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.
Question posted by sara12345 on 18 July 2012
Last updated on 24 October 2024
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.
I had a Prolia injection 10/24/2021. Two days later I noticed a burning sensation inside
my lower lip.
There were 2 red raised blister type lesions. I went to my Dentist and he said this is a
a allergic reaction to either a drug or food. I called Amgen and spoke to a customer service
nurse and she said this was probably a reaction to Prolia and unfortunately it would be in my
system for 6 months... So I have suffered with this for six months and 2 weeks and the
"mucosal Lichenoid drug eruptions are still there ! I know this was a reaction to the Prolia,
however there is no mention of this type of reaction in there clinical trial notes.
However I was told by the last customer service nurse ( who was really helpful) that this reaction
has been reported to them and FDA since the drug went on the market.
I am now just starting the process of seeking out a specialist to try and help me because it appears that even though the drug is suppose to only be in your body for 6 months it is still there.
I too have had all sorts of bone aches and pains but just passed it off to old age.
I strongly do not recommend this drug.
Sorry to tell you this, but 8 years after my one Prolia injection I was told that all dental surgery was considered a risk for 10 years after getting Prolia injections. Amgen advising you that the drug only affects your body for six months is mistaken as you have found out. And my side effects lasted 9 years. Yes, NINE years. Yours may well not last that long. In my case, I had no choice but to get the dental surgery. I didn't have a problem, but it was a risk.
Hi Sara - I had my first dose of Prolia (Denosumab) yesterday. Like you I was concerned about the 6 month factor (I react to everytrhing - including Panedien Forte and can't take Lyrica). I did feel nauseous for some of the day and had some back pain. I currently have a fractured foot which is why I had a bone density scan. I have sever Osteoporosis at 52 (early menopause at 38 is the contributing factor). My Doctor and pathologist are concerned over spinal fractures and hip fractures. For me - this is a no brainer. Every drug has risks and side effects. As long as you know them and are prepared then that is for you to decide. I hope you get better soon or at least see some results which ever path you take.
I understand you wanting to treat your severe osteoporosis. And it looks like your fractured foot was not due to it, but there is concern about possible spinal and hip fractures. However if I had read about all these terrible side effects from a medication that only brings MINIMAL benefit to the bones, I would never had gotten the injection of Prolia. It is now 8.5 years since my one Prolia injection and I am still having to take a pillow to sit on when I go to social events or to restaurants in case I can't find a soft chair to sit on. And since this Prolia injection, I still cannot tolerate a CPAP mask on my face that I had no trouble with before my Prolia injection. Probably most people will not have pain from it, but to take the chance of such pain gives pause to have it. I sincerely hope that you do not have bad side effects either from your first or your 3rd or 4th injection as referenced by many on this site.
I also had skin problems from Prolia. To pet my cats was like putting my hands in fiberglass.
I had terrible side effects. My bone and muscle pain was so severe, I was in tears some nights. I had the first two shots without a problem. The pains did not start until after my third shot. I was also not told that after starting Prolia, it is not safe to stop it without taking another bisphosphonate or you risk fractures of your spine. One of my current oncologists told me he will not prescribe it due to the side effects. If you have a Facebook account, please join the groups “Prolia side effects and complaints.” There are over 3,000 members who have had terrible side effects from Prolia. This site will provide you will a wealth of information before you make your decision. I would strongly suggest you research thoroughly.
Thank you for your comments.
My first injection caused hip and back pain. My 2nd injection caused the same plus severe pain in my upper arms and shoulders as well as fatigue and no energy. It lasted about a month and is much better now, but that is the last prolia injection I am going to take. The side effects are horrible and not worth it.
As you can see there are many others who have also had painful side effects from Prolia injections. I had only one injection 8.5 years ago, and I am still having bad side effects from it.
I received Prolia injections for about 3 years, and fortunately didn't have any problems. It also improved my T scores. I recently had to spend 16 months in 2 different nursing homes and was unable to get the Prolia. Next week I am going to find an Orthopaedist to resume the injections. I could not tolerate the oral medications at all. My mother also had Osteoporosis, so I have tried to keep up with bone density scans every two years, and I am past due for the most recent due to the nursing home situation, as well as COVID-19 making getting to specialists appointments difficult. I hope everyone has an improved 2021!
My mother had severe osteoporosis. She was always very careful and died at 88 years old never having broken any bones.
I had three Prolia shots and then started to experience bone and muscle pain. My doctor said it was not from the Prolia. She gave me a fourth shot. Since then, I have had terrible bone and muscle pain that frequently brings me to tears. After joining the Facebook group, Prolia side effects and complaints, I now know many women are having the same experience. If I knew now what I knew then, I would never consider Prolia.
