Having read countless credible, detailed, nightmare stories from people having even one shot of Prolia, and terrible experiences with the other drugs, I know I will simply take the risk of going without.
To me it seems like a game of Russian roulette to risk getting horrendous side effects that might be long-lasting and then to have to be on Prolia life-long if it worked.
Also, the longer you are on Prolia and the others, the greater the chance of ONJ. ) Its not as rare as Amgen states- no one is collecting data on the cases, so who knows? Only oral surgeons and dentists really know and their scientific journals are full of articles about how devastating and difficult it is to treat ONJ .
The FDA makes it very difficult for doctors to report adverse events, such as ONJ with so much paperwork required . Many doctors are way to busy to be bogged down with filling out such time consuming forms.
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When I told my endocrinologist about the minor side effects I experienced after my 1st zoledronic acid infusion, he basically said so what. And because my endo couldn’t answer my questions about the drug, I called the manufacturer and while talking to a rep, I told her about my minor side effects and the company does keep a record of them if they are informed of the side effects.
Hi bonygirl, I attended a webinar in June presented by a maxillofacial surgeon who treats patients with ONJ. He shared the 2022 recommendations from the American Association of Oral and Maxillofacial Surgeons. His overall message was that your chances of having a debilitating fracture are much greater than your chances of getting ONJ, so the benefits of taking antiresorptive medicines (if you need them) outweigh the risks.
He also pointed to studies that found the majority of ONJ cases among people taking these medicines were cancer patients who were on higher and more frequent doses. (0.06% osteoporosis, 1.47% cancer)
Mark, I was searching for information on if taking biosphosphonates interferes with building bone naturally. I have seen a few posts on this site that suggest that not only do bisphosphones interfere with osteoclasts but that they also interrupt osteoblasts--I very much hope that is not the case, especially given that my endocrinologist didn't mention it prior to prescribing alendronate and then a zoledronic acid infusion.
While searching, I found this article lmreview.com/building-bone-... as the title suggests it is somewhat anti-bisphosphonates. The article states, "Increased risk of ONJ has been seen more frequently in the nitrogen-containing drugs, most likely due to their differing mechanisms of action. The non-nitrogen containing bisphosphonates are metabolized by osteoclasts intracellularly into inactive non-hydrolyzable ATP analogues, which are directly cytotoxic and induce apoptosis. The nitrogen-containing versions inhibit critical enzymes in the mevalonate pathway, thus suppressing prenylation of small GTPases essential for many cellular functions."
They author also included table listing FDA approved bisphosphonates and whether or not they contain nitrogen. According to the article, Zoledronic Acid does include nitrogen but Etidronate (brand name Didronel®) does not.
Are you aware of nitrogen containing bisphosphonates potentially being more likely to cause ONJ? I get that ONJ is rare but if I have the option to take a medicine that is less likely to cause ONJ, I definitely would prefer to.
You are spot one. I have done so many hours of research on these drugs and the natural route. Our bodies fight anything you put into your body that is not of natural substance. Too many people have had terrible results from all these prescriptions. Doctors do not have the time to stay up with research on these meds and are quick to prescribe. I switched to Ancestral living bone about 2 years ago and has stopped my hip pain. So many people taking this have said this helps their osteoporosis and I have another bone scan due in a few months. Microcrystalline hydroxyapatite (living bone) is from New Zealand & Australian grass fed bovine and that it the difference. It's not from rocks. I will be posting results in April after my next bone scan. So many people take their calcium and magnesium together and that is a mistake. They fight for absorbancy and money is just being thrown away doing it this way. I will never take meds for my condition. I have recently found through my research that HMB will help your bones. and muscle, especially in seniors. It's all natural for your body and I must say it's working for me by how I feel. I take daily: first thing in the morning I take 1000 mg of the HMB, then during the day and evening I taken boron 3mg, Ancestral living bone 750 mg,K2 w/100 mcg MK-7, w/16mcg Nattokinase form vitacost vitamins. 3000 IU of d3 and I split those up to 1000 3 times a day, magnesium citrate 210mg twice daily and 2 hours before or after I take my living bone. Seniors should get a mini trampoline and do rebounding and it does not need to be extreme, just gently jumping up and down increased bone strength. Standing in place and stomping is excellent for bones, walking is great for bones.
I hope you can stay to that in that you will never take any of these meds. I hope your condition improves. In my case, I opted for them as I already am young, active and healthy with healthy life style and don't see much more I can add to improve my bones from becoming more and more frail.
Did your doctor test for ”secondary” causes for osteoporosis? Under my bio, there are several links, one is to a list of tests posted on BetterBones.com for tests that should be done before starting osteo-meds to make sure the correct issue is being treated.
Yes, doctor did full panel. D levels normal, no calcium loss in urine etc. It comes as no surprise to have condition when I menopaused at 38 years old. Checked thyroid all secondary possibilities to treat to prevent further loss. There was nothing for me. Otherwise healthy. Since the loss progressed as rapidly as it did since discovery, I opted for meds. I was horrified initially but in time realized to do nothing is worse. I am only 55 so this is not an elderly issue. For most women with early onset menopause this is of an issue which is why I was checked with a dexa at such an early age. I would have jumped for joy had there been an underlying issue to treat. But I think that any good doctor would surely check for cause to treat before prescribing any treatments.
Agree that any good doctor would surely check for cause to treat before prescribing any treatments, unfortunately there are too many not so good doctors.
