Prolia treatment for osteoporosis

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

@artscaping

Hi Lee…..I think clinicians want the dental checks because of the jaw issues. I can remember just wanting all my teeth pulled.

And my Mom……that was a different era……she was not offered any therapy or medication for her depression. She was about 85 then and a resident in a Quaker facility. She had breast cancer that had metastisized and my Dad had recently passed after way too many falls and concussions from Alzheimer's. She was moved from an independent living situation to a shared room in a skilled nursing facility. Life seems to be much more difficult when you are either in bed or in a wheelchair all day long.

I am glad to see that the elderly are being recognized a bit more humanely and their needs are being met in more humane ways. I was living in Hawaii for several years and finally moved back to CA (Idyllwild) so my daughter didn't have to be responsible for her all of the time because of my absence.

Your depression of 2 years ended up with an inability to function. How were you cared for and treated so that you came out the other side?

May you be content and at ease.
Chris

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Hi Chris, during those 2 years of deep depression (I was 56 years old). Did not want to live any more because I felt my osteo and diabetes (at the same time I found out about my -3.3 t number and that I was pre diabetes). My doctor told me that he knew how to take care of diabetes but not osteo. I was in bed most of the time except the time I had to teach classes (I teach at two schools at that time). My mind was 100% on my health problems. So it was 15 years ago. I was on anti depressant and it helped me. But I was still thinking about my problem all the time. I lost 25 pounds because I did not dare eat food for fear my blood sugar would go up. But I must say I am more afraid of osteo problem. I was so terrified to have bone scan because I was afraid if the number was bad then I would go into deep depression again so I did not do scan since 2007 until 3 months ago when I saw my number -3.7 and went to see 2 endo doctors who told me different stories. One at the university hospital told me zero patients had any problems (that is over 1000 patients) and that all bad stuff on the internet was not true. While the other doctor told me yes about half of the patients dropped out of taking prolia. The one at the university told me if I break my hip now I would not be able to have hip replacement because the bone is too weak for the replacement and that surgeon would send me to him to take care of the osteo problem first. To me this means surgeon just throw a hot potato to endo. The other endo told me on Prolia I might be able to improve .1 each year so after 4 years my number would be -3.3 which still means high risk for hip fractures. So I asked if the improvement is worth the risk of taking Prolia and he said just take the prolia. As you can see I just don't know what to do.

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@leelinwant

Hi Chris, during those 2 years of deep depression (I was 56 years old). Did not want to live any more because I felt my osteo and diabetes (at the same time I found out about my -3.3 t number and that I was pre diabetes). My doctor told me that he knew how to take care of diabetes but not osteo. I was in bed most of the time except the time I had to teach classes (I teach at two schools at that time). My mind was 100% on my health problems. So it was 15 years ago. I was on anti depressant and it helped me. But I was still thinking about my problem all the time. I lost 25 pounds because I did not dare eat food for fear my blood sugar would go up. But I must say I am more afraid of osteo problem. I was so terrified to have bone scan because I was afraid if the number was bad then I would go into deep depression again so I did not do scan since 2007 until 3 months ago when I saw my number -3.7 and went to see 2 endo doctors who told me different stories. One at the university hospital told me zero patients had any problems (that is over 1000 patients) and that all bad stuff on the internet was not true. While the other doctor told me yes about half of the patients dropped out of taking prolia. The one at the university told me if I break my hip now I would not be able to have hip replacement because the bone is too weak for the replacement and that surgeon would send me to him to take care of the osteo problem first. To me this means surgeon just throw a hot potato to endo. The other endo told me on Prolia I might be able to improve .1 each year so after 4 years my number would be -3.3 which still means high risk for hip fractures. So I asked if the improvement is worth the risk of taking Prolia and he said just take the prolia. As you can see I just don't know what to do.

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Thank you……those experiences certainly justify your decision difficulties. What decision would be best for you to avoid deep depression?