Yes, there are many others who have had painful side effects from Prolia. I have no idea what percentage of people experience bad effects from Prolia. If only 1 out of 100 have the bad side effects, that is a lot, but from the doctor's point of view, they don't have other patients with the bad effects from it, so they don't know about it. Everyone should go to the FDA website and lodge their complaints. That is the only way that physicians will know how horrible Prolia can be.
I too had adverse effects taking Fosamax and Boniva. Family and physicians convinced me that I should take Prolia because I have osteoporosis and have had one vertebrae fracture in the past and a broken wrist after a fall. I deeply regret this decision because I am having several side effects. at age 81, decided that I do not want to spend the rest of my life having thigh pain and other symptoms that slow me down. Back pain is really severe... so my physical activities are limited. (not my style). I am due soon for my second injection of prolia, but I am not going to continue with it. Of course, I will discuss this with my physician who prescribed it.
What were your side effects? The back pain you list is not the side effect from Prolia, right?
And sorry that you had side effects. As you can see, many others had very bad side effects and some of them had the bad effects come after a series of injections, e.g. on the 3rd or 5th injection. I do wish you the best.
Sara
Don't take it !!!
I just had my 3rd... and last... prolia injection a week ago. The abdominal pain got so severe I ended up in emergency 4 days later. I have conditions
That cause pain, but now I know the increased pain has been to prolia. My hands, toes, jaw (I have TMJ) , back. I feel weak all the time, dizzy, cavities, and much more. They say the side effects can last for months or longer. Do a diet high in calcium and vit. D..
I wish this drug on no one.
I hope that your side effects go away soon. I had far worse side effects for the first couple months, then they got better. But I have had to live with disabling side effects from a single Prolia injection 6.5 years ago!
I just wrote a response to one of tte previous comments. THIS! I forgot to mention that shortly following my second injection I had severe abdominal pain that radiates to my chest. I didn’t Associate it with the Prolia at the time, as I’m just now connecting the dots. During this episode my blood pressure was extremely high, and I’m on blood pressure meds for #’s lower than what they were reading.
I just wrote a response to one of tte previous comments. THIS! I forgot to mention that shortly following my second injection I had severe abdominal pain that radiates to my chest. I didn’t Associate it with the Prolia at the time, as I’m just now connecting the dots. During this episode my blood pressure was extremely high, and I’m on blood pressure meds for #’s lower than what they were reading.
To TruthSeeker, I am sorry to hear about your abdominal pain which it was also experienced by the person above. It seems that so many have suffered from so many different pain syndromes. I hope that you will feel better soon.
Yes about 3 weeks after my Prolia Injection I began having terrible jaw pain. My dentist diagnosed it as TMJ and I had a night time mouth guard made, ate a soft diet.
However it got worse and I was at my ENT for an annual exam so I asked him about it. He sent me to an Oral Surgeon for fear I had the beginnings of Osteonecrosis or jaw bone death. He could not completely rule it out, but I am now waiting and watching to see if it develops. Very scary! I will not take Prolia again even tho this is a very rare reaction.
I know that you posted your answer a long time ago. I am just wondering how you are doing and if you did have Osteonecrosis. I hope that you are better.
Since I am at a high risk for fracture which was reflected in my DEXA scan in March 2018 I decided to try the Prolia injection. Additionally I have broken my right foot twice. I am allergic to both Boniva and ActenoI! I had the first injection in late June 2018 and had side effects for about three weeks. I had increased mucus production, fever, off & on sore throat like I had a bad flu. It all subsided & I know at this point there are no other treatments for me. Reluctantly I had my 2nd injection on 2/1/2019~ so far not even a sore arm~ no adverse affects!! I am one of the lucky women! Proceed with caution if you have other health issues!
I would not assume that Prolia is causing your symptoms. So many of the symptoms are common to many different ailments. What is most important is that you see an endocrinologist for osteoporosis and not just any endocrinologist. It took me a long time to find an excellent one that I trust completely. I have had osteoporosis for 30 years. I started treatment with Forteo for 2 years. Made me sick with every nightly injection. Many other side effects. It was worth every sick moment because the alternative is not a very appealing option. Forteo was followed by Prolia which was only safe to take for 2 years. (Same as Forteo). 2 became 3, and now it is 5. I am currently in my 4th year and am doing amazing. My DEXA scans prove these drugs work. There is a reason why your endocrinologist prescribes a certain drug. They all work differently and what I need may not be what you need. Forteo and Prolia are considered the "Cadillac" of all the drugs. They each target different bones.
It doesn't make sense to use a drug that targets your spine if it is your hip that is worse. I've gone the progesterone route and yes, it's good for your bones, but if you have full-blown osteoporosis and not osteopenia, it's like putting a band-aid on someone bleeding to death. Trust your doctor. He is highly trained in this field and yes, you may be one of the few that has side effects but first consider how well you could tolerate a hip fracture before giving up on treatment. I wish you all well and remember that new treatments are continually being researched.
