problems in lumbar area.
So sorry to hear this. I had a narrow escape in refusing this drug. I was then told by the consultant about rebound vertebral fractures on stopping the drug. You are so right - we are the guinea pigs. I have used that phrase many times. Our mothers were guinea pigs too with being prescribed AA for years and years and as a result, some ending up with broken femurs. Now drug holidays with AA are suggested. That suggestion was unfortunately never suggested to my dear mum.
I'm now on Forsteo for two years and will most likely be put back on some type of bisphosomates. At least is creates new bone rather than retaining loss of calcium...really the ignorance of medics other than osteo specialist is unreal and I pay 200 Euro per visit. They are not upskilling or attending courses annually so I don't know how statistics are collected at all on patient's experience. I might as well have been talking to the wall as discuss wth my GP. He said' Oh it's just old age, you will probably loose a few inches in height and take painkillers and calcium". How the hell can the pharma firms know the effect and side effects of their drugs if there is no National Register of patient follow up or experience.Surely their License requires all GP and consultants to report back on the drugs they prescribe and patients should be given a copy too or be asked to fill up the form for them. If I go to theatre I have to sign a Copnsent Form in case of a mishap and I'm informed that mishaps may occur. It's Not Good Enough. If I smoke cigarettes there are warning signs on the pack but we can let medics inject us with drugs and not be told what may happen to us in years to come.
I was on strontium ranelate (Protelos) and felt ok taking this drug. That was unfortunately withdrawn last August. That was a sad day for me. I now take no prescribed bone meds. I wish you all the best on Forsteo which I feel is the best option out of the options available to us. Only downside at the moment with this drug is it is expensive so not prescribed until one has tried everything else and one can only be on it for 2 years and then have the problem of what to take next. That is how it is in the UK.
I agree with Kaarina, you should talk to NOS. However I think you need to trust your own instincts regarding these heavy duty drugs. Whatever you do in the future, for now please do everything you can to feed your bones and encourage them to grow strong. Eat the right foods, take a few supplements, especially the things which aid calcium absorption, like Vitamin K2, and D3 of course.Make sure your magnesium level is good. And appropriate exercise, including things which maintain and improve sense of balance, as falling is a much greater risk than low bone density. Nordic walking is fun and beneficial if you can manage it, and tai chi is good for improving balance as well as, apparently, encouraging bone density.
With regard to food, studies are showing the most commonplace foods can improve bone density, things like prunes, and yoghurt!
Hello I have had one injection Dec 26th . I am due for number two in june this year.. I will not get it.. I have been so sick.. severe muscle and bone pain.. Non stop respitory infections , blisters on my feet and hands mostly feet, insomnia and over all feeling like I have the flu.. in my support group a lady told me her doctor called the manufacturer and they said if you stop even after one shot you have a 50% increase of fracture of the spine and most suffer 5-7 fractures of the spine the first 6-12 months.. I don't know what to do.. I have yet to have a fracture.. I was told by my doc it just made you more at risk but not like that.. But she also had NO idea of how terrible the side effects could be.. I am actually really mad about that. I would love to know more about quitting because I really do not want to take that second shot in June
You must not stop Prolia even after 1 shot. It's for life or get Hospital Consultant to prescribe a bisphosamate or Forteo injections. Don't go to a private osteo consultant in a rented office or room. Go to a Government Hospital and get accepted for the Osteoporisis Dept. Some experts on osteoporosis despite being medics in their own private rented premises/offices do not have to share their files with anyone and some don't even bother to liase with your G.P. As far as I'm concerned some want to promote the 'Latest Drug' and we the patients are not protected ....just guinea pigs. Public Hospitals and Consultants in Private Hospitals are regulated and Data Protected.
Hi Cartam97, good for you being off it. Hoping your back injury is muscle only. Are you taking any other drugs? Or just using diet and exercise? Wishing you success! It’s such a terrible dilemma ...
I use essential oils that help build bone, I take suppliments that have bone building ingredients (Not just regular calcium.. plant based raw calcium, k2 /d3,wintergreen and other things I also take collagen. If you are really interested I do have my routine written out. As for exercise I walk , I have neuropathy so some times exercise is hard for me.
