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 13 August 2024 (4 weeks ago) by wards33
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.
It is frustrating trying to decide whether to risk the side effects. I am also still undecided. I took Prolia in Jan 2024 and am refusing the 2nd shot that is due.I'm not sure if it's the Prolia but I have severe neuropathy from chemo and the muscle spasms were more frequent and intense and unbearable. Like you, the other meds, we don't qualify for because of other health issues.
I recently decided to do the following: I am trying to move slower, daily exercise for osteoporosis, making sure I get enough calcium and other minerals and vitamins needed. I will re-evaluate in 6 months. It's all a risk, whatever we do! Hope you find this forum helpful and wishing you healing.
I was given Prolia in 2020. The side effects (all reported now to the Therapeutic Goods Administration in Australia) were very unpleasant. One takes a drug, things start happening, they consult their doctor and the doctor will say things like "you're getting old". I was only 6 months older than I was when I started the drug!
So, not everybody has these side effects I'm sure but for those who do prepare to be gaslit by doctors who are extremely uneducated about this drug.
I won't list them all but in the end, after 7 shots, the musculoskeletal pain I was experiencing was intolerable. My hair fell out and then the final insult after shot number 6 was Lichen Sclerosis - ALL these side effects are recognised in the Prolia Monograph. Read it, copy it and show it to your doctor.
Next and most importantly, Prolia cannot just be stopped. You must relay off it using a bisphosphonate because Prolia has a Rebound Effect that is unique to Prolia. When you stop using it, your bones deteriorate to levels lower than they were when you started. This can result in multiple spontaneous vetebral fractures, it is not uncommon and that is because so many doctors are ignorant of the need for follow up therapy to control the Rebound Effect. It is clearly stated in Amgen's prescribing information and there is no excuse for this ignorance. Then, you must have bone turnover markers tested prior to stopping Prolia to get a baseline and then every 3 months after starting your relay medication because Rebound from Prolia can be very fierce indeed and last for 3 years.
In February this year I had an infusion of zoledronic acid (Aclasta or Reclast) to relay off Prolia. My bone turnover markers began to rise alarmingly even though I had the most powerful bisphosphonate available infused into my body. Zoledronic acid is meant to be a 12 monthly infusion, I had to have a repeat infusion at 6 months (last week) to get Rebound under control.
Lastly, dexa scans are very unreliable. At my 6 months check last week I had with me a dexa scan and the bone turnover marker tests - the dexa scan showed improvement whilst the bone turnover markers (CTx & P1NP) showed clearly that Rebound was out of control. So, the doctors who say "we'll give you a zoledronic acid infusion, or whatever bishphosphonate they decide on and follow up with a dexa scan in 12 months" are simply uneducated. I am outraged by the level of ignorance around this powerful and dangerous drug and am blessed to have found an endocrinologist who knows exactly what she's doing. You do know Prolia has a black box warning for hypocalcemia right? If you have kidney issues, perhaps you should look at that. Good luck with it.
I bought my prenatals on Amazon. Nature Made, with folic acid and DHA. I take one Sunday, Tuesday, and Thursday. And i still take a reg vitamin daily. I also bought Choline Bitartrate, amazon, and take 1 M, W, F. Also 2 caltrate 600 ea and 1 vitamin D3 10,00 IU daily. I feel 10 to 12 yrs younger.
I now exercise more, stretches (VERY IMPORTANT), and I'm stronger and toned. But yes, I still walk like Frankenstien's monster when I first get out of bed.
hornswoggle, my doctor and I did not know that in 2012! It was NOT in their literature then. In 2019 they were sued and made to place a black box warning on the label stating all the bad side effects.
And to be honest, the two injections I received did not improve my bone density numbers.
Boat load of side effects. Blisters and sores inside my mouth, that didnt go away until 6 mos after stopping the shots. . Raw tongue. No taste buds. Bone pain and cramps. There are more, but you get the idea. I had a total of 4 shots. When it came time for the 5th, i said no more. My dr said she only had 2 patients who had reactions and encouraged me to continue. I said now you have 3 and no more shots. She refused to give me the patch, which worked for many. After my 4 shots, my bone density only improved by 0.04. I started taking prenatal vitamins, and in 6 months my bone density improved by 3.6. Prenatal vitamins are made for the mom and fetus. Lots of everything. There are no children in my future, but this stuff works for me. I have more stamina. I work out and have muscles. Before I could barely move. I'm enjoying my life again. Oh, it took about a year before most of my taste came back. I will never take a shot like that and I recommend to everyone, do not take it! The only end result is big pharma gets wealthier.