Have you had any experience with mindfulness……as a practice? After I dug in pretty deep with mindfulness, I was pleasantly surprised that it became easier and easier to face many situations.
Almost automatically my mind would challenge my erratic concerns. I am pleased with consistent progress and benefit.

And finally, I have modified and rearranged priorities when it comes to medication. My PCP and I share the decision-making in that category so neither of us has to worry about making bad decisions.

Let me know your progress. I am sure you will make the decision that is right for you.

May you be mentally healthy and medically well.
Chris

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@artscaping

Thank you……those experiences certainly justify your decision difficulties. What decision would be best for you to avoid deep depression?

Have you had any experience with mindfulness……as a practice? After I dug in pretty deep with mindfulness, I was pleasantly surprised that it became easier and easier to face many situations.
Almost automatically my mind would challenge my erratic concerns. I am pleased with consistent progress and benefit.

And finally, I have modified and rearranged priorities when it comes to medication. My PCP and I share the decision-making in that category so neither of us has to worry about making bad decisions.

Let me know your progress. I am sure you will make the decision that is right for you.

May you be mentally healthy and medically well.
Chris

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Chris, If I knew what is the best for me I would not be depressed. I guess in medicine, every answer is wrong we just have to pick the best of all of the wrong answers. I came to this site to try to see what would be the best for me because I do not think doctors know better because they did not take the shots and therefore no experience with the side effects.
I think depression is a kind of genetic thing, it is in the DNA. I am the kind of person who gets depressed if I have no good answers for my problems. I have a friend who has breast cancer stage 4 but she is happy and runs around, goes to garage sales and bargins big time. She was first diagnosed 25 years ago and now the cancer is in the lungs and bones but she is not depressed. She is much younger than me. If I was her I would not be able to function at all. 0 functioning!!

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@leelinwant

Hi Chris, during those 2 years of deep depression (I was 56 years old). Did not want to live any more because I felt my osteo and diabetes (at the same time I found out about my -3.3 t number and that I was pre diabetes). My doctor told me that he knew how to take care of diabetes but not osteo. I was in bed most of the time except the time I had to teach classes (I teach at two schools at that time). My mind was 100% on my health problems. So it was 15 years ago. I was on anti depressant and it helped me. But I was still thinking about my problem all the time. I lost 25 pounds because I did not dare eat food for fear my blood sugar would go up. But I must say I am more afraid of osteo problem. I was so terrified to have bone scan because I was afraid if the number was bad then I would go into deep depression again so I did not do scan since 2007 until 3 months ago when I saw my number -3.7 and went to see 2 endo doctors who told me different stories. One at the university hospital told me zero patients had any problems (that is over 1000 patients) and that all bad stuff on the internet was not true. While the other doctor told me yes about half of the patients dropped out of taking prolia. The one at the university told me if I break my hip now I would not be able to have hip replacement because the bone is too weak for the replacement and that surgeon would send me to him to take care of the osteo problem first. To me this means surgeon just throw a hot potato to endo. The other endo told me on Prolia I might be able to improve .1 each year so after 4 years my number would be -3.3 which still means high risk for hip fractures. So I asked if the improvement is worth the risk of taking Prolia and he said just take the prolia. As you can see I just don't know what to do.

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Have you considered going to a different doctor? I was seeing an endocrinologist for my severe osteoporosis. I decided to see a rheumatologist because they also treat osteo among other diseases. I have been pleased with her and will stick with her as I start on Prolia next month. The reason I switched from the endocrinologist, a man, was that he absolutely refused to allow me to restart Evenity after I switched to another treatment which I could not tolerate. (I had decided that any side effects I thought Evenity caused were minor compared to the other options). The rheumatologist, a woman, consulted with the pharmaceutical rep and concluded there was no reason I could not restart Evenity. ( I don't even think I had an side effects with Evenity. I have numerous health problems so it is complicated. ) Don't be afraid to try another doctor if you are not sure what to do. After researching the subject of doctors who treat osteo I concluded that rheumatologists were better and the doctor I chose absolutely is better in every way than the endocrinologist I was seeing even though he is highly thought of. On depression, I think if you can have faith in your own judgement and wishes, and take control instead of delegating the decision to your doctor you may find it helps with your depression. My doctor said Prolia is the best treatment to follow Evenity. I have depression, too. I am 77 and have neuropathy. Nerve damage causing pain, weakness, fatigue, bladder, etc. I am not on meds for depression and struggle with it daily. I understand.

