This past June 1st, the FDA approved Prolia ™ (denosumab), a brand new twice-yearly injectable osteoporosis drug by Amgen.
The first drug of its kind, Prolia was designed to treat and prevent postmenopausal osteoporosis for patients considered to be at high risk of fractures. It’s also marketed as an alternative treatment for those who have failed or are intolerant to other osteoporosis drugs.
Is this a time to celebrate, or is Prolia destined to end up in the osteoporosis “Hall of Shame”, along with the rest of Big Pharma’s Superstar osteoporosis drugs? I’ll let you decide, but first, let’s unravel the mysterious and tightly-woven cocoon wrapped around this novel drug.
An Old and Flawed Concept Disguised as Sci-Fi Technology
As if straight out of a sci-fi movie, the Space Agency NASA was involved in several studies related to Prolia. Here’s the scoop: in 2001, Ted Bateman, Ph.D. from Clemson University in South Carolina and Paul Kostenuik, a researcher for Amgen, teamed up to “…use the microgravity environment for evaluation of new pharmaceutical candidates (denosumab) in small mammals. Results may expedite the review of new pharmaceuticals.”1
They conducted studies on 24 female mice that spent 12 days on the International Space Station shuttle flight STS-108. Study findings confirmed that Prolia did prevent increased bone loss and maintained bone mineralization. So there you have it. The medical establishment is more than willing to send mice to space – but would they consider a natural, safe, and easy treatment? Out of the question!
On the surface, Prolia seems to be a breakthrough and fairly innocuous drug. But is it? As the first fully human monoclonal (laboratory-made) antibody and RANK Ligand inhibitor to be approved as a drug, it certainly sounds very complicated. But it really isn’t. Bear with me… I’ll explain.
Antibodies are proteins produced to neutralize “invaders”, such as bacteria and viruses. RANK Ligand (RANKL for short) is a protein that activates osteoclasts and is involved in immune-response regulation.2 As I explain in the Osteoporosis Reversal Program, osteoclasts are bone cells that remove old bone by a process called resorption. They make space so that new bone is deposited by osteoblasts, thus replacing old bone. These two processes are known as bone remodeling, the natural way by which bones renew themselves and stay strong, healthy, and more resistant to fracture.
Prolia: Same as Bisphosphonates… Only Different
Now back to Prolia. The natural inhibitor of RANKL is osteoprotegerin, a tumor necrosis factor (TNF) cytokine that binds to RANKL, preventing interaction with its receptor-activator RANK on the surface of osteoclasts.3 Cytokines are chemical messengers that help regulate the nature and intensity of an immune response. Remember this for later, because it all ties in together.
So, in plain English, Prolia mimics osteoprotegerin by blocking the effects of RANKL and de-activating osteoclasts. Say “hello” to stalled bone resorption and “good-bye” to new bone deposition. But wait a minute, doesn’t this sound eerily familiar? It should, because bisphosphonates achieve the same end result as Prolia, only through a different biochemical pathway.
At the end of the day, both drugs alter normal bone metabolism, not without potential long-term nefarious consequences. For example, sudden femoral fractures are linked to long-term bisphosphonate therapy, which can be attributed to the lack of bone remodeling. Add to this formula a dose of immune system tampering, and you’ve got yourself a fully assembled health Molotov cocktail.
Studies and Stats
Amgen’s own Press Release states that “Treatment with Prolia resulted in greater bone density, stronger bones, and reduced risk for vertebral, hip and non-vertebral fractures measured at three years.”4 It backs up this statement with a study by Cummings et al. published by the New England Journal of Medicine in 2009, titled “Denosumab for Prevention of Fractures in Postmenopausal Women with Osteoporosis”.
And the same Press Release boasts their pivotal three year Fracture REduction Evaluation of Denosumab in Osteoporosis every six Months or “FREEDOM” study (no, this is not a bad joke) with these results:
– 4.8 percent absolute risk reduction of vertebral fractures - 0.3 percent absolute risk reduction of hip fractures - 1.5 percent absolute risk reduction of non-vertebral fractures - 8.8 percent bone density increase at the lumbar spine, 6.4 percent at the total hip, and 5.2 percent at the femoral neck.
So far, so good, especially for those who don’t mind being “guinea pigs” in exchange for short-term rewards. Because the biggest cause for concern with Prolia is its potential side-effects.
A Wolf in Sheep’s Clothing
Even though Prolia doesn’t accumulate in the body and has no known esophageal side effects as is the case with bisphosphonates, it boasts a rather long list of undesirable – and sometimes dangerous – potential side effects. In its shadow, bisphosphonates almost seem to be the lesser of both evils, and that’s no small feat. You’ll soon know why.
The most common side effects of Prolia are back pain, arm and leg aches, elevated cholesterol, general musculoskeletal pain, bladder infection, and pancreatitis.5
And as disclosed on the Prolia website (https://www.prolia.com), it can cause serious side effects because it “is a medicine that may affect your immune system” (remember the cytokines?).
These are the main side effects listed by Amgen:
- Low calcium levels
- Serious skin, lower abdomen, bladder, or ear infections
- Dermatitis, rash, or eczema
- Inflammation of the inner lining of the heart (endocarditis) caused by an infection
- Severe jaw bone problems such as osteonecrosis of the jaw.
