I do not have osteoporosis but my doctor convinced me Prolia was developed to prevent osteoporosis in people who do not have it. I looked it up when I got home - it was all lies. She has been our family doctor for many years and I trusted her, but not any more. Now I am looking for a doctor who will help wean me off Prolia so I do not have to have another shot.
Totally unbelievable!How many injections have you had?
My understanding of the guidelines for prescribing Prolia is that it is for post-menopausal women with severe osteoporosis at high risk of fracture for whom no other osteoporosis drug (eg. a bisphosphonate) has worked. What your doctor has done, IMHO, is downright irresponsible.
Having said that, two male friends of mine whom I see infrequently and by sheer coincidence saw last week one day after the other, each told me that they had been put onto Prolia by their doctors. I was absolutely horrified as they each had a DEXA scan - and are osteopenic! So, as with you, this was a preventative measure by their respective doctors, and completely unnecessary. Neither of them had been told they would have to be on Prolia for life, the dangers of missing or delaying an injection, the risks of osteonecrosis of the jaw and atypical femoral fractures, or the fact that they would have to take a bisphosphonate for at least two years if they decide to stop after the second injection. They were shocked when I informed them of this, and angry with their doctors for not telling them before they had the first injection. One of them, aged 76, actually fell in a shopping centre a few months ago - and didn't break anything. His bones are fine. Fortunately both of them have only had the first injection and so should be able to stop without the risk of fractures, as should you. After two injections, you have to go onto a relay bisphosphonate. I took Prolia for two years and am familiar with the weaning off process. I still broke five bones ☹️. There is no guaranteed way of stopping this drug safely after more than one injection.
I find this completely shocking and can understand why rly4-81 feels let down by a doctor she trusts. It's very fortunate your friends ran into you, so they could be given the information their physicians should have provided and learn from your difficult experience. (Since you mentioned they are male, a possible indication for Prolia would be when undergoing treatment for prostate cancer, but even then, full information should always be given.)
Unbelievable.
No prostate cancer in either of them - just ignorant doctors and reckless treatment for nothing but men in their 70s. I find it reprehensible that these so called medical professionals are potentially wreaking havoc in their patients' lives.
Yes, it was indeed a stroke of luck that I saw them both and the conversation turned to bone health and their treatment. They both intend not to have the second injection and will be raising the issue with their doctors.
A female friend of mine broke her ankle a few years ago after stepping back and tripping over a small bollard on the edge of a street. Her doctor did a DEXA and she too was diagnosed as osteopenic and advised to start on Prolia. She knew what had happened to me and my tussle with Prolia and discontinuing it, so asked me to review her DEXA results and give her advice as to what she should do. I told her to do nothing except to find another doctor!
It may not be much consolation after all you've been through, but you're sharing really helpful information about your experience, both here and with your friends. Thank you.
Thank you for your comment. It makes me wild that doctors are just doling out Prolia like candy without informing their patients of the downsides of taking the drug which can have horrendous results if dosing schedules are not adhered to, apart from the potential nasty long-term side effects. Withholding this information efectively means that their patients are not given a choice.
I am one of the lucky ones in that I didn't have disabling rebound fractures (mine were of the sacrum, pelvis and ribs) and these appear to have healed well. Countless others have had their lives ruined because of medical mismanagement in relation to Prolia. These days it's perceived as being a drug of last resort because of the rebound fracture problem, from what I've read in the medical literature online. That message doesn't seem to have filtered down to a lot of doctors.
Do you have a link to the medical literature that states prolia should be given as a last resort? I would very much like to read this article and share it with my doctor. Thank you.
Excuse me jumping in here, but I saw your question. Here's one example: proliahcp.com/-/media/Theme... ("high risk for fracture", "cannot use another osteoporosis medicine or other osteoporosis medicines did not work well") - in other words, definitely not for osteopenia/preventing osteoporosis.
Thank you for your reply. I had three different doctors wanting to prescribe prolia, my PCP , my Endo and my GYN. No discussion of other options from any of them. At the time my risk for any fracture was 8%. I choose not to take meds because I did not like the risk and side effects of prolia. I also had only broken my wrist severely 10 years prior to my dexa scan at age 55 which no mention was made that I should have a dexa scan. At 65 ( last year) I had my first scan and was diagnosed with OP and the 8 % chance of breaking a bone in 10 yrs. Then I went and fell belly flop down my daughters last two stair steps 7 mths later , one mth before my 66 birthday. I literally mean a belly flop onto a hardwood floor. Hit my head and needed stitches , two bruises on each side of my chest and both knees. No broken hip or spine. Broke to bones in my left arm just 3inches above my wrist. In the first an ex-ray after my arm was cast for a week it showed my bones were mending with a bow ,so it had to be reset and recast. If it is not healing straight in the next week I’ll need a rod and pins put in . So now I’m wondering if other medicines will be ok to start with and if I can stop them if I don’t improve or remain at the same dexa score and not take any more medicine. I was not given a femur score only a total left hip score of -3.1 and a spine score in L1 L2 and L3 of -2.9 . I truthfully still don’t to take any meds. Any advise or thoughts would be appreciated. I wanted the link tat said prolia was a last resort after trying other medicines or in severe cases. I don’t consider myself severe and I’ve never had any other treatment.
