Uggggg!!!! So The ones of us that unfortunately started the injections over 15 yrs ago have to continue getting the drug along with our other side effects like our teeth falling out, bone ailments, etc? Drug manufacturers should be held more accountable
I've lost all of my molars on the right side top and bottom after 2.5 years and want to stop now but RECLAST is worse on your teeth and according to my dental surgeon stays in your system for a decade. Had bariatric surgery so no oral. I'm left with nothing....
Thanks, all! I go back to the endocrinologist next week to give my answer as to whether or not to begin Prolia. Great timing for me seeing this message. Ain’t a gonna do it!
The big Pharma Companies push the responsibility off on to Doctors. Doctors don't inform the Patients about the side effects of these Drugs. There is a terrible lack if information out there & Women/Men are being coercised into taking this Drug/Injection. People's Bones lose density as we all age & a more wholistic approach needs to be a way to go with good Diet & weight bearing exercise etc. I was actually frightened by Doctors (3) of them but they don't ever tell you that once started on these Drugs you can never come off them!! It's all about the Money & Big Pharma!! I feel like I am a Human Guinea Pig!! Dentists don't like these Drugs because of serious Side -Effects that they can cause. If I knew back then what I know now, I would never have started it!! Regards.
I have gone from osteoporosis to ostoepenia with moderate amounts of calcium, vit D, vit K2, magnesium and boron. Boron is very important. That was the one thing I was totally depleted of. Then exercise. So important. Preferably as hard as you can take. A few repetitions with a heavy weight is better than 20 with a light weight. You have got to exercise. I don't take any of these drugs.
Wish I had seen this video before my PCP put me on it. I had not had any previous bone fractures. I was active and in hindsight I should not have been put on it.
This medicin is prescribed to my mother and I just read the leaflet and shocked about the serious side-effects like jaw necrosis and body aches and hip fractures wich made me to reconsider it and to discusse other options with her oncologist
I have been on Prolia (denosunab) prescribed by Cleveland Clinic for one year. I was not told about this decline in BMD inthe event of discontinuation. Also another endocrinologist has told me that if you delay an injection for much more than 6 months you will see some of this decline in BMD. Despite this my last Prolia injection was delayed over a month by the Cleveland Clinic due to "staffing issues." And it took the CC 9 months to get approval to start me on this treatment. I would not call this "world class care."
Thank you for sharing your experience with us. Our Ombudsman's Office is here to help you. You can contact their office directly at 800.223.2273 ext. 42544 between 8 a.m. - 5 p.m., Monday - Friday or via email at ombudsman@ccf.org.
@@hananezzat7973 Go see a good and honest dentist, get bad teeth extracted before your first Prolia injection. Once you started Prolia, no dentist will pull teeth!
@@hananezzat7973I wish I had never as my bones were not that bad to start with. Now investigating what to do to BUILD back BONES BETTER as want to stop after 8 years, now 76.
Dr. Deal, You show on slide one, there was an increase in bone density in the lumbar spine of 6.5% in two years, then a loss of the total amount over the next 12 months. The bone density then rises up to about 1% from month 36 through 48. Were the subjects in this study reintroduced to another drug from months 36 to 48, or were all osteoporosis drugs, discontinued? Appreciate your clarification. 😄 James
I went off Prolia after only one injection but did not do a relay drug. It's been 18 months since i went off and I'm scared. I didn't even have osteporosis!!!! Doc didn't tell me the side effects or how to get off. I have pain all over right now trying to figure things out. Even doctors don't know what's going on.
So true!! We are just Human Guinea Pigs for the Pharmaceutical Companies. As with Cigarettes, there should be warnings on Packets about Side -Effects & once started it cannot be stopped!!
Need to develop more drugs that work without those side effects. Yikes! I was just diagnosed with -2.5 TScore. My lumbar spine is the problem. Tried oral bisphosphonates and had horrible nausea. Dr agreed we needed to stop it. Will try Zoleonic acid but not yet. I am 68 and don’t want a lifetime of side effects. Doing everything else right but will start medication in a year or so. I already have problems with nausea and don’t want to make it disabling
Doctors should explain the pros and cons . And after that one needs to do his research. Unfortunately i took the first injection before doing some research and i m stopping it. Seeking the best way to do it
I take this for two years because of my lung tumour which started from giant tumour of the femur afyer being on surgery. I do have some rash now in the inferiir sidw of the hips. This is for the lung nodules to stagnate, but i dont want it anymore. I do have pain in bones,.but there is no other treatment.