And for dessert, Amgen serves up a cautionary statement: that “it is not known if the use of Prolia over a long period of time may cause slow healing of broken bones or unusual fractures.”
So it looks as though…
The More Things Change, the More they Stay the Same
Like bisphosphonates, Prolia opens the door to a wide array of opportunistic health problems, many of which can (and trust me, will) get covered over with yet more drugs.
And let’s not forget that this drug interferes with the body’s natural immune system, which is the obvious reason for many of its most dreaded side-effects. In fact, roughly one year before its approval, FDA reviewers expressed concerns over Prolia’s activity against an important immune system modulator.6
But evidently, those concerns were shoved to the side and quickly forgotten. It seems as though the medical establishment considers drug side-effects – no matter how terrifying – an unfortunate “numbers game”. Applying its skewed logic, it accepts that there will always be some unlucky patients that will get stuck with irreversible damage, such as osteonecrosis or endocarditis – the latter potentially resulting in heart valve destruction or even a stroke.7 The unsuspecting victims are written off as inevitable casualties of war, losing their battle, but helping win the war against “disease”.
Don’t Get Fooled by Confusing Double-Speak
It almost seems as though well-meaning scientists focus so disproportionately on solving bone health issues using hi-tech tools, that they lose sight of the risk vs. reward ratio. That’s why together at Save Our Bones, we expose the truth and dispel misconceptions, especially as they relate to brand new drugs.
Let’s face it: two injections a year may sound like an appealing solution to finally conquer osteoporosis. But the bad news is the potential high price to pay. So I urge you to consider your acceptable options and weigh the consequences of your decision. Also, please share this review with anyone you think may benefit from it.
And ALWAYS remember the good news: the Save Our Bones community is here for you and your bone health, with proven natural bone health strategies that work with your body… not against it.
References
1 Commercial Biomedical Testing Module: Effects of Osteoprotegerin on Bone Maintenance in Microgravity (CBTM). https://www.nasa.gov/mission_pages/station/science/experiments/CBTM.html].
2 Lacey DL, Timms E, Tan HL, Kelley MJ, Dunstan CR, Burgess T, Elliott R, Colombero A, Elliott G, Scully S, Hsu H, Sullivan J, Hawkins N, Davy E, Capparelli C, Eli A, Qian YX, Kaufman S, Sarosi I, Shalhoub V, Senaldi G, Guo J, Delaney J, Boyle WJ . Osteoprotegerin ligand is a cytokine that regulates osteoclast differentiation and activation. Cell. 93:165–176. 1998.
3 Nakagawa N, Kinosaki M, Yamaguchi K, Shima N, Yasuda H, Yano K, Morinaga T, Higashio K. RANK is the essential signaling receptor for osteoclast differentiation factor in osteoclastogenesis. Biochemical and Biophysical Research Communications. 253:395–400. 1998.
4 https://wwwext.amgen.com/media/media_pr_detail.jsp?releaseID=1433162
5 https://www.centerwatch.com/drug-information/fda-approvals/drug-details.aspx?DrugID=1104
6 https://www.medpagetoday.com/ProductAlert/Prescriptions/15486
7 https://www.nlm.nih.gov/medlineplus/ency/article/001098.htm
I took Alendronate (generic for Fosamax) for 4 years and my bones went from osteopenia to osteroporsis in that time. I then got off the drug and on to Prolia shots. Have had 2 the past year and my results improved from osteporsis back to osteropenia. I have had no side effects. I’ve read all comments made and the best one is: All drugs have side effects. Some people get them and some don’t. If you had cancer, you wouldn’t reject treatments knowing the side effects beforehand. And as one of my doctor’s told me..try it. If it works, great, if it doesn’t then stop. Yes, I’m concerned about the drug. But some people are afraid of planes and some aren’t. It’s mostly the negative remarks that get written up…
no its not mostly negative reports iv taken it and the side effects are REAL!
Aren’t medicines suppose to make us better?
We are not supposed to sample everything the doctors hand us on the basis that it may work or it may not. This is not how the health of people should be handled. This is good for playing games of chance like Lotto or blackjack but definitely bad where it concerns our health!
Hi Dee, my endocrinologist has also prescribed Prolia for me. I’m concerned. I’m 52, have coeliac disease and t score -2.7 spine and -2.5 hip. Not sure what to do after reading about all these side effects. Due for my first injection in a couple of weeks, in the mean time I have been put on Thyroxine 50mg due to slightly underactive thyroid. Glad to hear you have seen improvements.
I am uncomfortable with the prospect of Prolia but I am being told that because I have hyperparathyroidism coupled with osteoporosis I must take the drug.
I am also told that my bone density score is 5% less each time I take the test which is yearly.
The problem with this assesment is I never know what my starting density was or a t score so without knowing what I am deducting from I don’t know my risk. I do know I have gone from osteopeni to osteoporis over the last couple of years and this last test showde incredible spine whiteness on the film attributed to arthritis. Finally in all of this I had one bone density reading of + 3.5 bone desity which no one talks about or seems to use in the bone loss calculations. Where Can I get more information on my situation.
David, please remember that bone density is just one aspect of bone health! Mainstream medicine focuses so much on density because it needs numbers (i.e. fixed parameters) to prescribe drugs, so most doctors follow the same protocol.