I too went through early menopause at age 32. I’m 54 now. My 1st DEXA was at age 50–doctors should have sent me for a DEXA decades earlier.
I was diagnosed with hypothyroidism (hashimoto’s) in 2017 and, after a little tweaking, have been taking 75 mcg of levothyroxine daily. When my July 2019 DEXA showed osteoporosis, lumbar spine r-score was -3.9, my endocrinologist did no further testing and rushed me on to bisphosphonates. Like I said, there are too many not so great doctors.
I’ve had slight gains in BMD but my gains from 1 dose of zoledronic acid in November 2021 were not very impressive and not statistically significant. Given it’s such a serious medication, I was definitely hoping for more. Additionally, once I started questioning my endocrinologist and doing my own research, I question his reasoning/advice and have decided not to have a 2nd zoledronic acid infusion—he ordered one for me in November 2022 but I cancelled it. I’m not saying I will never take osteoporosis meds again, but the reasons for prescribing the meds has to be backed up by proper testing, which my endocrinologist did not do.
I called the drug manufacturer to ask questions about zoledronic acid that my endocrinologist was not able to answer. They recommended that my endocrinologist schedule a peer to peer call and then he could explain the info to me. When I mentioned this to my endocrinologist he point blank said, “I don’t have time for that.” He has time to prescribe meds he doesn’t fully understand and is unwilling to get answers.
One yr after my zoledronic acid infusion, at my request, I had bone turnover marker labs. Did you have these done and did they show that you had high turnover markers and were losing lots of bone?
I have learned that usually there is rapid loss of bone in the yrs around menopabuse so say 5 yrs before to 5 yrs after, women tend to loss more bone and then it somewhat levels out. If this is the case and my bone turnover markers are w/i the normal range, since bisphosphonates work to slow bone resorption, it doesn’t seem like that would be the right med for me.
hi there, you know I have severe osteoporosis but I, like you, have decided not to take any of those medicines. I am careful not to fall and if I will sustain a compress fracture of the spine, I will deal with it the best way possible. Anything could happen in the mean time, I could come down with a terrible disease, I could die in a car accident, just name it. How severe is your osteoporosis and how old are you? I just turned 71 and try to be active and exercises whenever I can. I would like to hear if you take any supplements and what you do about it. Thank you.
Stellina14, I’m not exactly sure who you were directing your comment to but I received a reply notice for another reply today and saw your post from 3 months ago.
I was diagnosed w/ osteoporosis in 2019 at age 50 and my lumbar T-score was -3.9. I took osteo-meds (alendronate for 1.5 years and had 1 zoledronic acid infusion in November 2021) because my endocrinologist told me my bones were “horrible” and he didn’t really have any other advice other than taking meds.
After following my doctors advice and having the infusion, in Dec 2021/January 2022 I started doing my own research and learned that my endocrinologist was not as up to speed on treating osteoporosis as a doctor should be.
I have NCGS (non Celiac gluten sensitivity) so my diet is gluten-free. Additionally, I try to avoid added sugars. My diet hlthy. I eat meat, dairy, veggies, fruit and nuts.
In the last year, I went from drinking 4-5 cups of half-caf coffee a day, to drinking no coffee, and now I’m back to drinking 1 cup of half-caf a day. I’ve also tried to up my intake of fish for the Omega 3s. Anywhere from 2-4 times a month I open a can of sardines and then eat a couple of sardines a day until they are gone.
Supplement-wise, I changed my calcium supplements. As my endocrinologist advised, I was taking 1200 mg of calcium supplements/day. When I did my own research, I found that 1200 mg is the RDA, meaning amnt needed/recommended in total for the day. I also learned the body can’t absorb more than 500 mg of calcium at one time so I switched to Citracal Petites, each pill contains 200 mg and I take 3 Citracal Petites (600 mg) per day and get the rest of my needed calcium from my diet. Also, the last thing I take before going to bed at night—research shows women who take calcium before bed have lower bone turnover markers in the morning.
I also added protein powder to my diet—protein is very important for bone and muscle health.
Additionally, I take Omega3 (Fish oil), 200 mg magnesium citrate, vitamin D3, and vitamin K2.
Lastly, I joined a gym in January 2022 and I go 3 times a week. I started slowly and gradually increase the weights. On days that I don’t go to the gym I make sure I get at least 1, 20 minute walk in.
You mentioned you are not taking osteoporosis meds. What are you doing to try to maintain/increase your BMD?
Hi, I read very carefully what you wrote and I do and take few of the things you do. I walk almost 1 hr. every day, I do pilate and some home exercises. I take calcium citrate powder three times a day, but not before bed. I read and also my doctor confirmed that, that taking calcium before bed( on empty stomach) is not good for the heart. I have no problem with my heart and I like to keep it that way. I even ask my cousin in Europe, he is a cardiologist and confirmed that as well. I do not take vitamin K because I had read some disturbing things and I prefer not to take chances. I do take D3 of course, magnesium and I eat very well and healthy, a lot of fish, eggs, meat, lots of fruit and vegetables every day, almonds, walnuts and dry prunes. This is what I do and what I can do. Unfortunately osteoporosis is a progressive disease, we have to accept that and live with it the best we can. Please feel free to write me back if you have any other questions. Take care
If you don’t want to take a calcium supplement before bed, you could drink a glass of milk. I would rather drink a glass of milk but if I did so right before bed, I would get up 5 times during the night
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