I wish I had never gone near this drug! It definitely interfered with getting needed dental work done! (And its medical mismanagement left me with a bunch of vertebral fracture leaving me permanently in pain and disabled!)
Prolia: Biggest Mistake I Ever Made!!!! - Bone Health and O...
Prolia: Biggest Mistake I Ever Made!!!!
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Viazoy
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What is Prolia? It’s other name seems to be Denosab? Something to do with bone growth? Sounds like you had a bad time on it x
"denosumab" is the generic name for the drug. Prolia is its trade name. It is a drug injected every six months for osteoporosis. It is still unclear for me (because the doctors I've seen each give me different answers) whether the adverse effects I'm dealing with (multiple vertebral fractures, macular degeneration of the retina threatening my vision, etc) are a result of the drug itself, or of its medical mismanagement, or perhaps of osteoporosis in general . I get different answers from the bone specialists and the retinal (eye) specialists.
If you get multiple vertebral fractures after coming off Prolia, especially if you weren't put straight onto a bisphosphonate for two years to minimise this risk, then it's highly likely that it was stopping Prolia that caused them. I don't think Prolia increases the risk of vertebral fracture while actually taking it. I don't think macular degeneration is listed as a Prolia side effect.
Met00, you wrote, "if you weren't put straight onto a bisphosphonate for two years to minimise this risk", does that mean that even if someone takes alendronate for 2 years after coming off Prolia and then stops, that they might still experience vertebral fractures as a result of having taken the Prolia in the first place.
Asking because my aunt who is older, took alendronate for approximately 5 years, took holiday, then was given Prolia for 2 years. All of her number now show that she doesn't have osteoporosis, so in March 2022, she didn't have what would have been her 5th Prolia infusion and instead started back on the alendronate with the goal of taking it for 2 years and then quitting it. I was in favor of this, and her new doctor agreed that this was a good plan, but also note, I am not thrilled with her new doctor, an endocrinologist.
On the day her 5th Prolia infusion was scheduled, when she showed up at the infusion center, they told her that they couldn't give the Prolia infusion because her primary said they would no longer treat her for her osteoporosis. When I called her to make sure she'd had the infusion, she told me what happened, and I was super concerned given all I've read about quitting Prolia and not getting the infusions "on time". Note, I had called the infusion center a few weeks before her appt and at that time they said she had an appt, there was no mention of her primary not approving the infusion.
I had too quickly fly into action and I got her an appt with her new doctor, the endocrinologist. He seems a bit old school. When I asked him about taking vitamin K, he shook his head and dismissed it. When I asked him about the Marodyne LiV platform, he said if it was anything he would have heard of it, that there is always someone trying to take your money. When I told him that the FDA is fast tracking a wearable LIV device, he said that FDA approval doesn't mean it works it just means that it is safe (which I don't think is true at all). Anyway, I was not impressed, but at least he could write he prescription for the alendronate and that was the goal; however, after reading your comments, I am concerned that 2 years on alendronate might not really solve the risk of a rebound vertebral fracture risk.
What I meant was that if someone had multiple vertebral fractures after stopping Prolia, then there's a strong possibility stopping Prolia was to blame. Taking a bisphosphonate instead of Prolia, starting when the Prolia injection was due, minimises the risk of multiple fractures, but doesn't guarantee to prevent them. As far as I'm aware, the risk is for up to two years from when the Prolia injection was due, which is why a bisphosphonate is prescribed for that length of time.
We've been in touch previously. I've had three rebound fractures (2 × sacrum and 1× pelvis) 18 months after discontinuing Prolia, despite using Actonel as a relay drug. I started to wean off the Actonel prematurely - my fault. I've since learned that either Fosamax or Reclast are the relay drugs to use, for at least 24 months. Actonel is not as efficacious as these two. However, regardless of the relay drug used, it appears that getting off Prolia safely is not guaranteed.