While density is an indicator of bone metabolism, the main focus of bone health is simply to prevent fractures, and as Vivian explains in the Program, less dense but healthy and renewed bones have better tensile strength than thicker, denser, older bones.
Best wishes moving forward, whatever you decide! And please continue to read and contribute. 🙂
Why don’t you get a second opinion without mentioning what the first doctor told you? Try it as you may get pleasantly surprised!
In 1987 was the first collapse of a vertebrae, #12 then diagnosed with osteoporosis. I’ve taken various drugs for this ailment but in 2012 in March #s 1 and 5 collapsed. I’ve never been without back pain since 1987 but in June 2012 had a vertebroplasty injection and since that date have been pain free. Had my first Prolia injection October 2012 in my stomach, no reactions and in April 2013 had my second Prolia injection felt a bit under the weather but don’t know if from Prolia. After reading all the above comments am due in October to have another injection and don’t know what to do. I also take D3 and calcium but would like to dispense with all pills but am 85 so perhaps I should just continue and hope for the best.
I had reactions to my first and second Prolia shots, including chronic pancreatitis but, within two hours of my third, I went into full anaphlaxis (sp) shock and had depleated calcium levels. It has been a progressive reaction. I’m on seven different medications, including steroids and a home nebulizer, to manage the side effects. The shot will be active until November 2013. I am now having severe abdominal pain that I’m thinking may be related as well.
I will never accept another dose and cannot wait until this one is out of my system.
WOW YOU SHOULD HAD SUED THEM!
HOPE YOU ARE DOING WELL NOW,
AND NO WAY WOULD I OR AM I GOING TO HAVE
ANOTHER INJECION WE ARE GINI PIGS AND YES IM VERY ANGRY ABOUT THE DRUG AS IM SURE MOST OF YOU CAN TELL!
Try Vivian’s method to clear the effects of the injection. You do not have to suffer until it wears out.
Konnie, your reactions make me really worry about whether I should go on Prolia or not. I sincerely hope you’re better. Take care.
Whatever you decide to do do not stop taking D3 and in large doses.
I wish you to be a hundred and pain free.
You are in point of fact a good webmaster. The web site loading speed is amazing. It sort of feels that you are doing any unique trick. Furthermore, The contents are masterwork. you’ve performed a fantastic process on this subject!
IT SHOULD BE TAKEN OFF THE MARKET!!!!
What are we suppose to do if all the drugs your doctor reccomends have all these terrible side effects, and there don’t seem to be any other sort of treatment. I guess we have to just accept the disease and learn to live with it. Calcium does not help either. I have been taking AlgaeCal for 6-7 months and my new dexa is worst than the last.
Have you been tested for Celiac? Once I went on a gluten free diet, my bone density increased by 10% in just the first year. It’s a simple blood test. It’s best to get to the root cause of your osteo before taking any medication.
Hi Jan, I’m also coeliac and interested in knowing if you have osteoporosis and if so, which medications are you taking? Even after diagnosis about 5 yrs ago and changing my diet my bone density has worsened. Thank you.
hi jan and Lone!
im also suffering from osteoporosis, so what should i do now??
About chronic diseases, could you imagine if people got off the bad vegetable fats, and the
bad carbs, plus processed foods, you may have a population that may be almost disease free.
Look at the start of the twentieth century, There was pockets of communities that were still
isolated from the modern world. These people grew their own crops and slaughtered their own
meat. They were disease free, till roads and shipping were linked to them. Shops were soon
set up. They sold things like white flour, sugar, jams and condensed milk. The rest is
history, we have generations brought up believing in the “lipid Hypothesis”, saturated fat
causes cholesterol. Cholesterol causes heaart disease. That is crap. Saturated fat is
essential for metabolism, growth and fighting disease
I take Prolia ( newly prescribed for me ~> osteoporosis ) . I am 67. … I now have concerns . I have dramatic prickly pains in my right upper arm , my jaw hurts at night then recovers in the day , knees hurt , left shoulder very sore when I try to sleep …. and generally I feel grumpy . I get really tired and fall asleep in the afternoon (maybe because I sleep so badly at night due to neck and shoulder pain … ) … my eyes look creepy . I used to have nice big brown eyes now they are slits … I can`t lift heavy stuff … I have a feeling there is a better way to deal with this stupid ailment (thin bones ) . I have an identical twin sister who does not even have my ailment ~~ this is unfair ! and I shall be reporting to the folks who devised twindom …. hmmmmmf ! I would like to punch someone but I do not wish to hurt my fragile fist .. (weak joke , half true ) …
Jude, you are right – there is a better way to deal with osteoporosis, and you’ve found it! 🙂 I hope you will check out the Osteoporosis Reversal Program. I do hope you recover your health and bone strength fully.