Osteoman, is it possible to find out which prenatal vitamins you take for bone loss that improved your scores? I, too, have had unacceptable side effects from currently prescribed osteoporosis drugs. Thank you.
It is an injection every six months. With no complications for me
Yet.
Side effect yes! I took 7 shots of Prolia. Problems arose right from the start but at that time I was unaware of the many, many side effects and doctors simply brushed them aside. Their favourite response is "you're just getting old". I was 62! I also had a compression fracture at T-9 after 3 shots, Prolia does NOT stop fractures it MAY stop fractures - the statistics around how many people have to be treated to avoid one fracture are astounding.
I had osteoarthritis in my knee when I started Prolia and the pain associated with that increased enormously to the point that I had a total knee replacement after shot number 2. After shot number 5 I started getting all over musculoskeletal pain and after shot number 7 I had become informed about the true side effects of this drug.
I was about to get a knee replacement in my other knee due to the pain being caused by Prolia in January this year. Immediately before my next Prolia shot was due in February this year the pain subsided in my knee and the all over musculoskeletal pain disappeared entirely. No knee replacement required - talk about dodging a bullet. You CANNOT just stop taking Prolia, it must be followed up with a bisphosphonate to counteract the inevitable Rebound Effect which can cause multiple vertebral fractures. It's a long and expensive road, having bone turnover markers tested every 3 months to ensure Rebound is under control - I just had my 6 month blood draw and if my CTx is too high I will have to have another Aclasta infusion. Thank goodness I have an endocrinologist who understands the nature of this drug. Be very, very wary of Prolia.
The worst thing I ever did in my 69 year of life. Got an injection 4 years ago and am still suffering. Rash first, then pain, horrible pain in joints, teeth loose and then 2 years ago out of the blue RA. I wouldn't but my experience was horrific and still is.
I had two injections and they caused me to spontaneously fracture 12 vertebra and my sacrum. The med stays in your body for about 10 years, according to my doctor. I started fracturing about 6 years after the injections and have fractured every year, sometimes three times in one year since. I have contacted lawyers about this. The black box warning was just placed on the packaging in 2019! Be careful if you decide to use it. Look at different websites for the people that have been harmed from this drug. There are MANY. and so many more are worse than me! Another huge side effect is loosing teeth.
There is still no black box warning about Rebound. Only hypocalcemia. Disgraceful. I'm so sorry for your suffering.
Has anyone had their neuropathy worsen or old injury pain come back when using Prolia?
I have had one injection of Prolia in January 2024 for osteoporosis caused from chemo treatments in 2004. I am 67. Since the injection, my neuropathy has worsened with daily leg pain, tingling and debilitating muscle cramps. Also, I have back pain from an old injury that I haven't had in 20 years. I am not sure if it's the Prolia, and am thinking of stopping the next injection which is due now. I will try natural remedies if I decide to stop. I want my life back!
The injections (2) made me spontaneously fracture 12 vertebra in my back along with my sacrum. Just say NO!! There are many people who have been harmed by this drug. You can search the internet for groups.
You are aware that you cannot just stop Prolia, yes? It causes a Rebound Effect unique to Prolia whereby your bone loss will increase enormously and the risk of multiple sponaneous vertebral fractures is high. It must be followed up by a bisphosphonate to counteract the Rebound Effect. This is clearly stated in the Amgen literature.
I have been experiencing swelling in my feet and legs for the past two years but thought I was just getting older. In these last 3 months, I have been horribly swollen, more than before and in a lot of pain. I was put on diuretics which worked at first and then stop working. I did loose 10 pounds of water weight but some of it is coming back on. I have a total of about 20 lbs of water weight to loose. I have had many tests to determine that I don't have heart, thyroid, kidney or liver disease. We eliminated the statin I am on as a cause. I also was tested for venus insufficiency. The only thing that they can come up with is the Prolia. I been on Prolia longer than recommended so I am going to see an MD that specializes in Osteopenia to switch me to another medication. Apparently, you cannot get off of these meds once started. In January/February I wasn't swollen- but I thought it was because the weather was so cold.
Now the doctors believe that I am swollen because of the Prolia. My sister just had a prolia shot about 6 weeks ago for the 2nd time and she is now getting swollen hands and feel. I am literally counting the days until the 6 months time period for the Prolia to end. Anyone else swollen from the Prolia?
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.
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 -
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.
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.
boniva, fosamax, osteoporosis, renal failure, side effect, injection, prolia
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