Arcadia10, Thanks for replying. I really hope I haven't steered my aunt wrong. She'll be 80 in a few months and since I've been doing all of this research for my own bone loss issues, I was somewhat convinced that getting her away from the Prolia was the thing to do.
I got a copy of her 2019 DEXA results which show
Spine L1-L2* t-score -2.6
Femur Neck Mean -1.3
Femur Total Mean -1.5
* at the top of her 2019 DEXA report it says that spine L3-L4 was excluded ABN. BMD, unusual spinal curvature detected.
Her primary care doctor's handwritten notes on the 2019 DEXA show
"called 09-11-19 Told Stable"
When I had to rush to get her into an endocrinologist office this March because her primary care refused to treat her osteoporosis any longer, I also got a new DEXA scheduled for her. The results are already back and her 03-14-2022 DEXA shows:
Lumbar Spine L1-L4 t-score -1.3
and although the L1-L4 t-score was left out of the 2019 DEXA summary sent to her primary care physician, her 2022 DEXA shows
2019 L1-L4 spine t-score -1.5
2015 L1-L4 spine t-score -2.2
2022 Left femoral neck t-score -1.4
Left total femur t-score -1.2
2022 Right femoral neck t-score -1.4
Right total femur t-score -1.2
On her 2022 DEXA they also scanned her left forearm
UD t-score -1.8
MID t-score -1.5
Total -1.6
So as of her 2022 numbers, she has osteopenia and based on the information that I have, I think that she might never have been given a diagnosis of osteoporosis. Also she has no fractures and she is very active.
I know that she took alendronate for 5 years and then her primary switched her to Prolia and she took that for 2 years (4 infusions).
I guess at this point, I can only cross my fingers and hope that 2 years on the alendronate is the right option. Unfortunately, I keep having the same thought, what are these doctors doing to us.
You're doing exactly the right thing for your aunt by ensuring that she follows her two years on Prolia with 24 months on alendronate. It's appalling that her primary just cancelled her Prolia injection without putting her onto a relay drug - gross negligence, IMHO. Regardless of the fact that she doesn't have osteoporosis at present, it is considered mandatory to follow Prolia with a relay drug (a bisphosphonate) to prevent the possibility of rebound fractures. Your aunt will probably lose a lot of her gained bone density within the next 24 months, as I did. It's probably a good idea to have another DEXA scan done after 12 months to see how things are tracking and also, if possible, have regular CTx blood tests to make sure that her bone turnover doesn't increase too quickly. From what I understand from Prof Lamy who wrote Stopping Denosumab, the aim is to keep the CTx below 400. Mine spiked above that on the Actonel and I had fractures.
Good luck! Your aunt is very fortunate to have such a caring and proactive niece.
In what way did the answers from the bone specialists and the retinal specialists differ?
Viazoy, I’m so sorry for you. I made the same mistake. Doctor filled me with xgeva that has prolia in it. I’ve had teeth problems. My legs are progressively worse. Can’t stand or walk. I dread the thought of wheel chair. All because of this medication that I didn’t need. They told us nothing about side effects. A dentist told me it changes our bones forever. I now have chronic hypertension from anxiety. Everyday I wonder if this will be the day my legs won’t hold me up anymore. I need walker. Can’t stand very long. I had 12 shots. I have metastatic Breast cancer in my bones. I don’t advise anyone to let their oncologist scare them with prolia, xgeva or zumeta. My legs are destroyed.
in reply to Blueskys111
Hi Blueskys111, I am sorry to hear of your plight. But just so people on this HU forum know; Xgevais is different from Prolia (denosumab).
Blueskys111 in reply to
Xgeva is prolia
Xgeva and Prolia are both brand names for the generic drug denosumab. Both are injectable preparations, both are made by Amgen, and both have similar side effects; but they differ in their indications, the way they are given, and their dosage. People who are receiving Prolia should not receive Xgeva and the converse is also true.
drugs.com/medical-answers/x...