I would like to try your regime. I have had 3 spinal fractures in the last 6 months, the last one in June and admitted to hospital. I am taking Adcal but now the Rheumatologist has informed me that my spine bone mass is -5. He wants me to start on Prolia but I said I would rather try something more natural. He said if I didn't have meds I am at risk of other fractures. Any advice would be really appreciated.
Yes I am doing completely natural bone care. So far no fractures and I have had two very bad falls where I really should have fractured my wrists, hips and spine.
I have osteoporosis and, like you have a habit of falling without breaking a bone. In fact last year I fell from top to bottom of an oak staircase on my back with no damage. I’ve done a lot of research and the latest thinking is that bone density is not automatically an indication of bone quality. Unfortunately there’s no non-invasive test for bone quality, but I’m working on the basis that despite the osteoporosis my bones must be reasonably strong. So after one injection I’m not having a second,
Have them start you on alendronate before you discontinue the prolia. Allow several months for the alendronate to be effective before stopping the prolia.
I wish I had realized my failing health was due to these injections. I did not make the connection in time and now I’m two years in. I am considering stopping in spite of the documented risks. I feel like an 80 year old on this medicine and I’m 60.
I am new to this group and Tu for sharing all your stories. Hi I feel the same I am stopping prolia. I am going to get fosomax to try. Ive at 3. Very improved bone density though . I also increased calcium vitamin d and work out faithfully with weights. Not sure if improved bone density is from prolia or eating right increasing cal and vitd or working out with weights. My dr insists I stay on prolia but it scares me. I put off for years getting treatments. Until I fractured my spine. I eat the right foods to help bone building. And work out with weights. And am very careful when I walk. Not to fall . I have read people getting prolia for years stopping and taking fosomax. Without any major problems . I hope that’s me
I just had a recheck with an endocrinologist following up on multiple lower back fractures that occurred without injury. I told her on my first visit I was suspicious that it was due to my stopping my Prolia injections. I tried Prolia for 1 a year and a half (3 injections) but the side effects were to much. I had been off of it (with no other medication to replace it) for about 7 months. On this visit, she told me that she had just been at a conference where they were told that multiple lower back fractures are showing up as a common result of stopping Prolia with no other drug started to replace it. I was not given this information when I stopped, and she said it is new information. I am a healthy and active 54 year old woman, and as I mentioned there was no injury or fall that brought on the fractures.
I think this drug will be showing up in class action law suits. Get all the information you can before making any decisions.
I am sorry this happened to you. I was told this by an endocrinologist recently. I had already discussed with him that I did not wish to take Prolia because of the possible side effect of joint pain, as I have enough of this anyway suffering with osteoarthritis. He agreed with me, in my situation and threw in that gem at the end regarding rebound vertebral fractures, on discontinuing Prolia.
Hi I suffered 6 vertebral fractures plus sternum and rib fractures which occurred with no trauma when I stopped taking prolia. There was no warning this could happen . I am only in my 60s and now far worse off. This is a dangerous drug and there is a cover up from the drug companies. Trying to find others for advice on treatment and compensation and to warn others. Needs to come off the market asap
That is awful. I am sorry. I understand when one stops prolia one has to continue with another OP drug to hopefully prevent these fractures happening. I am not keen to take any of the OP drugs. They all appear to have terrible possible side effects. The only one I took was strontium ranelate and that was withdrawn last year. I never had any problems that I was aware of, with this drug but there are other patients that suffered through taking it.
Hi.Exactly the same thing. I had 6 vertebral fractures rib and sternum spontaneously. I stopped prolia and this a known side effect that they are not warning people about. This is actually a cancer drug. You cant stay on it fir too lo g because of potentisl femur fractures etc. But if you come off it your body explodes... it needs to be banned..
Thank you Barbara for your response. I found out about the fractures after going to PT and not getting relief from the intense pain. The PT requested the x rays and found the fractures. Unfortunately there is nothing they can do to repair the fracture /prevent other injuries. I did a lot of core strengthening exercises and that and time have helped tremendously. Another lady responded to my post, saying she read about the rebound fractures as a result of stopping prolia, so hopefully the information is getting out there. I haven't checked their website myself yet.