Vivian,
I have recently been diagnosed with Osteoporosis, and was given a script for Alendronate. I took 3 doses, during which time I began experiencing gastrointestinal problems, and general aches and pains. I stopped it and began researching my options. What I found was alarming. Like others who have posted, I am not interested in benefiting big-pharm at my expense. They seem to be concerned about profit, not the health of people. I am interested in learning more about the Save Our Bones program, however I’m skeptical. I do not intend to be disrespectful in any way, nor do I think that you shouldn’t be compensated for the research and hard work you put into this program, but like big-pharm you appear to be making a profit from this. I understand that we all have to make a living, but how do I know that this isn’t just a gimmick? I am serious about finding an acceptable treatment, and I don’t want to waste time and money if this is not going to benefit me. Again, no disrespect intended. I am skeptical by nature. I thought this program sounded interesting until I saw that I have to pay for the book to benefit from this treatment. Any comments, opinions, suggestions would be helpful. Thanks.
On the year(2011) I received the injection of Reclast because the doctor said I had osteoporosis. I did well, no side affects. This past year (2012), my doctor said I had osteopenia, and asked me to take Prolia that was even better than Reclast. So I agreed. In late August I received the shot in the arm. A few weeks after, I noticed my muscle where I received the shot was so sore it was hard to put the car in park lifting that arm. I thought it would eventually go away, maybe it was something I did that caused the soreness, maybe a wrong move. But the arm got gradually worse and had to go to the ER a saturday moring in early Nov. The doctor there gave me a shot and pills for inflammation and some pain pills. It did get better for a couple of weeks, but then the pain came back worse. I had never had trouble with this arm before, but it got where I could not sleep the pain was forever keeping me awake even with the pain pills. Then one day I had a terrible jaw pain right on the bone, which I never had jaw problems before, and all my toes on both feet and both of my hands went numb, it scared me. I know now it’s from that Prolia shot. All the numbness on both of my feet and left hand have passed and the jaw pain, but I’m still plagued with numbness on my right hand and my arm. I called Prolia and told them about my side affects and they told me to talk with my doctor. I have an appointment on Monday and hope he can help me with the pain and numbness, and hope that will wear off. I’ll be due for another shot in March, but I will not have any more shots for my bones. I eat a yogurt everyday and take Osteobyflex for the joints that helps me.
I do have the save our bones program. But I need help as how to proceed daily to help me. It is difficult to process ALL THIS INFORMATION WITHOUT
assistance. Can Vivian help me ?
I have had Osteopenia for nine years. I was on Fosamax for the first five years with no improvement or worsening but went off it when hearing after five years it can have a reverse affect and cause the bones to be more vulnerable to fractures. I have had two fractures, ankle and wrist. A bone density test in April, 2012, indicated decreased bone density. In July, 2012, I was placed on Letrozole which is a hormone receptor, due to being diagnosed with breast cancer. My oncologist suggested I use Prolia to counteract the side affects of Letrozole, which can cause bone thinning. A few weeks after the first injection my jaw began to hurt and it was difficult to chew food, and drink or eat hot or cold foods. I have always had excellent teeth, the problem wasn’t with them. For the most part that discomfort has gone away, but I don’t want to test it anymore and possibly make it worse. I plan not to have any more prolia injections. I am concentrating on a natural approach to increasing bone density.
My doctor did a bone density test on me and said if it didn’t come back good, she was going to suggest I go on Prolia. Well my density came back fine so now I have the choice to stay on the generic Fosomax or take the injections twice a year. thank you for all your comments. I’m in a position to say “if it ain’t broke, don’t fix it”. I’ll just stay with the pills. I’m just getting over a broken foot but it did heal nicely. I’ve read too many negative comments about Prolia. Thanks for all the comments.
KCR, you may not have realized it, but regardless of the results of the density test, you always had (and still have) the choice to stay on Fosamax, get the Prolia injections, or go off of drugs entirely. 🙂 It’s your health and your decision!
Just wanted to bring to someboy’s attention, Some of the side effects I have had with the prolia!!!! On going rash for 10 wks now being treated with prednisone. 1st shot 4 wks later had phnuemonia, 2nd shot the rash horrible!!! I’m refusing to have anymore, & they say well its a drug reaction but we are not sure if its the prolia. Well i have decided I’m not going to be a statistic you file away somewhere. I do take vit d & calcium every day along with a good multi vitamin & omga 3’s hopefully that will help my imnume system. If anyone else has any info on this I would greatly appreciate it.
Marilyn – and everyone else who has written in about side effects from Prolia – I am so very sorry you’ve had to undergo so much discomfort! But I am so glad you’ve come to the right place. 🙂 Please feel free to gather as much information as you like on this website. I wish you health and strong bones!
I am 58 had my 1st shot of Prolia in March 2012. A couple of days later I had back pain for a few days. Nothing else, dr. said it wasn’t from the prolia. 2nd shot October I’ve been noticing for about the past month I have bone, leg and hip pain. It’s not tragic just uncomfortable. I’m unsure if its a side effect but after reading some of these posts I’m thinking it is possible. Does anyone know if side effects can occur a couple of months later?
thank you for this information. I was on the verge of using Prolia until now. I now have serious second thoughts.
