I've had problems with Fosamax and can't take Boniva due to kidney failure. But the Prolia is a 6 month injection or infusion, so I'm concerned about side effects.
Thanks for any input.
Anyone tried Prolia for osteoporosis? If so, did you have any side effects from it?
Question posted by sara12345 on 18 July 2012
Last updated on 2 February 2024
81 Answers
hornswoggle
2 Feb 2024
New Black Box Warning for Prolia is for severe hypocalcemia.
I was prescribed Actonel in 2019 after a spontaneous fracture of the pubic ramus. I had a dexa scan which put me in the range for osteopenia but due to the spontaneous fracture I was lumped into the osteoporosis category. I was first prescribed Actonel ec by my GP but had an unpleasant reaction to that and was sent to a rheumatologist who prescribed Prolia.
Now why, when it was known I didn't tolerate an oral bisphosphonate would you prescribe Prolia which you cannot stop without relaying onto a bisphosphonate to counter the potentially catastrophic rebound effect of Prolia upon cessation.
I didn't accept Prolia immediately, in fact I waited for 12 months without any more fractures but based on dexa results it was advised that I do take up the Prolia. I was 63 years old. I was led to believe that I was made of glass and would shatter into a million pieces without it. I was completely unaware of the nature of denosumab and the fact that it simply causes old, dead bone cells to be retained therefore creating an illusion of more density. It is old, dead bone and the quality of that bone is not good. I do not recall having any meaningful conversation around side effects except the mention of osteonecrosis of the jaw and the need for thorough dental check ups and good oral hygeine.
After my first dose of Prolia in August 2020 I became very depressed and my knee, in which I did have osteoarthritis became extremely painful quite suddenly, such that I had a total knee replacement in April 2021.
There have been having ongoing issues with musculoskeletal pain, I developed cataracts, high cholesterol and other disagreeable side effects including my hair falling out which may not be a medical emergency but it sure hits your self esteem. As I was never given any indication that these were side effects of Prolia I simply believed I was falling apart. To age 10 years in a period of 3.5 years is not normal, it is a result of Prolia (denosumab). After my 7th injection the musculoskeletal pain ramped up to an alarming level and I decided to discontinue Prolia.
I have over the past 4 months been educating myself about Prolia through peer reviewed papers, studies and articles. I am very unhappy about what I have learned.
I consulted an endocrinologist to take me through the long, expensive and unpleasant transition from Prolia to a bisphosphonate and will have my first infusion of zoledronic acid on May 5th. I am not looking forward to that but hope that my bone turnover will be controlled and will have bone turnover markers tested every 3 months to ensure I don't go into rebound. When it is all over in 12 or 24 months I hope to get my life back. We'll see.
DO NOT take this drug without being fully informed about the unique and dangerous REBOUND EFFECT that is unique to this drug. Doctors and even OP specialists are often inexcusably unaware of this even though the manufacturer warns about it, the research and studies report and warn about it, rebound requires expert treatment.
Sideffectsmeds
1 Feb 2024
Yes I had five injections of Prolia and on the fourth injection I went to stand up to go to the toilet early in the morning and I couldn’t stand up because of excruciating pain all around my waist I went to hospital not knowing what it was the hospital couldn’t find anything unusual even after X-rays - I didn’t think about Prolia until I had the next and final injection “exactly the same thing happened” it was after this my daughter stepped in and said don’t take that drug anymore look at the side effects which I did and stopped the drug - I also joined a Prolia (Denosumab) support group and now I’m in aged care because I can no longer walk unaided without a walker Prolia has ruined my life - before Prolia I could walk - being in aged care I see so many with walkers and the majority say they get a six monthly injection for their bones and not really knowing what it is - one lady I spoke too said she gets a calcium injection every six months ...
? I know better but I say nothing because they are too old to understand and I don’t want to worry them - I stopped taking Prolia nearly five years ago I still can’t walk without the walker and I live with the pain everyday - in list of side effects it says don’t stop taking Prolia otherwise you will fracture ? I haven’t luckily- but I’m too afraid to have an X-ray because I can’t lie straight because of pain - I have no thyroid and was diagnosed after first X-ray with osteopenia not osteoporosis? which is very different so I’m told by my support group - and I think that maybe that’s two reasons why doctor shouldn’t have given me the injection - he also never discussed any side effects just handed me a script I took it back and then he injected me with the drug- I also get rashes every now and again - I’ve never had a rash in my whole life -
Pickle4382
1 Feb 2024
I took two injections per my doctors advice and now have had 12 spine fractures and my sacrum broke in 4 places. This has been over the last 8 years! Amgen did not tell consumers about these horrific side effects until they were sued and made to place a black box warning on the label. That was 2019. Another terrible side effect is loosing teeth. You can google side effects and find conversations about the side effects. I am looking into a suit against Amgen. Just say no! There are much better, natural treatments for building bone back without any ill side effects.