I started using fosamax since then, and am due for a bone density test this coming summer, so don't know any results as of yet.
I am sorry to hear you are dealing with other health issues.
I plan to watch this website to keep informed of other users issues.
I am curious how long after the last injection do these fractures show up? I had one injection Dec 26 2017 was due for my second June 26 2018 and did not take it. At Dec 2018 it had been one year since receiving the injection. Now at almost April 2019 I am wondering how long I have to worry about that post prolia fracture possibility.
With one injection there is no risk. I emailed all the researchers at the forefront of highlighting this problem (Olivier Lamy et al) and he said the risk is 2 or more injections.
How are you going now cartam97? I had one injection 2 months ago, I wish I had done some research before hand, I would never have had it. I'm a fit and healthy 62 yo, I have noticed a gap has opened up in my teeth since the injection and terrified now I'm going to lose my jaw bone density. I'm not going to have any more injections but what I'm reading about stopping is scary, so I am really interested to know how your travelling
I fully agree with all you say. Please read my situation. Amigen just updated information re dramatic increase in bone fractures on ceasing Prolia. You must go on Fosamax or another bisphosomate or you will end up like me. Dentists, consultants, GP's are not upskilling or getting up to date warnings from Amigen to advise patients so why this drug is allowed in any country is beyond me. Have a new Dexa Scan and you will see a dramatic drop in your Bone density after ceasing Prolia. None of the dangers were publically known when I was prescribed it and this is possibly due to the fact that the drug only went into it's 3rd trial and was done on people aged 65 and over....not on younger aged patients. We should be able to sue Amigen for the damage this drug has done to me and others. My GP saw my MRI scan and thought I had been in a car accident just 10 weeks afterceasing Prolia renewal.
Furthermore it is questionable that despite reports of Prolia building up bone density rapidly and faster than Fosamax or Protelis....the question has to be asked....IS IT REAL BONE?
I did read the info that you sent. Once again , I cannot find anything pertaining to stopping after one shot of prolia. Maybe I'm wrong , but common sense tells me that the possibility of fractures shouldn't be as likely with just one shot. Then again my common sense is may not be the best thing to rely on, since I chose to take prolia to begin with Lol!
Thanks so much for any info and input you put out to us😄👍
I tend to agree with what you are saying regarding less possible fracture damage may be caused with only one prolia shot, Batbara. From what I am given to understand the information about rebound fractures is pretty new.
We have to try to make the best personal decision with very little information to go on which is reliable as no one appears to know what these drugs do to one in the long run as the research is not there. Please do not beat yourself up about agreeing to take prolia. We are a bit in the dark with this OP malarkey and everyone's situation is slightly different.
I note you are not going to take an OP drug now and deal with it, via exercise and diet and supplements. At least you have made a decision.
I am going down that route too in the very near future. The doctor I see at the endocrinology dept for my OP appears to agree that it is OK for me to do this. My t scores are not too bad, the risk of a major osteoporotic fracture is 13% and 0.9% risk of a hip fracture alone in the next ten years (FRAX calculation). Apparently both these calculations are below the recommended treatment threshold according to NOGG guidelines, so he tells me.
So, touch wood....... and here's hoping I have made the right decision for me.
That was a very good article but there is another shown that is really startling of how much bone you lose afterwards, not just what you already had lost. This makes me sick.
I have taken ProLia for over 2 to 3 years and the only side effect I have had is dental problems that have caused infections in my gums. I don't have dental insurance so not sure what I will do but I have stopped the shot to clear up the infection. My bones are in bad shape because I had no idea I had osteoporosis and osteoarthritis until I broke a leg. The surgeon said my bones were as brittle as a 90 year old. I have also lost a ball and joint in my hip which is bone on bone. I didn't have it fixed due to no major pain and the extent of repair required to fix the hip area joint. It worries me to stop it but I don't want to lose all my teeth. I'm sick over the whole mess
I had taken the 3 yr. limit (actually a little longer) of Fosamax when Prolia came out. The ad says it builds bone. My endocrynologist recommended it to build bone. I had no side effects and there was improvement on left side and none on right. My last visit this month she informed me I had been on it 3 yrs. and need to stop as it can have problems taking it longer and would cause having some of the side effects but they will have to put me on another drug which don't do the same thing as denosaub. The other endocrynologist explained how it works (doesn't sound like building) - he drew a diagram showing that bone dies and is replaced with new bone. As you age and have osteoporosis, the bone dies faster than the replacement that also has slowed down. The drug slows down the absorbtion (dead bone) so that new bone catches up (doesn't sound like their ad that it builds bone).