Yes Katrina. I’ve done my homework after having 12 shots of xgeva. Also had 3 infusions of zumeta. Zumeta started killing my kidneys so doctor started zumeta with attitude, no big deal. Just don’t have dental work done. That should have raised a big red flag. Each time I try to walk I’m reminded of what this drug did to me. I was given this drug at same time law suit was going on with Amgen. Doctor abruptly stopped xgeva with no further treatment or explanation.
I am very sorry to hear your story after have taken injections of xgeva. Gentle hugs to you.
Thank you Kaarina. I’m sorry for others who have this same thing happen. Doctor wants to give this to my niece. I advised her. Absolutely not.
So sorry, it is absolutely disgusting. The FDA gave out a warning in 2017, the UK trailed behind in 2020. Yes you are right xgeva is the same vile stuff as denosumab. We have two ladies on our facebook group who were unaware of the risks as were their doctors apparently, both suffered multiple spinal fractures.
elaine2447 in reply to
No different, same poison!! xgeva.com/learn-about-xgeva....
Yes, it is not a good medication. I hesitated taking it. It seemed like research into it was done after they released it and people took it for years and then people began to break bones . It’s not much consolation to you. This drug was pushed on trusting people and that’s beyond fair.
My aunt had NO idea what she was getting into when she agreed to have the Prolia infusions. Fortunately, she hasn't had any fractures, but I think that it shouldn't have been prescribed to her. The doctor should have at least given her a bisphosphonate holiday after she stopped the alendronate to see if her bones would stay as is.
Doctors scare us with Mets, telling us bone strengtheners will help. Didn’t help me. Made my bones worse
The irresponsible doctors that I have been seeing didn't even know or tell me that my DEXA numbers might be wrong because of my small size. I'm 4'11" (no height loss). My endocrinologist flat out told me that he wouldn't prescribe zoledronic acid to someone with osteopenia. Additionally, he told me my bones were "horrible." As a matter of fact, when I was asking him about Celiac and potentially getting tested for it, he yelled at me saying that I needed to focus on what I was going to do about my bones. Thankfully, my new gastroenterologist was willing to order genetic testing for Celiac and I learned that I have 1 of the two genes linked to Celiac so my gastroenterologist then did further testing. I don't have Celiac but I am gluten sensitive and since I have one of genes I could develop Celiac in the future, so I'm back to gluten free. And what I have since learned is that had I had Celiac the osteo-meds wouldn't help so my endocrinologist is a jerk for not encouraging me to rule that out before he prescribe osteo-meds.
After getting the zoledronic acid infusion, that is when I learned that my DEXAs might be inaccurate because of my size. It took me over 2 months to get the facility that did my DEXAs to give me my full DEXA reports and ancillary data (it was a freaking battle to get it) and when I entered my ancillary data into Dr. Ott's BMAD calculator courses.washington.edu/bone... my numbers are significantly better. They all, except one, show that I have osteopenia, not osteoporosis, and the one that shows osteoporosis is still not awful and I don't think that number is right--reason I think it is wrong is that one of the measurements used to calculate bone density jumped significantly between DEXA scan and is WAY out of line from the previous number and from my other hip number. Not sure if that makes sense but basically, I think it's a flawed number. My point is that my endocrinologist who said he would give zoledronic acid to someone with osteopenia basically did when he prescribed it to me because he ignored my height.
Also, my endo told me that ONJ is extremely rare. Actually, I should start with, he didn't tell me about ONJ at all. He didn't look in my mouth and he didn't recommend that I have a full dental exam prior to taking bisphosphonates. I took alendronate for approximately 1.25 years before I learned about ONJ on my own. I went to a new dentist and had to fill out some paperwork and that is where I learned about ONJ, and this irritates me to no end.