sherryelaine6
1 Feb 2024
I have had two shots of Prolia. No side effects from first one. However 2.5 months after the second shot, I started having muscle spasms in back at hip level on the right side. These were mild at first, but have gotten progressively worse to where it is excruciating to stand up and cross the room. Needless to say, I am virtually immobile. So, I’m taking a muscle relaxer, Tylenol and salon pas patches in order to function. This has been going on for 7 weeks now. BTW my sister had this same side affect in the same spot as mine.
Called my specialist and they said it could not possibly be due to Prolia. They consider any side affects occurring with 2 weeks of injection to be a real side affect and told me to contact my GP. He gave muscle relaxer and advised to see orthopedic doctor. Waiting to see what they have to say.
Also, my endocrinologist said that the drug is out of my system a few days after. That’s not what the Prolia website says.
cleo130
4 Dec 2023
I took Prolia for a number of years with some previous decent improvement and no side effects. After a 3 year "vacation" I am back on it, having had my second injection with no complaints. I have had Osteoporosis for many years and this drug seems to be treating me well.
awessel27
4 Dec 2023
Taking this drug was the worst mistake of my life. It aged me 20 years and caused a lot of pain. Stay away, especially the injections
arla7247
3 Dec 2023
I'm sorry ,but maybe you don't want to hear this. I had the second injection ,not because I believe in it. I had to argue with my doctor about side effects, She finally looked it up and was absolutely stunned.
Since starting Prolia , I have very bad foot pain ,both feet, started a couple months after started Prolia doctor said " no ,you "just" need orthotics" . $600 for orthotics, did nothing for pain . So now it is "circulation" , waiting for the creepy ultrasound for that. The pain specialist for the spine injections I get said ,maybe its Plantar Fasciitis , so that's another ultrasound I'm waiting for to check that.
But the biggest issue, they don't tell you before you start. You can't just stop taking it, you have to be changed to something else right away, if not it can cause spinal fractures .Other possible effects is mess with your jaw and for some reason ,there is the odd broken bone in the leg , I think its the thigh bone. I'm so angry we aren't told ,even my doctor didn't know.
Now I'm fighting to get another med, and I can't just stop this one, feel trapped. It seems it would be cheaper to try changing the med instead of all the tests. But thank God I live in Canada so I don't have to pay out of pocket.
hornswoggle
6 Jan 2024
Yes, it's shocking. I'm sorry for your troubles. I'm about to relay off Prolia onto Zolodronic Acid (Reclast) which makes me very unhappy. It's the "Prolia Trap" and doctors often don't warn people about it. I've had nothing but bad side effects from Prolia and after 7 injections I now have a compression fracture in my spine.
Marsha44
3 Dec 2023
I've had 2 injections and no side effects. It has been easy. One more year to go... and if all goes well I'll have a year of Reclast.
Pickle4382
3 Dec 2023
I took two injections 12 years ago. As of about 5-6 years ago I started fracturing my vertebrae without falling or having an accident. I now have broken 12 vertebrae, had 10 kyphoplasty's, and am now recovering from fractured sacrum (4 fractures)! I do not have osteoporosis anywhere but my spine. I just saw an endocrinologist and as he was going over all the bone meds he mentioned Prolia will cause severe fractures in the spine if stopped! I am now looking for a class action group! I have an all natural protocal that I've used to keep the rest of me out of osteoporosis.
hornswoggle
6 Jan 2024
This site is very helpful but, in the case of Prolia, they should have the fact that you cannot stop it without a relay medication front and center of the information.
You won't get anywhere with a class action though, once Amgen started listing the rebound phenomenon on the medication side effects list it shunted the responsibility onto the prescribing doctor. Ever tried to sue a doctor?
Pickle4382
2 Feb 2024
Yes hornswoggle I understand, but at the time I was given the injection there were no warnings on the label. My attorney thinks there may be a way to use that. Why in the world would I think that a bone drug would be the cause of my fractures?? It was supposed to help not hurt! When the discovery was made that the Prolia was the cause you could have knocked me over with a feather!