Now I find that you can't take it longer than three years (even though some articles talk about longer); when you stop you are in danger of having real problems; when you stop, the progress you've made not only disappears, but significant bone is lost according to this study ncbi.nlm.nih.gov/pubmed/289....
I go back in June and will discuss next plan and wish I had never taken it to begin with as I may not have been worse off. They just keep telling me not to fall so I must have very bad bones.
I get told by the orthopaedic surgeon at my appointments and the endocrinologist I see for my OP, not to fall. Easier said than done. Of course I do not go out intending to fall but unfortunately sometimes it just happens.
I have had 5 spontaneous vertebral fractures after stopping Prolia 10 months ago. My doctor told me I could discontinue it . No you can not. You get severe rebound bone loss almost immediately if you discontinue it. I had two shots over one year period and had constant pain in my arms and legs while on it. That’s why I Stopped taking it.
"I just received the first injection but I don't want to use it anymore. Now I'm very conflicted. May I ask what your bone density was before starting the medication? Thank you."
Wish I’d read this before I ever started Prolia. My shot was delayed for a few weeks on account of one doc leaving and another coming in. Three painful vertebral compression fractures and months of pain. Working with physical therapist to rehab myself but maddeningly slow. Spinal curvature and protruding belly and loss of height bad enough. The pain is intolerable.
Can anyone advise on how to get off this drug safely?
PTH - do you mean parathyroid hormone or physical therapy? Parathyroid hormone, no -- I've heard that a form of parathyroid hormone is involved with an osteoporosis drug but I don't know anything about it.
Physical Therapy? YES. Twice a week I see my physical therapist (PT) and in between I do the prescribed exercises. It has helped. The PT suggested massage therapy too and this has helped with the pain in my mid-section as well. So I'm able to stand straighter and sit upright and stand for about an hour or two without too much pain.
The PT also suggested a "TENS" device (transcutaneous electric nerve stimulation) that creates a vibration that interferes with the pain signals. While it doesn't take away the pain entirely it makes it more bearable when I'm not in a place where I can lie down for a while.
You could say that Prolia stopped me. As I explained in another post, there was a change in doctors at my medical center.
My appointments were canceled and new ones made for a later date, but no one accounted for the need to get the Prolia shot ON TIME! This resulted in a delay, and no one alerted me that even a short delay could result in fractures.
It turns out that while the information from Prolia's manufacturer says not to "stop" Prolia without consulting your doctor, in my case the delay leading to the fracture was CREATED by the doctors.
Even the little cardboard tab they give you with your Prolia shot just has a date on it. It does NOT warn what could happen with even a short delay. So it's likely that many people look at this like the little card the dentist gives telling when your next teeth cleaning appointment is.
That said, until this happened I'd been keeping these dates faithfully for over six years before this disaster occurred. It helped my bones just a little, not a lot. But I kept my appointments.
Because I cannot even find the word "delay" used in any of Amgen's literature for doctors or patients, I have tried to warn as many people as I can both here and at my blog Joansbackbonedisaster.com.
Even though I am working hard in physical therapy and other modalities, much of what I have lost will likely never be regained. But what I CAN do is warn others so they will not have to experience the same pain and disability.
You are right about that. I am not pain free and likely never will be and the painful and disabling consequences of the fractures resulting from the failure to give adequate warning about delay in getting Prolia shot will likely be with me for the rest of my life.