Hi Viv: so can a person that refuses to take prolia get their bones in
greater shape without drugs. (I had taken reclast and other drugs without any improvementfor the past 5 years. I had a doc try to scare me into talking this to prevent broken bones. “What ever you do don’t fall” was his most frequent comment. I did hard yard labor all summer and feel like I am in good shape and stand on my feet 8-10 hours a day on my job and feel strong and I don’t have any wobbles…:-)
I too have osteoporosis now after early menopause and some years of osteopenia. I tried Fosamax with severe reflux problems so stopped that and also refused HRT because of cardiac warnings. I have now been offered Prolia but after reading most of the above comments have decided not to have it. Meanwhile from my research after becoming Electrosensitive about 3 years ago apparently low dose electromagnetic radiation is capable of draining your bones of calcium and adversely affecting your immune system and the body’s well-being in general so as I have relatively high output from street power lines outside my bedroom window for the past 30 years I am building a new bedroom at the back where I hope my bone problems will improve. If I can find this site again after I move to the new room I’ll let you know how I go but I am sure we should all be looking at our exposure to both electromagnetic radiation and radio waves and trying to reduce that before we start taking tablets or injections to keep our bodies healthy.
This stuff is lethal..i know i have had it..i did not recommend it all….i regret that i ever had the 2 injections that i have had..the side effects ate horrendous…pain swollen ankles that big i have to wear eee fitting shoes!!!!! never in my life have I had big ankles before like this…..I was in a wheelchair as it gave me inflammation in my thigh muscle, so bad I could hardly move…so please do not say that i recommend it…..
I DON’T
I have had the injection of Prolia twice now…the doctors assured me that I needed it badly as I have osteoporosis..and I was only 60yrs old! so sorry i did…..I was in a wheelchair for months as I had an inflammation in the top of my leg…in so much pain…nor i have had swollen feet for 9 months and only just found a pair of shoes to fit me in a “EEE’ fitting…I had really thin ankles before!!!! and Its made my IBS so much worst…I have to take 6 immodium tablets to stop going!!!!!!!!
I am currently on Evista for two years for osteoporosis since I was afraid to take the other drugs and my bone density showed I was getting a little worse. The doctor now wants me to take this injection of Prolia – I have numerous things wrong with me and yes, I am a smoker which is a big no-no and I also have anxiety and depression issues. I stopped taking my calcium due to reading how too much can build up in the arteries and I have a very physical job so I was not exercising. My theory is that I need to cut back the smoking since I know I can’t stop “cold turkey”, exercise and start the calcium up again – I have faithfully been taking Vitamin D3 and my levels went up. I now find myself stressing over this Prolia – I do not want to take it due to side affects that can affect my jaw and I have TMJ already along with sjogren’s syndrome, IBS and arthritis in different parts of the body. I don’t have the exact T scores – waiting to hear back from the doctor if my insurance will cover the shot – but I would love to hear from other people – am I my own worse enemy with my smoking, not exercising and stopping the calcium – Evista has not given me any side affects and my gyno said it was the best one to take since the others have serious side affects.
Eileen, what other people do you want to hear from? Aren’t the people in this forum enough? The least of your worries are whether your insurance will cover the cost.
I have a multitude of health problems including panhypopit from a brain tumor. Was just diagonosed with Diabetes also. After trying all of the above menioned drugs plus calcitonin, i suffered a hip fracture while on Boniva infusions last year. My endocrinologist ordered Prolia. I get my 3rd shot today and have had no side effects with the other two. All of my previous bone density tests kept going down so I was willing to try something else. I will repost after I have the next bone density in June. So far thought I am very happy not to have any side effects and not have the gastro problems I had with the oral meds.
You should be very happy as you are one of the 2-3% of users that have no problems. However, I would wait a little longer before the final verdict.
I hope you remain trouble free.
During the last six years I have broken six bones. I was on Actonel for five years to treat osteoporosis in both hip and spine. The osteoporosis got worse during the time I was on Actonel…..some of my broken bones occurred during this time. Then I was switched to Forteo. You can only stay on Forteo for two years but for me it did wonders because after two years I was in osteopenia in both the hip and spine. Three months ago I had my first shot of Prolia and have had no side affects. I’ve had type 1 diabetes for 42 years, have thyroid and heart issues. The thyroid and heart conditions tie into the diabetes as does the osteoporosis. I do what I have to do to stay healthy…so far so good.
I had adverse side effects including bone and joint pain, headaches, digestive problems, itching, weakness, and other problems. I went to another medical professional for help and was given steroids to help with itching. Nothing else could be done. During a follow-up visit, I was told that the Prolia drug rep came and was promoting Prolia. When told about two patients will serious side effects, the drug rep said she was unaware there were any side/adverse effects. When asked if she was aware the shot was a long lasting shot and the side/adverse effects could last 6 months or longer, she was not aware of that.
Who paid for the studies of Prolia? Did the studies rate severity of back pain and other reactions in both groups? Who educates the doctors on Prolia safety and side/adverse effects?
My comments….if you have no side effects, you are very lucky. People going on radiation and chemo are told and treated for side effects. The specialist and hospital involved in my injection knew of 4 conditions I have that were red flags. Both denied anyone ever had a reaction to the injection. The pain and suffering and loss of health is not worth it for me. Any drug that causes this much for this long a period of time should be reconsidered by the FDA. By the way, the other doctor to whom I went told me to report my experience to the FDA.
The answer to your question as to who educates the doctors on the drugs they subscribe is the drug rep ofcoarse who are not medically trained and have a vested interest in the sale of the products. Besides, all the information required is printed on the paper enclosed in the box and composed by a most impartial and independent source, the manufacturer of the drug!