Но ведь можно после пяти лет приёма пролиа, закрепить результат бисфосфонатами.... В России делают именно так и нет никакого снижения плотности костей, после отмены пролиа.
You forgot to mention that denosumab causes hypothyroidism. You forgot to point out that the bone matter built up is brittle. What are we gaining here?
Hello Dr. Deal - You made the comment about talking to your patients “so when denosumab is started, I always remind the patient that it’s forever”. I think you might be talking in hyperbole because it's absolutely not true. I have attended multiple trainings from experts like Dr. John Bilezikian, Dr. Michael McClung (whose study you reference), Dr. Serge Ferrari, as well as the studies you reference here in your presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. And to be clear on some of the other points you make about fractures after stopping denosumab, those are only prevalent if you do not follow with a bisphosphonate.
Hi Michael, Does anyone know if this rebound increased resorbtion rate is permanent or is it only temporary? How long might it last? Does your body set a permanent new resorbtion rate after being on Prolia? Are there studies that show this is only temporary, and after a period of time at the rebound increased resorption rate you return to your rate of resorption before taking Prolia? Thanks, Jim
But what happens if you can't take bisphosphonate or ReClast because all of your molars have already come out because of prolia and you don't want to loose the teeth you have left and after bariatric surgery, orals aren't an option?
I mean as long as there’s no untoward side effects. In other words, it is beneficial for stronger vertebral health and nothing harmful with continuous use. Thanks again for help.
@@user-cu1ic4sc1z Check out the podcast Optimal Bone Health. It's the best info on the options for osteoporosis treatment. He is an MD ortho surgeon and he thinks it's not always the best to treat with this if the patient is not quite elderly because its need to be on it so long. I wish I could have used Forteo which seems to be one of the better options but insurance will almost never cover it and it is very expensive.
In the UK we are never given any information before taking prolia and I didnt realise it was for life. Having said that my bone density seems to have improved slightly after 3 years on it. No side effects, but I am having some teeth loss, although Im not sure if that wouldnt have happened anyway as I'm 70
Did you see your dentist or endodontist? I am 71 and have been on Prolia for seven years. I developed cavities and my dentist wouldn't extract them for fear of triggering necrosis of the bones underneath the extracted teeth. So I was sent to an endodontist for root canal. Very expensive! Nobody told me about taking extremely good care of my teeth before or during the injection!
I'm waiting to have 2 lower teeth extracted and have been referred to the hospital. I'm really scared about necrosis of the jaw and only this morning went for a preliminary before having them extracted. I was told this is a slight chance, but no real reassurance. Told to take Corsydol 1 week before and 6 weeks after. I'm now terrified and so wish I hadn't gone on prolia in the first place!!
@@maureenmcdonald8714 Best wishes! Please update on your progress. My endodontist referred me to have root canal because he refused to do extraction. Long story short I am now staring at my huge dental bills!
Uggggg!!!! So The ones of us that unfortunately started the injections over 15 yrs ago have to continue getting the drug along with our other side effects like our teeth falling out, bone ailments, etc? Drug manufacturers should be held more accountable
I've lost all of my molars on the right side top and bottom after 2.5 years and want to stop now but RECLAST is worse on your teeth and according to my dental surgeon stays in your system for a decade. Had bariatric surgery so no oral. I'm left with nothing....
Thanks, all! I go back to the endocrinologist next week to give my answer as to whether or not to begin Prolia. Great timing for me seeing this message. Ain’t a gonna do it!