I stopped taking prolia after 4 injections. 4 months later I picked up a heavy load of snow while shoveling. 5 of my vertebrae in my back fractured. I always lifted heavy stuff before prolia. I'll never have the same back again. Now I live with back pain. I advise everyone not to take it.
I identify. I felt really good before I received my 1 prolio shot. Immediately I had joint pain in my hips arms legs. It seemed to last months after the shot. I have had bladder infections, and now grinding in my right jaw. Do not know why doctors are pushing this terrible drug. I am glad I stopped after the 1st shot.
Hi I'm in the UK had my first injection of prolia 9 weeks ago and I have had 2 ear infections 1 sinus infection 1 broken tooth now have 1 loose tooth and jaw pain with infection of another tooth dentist says he doesn't want to do anything invasive unless he has to I'm terrified of getting ONJ and am not sleeping worrying about what this drug is doing to me and my GP says this is all coincidence?? And not to keep looking on the Internet as people only use it to make negative comments - it seems to me doctors don't want to hear any negative comments about the so called wonder drugs they are prescribing I will never have another Prolia injection
my “side effects” were three fractured vertebrae that happened because a change of doctors caused a delay of about three weeks in getting my Prolia shot.
The pain and disability for the last eight months has been awful. Neither Amgen nor the prescribing physicians have anything to offer besides pain pills. Bad enough to have a broken back; I don’t need a monkey on it too.
Barbara, Please do not stop without a safe exit plan. As you may have seen on my other posts here, I’m in my eighth month of pain and a good deal of disability (some of which will likely be permanent) from fractures resulting from a short delay getting my Prolia shot. I have spoken with Amgen several times asking if they have a protocol for getting off Prolia safely. Their only answer is to “ask my doctor. And so far my doctors only advice is to consider going on Reclast, a drug that sounds even worse than Prolia.
I would Be grateful to hear from anyone on this forum who has been able to get off of Prolia (after several years of being on it) without major problems. I would like to know how they did it.
Hello Elizabeth65 -- I just read your story and there are so many parallels to mine it is uncanny!
Just several months ago I was "81 going on 60" leading a very active life, traveling, doing community work, enjoying friends and family, etc. But in a flash I turned into an "82 year old going on 160" because of a delay in getting a Prolia shot - a delay of just a few weeks caused by a change in doctors at the major university medical center that sees me.
I had been on Prolia for about six years and while it did not stop the bone loss it slowed it down a little. Because of this short delay I had three compression fractures (T 11, T 12 and L3) and for the past 8th months have been living in a world of daily pain. I've forced myself to be up and about despite this but the exhaustion is overwhelming. My "self" of just a year ago is totally gone!
Physical therapy has helped to some extent, and I've just tried to live with the pain as best I can, but my body of just a year ago (a body I've worked hard to keep healthy) is pretty much lost.
Someone has mentioned legal action. I believe there are class actions now regarding different kinds of fractures associated with Prolia, but nothing about the fractures associated with stopping or delay of Prolia shots. Such an action would not bring back my body, but it could help warn others.
Now I just try to warn others as best I can - in person, blogging, social media, etc. but as one individual I obviously don't have the reach of a company that can field costly TV ads featuring familiar actors!
I would LOVE to get off Prolia now, but SAFELY. I cannot afford to break more bones. When I have asked Amgen if they have a protocol for getting off Prolia safely their response is "ask your doctor." Well, my doctor (a bone endocrinologist at a major university) does not seem to know the answer! And it was the change in doctors at that center that resulted in the delay in the first place!
I have been researching this and hope I can find an answer. But as of now I know this drug is causing other problems for me (including not being able to have some needed dental work, plus the back pain, and skin issues) but I do not know how to get off without breaking more bones and I cannot go through this again.
At this point the fractured bones are pretty much healed (albeit in their new "compression damaged" state) but the inflammation and pain in the area are giving me a terribly hard time.
I am so sorry I ever got locked into Prolia -- I feel like a fish caught in a gill net -- dangerous to stay but impossible to get free without major injury. I'll be grateful for any advice from people who have gotten off successfully (i.e., without major bone damage) after several years on this terrible drug!
I should add that I live in the U.S. and am on Medicare. But while Medicare paid for the Prolia, it does not cover much of what I need now!