Before starting any medication have a look at my story. I'm not saying you shouldn't take a medication, but there are problems with them all, and it may be possible for you to avoid them altogether. The choice must be yours, after lots of research, not your doctor's. the doctors are very influenced by drug company reps, unfortunately.
healthunlocked.com/pmrgcauk...
and this:
Sorry - I didn't save the references at the time, but did come across many which stated specifically that bisphosphonates or other osteoporosis medications should be used before Prolia is prescribed, i.e. Prolia is used as a last resort. I found some easily a few minutes ago by Googling, though, and can find some more if you like when I have a bit more time:
mayoclinic.org/diseases-con...
Which osteoporosis medications are usually tried first?
Bisphosphonates are usually the first choice for osteoporosis treatment. These include:
Alendronate (Fosamax), a weekly pill
Risedronate (Actonel), a weekly or monthly pill
Ibandronate (Boniva), a monthly pill or quarterly intravenous (IV) infusion
Zoledronic acid (Reclast), an annual IV infusion
Another common osteoporosis medication is denosumab (Prolia, Xgeva). Unrelated to bisphosphonates, denosumab might be used in people who can't take a bisphosphonate, such as some people with reduced kidney function.
medlineplus.gov/druginfo/me...
Why is this medication prescribed?
Denosumab injection (Prolia) is used
to treat osteoporosis (a condition in which the bones become thin and weak and break easily) in women who have undergone menopause (''change of life;'' end of menstrual periods) who have an increased risk for fractures (broken bones) or who cannot take or did not respond to other medication treatments for osteoporosis.
melioguide.com/osteoporosis...
Ann Johnstone says
January 16, 2018 at 10:13 pm
I would actually say, “Make sure that Prolia is safe for your bones BEFORE even having that first injection! As a nurse, I am appalled at the frequency with which Prolia is recommended to individuals who have even mild levels of osteoporosis – or sometimes only osteopaenia (where bone density levels are on the low side of normal). Prolia is being promoted in Medical Clinics as a first rather than a last resort for treatment.
Only last week I had an appointment at the medical clinic I attend, and discovered that the medical staff were all in the conference room, listening to medical sales reps extolling the benefits of Prolia! Now I am only too familiar with these tactics, as I have been present at such meetings (as a nurse), where staff are encouraged to prescribe certain new medications or treatments – and even offered incentives to do so. Sure enough, my GP came out of the conference room with a gleam in his eye, and immediately told me my bone density scan had been on the low side and so, despite the fact that I have had no fractures in years, he had decided I needed to go on Prolia. I asked him what the side effects were, and he said, “Oh well, you may have a bit of back pain – but then, the control group in most studies showed no more evidence of back pain than the placebo group. And the benefit is that you only need to have one injection every six months!” He gave me no further information before insisting I have the injection then and there.
Sadly, it wasn’t until I returned home and checked out all the data online that I realized how I had been fooled! And as a health professional, I blamed myself for my naivety in agreeing to the injection. I could not believe that any doctor would recommend a treatment that had so many serious negative effects – most of which are not even discussed. For example, on Prolia, your bones are artificially remodelled because the medication blocks the growth of new bone, ensuring that old bone remains – and eventually becomes increasingly brittle. Then in many cases, completely spontaneous fractures of major bones and vertebrae can occur.
On the other hand, the medical profession should be recommending diet and exercise: Foods (including supplements, if necessary) that build bone (calcium, magnesium, Vitamins K2 and D3)… and weight bearing and strengthening exercises that promote the health and strength of bones. Sadly, I have learnt a lot over the past week via this unwelcome experience. Hopefully, others will learn more by reading this.
Thank you for your reply. I find this very helpful. I’m going to research this more. This makes perfect sense.
Another few:
Effective July 1, 2019, denosumab (Prolia®) has been added to the Nova Scotia Formulary for the treatment of osteoporosis in postmenopausal women and in men who meet the following criteria:
*Have a contraindication to oral bisphosphonates AND
*Are at high risk for fracture OR have had a fragility fracture or a decline in bone mineral density despite being on other osteoporosis therapies for one year OR are intolerant to other available osteoporosis therapies.
northoftyneapc.nhs.uk/wp-co...