The big Pharma Companies push the responsibility off on to Doctors. Doctors don't inform the Patients about the side effects of these Drugs. There is a terrible lack if information out there & Women/Men are being coercised into taking this Drug/Injection. People's Bones lose density as we all age & a more wholistic approach needs to be a way to go with good Diet & weight bearing exercise etc. I was actually frightened by Doctors (3) of them but they don't ever tell you that once started on these Drugs you can never come off them!! It's all about the Money & Big Pharma!! I feel like I am a Human Guinea Pig!! Dentists don't like these Drugs because of serious Side -Effects that they can cause. If I knew back then what I know now, I would never have started it!! Regards.
I wish I had this info before I started Prolia!
I have gone from osteoporosis to ostoepenia with moderate amounts of calcium, vit D, vit K2, magnesium and boron. Boron is very important. That was the one thing I was totally depleted of. Then exercise. So important. Preferably as hard as you can take. A few repetitions with a heavy weight is better than 20 with a light weight. You have got to exercise. I don't take any of these drugs.
Thanks for this. You have helped me make up my mind to decline the treatment!
Wish I had seen this video before my PCP put me on it. I had not had any previous bone fractures. I was active and in hindsight I should not have been put on it.
This medicin is prescribed to my mother and I just read the leaflet and shocked about the serious side-effects like jaw necrosis and body aches and hip fractures wich made me to reconsider it and to discusse other options with her oncologist
I rather enjoy my life today than try to save for tomorrow. No side effect whatsoever. Just continue to watch my steps and eat the best I can
I have been on Prolia (denosunab) prescribed by Cleveland Clinic for one year. I was not told about this decline in BMD inthe event of discontinuation. Also another endocrinologist has told me that if you delay an injection for much more than 6 months you will see some of this decline in BMD. Despite this my last Prolia injection was delayed over a month by the Cleveland Clinic due to "staffing issues." And it took the CC 9 months to get approval to start me on this treatment. I would not call this "world class care."
Thank you for sharing your experience with us. Our Ombudsman's Office is here to help you. You can contact their office directly at 800.223.2273 ext. 42544 between 8 a.m. - 5 p.m., Monday - Friday or via email at ombudsman@ccf.org.
I'm about to stop prolia because after 4 years, my bone density got worse. Worst drug ever.
I have been on it for several years. No side affects but if I knew what I know now, I would have never started. Stuck with it! Ugh!
Same here.
What about the side effect affecting gums and jaw and bone pain
My mother is going to start her first dose what do you recommend?
Pregunta mucho antes de hacerlo, todos sus pros y contras.
@@hananezzat7973 Go see a good and honest dentist, get bad teeth extracted before your first Prolia injection. Once you started Prolia, no dentist will pull teeth!
@@hananezzat7973I wish I had never as my bones were not that bad to start with. Now investigating what to do to BUILD back BONES BETTER as want to stop after 8 years, now 76.
Dr. Deal, You show on slide one, there was an increase in bone density in the lumbar spine of 6.5% in two years, then a loss of the total amount over the next 12 months. The bone density then rises up to about 1% from month 36 through 48. Were the subjects in this study reintroduced to another drug from months 36 to 48, or were all osteoporosis drugs, discontinued? Appreciate your clarification. 😄 James
I went off Prolia after only one injection but did not do a relay drug. It's been 18 months since i went off and I'm scared. I didn't even have osteporosis!!!! Doc didn't tell me the side effects or how to get off. I have pain all over right now trying to figure things out. Even doctors don't know what's going on.
So true!! We are just Human Guinea Pigs for the Pharmaceutical Companies. As with Cigarettes, there should be warnings on Packets about Side -Effects & once started it cannot be stopped!!
Thank you very much.
I refuse to take Prolia. Too many side effects.
I have had 2 shots about 6 months apart and so far no side effects. But I am very concerned about staying on the drug forever.
Need to develop more drugs that work without those side effects. Yikes! I was just diagnosed with -2.5 TScore. My lumbar spine is the problem. Tried oral bisphosphonates and had horrible nausea. Dr agreed we needed to stop it. Will try Zoleonic acid but not yet. I am 68 and don’t want a lifetime of side effects. Doing everything else right but will start medication in a year or so. I already have problems with nausea and don’t want to make it disabling
I DID ONE SHUT , and I wouldn't do it anymore .