I wish you - and everybody here - comfort and healing.
This has been so unnecessary and I hope that all of us coming forward with our experiences can have some positive benefit for others!
I know you wrote your post a while ago, but do you have supplemental insurance that picks up the cost of Prolia with Medicare, or does Medicare D pay for it?
I had the injection one time.. I had horrible life changing side effects and am still battling them. I refused the second one.. (due in June) I had a bone density scan in Oct.. My bones got worse... However I had not had one in 2 years and 9 months so it is possible they were already worse.. I am going all natural and will never take those horrible drugs again
I had one shot of prolia in April 2018, no problem. Went back for my second shot in October, and from then on have had horrible back, leg and arm pain. Am due for my third shot in march, but have canceled the appointment. Will NOT get another shot of prolia again!
Well I took my chances . Got my one and only shot June of 2017. Have not taken another one since.also have not taken any other drug .its been 18 months and have not had ny broken vertebrae. So thankful.
"I just received the first injection but I don't want to use it anymore. Now I'm very conflicted. May I ask what your bone density was before starting the medication? Thank you."
I had 1 shot of Prolia...it was awful! I hurt all over. Never had any pain before. I now have grinding in my right jaw, bladder infections. My doctor did not seem to care. Do not know why doctors are pushing such an awful drug.
Ive just had one shot of Prolia as well....I'm absolutely terrified of continuing this now and will not have another shot. I'm usually so careful about anything I take...I blame myself for not reading up on it before taking it...I have celiac disease and have just been diagnosed with mild osteo in my lower back and osteopenia in both hips. My doctor suggested Prolia because she said I cant take anything oral as I cant absorb it because of the celiac disease...I cant understand this as my celiac disease is completely under control...Ive stuck to the diet 100%...I know I was a late diagnosed celiac and maybe this has some bearing on it....in any event, I'm quitting Prolia and concentrating on diet and exercise and see what the comparisons are with my next Dexa scan and the first one I just had.....
I am 63 years old and was active & healthy other than having osteoporosis. I feel like my life is now a mess due to Prolia.
I was on Actonel for several years went off it & I was lectured by my doctor to go back on it. My mom had a femur fracture due to a reaction to fosomax so it frightened me. My doctor said just because it happened to your mom doesn’t mean it will happen to you so I went back on it. It wasn’t helping & my time score continued to decline so they decided to put me on Prolia. After my 2nd injection June 1st 2018 I started to feel femur pain a few months after. I went to my nurse practitioner in September & she brushed it off & said I must have banged it & to come back in a month if it was still bothering me because according to her it was not a side effect due to Prolia. After researching more & reading bad side effects on a site called my osteoteam I saw some disturbing information. I had an appointment with the osteoporosis clinic November 14th 2018 which was booked a year ago. I decided I wanted off the drug & told them what I had read about rebound fractures. They more less said not to worry & it only haooens to 1%. They sent me for xrays on my legs & to their surprise & mine I already had an atypical femur fracture on my right leg. Of course they couldn’t express enough of how sorry they were. They rushed an MRI & an appointment with an orthopaedic surgeon. Two weeks later I was in having surgery for an intramedullary nail from hip to knee November 28th 2018.
I wish I had never gone on the meds & just taken my chances with diet & exercise.
I was suppose to be in the hospital for two to three days but ended up being in 10 because I was frequently passing out. My little grandson told me the other night when I didn’t come home after 3 days & I was gone so long he thought I was going to die. It broke my heart to know that he was so worried about me.
Now they are keeping a close eye on me for further fractures. I feel like my life has been turned upside down. I am not able to work so no money coming in & I am on my own. My benefits ended November 15th one day after my news of the fracture. I try not to worry & I pray there will not be any more fractures. I truly feel like a china doll waiting to break especially when people are now afraid to hug me...