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@leelinwant

Hi Chris, during those 2 years of deep depression (I was 56 years old). Did not want to live any more because I felt my osteo and diabetes (at the same time I found out about my -3.3 t number and that I was pre diabetes). My doctor told me that he knew how to take care of diabetes but not osteo. I was in bed most of the time except the time I had to teach classes (I teach at two schools at that time). My mind was 100% on my health problems. So it was 15 years ago. I was on anti depressant and it helped me. But I was still thinking about my problem all the time. I lost 25 pounds because I did not dare eat food for fear my blood sugar would go up. But I must say I am more afraid of osteo problem. I was so terrified to have bone scan because I was afraid if the number was bad then I would go into deep depression again so I did not do scan since 2007 until 3 months ago when I saw my number -3.7 and went to see 2 endo doctors who told me different stories. One at the university hospital told me zero patients had any problems (that is over 1000 patients) and that all bad stuff on the internet was not true. While the other doctor told me yes about half of the patients dropped out of taking prolia. The one at the university told me if I break my hip now I would not be able to have hip replacement because the bone is too weak for the replacement and that surgeon would send me to him to take care of the osteo problem first. To me this means surgeon just throw a hot potato to endo. The other endo told me on Prolia I might be able to improve .1 each year so after 4 years my number would be -3.3 which still means high risk for hip fractures. So I asked if the improvement is worth the risk of taking Prolia and he said just take the prolia. As you can see I just don't know what to do.

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Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots which were terrible. I had severe leg pain all the time and worse if I laid down. I also lost a lot of hair. No one tells you but Prolia has the same chemotherapy drug (denosaub ?spelling) in it which is used to treat cancer. I finally had my dr. calculate my risk of breaking a bone based on my deka tests. Without prolia, the results were that over the next 10 years I had a 10% chance of breaking my hip and a 25% chance of breaking any bone.I will take those chances over being in pain all the time and losing my hair. Research prolia yourself and not on the prolia website. (Also, deka tests are unreliable if you do not have them done on the same machine each and every time.) Good luck! Kaye

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@sewcouture

Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots which were terrible. I had severe leg pain all the time and worse if I laid down. I also lost a lot of hair. No one tells you but Prolia has the same chemotherapy drug (denosaub ?spelling) in it which is used to treat cancer. I finally had my dr. calculate my risk of breaking a bone based on my deka tests. Without prolia, the results were that over the next 10 years I had a 10% chance of breaking my hip and a 25% chance of breaking any bone.I will take those chances over being in pain all the time and losing my hair. Research prolia yourself and not on the prolia website. (Also, deka tests are unreliable if you do not have them done on the same machine each and every time.) Good luck! Kaye