PoodleMum
17 Sep 2023
Hello from Australia. I have had one injection of Prolia, horrific side effects. Currently have a dental abscess, teeth aching and credit this to Prolia. I am working full time, 67 years young, healthy, active and plan to stay that way. I have researched natural therapy for bone density and health. Currently working through information on Osteoporosis reversal program. GPs are so keen to give medication, do not look at diet, healthy eating, exercise and how to reverse this.
I would like to do another scan next year and interested in seeing the improvements in my scan. Then will need to try and educate my GP re same. I work in health, prefer to find other natural therapies to maintain my health. Wish you all the best.
sara12345
20 Sep 2023
I applaud you for looking for diet, healthy eating, and exercise. Wearing estrogen patches improved my bone density by 9.4%!! After experiencing bad effects from Prolia and the very long painful possible side effects from other bone medications, I told my endocrinologist--never again. However, I really need estrogen for my 71 years body. It has done wonders for me in many ways, but I hadn't expected such a bone density improvement, even though my gynecologist recommended it for my bones. And that is the only reason that my bone density improved by 9.4% from 3 years ago. Due to a stroke, I was not able to exercise at all because it would either worsen or cause severe migraines. The endocrinologist said that with the way my bones are now, he wouldn't even recommend any bone medications. Hurrah!
rowelisa87
28 Sep 2023
Hello from Memphis! I too had one injection of Prolia, feeling the worst I ever felt. I knew my loose teeth was one of the negative side effects of Prolia. I had that shot about 10 years ago in my early 50s. I am 62 now and relieved I have said NO to any Doctor suggestions regarding medications for osteoporosis. Losing bone and muscle mass is part of aging not a disease. Do not take medications that debilitate your quality of life!
hornswoggle
6 Jan 2024
Hi, I'm in Australia too. You do know you cannot just "stop" Prolia? Even after only one shot. You must be relayed off it with a bisphosphonate and have your bone turnover markers monitored to avoid the rebound phenomenon whereby you experience multiple vertebral fractures.
Norcouser
28 April 2023
I’ve had three injections of Prolia. I finally agreed to take it, as my doctor had been urging me to for years. My T- score in the spine was -2.5. About 3 weeks after the 2nd shot I began to have joint and bone pain so I told my dr I didn’t want to get a 3rd shot. He talked me out of stopping the injections because he told me there would be a rapid worsening of my bone density and the literature seems to say that as well. But after the 3rd shot, I couldn’t take the bone and joint pain and the pain in my teeth and gums so I decided not to get a 4th injection. He started me on Fosamax which caused worse pain than the Prolia. I only took 2 doses and had to stop that as well due to joint, bone, and muscle pain so bad I could hardly walk and couldn’t sleep. My hands swelled up as well. I’m now taking calcium, vit d, magnesium and K2 and have an appointment with a functional MD to see what else I can do. I’m still having pain but it has lessened.
I am afraid of bone loss now that may be greater than I would’ve had if I had never taken the Prolia. Wish I hadn’t ever agreed to take it!!!
sara12345
29 April 2023
The doctor who told you to stay on Prolia was in favor of your terrible pain? Is that preferable to bone loss? And after just 2 injections of Prolia, I have to wonder that would cause worse bone loss. Or even after just 3 injections. What a horrible drug that has that as a consequence!! Thanks for telling people about it. I had to stop Prolia after just 1 injection, because of the pain and because my parathyroid levels were through the roof. There are other ways to increase your bone. Exercise can. Estrogen patches increased my bone mass by 9.4% after the previous bone scan. A 6 percent increase in bone density can translate into a doubling of bone. My endocrinologist told me that given the increased bone density, he wouldn't even recommend bone medications for me! And he had been very pro medication at previous appointments. There is very little risk with estrogen patches. You need to discuss it with your doctor.
Having adequate calcium and Vitamin D, but you can have too much. Your doctor should blood test you to determine the right amount, if any, that you should take. And Fosamax can cause pain indefinitely. I haven't trusted the bone medications out there, but they have come out with a new one that sounds more promising--Evenity. I hesitate to tell you about it after what you've been through. As for me, I'm sticking with the estrogen patches. I sincerely hope that your pain will continue to subside. Mine lasted almost 10 years from just one injection of Prolia.
Norcouser
29 April 2023
Thanks for your answer. I will look into estrogen patches but I’m also interested in finding out more about my parathyroid in relation to my bone density issues. My parathyroid level also went up to 125 after my 2nd Prolia injection and I had a critical phosphorus level of 1.1 as well and had to be given IV phosphorus in the hospital. But both of those levels were in the normal range after the 3rd shot so the dr did not think the Prolia was the cause. None of this makes sense I know. All I know is I am miserable and would not recommend any of these bone building medications to anyone.