OMG....that is just awful.....are you still on the Prolia now? I'm doing so much research now in order to be able to manage it with diet and exercise, and I will then go for another Dexa scan in 1 year and make comparisons with the first result. One Prolia shot stays in your system for just 6 months and after that its gone (according to one piece of info. I read)….but I had also read of somebodys experience of having very bad side effects having kicked in 5 months after their first and only shot, and still continuing after 3 years....the Drug companies are never going to tell the truth about their drugs....do you have any other conditions other than the Osteo? Good luck with managing it...I hope things get better for you. I will post any information that might be helpful to you.
I am no longer taking Prolia. I was due for a 3rd shot December 1, 2018. They have no safe exit plan for me. I just feel so scared going through this process.
I appreciate any information you can provide me.
My mind gets boggled with so many suggestions at the health food stores. I am looking at natural products now & exercise. I wished I would have refused to go on the pharmaceutical drugs especially Prolia. I had tried Actonel as well for several years. I had taken myself off it for about a year & was lectured by my doctor to go back on it.
I feel the same as you about the drug companies. They make so much money & if it’s helping all but the supposed 1% like me who cares. I truly feel it affects more than 1% & it’s just not reported.
I have osteoarthritis as well but I have not been affected greatly by it.
I have always tried to be fit & active. This has been a real blow to me however I am trying to fight back 😊
Hi....of course you have no way of knowing if you would have suffered any fracture if you were never on Prolia.....it may have happened anyway. In any event, I feel that doctors should always encourage people to opt for a natural treatment 100% before starting on any drugs....my diet was so bad all my life because of being Celiac...I just couldn't eat, I literally lived on one sandwich a day, no fruit, no meat and no veg! Don't know how I'm still alive....and to be honest, I was so afraid of my first Dexa scan as I was sure my bones would be powder. The Radiologist was amazed when I told her how bad my diet had been....since going off gluten I experienced having an appetite for the first time in my life, so now my body is getting all kinds of nutrients into it that it never had before....I'm still very short on eating veg....especially greens, but now that I know I absolutely need it for the osteoporosis I'm going to be 100% into a natural diet, and will also focus on exercise, especially exercise for my problem area which is my lower back where I have mild osteo…..My next Dexa scan was scheduled for 2 years time but I will have it in one year just so I can make an early comparison. I told my doctor I will not continue with the Prolia because I am now aware of the possible side effects....she said I had nothing to be afraid of and lots of whats on the Internet is rubbish....but I don't consider others peoples experiences to be rubbish....If my next scan shows a deterioration I may consider drugs but the longer that's put off, the better....
It sounds like you are on the right track & my son who is a nurse & a body builder would agree with you going about building your bones with nutrition & exercise. Jess has told me about his co worker ( also a nurse) who had two spinal compression fractures & that’s how she found out she had osteoporosis.
Her doctor wanted her to go on Prolia as well. She changed her diet & did weights & resistance training. A year later her bone density improved immensely. Her doctor was impressed & she told him what she had done. He was shaking his head no & said it wasn’t what you did it was the result of the drugs. She replied but I never went on them. I would have loved to seen the look on his face. My son wanted me to go off the meds when his coworker did so well. I wished I had listened to him.
Try not to worry....get on track and give it everything you've got and have a Dexa scan again asap....then you can make an informed decision on which way to go.....wish you all the best for Christmas & New Year....onwards and upwards!
Right now I am locked in what I call "Prolia Prison." The doctors do not deny that the short delay (occasioned by their change in personnel without warning me) was involved in my painful fractures, but do not seem to have a safe exit plan (that is, without causing more fractures) so I can get off this monstrous drug without switching to "Reclast" (zoledronic acid) which has its own set of serious issues.
So while Prolia is causing other problems for me as well, it seems that I may be serving a life sentence here.
And to make matters worse, the more I learn about DEXA scans (which prompted the use of Prolia in the first place) the more I wonder how accurate they are in predicting the actual likelihood of fractures. But that's another issue and I'm still studying this!)
Hello--I had 3 Prolia shots and have now stopped as I am experiencing jaw osteronecrosis. My dentist performing the implants ( a VERY expensive option BTW) firmly believes the twice/year shot has more more impact on the jaw than daily osteoporosis meds. I had tamed the daily for many years, stopped as doctors warned of long term effects. I have now kept my bone density level by searching the vitamins and minerals suggested by Mayo, NIH, and John Hopkins. Found an online company that sells such in a capsule. Sticking with that now that I am facing four implants all requiring bone grafting. I truly think it happened due to Prolia shots.