I have been on prolia for almost 3 and1/2 months and it has not be pleasing. I have suffered many of the side effects
I am due for another shot the end of December, but at this juncture I do not think so. I would never believe what could
Happen while on this drug unless you experienced same. Not a big fan at this time.
Nancy Cleary
Am curious to know how many doctors (esp. female) are on prolia or have prescribed it for a family member.
A very good question.
I have Sjogren’s Syndrome as well as GERD. I have already used all the other med for my Osteoporsis My bone scan this year was not good at all. Dr. recommends that I have the Prolia shot. I’m very leary because of having the Sjogren’s Syndrome which already give me many problems that they list as a serious side effect to having the Prolia shot. So..what else can I do to keep from breaking by back, bones?
Certainly not to take prolia. But do not take my word, just read all the entries here and decide for yourself.
Hi,
My Dr. put me on Fosamax about 5 weeks ago. After taking the first “once a week” pill one Sat morning, I woke at 3 am in the worse pain ever. It felt like someone had beat me with a baseball bat in my ribs. Just breathing was difficult. I had to stay in bed for 3 days as the pain progressed to my neck and other areas. The neck pain is still here and hopefully it will go away. I had to actully support my head just to move or lay down. Today he suggested Prolia. I told him after Fosamax I was unbsure if I wanted any meds. He said the scan showed I have Osteopenia? and since two years ago it is a little worse.
I am on HRT for 4 years now, and would hope that would help I have had a gatric bypass years ago and know things are not absorbed well.
I am glad I have read people’s experience about Prolia before taking it. I evidently had what they called a “rare” side effect. After seeing many who had the same, I am not sure it is so rare!
It’s perfect time to make a few plans for the long run and it’s time to be happy. I’ve read this put up and if I could I want to suggest you some fascinating things or tips. Perhaps you can write subsequent articles relating to this article. I desire to learn even more issues about it!
Prolia was recommended by my rheumatologist. Upon calling my cardioloist with a request for his input, his assistant called me to advise that he had set aside a special time to see me to discuss this med (I have two leaky heart valves.) I am seeing him on Thursday.
I found your site by Googling “Prolia and heart issues.” Thank you for the information presented on your site!
Please tell me what can occur if one discontinues getting Prolia injections once they have had one, two or more. As a former Fosamax user (5 plus years), problems with bones are femur and hips. Some spine also. Thank you.
i have osteopenia of both hips and osteoporosis of L2 and L 4 i have been prescribed protlia by my Dr having read all of the side effects I am scared to take it I am post menopausal. I have had a bone density scan and a consult with professor osteoporosis society.
I am healthy take good diet and exercise regularly like daily
I have been following an alkalizing, bone healthy diet for about 3 years (still) during which time I was also on Estrogel (and Prometrium). My bone density increased (from about -3.7 to -3.5 then to -3.2). I was also (still) on mineral supplements, high dose vit D, vit K, Biosil and ipriflavones. My doctor reduced me to bioidentical BiEst (50% estradiol, unlike the 100% estradiol in Estrogel)and bioidentical transdermal progesteron, and in one year, I lost everything I had gained with respect to bone density (back to -3.7). Nothing changed other than my HRT Rx. If anything, my exercise has increased (I am recovering from CFS). Are there some people for whom a bone healthy diet and supplements just don’t work? i.e. 100% estradiol is needed? I don’t want to take Prolia which is now being suggested.I had tried biophosphonates in the past which improved my bone density but caused a very bad GI reaction; so I quit them.
My understanding is that estradiol (I take 1.5 mg daily in divided doses) preserves what is left of my bones – my last T-score was a -3.8 – and that if I discontinue taking estradiol I will lose the bone mass that was saved. I have been taking estradiol for 20+ years and do not ever plan to discontinue it.
I am not sure what would occur if you start taking your estrogen supplement again. I would suggest talking to a trusted gynecologist regarding your bone loss and the resumption of your supplement to determine what, if any, effect the resumption of your supplement would achieve.
Good luck to you, Mary Lynn
I started taking foxomax, switched to forteo and now on Proleia. Forteo made my bones ache to the point I stoped taking it So far after three years I have no problem with Proleia. ‘what do yo suggest is the best source of prevention to take. Thaks.
My naturapath advised me to take a supplement called Bone Basics plus 2,000
iu vitamin d3 per drop daily and walk for 1/2 hour everyday and this would be sufficient in maintaining bone health. However, I have read so many /conflicting advice re supplements – calcium, vitamin d dosage etc that I am confused. What do you know about the Bone Basic supplement?
I am a 57 year old woman with osteroporosis and have had a crush fracture in my spine and a stress fracture in my foot. The doctor suggested I go on Prolia and after reading Vivian’s comments I was afraid to have the injection. After several weeks I decided to have it and time has passed with my 3rd one due in September. I have had no side effects. One has to realise that all medications can have side effects, even panadol. If you had cancer would you reject chemotherapy or radiation because of the side effects? I wouldn’t!
I totally agree!!
Vivian you are a disgrace. You are worse that big pharma, a fearmungerer who scares women off proper treatment for their osteoporosis. I hope you are happy when women will suffer a hip fracture and die because you scared them off treatment and their BMD goes bad. I want to see your clinical trials and what you have to offer?? Useless books and herbal remedies.
sad!!!