Hailey 09... Thanks for the heads up... My endocrinologist suggest a treatment that would be through an IV and would last a year. I am still suffering from the Prolia. I will never allow my body to be controlled by a medication who's effects last for years. Please take care. My left leg is a miracle leg and a year before I got the shot, I had broken the femur bone. During the last two years, my legs have ached, concerning me about their health. I'm approaching this from another angel of diet, vitamin, and hormone patch... Please keep in touch! Good Luck!!
That is so wonderful! It's always hard to hear yet another new illness diagnosed by your doctor that sometimes we just feel so hopeless. I try to always take someone with me when I go in for my yearly appointment because a lot of times my mind is focusing on the one negative that I don't hear the 2 positives. I am so blessed to have tolerated Prolia well. One thing I figured out (not early enough) was how to make Prolia very affordable. I think a lot of people pay too much. If anyone feels like it's expensive I'll be happy to explain a couple of possibilities that can significantly lower your costs depending on your insurance plan.
It's terrible to have to choose between taking medication or not based on cost.
Take care everyone, especially this time of year when it's slick outside. No falls!!
I would not assume that is not since you have no way of knowing. These people had these effects after receiving prolia and many of them are documented side effects of prolia.
Occam's Razor. I disagree that all doctors are the experts on denosumab or bisphosphonates. In fact, I find most of them are very uneducated around these drugs and unwilling to be educated. If one is suddenly experiencing something that they did not experience prior to an injection of Prolia, if it is a reported side effect, it is very likely that it is what is causing the reaction.
I can't even begin to tell you the ways... … at the age of 66, I was in good condition no problems except with my bone density... thus my experience with Prolia. I was told that my immune system would be slightly altered, buy OMG! I had the shot Sept 6, 2017. The first thing was a UTI, to which I still have and have had over 20 different prescriptions for antibiotics. I also got a rash on my hand... one script; then a different rash on my hips, another script; an all together different rash began on my legs... now I have to go to an allergy doctor and by then, my arms developed a totally different rash. My allergenic could find anything I was allergic to externally and could not figure the source, but with the help of a dermatologist, after months of slathering 4 different types of creams and ointments on all parts of my body, it all began to go away... My gallbladder cratered within 4 months, and I developed a pinhead tip spot on my lung.
During all of this, I became very stressed with no control over all of these conditions. When it was time to get my second shot, my Endocrinologist was very insulted that I refused my second shot. I told him you can't just give women a shot without prior testing for allergies for 6 months!! It has been the most ungodly experience of my life, and I am still suffering! Please think twice about this medicine. I pray everyday for its passing from my system... I tried to contact the FDA, no interest; I talked to my Endourologist and of course, he only suggested an infusion that lasts a year... Seriously? Please be safe!
I know not everyone has had side effects from Prolia but I sure have. It has been 6 weeks and still have pain in back, legs and knees. Everyday and all day long. I am hoping I will get better and better till I am back to myself.
I am so sorry to hear about your pain. The intensity of my pain did get better after a couple months, but I am left with disabling pain in my bones and have skin issues 6 years later. I wouldn't get another Prolia shot if I were you.
I'm due for a Prolia injection tomorrow, 10-12-16 and after reading all the feed back I'm calling today to cancel. There must be something else I can take besides it or the pill that you take and wait an hr. before drinking or eating anything and can't lay down. I would rather go back on estrogen, or just take my chances with Osteo. Good luck to all you ladies that have already taken the shot and have issues, so glad I read up on it!!
I think you are wise not to get the Prolia injection. Also Fosamax and medications like it can have very long term bad effects. My gynecologist prescribed an estrogen patch (with progesterone) for me which has very little risk. It helps to prevent further bone loss. That's my strategy. My mother had osteoporosis and died at age 88 with no fractures. She was very careful. That's my hope as well. Hope that you will be okay.
I am going to close this question. It's gotten so long that if I see that there is a comment on an answer, there is often no way to know where to find it. So if you need to contact me, you can do it privately or start another question.
I just had my first shot of Prolia 5 days ago and I have had neck, shoulder and arm pain on the side where I was given the injection. I am also exhausted from lack of sleep due to the constant ache. I am really concerned now after reading the other comments. Why are we all treated like guinea pigs? I see so many drugs advertised on TV and a couple of months later there are attorney ads saying they will help you sue the drug companies due to illness or death from using a particular drug. I have been using a heating pad and taking Advil about 3 times per day to try to make myself comfortable. If I was still working (I am retired), I would not feel well enough to go to work. I will be calling my doctor tomorrow to see if there is anything that can be done about these aches and pains from this drug. I will definitely not get the second shot which was due this coming Spring.
That sounds wise not to get any more shots. As I said below, I am taking estrogen which has little risk, but helps prevent more bone loss. Good luck. I will probably close this question, so if you need to contact me, you can do it privately or start another question.
boniva, fosamax, osteoporosis, renal failure, side effect, injection, prolia
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