Doctors should explain the pros and cons . And after that one needs to do his research. Unfortunately i took the first injection before doing some research and i m stopping it. Seeking the best way to do it
Me too . I DIDENT RESERCH , I DID ONE SHUT AND I WOULDEN DO IT. IS DESSAYRES .
I take this for two years because of my lung tumour which started from giant tumour of the femur afyer being on surgery. I do have some rash now in the inferiir sidw of the hips. This is for the lung nodules to stagnate, but i dont want it anymore. I do have pain in bones,.but there is no other treatment.
Но ведь можно после пяти лет приёма пролиа, закрепить результат бисфосфонатами.... В России делают именно так и нет никакого снижения плотности костей, после отмены пролиа.
You forgot to mention that denosumab causes hypothyroidism. You forgot to point out that the bone matter built up is brittle. What are we gaining here?
Hello Dr. Deal - You made the comment about talking to your patients “so when denosumab is started, I always remind the patient that it’s forever”. I think you might be talking in hyperbole because it's absolutely not true. I have attended multiple trainings from experts like Dr. John Bilezikian, Dr. Michael McClung (whose study you reference), Dr. Serge Ferrari, as well as the studies you reference here in your presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. And to be clear on some of the other points you make about fractures after stopping denosumab, those are only prevalent if you do not follow with a bisphosphonate.
Hi Michael,
Does anyone know if this rebound increased resorbtion rate is permanent or is it only temporary? How long might it last?
Does your body set a permanent new resorbtion rate after being on Prolia?
Are there studies that show this is only temporary, and after a period of time at the rebound increased resorption rate you return to your rate of resorption before taking Prolia?
Thanks, Jim
But what happens if you can't take bisphosphonate or ReClast because all of your molars have already come out because of prolia and you don't want to loose the teeth you have left and after bariatric surgery, orals aren't an option?
What is the truth about Prolia ? I was prescribed to take it but with all the mentioned side effects I am having second thoughts ….
Do I understand you that there is nothing wrong with life long use of Prolia as long as one dies not have untoward side effects? Thx.
I mean as long as there’s no untoward side effects. In other words, it is beneficial for stronger vertebral health and nothing harmful with continuous use. Thanks again for help.
@@user-cu1ic4sc1z Check out the podcast Optimal Bone Health. It's the best info on the options for osteoporosis treatment. He is an MD ortho surgeon and he thinks it's not always the best to treat with this if the patient is not quite elderly because its need to be on it so long. I wish I could have used Forteo which seems to be one of the better options but insurance will almost never cover it and it is very expensive.
So ... drugs, drugs and more drugs. Shame on CC & drug companies.
In the UK we are never given any information before taking prolia and I didnt realise it was for life. Having said that my bone density seems to have improved slightly after 3 years on it. No side effects, but I am having some teeth loss, although Im not sure if that wouldnt have happened anyway as I'm 70
Did you see your dentist or endodontist? I am 71 and have been on Prolia for seven years. I developed cavities and my dentist wouldn't extract them for fear of triggering necrosis of the bones underneath the extracted teeth. So I was sent to an endodontist for root canal. Very expensive! Nobody told me about taking extremely good care of my teeth before or during the injection!
I'm waiting to have 2 lower teeth extracted and have been referred to the hospital. I'm really scared about necrosis of the jaw and only this morning went for a preliminary before having them extracted. I was told this is a slight chance, but no real reassurance. Told to take Corsydol 1 week before and 6 weeks after. I'm now terrified and so wish I hadn't gone on prolia in the first place!!
@@maureenmcdonald8714 Best wishes! Please update on your progress. My endodontist referred me to have root canal because he refused to do extraction. Long story short I am now staring at my huge dental bills!
No, you shouldn't lise your Teeth if they are looked after properly. Dentists & Orthodontists don't like this Drug!!
Why do people get this
Bone cancer rare type
this stuff is poison !
You say nonsense about prolia .Why you make people panic about this drug? Shame on you.
Not true-people are having significant reactions and they need to be seriously considered before even having one shot. Read the research
@@BarbSealy you should read and research more ….not me! Shame , shame on fake doctors