Julia, I would say that all the entries here by the people who had first hand experience is all that Vivian needs to prove her point against anyone. These accounts are one hundred times more accurate and more reliable than any clinical trials that are very often made to order.
I believe it is obvious that there is no profit or gain on warning people off a drug.
I HAD MY FIRST INJECTION OF PROLIA ON THE 11MAY 2012 I HAVE HAD URINARY INFECTIONS SINCE I HATE IT AND AM SO UNCOMFORTABLE AND IN PAIN AND DONT KNOW WHAT TO DO
Beth, If you had read this forum before you had the injection and you have decided to go ahead anyway, you understand that you made a very serious mistake. You should have had less faith to your doctor and more faith to the actual people here who were merely trying to help you through their own experiences. Now, it is too late to ask them for help. But I wish you well anyway.
I suffered a femur fracture two months ago and a stress fracture was discovered in my other leg… now my regular doctor wants me to start Prolia… she is almost too eager to put me on this medication…. I don’t want to take it and would appreciate any help … I need a long term plan but am so leery of any more medication of this type
Ask your doctor to put you on Forteo. It’s the only drug there for osteoporosis that will build your bone back. I’m glad that you are knowing the facts about Prolia.
I am so glad I have found this website. I am scheduled to have my first Prolia injection on Monday. Not anymore! I have had serious side effects from Foxamax and from any cholesterol medications I have taken. I have been so afraid to go in and take this new one. I have had so much joint and muscle pain after just three weeks on Fosamax and I just knew this new one would be just as bad. I just feel bad for all the people taking it that are having such bad reactions to it. Thank you to all the people who have left comments telling how they have done after taking Prolia.
I recently had my first injection of prolia after experiencing terrible side effects from atelvia. my dr advised prolia does not get absorbed through the gastro tract, so i would not experience those symptoms. she said there were not symptoms to worry about (i found that hard to believe). it has been almost a month since my injection and i have been feeling, swollen, tired, increased heartburn, and most recently have been experiencing frequent “watery, mucous bowel movement in small amounts, accompanied by abdominal pain and upsetness (excuse the description). I am so nervous and upset that I agreed to receive the prolia, against my gut feeling. I do not know what to do, where to turn. I do have osteoporosis in my hips and severe “pre”osteoporosis in my entire spine. any suggestions?
Margared, sure you know what to do. Just call the other two coming shots OFF and clean your body of the first shot effects immediately. I believe that Vivian can tell you how.
I had a mastectomy because of cancer found in my breast and they said got it all. Then my doctor made an appointment for me to see an oncologist so I thought I should go. He told me I should take the drug anastrozole (generic for arimidex) for 5 years to prevent cancer from coming back and wrote me a prescription for it. Then a nurse came in and said she was giving me a shot for the side effects of the drug and I would need it twice a year to keep my bones from weakening. They sprung this on me unexpectedly before I could think to ask questions. Later I found out that the shot was denosumab. After reading about the side effects of denosumab and anastrozole, I decided not to not take any more of the pills after taking them for one month. But I already got the shot (January 2012) so can’t change that but I won’t get any more. So I hope the one shot won’t be harmful but I did get a UTI recently and had to get an antibiotic for it.
They got it all, yeah!! This is why 96% of cancer patients die.This will surely frighten you. But I have something to sweeten it: Protocel. It puts 80% of all cancers out of business. Look for it in the internet, if you have a recurrence. No more info is necessary. Stay away from further mainstream treatments. If you could not be cured the first time, the horse is already out of the barn. You could had avoided the mastectomy, if taken in the beginning. Lack of knowledge brings tragic consequences. Cancer has been cured in the States since the 30’s and even before with alternative treatments
My best to you.
Jose L. Suescun
fi******@*****il.com
Hi Vivian,
I want to thank you for alerting me about taking calcium. Ive been taking calcium capsules for years because my doctors told me it was necessary for osteoporosis. I appreciate your advice and just cancelled my order for them. The only drugs I’m taking now is 5mg of amlodipine and 12.5mg of hydrochlorothyazide for my blood pressure which is necessary. I’m taking the good supplements like B-Complex, Nattokinase,Resveratrol and Osteo-bi-Flex.
Thanks again,
Gloria
Hi, Gloria!
There a lot of natural treatments for Hypertension without side effects. I have it and took mainstream pharmaceuticals and controlled it, but with terrible consequences. I decided to stop them and my numbers went right up again. One day I started taking flaxseed oil and my BP went down to 120 and less over about 70. A large part on the American population is deficient in essential fatty acids.
I am about to start with PROLIA injections which my doctor highly recommends. I have a serious osteoporsis in the hip in particular. I am so confused but at this point am planning to try the injections. In 2 years (during which time I only took Calium/Magnesium vitamins – had stopped Fosamax which I had taken for 5 years) my hip area went from minus 2.5 to minus 7.7. Naturally, I am very concerned.
Dottie, I hope you took a second opinion before trying prolia. There are enough warnings here from people who took it to make you think twice about it.
In my opinion, you have enough problems without wanting to add more, like a broken bone may be?
I have been using Prolia for approx 2 years now and I have had no problems at all. My bone strength has considerably increased and I am so happy with this medication. Obviously as with any drug, certain people may not benefit as much as others. I only recommend caution, not fear. Good luck and better health!