Denosumab is included in the North of Tyne & Gateshead Formulary for second and third line use in postmenopausal women and in men at increased risk of fractures who fail to respond to, or have contraindications against, the use of oral bisphosphonates in accordance with NICE guidance.
health.harvard.edu/womens-h...
Denosumab may be an option if a woman cannot tolerate bisphosphonates.
versusarthritis.org/about-a...
Denosumab is recommended for osteoporosis in:
*postmenopausal women who can't take bisphosphonates.
my.clevelandclinic.org/heal...
Denosumab (Prolia®) is product that is available as an injection given every six months to women and men. It is often used when other treatments have failed.
medbroadcast.com/drug/getdr...
Denosumab is used to treat osteoporosis for postmenopausal women who have a high risk of fracture or who have not tolerated or responded to other osteoporosis medications.
nwhn.org/prolia-safe-treatm...
Prolia is injected two times per year. It should only be used if other treatment methods have failed or by post-menopausal women who have severe osteoporosis.
Good luck with your research. It's imperative to be extremely well informed before making any decision.
Thank you! I appreciate this .
That info is also on the dosing instructions that come with the drug. If a doctor has Prolia they have the dosing instructions. The dosing instructions are also posted on Amgen's website. If I remember correctly, it says it is "strictly to be used on patients who already have osteoporosis and are at high risk for fracture." My wording might be off but that is basically what it says. Do the doctors not read the instructions or read them and choose to ignore them? Who knows?!
I refuse to take any medication without researching it. My dr suggested prolia for my osteoporosis but I went to the Mayo Clinic for a second opinion and he said he would not suggest prolia for me even though my hip and spine are -3. I have chosen not to take anything at this time, I already have some gastro issues and from what I have read the other meds can be upsetting to the stomach. Always do your research and get other opinions before taking a new medication. I feel that they work on a commission by pushing drugs on people especially without giving them all the information.
Allopathic medicine is run by BigPharma. Look at the money trail ... who is getting rich off of it? Like you, I do my research and do not blindly accept what is told. Luckily for me, my doctor thinks the same way and is a true partner in my wellness. I take supplemental calcium and strontium. I also do a 3 mile walk with my dog every morning, which is where I am headed right now. 😁
projects.propublica.org/doc...
I'm not sure what the average doctor gets for prescribing/administering Prolia. But here's some information that shows some payments are received. If anyone understands better how compensation works, I hope you'll explain. Thank you.
I figured that they had to be getting something since the drug companies pay the sales reps six figure incomes. Big pharma is the biggest drug lord and the reps and doctors are pushers. Sad part is they legally get away with it cause they pad the pockets of the politicians and it’s all at the expense of our health. So sad and frustrating.
Thanks for posting—I found a doc I visited here—-she only got $1100 from big pharmacy—from prolia….she pushed for a drug I didnt know as I only scanned the popular names like reclast, prolia etc and read about them—I asked her for the popular name of this med—and she just left-kept on walking to the door—and out…asked twice with a polite voice-/she said you can pick it up at your pharmacy. I didn’t.I also wonder if there are other ways they pay docs—without being recorded—she’s well known and has written many articles—good reputation—but not from me. I sought help for osteoporosis as I had one fracture—and I was so disappointed—was treated so badly—-I still haven’t found help—but may try an endocrinologist—maybe they will talk to me!
Sorry you had such a negative experience. Not being listened to feels yucky, I know. Hope you find a health care provider you can communicate with. By the way, whether with this doctor or another, you might try messaging him/her with a follow-up question or concern. I find some doctors are very responsive and communicative through their practice's messaging service; others are not. It matters a lot to me whether a doctor has good online communication skills. A rheumatologist I went to didn't post visit notes on my online chart, even after she told me she would; and when I messaged her with questions, it took four or five days to hear back from her. My GP on the other hand, leaves notes about my visits and writes clear messages back to me within a day when I communicate. Good luck to you.
Try an endocrinologist or a bone health clinic which may be associated with orthopedics.
It's time to get a new doctor.
My primary doctor also convinced me to take PROLIA from my first scan that moved me from osteopenia-to-osteoporosis. I now have drug induced immunodeficiency. I will now begin with an endocrinologist this September ((doc booking 3 months out) to (I’m planning) also take me safely off PROLIA. What I’ve learned about the process, I’ve learned HERE! You’re in the right place. Best of luck to you.
THANK YOU for your reply and input. I just joined and this was my first posting. I am glad to hear from you that I am in the right place. Yes, hearing about issues and treatments (both good and bad) from fellow folks that have the same or similar issue is the best place to be.
Prolia and Blood Disorder
Parathyroid Hormone
Osteo rx