Regarding ONJ and my endo's comments that it is extremely "rare", I have real questions about how they determine what percentage of ppl on bisphosphonates end up getting ONJ. For example, say 1000 ppl get zoledronic acid infusions and say of those 1000, 10 ppl develop ONJ, of the 10 ppl who develop ONJ, did they only get it once they had a dental procedure or did it happen prior to the dental procedure and of the 990 who didn't get ONJ, did they only not develop ONJ because they had NO dental procedures. Don't know if I explained this clearly but hopefully you get what I mean. Also note, the numbers in my example are completely made up, I'm not sure what the real stats are for how many bisphosphonates patients develop ONJ.
I have metastatic breast cancer. After 20 year survivor I got a stress fracture in my L4. Was on my back for 2 weeks. Couldn’t move. My bone density said I had osteopenia. I’m 85 years old. Everyone has this as they get older. It’s bone loss.
My oncologist prescribed xgeva. Xgeva is a form of prolia. Same side effects. This is not a cancer medications. I was not informed of anything except don’t have dental work done. That should have been a red light for me but doctor knows best. Right? My legs are very painful. I can’t walk. It’s been 4 years. I’m still suffering from this medication. It changes your bones forever.
In research I found out about the law suit against Amgen. They were pushing this medication for metastatic breast cancer patients. My doctor abruptly stopped the medication with no explanation or further treatment. How could they not know all along what was going on with this law suit while they were injecting me with xgeva? Big bucks my friends. These injections are very expensive.
I'm sorry to hear about all the pain you are in. It's unfortunate that they didn't start you on bisphosphonates. Alendronate can have bad side effects too but it's been around longer so more is known about how it works etc. Too many doctors don't/can't keep up and I don't think it's in their nature to admit this to patients.
It seems that doctors were/are too eager to prescribe denosumabs. I'm currently helping my soon to be 80 y.o. aunt, whose husband died long ago and who does not have children. Her doctors prescribed Prolia for her but based her DEXA info, I think it should never have been prescribed. Had I not gotten involved, she wouldn't have been given a relay drug. Fortunately, I was able to get her into an endocrinologist so now she is taking alendronate and she will be taking it for 2 years to hopefully prevent rebound fractures from having quit the Prolia.
If you are open to alternative therapies for pain two things that you might want to research are infrared light therapy news-medical.net/health/Inf... and woscan.com/industry-news/in...
and the Marodyne LiV platform. melioguide.com/osteoporosis...
I have not tried either but I'm willing to give anything a shot especially if it means avoiding meds. The Marodyne LiV platform has been approved by the ROS to treat osteoporosis but I believe it can also help with reducing pain. Note, the Marodyne LiV platform is a bit pricey.
Thank you for your advice
I bought the Marodyne 5 years ago when it first became available in the UK.
Do you think it's helped?
I really don't know because the years i have used it every day, our lovely NHS was ignoring my hyperparathyroidism so my osteoporosis worsened by a further 12 percent. As did my bank balance of £11k to get it done privately in March 2020!!!
Sorry you've been through so much with all of this. Ruling out secondary causes should be automatic. I hope your treatment for hyperparathyroidism is reversing your bone loss and the Liv platform is helping, as well.
Thanks, surgeon said I'm too old for it to be reversed but he was hoping the operation (he removed 3 pth glands) would help stop it getting any worse.
Oh, shame. I didn't realise there was a point beyond which it wouldn't be reversed. Makes it so much worse that yours wasn't detected earlier. But hopefully you'll maintain your bone density and strength and it will keep it from getting worse.
Thanks x
All that bisphosphonates do is harden old bone (which looks good as a positive on a dexa scan) but then causes the bone to become brittle and the femur can snap at any time. This has just happened to a member's mother who was walking across the road and suddenly her leg gave way, 3 spontaneous fractures. Now she is terrified about the other leg.
in reply to FearFracture
HI Fear fracture, sorry but the ROS has not approved this for the treatment of osteoporosis!
Which drug please
The drug is Prolia (denosumab). It is now known that one can experience rebound fractures after stopping it. I had 4 injections over 2 years and had to discontinue because of the nasty side effects. I used Actonel (risedronate) as a relay drug to stop Prolia safely, but still had three fractures (2 x sacrum and 1 x pelvis) as I started to wean off the Actonel after 18 months - too early. I've since learned that Actonel is not efficacious enough to prevent Prolia rebound fractures anyway. Fosamax (alendronate) or IV Reclast (zoledronate) are the drugs of choice post Prolia.