Wezebeze
16 Feb 2023
Had first injection of Prolia in August. Now I am due for second this month. Since September I have been having back pain that caused me to go to orthopedic surgeon. No surgery needed just PT. So here I am doing PT and still having problems. Thinking seriously about not having it. T scores are all above 3.2. Walk 4 miles everyday. However this back pain has me wondering about this injection again.
sara12345
16 Feb 2023
Sorry about your pain. You should look at the many responses from those who have had bad side effects from Prolia. I had bad side effects for 10 years after just 1 shot of Prolia. I am 71 years old and have gained over 9% more bone since the last bone density test. My endocrinologist said that was from my estrogen patches. I have not been able to exercise at all since my stroke 14 years ago. So the estrogen was the only way that this happened. The many great effects from estrogen far outweigh the slight risks from estrogen--with the patch.
Wezebeze
17 Feb 2023
Thanks for your response. I have had a total hysterectomy at age 23. And have taken estrogen your 40 plus years. Off of it now. Cause my Dr said it is time to. Hmm will talk to Dr. About next injection.
sara12345
17 Feb 2023
How wonderful to get a response. Usually people don't bother. You should go to the manufacturer's website for Prolia and click on possible side effects. It has a lot of truly horrible ones. See for yourself. I wonder why your doctor thought it was time to stop estrogen. Around here it depends on the gynecologist. Some are leery and others are fine with it. I also wonder what changes you felt after you had stopped estrogen. It made a huge difference with my quality of life, but it doesn't seem to have had an ill effect for you. That's good, except the lack of estrogen will cause bones to deteriorate more. If you decide to get another injection, I do hope that your second injection of Prolia won't cause worse pain as you sometimes see in the responses. I would be interested to know what you decide and how it goes. In any case, I do wish you the very best.
Wanda1997
16 Feb 2023
I took 3 of the shots and on last one my hip socket and knees starting hurting none stop and I mean horrible pain . I would never take another as long as I live !!! Then I tried Actonel and one drug it almost burned my stomach up
sara12345
18 Feb 2023
Very sorry to hear that. I think that you've made the right decision to not get any more shots of it.
Pamdora
16 Feb 2023
On my second dose of prolia. The first one I had no side effects. Second one three weeks in feeling pins and needles and tingling through my body. Anyone else experience this ?
arla7247
19 July 2023
I had and have horrible foot & leg pain , maybe its all connected
Inactive
1 Dec 2022
I am 77 and I took alendronate for 9 months then stopped because of side effects and reduced kidney function. Now my Rheumatology Doctor prescribed me denosumab (Prolia) for my osteoporosis. (my DEXA scan results are around -2.5). I read most of the comments here. I see People complained about denosumab and got pains and no benefits. I am really confused about this situation. I think I am not going to get denosumab. I am now on calcium carbonate and vitamin D only. What can you guys recommend to me for my situation?
sara12345
18 Feb 2023
Many, probably most do not have the bad side effects from Prolia, but as you can see from this question as well as others on this website, there are a lot of us who have suffered from it. In my case, about 10 years. And look at the manufacturer's website where they list MANY terrible side effects.
Other ways for your bones listed online are:
Eat Lots of Vegetables. Vegetables are great for your bones. ...
Perform Strength Training and Weight-Bearing Exercises. Engaging in specific types of exercise can help you build and maintain strong bones. ...
Consume Enough Protein. ...
Eat High-Calcium Foods Throughout the Day. ...
Get Plenty of Vitamin D and Vitamin K. ...
Avoid Very Low-Calorie Diets. ..
BTW, based on my blood work, my doctor told me NOT to take any calcium. She said I was getting enough in my diet, and having too much with calcium pills would be detrimental.
I don't know if you saw my response above. I am 71 and got over 9% more bone density just from estrogen patches. I was not able to exercise after a stroke. Some doctors are deadset against it, while others look at the research more closely and do prescribe it. But you would need to ask your doctor about having it based on your medical history. Go to the Cleveland Clinic (a very reputable medical clinic) to see the benefits, including protecting your heart and brain, improving muscle mass, boosting your mood and improving your sex life. HOWEVER, they do say that if you wait 10 years after menopause to start hormone replacement therapy, there are risks of a number of diseases. My mother had bad osteoporosis, but was very careful. She died at 88 years and never broke a bone. I know that it is a difficult decision to make. I would be interested to know what you decide and wish you good luck.
arla7247
19 July 2023
Don't just stop.
Related topics
boniva, fosamax, osteoporosis, renal failure, side effect, injection, prolia
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