I have been recently diagnosed with osteoporosis of both hips and osteeopenia of the lumbar spine. I am “rather old”. I will follow Vivian’s Rx and probably complement it (if necessary) with “Ultimate Bone Support” from advanced Bionutritionals. It contains Srontium, Hopps exract, L-Lysine. Vit.D3, Vit.K2. Boron, Silicon, Manganese, Copper and Zinc.
Dear Vivian,
I wrote you about my osteoporosis & arteriitis temporalis but I cannot remember WHERE I placed my questions.
Could you please help me to find my letter and eventually your point of view?
Many thanks!
Ivana
I will soon begin taking prolia. I have severe osteoporosis and fosamax from 1999 to fall of 2011 did little if anything to help with my very bad osteoporosis. In addition to being a white post menopausal female, my mother had sever osteoporosis (also took fosamax for years)and broke bones in her back just walking. I am of course very worried about potential side effects. I am interested in learning how others have done while on this medication. Any side effects? If so, what? Comments would be appreciated.
Judy there is plenty of sound advice here if you have time to read all the posts but the best answer is the one you have provided yourself. You say, your mother broke bones in her back while she was on fosamax for years. Fosamax is a top osteoporosis drug. What does it tell you? It tells me that the drug should be withdrawn and the company fined for product misrepresentation. From the accounts here Prolia appears to be even worse. I am begining to believe the doctors who claim that all osteoporosis drugs are inadequate.
I’m due for my third denosaumab injection on Friday I don’t want to go through with it having read the side effects on this drug and suffering two collapse with in ten days of having this ,and I’ve not had a bone scan for 2 yrs I’m not sure if it’s done the job it’s meant to do , I’m so confused please help ,
June,
Read my post above.
Im due for my 3rd denosumbab injection on Friday .having had it twice and been unwell after it I’m really worried about it. Also I’ve not had a dexta scan for 2 yrs ,how doi know if this drug is causing me more harm than good . I’m really stressed about it,
Thank you.
I am 81 years of age. I was on estrogen/progesten for years and then went off because of the side effect of cancer. I went to fosamax for ten years. I had a Dr. tell me to go off fosamax or actenol because of the jaw disease. She gave me a prescription for high dosages of Vitamin D and calcium. I developed a parathryoid gland problem…I had surgery. Now another Dr. put me back on Fosamax because of the loss of calcium from the gland problem. I am fearful of taking the drug. I have been on it this time for one month. My friends where I live tell me to stay away from all of these alendronate drugs. No side effects as yet; however, I don’t think I have been helped from these drugs in the past. Any advice please.
Thanks
The answer is in your last line.
Since none of the previous medications increassed my bone density my doctor put me on Prolia and I already had 3 injections .. I am due for the
4th the end of March and after six months I suppose to have a bone density
test to see if any improvement happened.. I don’t experience any unusual
back of arm pains beside the arthritis I have inherited from my mother
and that happens only when the seasons change…Of course I am nervous about the new Prolia medication.. I have bought the “save our bones ” book and read
it.. due to chronic IBS can’t follow exactly the diet but I try to eat
the veggies and fruits which don’t aggrevate the situation.. big dilemma I have
can’t go back to Fosamax and the likes since they didn’t help , can’t follow 100% the healthy diet due to IBS .. what would you do in my situation?? Another thing, since I stopped taking hormones after the big scare
in early 2000 I suffer from hot flashes and I am in my 70’s!!
Sincerely,
Steffie
If you can not follow Vivian’s diet properly, add Ultimate Bone Support from Advanced Bionutritionals. Find the company in the internet.
Vivian most of your repsonses ask people to buy your “bone health” program.
This site seems more like a sales pitch than a service to patients.
For someone who claims to be science based you sure do present a skewed version of the data, so as to reinforce your costly program.
You mention several side effects for Prolia but never once do you list the incidences of these side effect compared to the placebo arm in the trials.
For instance you list back pain as the number one side effect for Prolia, but you don’t mention that 1347 patient out of nearly 4000 patients experince that on Prolia, and 1340 patient in nearly 4000 patients on placebo (inactive drug) experienced back pain. Thats a difference of 7 patients in a 3 year trial of almost 8000 patients. Had you mentioned the incidences most people would agree that back pain would be the least of their concerns.
There is also a difference between what a side effect is and what an adverse event is, but I don’t expect you to know the differen becaue you are not a doctor you just play one on the internet…..to sell books.
Shame on you for manipulating innocent women lookng for some real help and guidance, all to make a buck.
There are pros and cons to all things.
Work with you doctor to figure out if the benefits out weigh the risks of any therapy.
If Vivian really cared she would not be pushing her program at every possible opportunity.
It appears that you have fallen victim to the usual trap that the pharma companies set for all of us.
Do you know that most of the trials on medications are done by the same companies that manufacture the drug or are assigned to “independant” firms who act according to the wishes of their employer? Why do they do that since it is known to many people? But to clowd the picture ofcoarse. A clowded picture is better than a negative one. And secondly to cast doubt in to the minds of the ones that know what goes on behind the scenes.
Are you affiliated with Prolia in ANY way?
are you male or female and are you a doctor?