Be very wary of taking Prolia. It should be viewed as a drug of last resort after the oral bisphosphonates have been tried. Have you been prescribed any osteoporosis drugs (as you say you've just been diagnosed with osteoporosis). Are you happy to share your DEXA scores to get input from this community?
My t a sore
Document
Good advice from FearFracture below. Your DEXA results indicate that you don't have osteoporosis and there is usually no reason to start the meds unless there are other conditions involved which could be influencing your bone health. I see from your profile that you're a member of the Polymyalgia Rheumatica and Giant Cell Arteritis community and have been on prednisolone which, from what I understand, has an adverse effect on bone density. So I'm really not sure if your doctor is recommending an osteoporosis med (risedronate) as a preventative measure because of your underlying health conditions. Possibly the PMRGCAuk community have more knowledge about the progression to osteoporosis while on the meds to treat your condition.
So sorry to hear you are one of the prolia victims. It is disgusting that it is still prescribed gov.uk/drug-safety-update/d...
Very sorry to hear you were one of the victims of Prolia, It should be banned but it's all about money. From what i understand, it makes no difference which bisphosphonate you take post Prolia, just sheer luck if you dont sustain rebound fractures. All that bisphosphonates do is harden old bone which eventually becomes brittle and also causes spontaneous fractures. A friend's mother has only recently had this happen just crossing the road and the femur snapped in three places.
Thanks for your commiserations, elaine2447. Yes, these osteoporosis drugs can be nasty if you're one of the unlucky ones. I consider myself fortunate that my fractures were not lumbar or thoracic, so not disabling unlike those of so many others on this site who are in constant pain and can barely walk. I'm doing well 7 months on, and can walk 6 kms several times a week now (used to do 12 kms before fracturing, but building up to that again). Fingers crossed the rebound is almost over and I won't have any more fractures.
I understand that using alendronate or zoledronate as a relay drug gives one a better chance of not having rebound fractures post Prolia as they are the more potent bisphosphonates but, as you say, a good outcome is not guaranteed. So much is as yet unknown about the impact of these drugs on the individual.
in reply to Uglow
Hi Uglow,
here is the information about the drug denosumab (Prolia). Below is the link from the ROS website about this drug.
Iv just been diagnosed with osteoporosis I’m terrified
Uglow, the numbers you posted above, the screenshot from 5 months ago, t-scores -2.4, -1.8, and -2.3 are not in the osteoporosis range. They are all osteopenia. Make sure your doctor has checked for "secondary" causes of bone loss prior to taking meds. My doctor failed to do this and I am not happy about it. I recommend using this list betterbones.com/testing/wha...
Also, if you are a smaller person, I'm 4'11", check out Dr. Ott's BMAD calculator: courses.washington.edu/bone...
I had a heck of a time getting the facility that did my DEXAs to give me my ancillary data (it took over two months), but once I got it and plugged it to the BMAD calculator my scores improved significantly. All the experts seem to be aware that DEXA scores for smaller people can be wrong. My primary care physician and endocrinologist and OB/GYN all seem to have NO CLUE about this--again I am not happy about this. I would not have taken the drugs if I had known that my numbers were better than the DEXA showed.
Appalling to think that the FDA gave out a warning about Prolia in January 2017 when fortunately my rheumatologist was aware of these risks. Good old UK came up with a warning in 2020 . It is still being prescribed. Two of the ladies on our group on Facebook have suffered multiple spinal fractures due to leaving it off. Now the next disaster no doubt will be Eventy (romosozumab), also manufactured by Amgen in conjunction with UCB. Again, this was rejected by the FDA 5 years ago and now all of a sudden, it's safe!!! gov.uk/drug-safety-update/d...
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