I took prolia for two years then went off it. Nobody told me about bone loss after taking it. Within a year, I had lost 15% of my bone mass and suffered 5 vertebral fractures. I have exhausted all other medication options but am NOT going back on that sh*t again.
Hi. Just read your post. I have just had my 3rd dose of Prolia. I really don't want anymore but am petrified of getting a fracture if i come of it. But you say you've been off it a year with no fracture. Did you go on another drug instead?
I took 5 prolia injections then just decided to stop after moving to a different state. Have been off for 2 years and have had 2 compression fractures in my back. I also can not stand for more than 10 minutes without pain. No one mentioned anything to me about taking something else after stopping prolia. I really don’t want to go on anything else but should I? I am an active person (cycling, horses) but am afraid to do these things for fear of falling.
Hi Barbara - I am 61 with osterporosis; due for my 9th injection this month. After finally associating my numerous ailments and pain to Prolia side affects, I too wish to discontinue. My doctor does not concur; he encourages me to continue. I do not know which to fear more, the side affects or discontinuing all together.
I had a prolia shot in May and seemed to have no side effects. Then in September I had my second prolia shot. This was followed by horrible pains in my arms and legs and especially my left hip joint. At first I thought it was due to arthritis or that I had banged myself. As the months passed, and I read up on prolia I realized that my pains were caused by the drug. It was too much of a coincidence. I'm due for my third shot at the end end of March. Though some of the pain has supsided, or I'm so use to it, I've decided to cancel my appointment, and no third shot.
Hi Barbara - I’ve had 1 injection which was done without proper research. I can’t really say I’ve had side effects although need teeth checked again. It’s not quite 4 mths since needle and I’m told affect should start to decline. I refuse to have another! I was only just in osteoporotic range in 1 area! I don’t want to take other meds!
I'm the same Siamang, I wish I'd researched it better. I don't think I needed anything, just an overenthusiastic doctor. I've had one injection but not going to have another, I'm terrified now I'm going to suffer life long consequences
Hi Barbara I just had 1st prolia 3 months ago and have decided not to have again but am also worried about getting rebound I see you were not going to have anymore .I was wondering how you went thanks deaspeet
I am joining the conversation three years later. I had one Prolia injection this year. Finished up in September 2020. Pains in legs. Sometimes really uncomfortable at night. I am wondering whether this is due to Prolia. Your question Batbara and other responses helped me to make the decision not to continue with Prolia. Due to COVID-19 my doctor missed the 'bring up' for the second injection, thankfully. I am still trying to find out if the pains are due to Prolia withdrawal!😄
Hi, I’m wondering how are you feeling after quitting Prolia ? My grandma just had her first shot and we are considering to stop the treatment for her after realizing all the side effects. Thank you all for sharing and I wish everyone good health! God bless you all!
BitdieMae did you take a rebound drug or just stopped…I only had 1 shot & my dr wants me to start Fosamax…I don’t want anymore drugs! The stress & anxiety of getting rebound fractures is doin me in…thanks for any advice you can share
I too only had one shot and did not take any further drug. Jhnard (see below) did a lot of research and found you can safely stop after one shot without any repercussions. Maybe get a second opinion from another doctor? I expect it depends on the severity of your condition. Weigh up the pros and cons with a physician who is interested in your holistic health. Also, make sure you get plenty of exercise, walking is good. All the best.
"I just received the first injection but I don't want to use it anymore. Now I'm very conflicted. May I ask what your bone density was before starting the medication? Thank you."
I stopped after two shots due to side effects and went on Evista, six months later had my DEXA scan with no negative changes. From what I researched you can safely stop after one shot without any repercussions. But more than one you should go onto a another drug. However my neighbor went off after 2years of shots and with no meds, just modification of diet, monitoring BMD and exercise with no repercussions— go figure!?
"I just received the first injection but I don't want to use it anymore. Now I'm very conflicted. May I ask what your bone density was before starting the medication? Thank you."
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