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Thank you so much for your reply. What you said is what I worry about. I don't want to lose hair or have severe leg pain. My DEXA shows 5.9% of breaking hip. My ENDO dr told me over 5% is considered high risk. Do you know that you do not need your dr to calculate the risk. When you do DEXA scan the report has that info included in the report. I worry about breaking femur neck bone because there is a 20% chance of dying in 1 year and more than 50% will never go back to the independence you once enjoyed. That is what I am scared of. I really wish that I took DEXA when I was younger so I could have done something to improve my bone density but I did not do it until age 56. Even then my GYN would not even give me the order to do it until I had lied to finally got it and then the femur neck was -3.3 imagine if I had waited until age 65 (as the dr told me the proper time) I would have not treated my bone. I did take Actonel for 6-7 years and that medicine held all parts constant or a little better except the femur neck. My ENDO told me Actonel would not help femur neck and only Protia would. I am torn between taking it and not taking it. It is a lose lose situation.
I have a friend who performs hip replacements at UCLA hospital told me as long as I do not fall then I won't break the bone. But then my ENDO (a second one) told me if I break my femur bone I cannot have a hip replacement due to weak bone for the replacement to go into and he said it is hard to avoid falling down. He said people do fall.
I hope both you and me and the rest of the members do not fall.

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@catharbert

Have you considered going to a different doctor? I was seeing an endocrinologist for my severe osteoporosis. I decided to see a rheumatologist because they also treat osteo among other diseases. I have been pleased with her and will stick with her as I start on Prolia next month. The reason I switched from the endocrinologist, a man, was that he absolutely refused to allow me to restart Evenity after I switched to another treatment which I could not tolerate. (I had decided that any side effects I thought Evenity caused were minor compared to the other options). The rheumatologist, a woman, consulted with the pharmaceutical rep and concluded there was no reason I could not restart Evenity. ( I don't even think I had an side effects with Evenity. I have numerous health problems so it is complicated. ) Don't be afraid to try another doctor if you are not sure what to do. After researching the subject of doctors who treat osteo I concluded that rheumatologists were better and the doctor I chose absolutely is better in every way than the endocrinologist I was seeing even though he is highly thought of. On depression, I think if you can have faith in your own judgement and wishes, and take control instead of delegating the decision to your doctor you may find it helps with your depression. My doctor said Prolia is the best treatment to follow Evenity. I have depression, too. I am 77 and have neuropathy. Nerve damage causing pain, weakness, fatigue, bladder, etc. I am not on meds for depression and struggle with it daily. I understand.

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My appt with a rheumatologist is december 1. I made that appt about 2 weeks ago. That is the soonest I can see that doctor. I am on wait list. I went to that same office 15 years ago when I was first diagnosed of osteo problem. But that doctor is no longer there and to see a different doctor there I have to wait till Dec. 1.

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@sewcouture

Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots which were terrible. I had severe leg pain all the time and worse if I laid down. I also lost a lot of hair. No one tells you but Prolia has the same chemotherapy drug (denosaub ?spelling) in it which is used to treat cancer. I finally had my dr. calculate my risk of breaking a bone based on my deka tests. Without prolia, the results were that over the next 10 years I had a 10% chance of breaking my hip and a 25% chance of breaking any bone.I will take those chances over being in pain all the time and losing my hair. Research prolia yourself and not on the prolia website. (Also, deka tests are unreliable if you do not have them done on the same machine each and every time.) Good luck! Kaye

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What you were thinking was what I thought too. That is to take my chance of breaking the bone when the chance is 5.9% within 10 years. But within 10 years doesn't mean 10 years, it means 1-10 years so we can break our bone any time within the next 10 years so it could be tomorrow. I at first thought 10 years is a long time and at that time I will be 81. But after some thoughts I told myself that was a wishful thinking. I just need to be careful not to fall everyday for the rest of my life.
My ENDO told me that I was already 'doomed' 14 years ago (at that time the score was -3.3) so I might have used my 10 years already. I am sure -3.3 already put me in the high risk of breaking hip.

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@sewcouture

Hi, Do Not start on Prolia. It is the worst drug imaginable. I took 2 shots which were terrible. I had severe leg pain all the time and worse if I laid down. I also lost a lot of hair. No one tells you but Prolia has the same chemotherapy drug (denosaub ?spelling) in it which is used to treat cancer. I finally had my dr. calculate my risk of breaking a bone based on my deka tests. Without prolia, the results were that over the next 10 years I had a 10% chance of breaking my hip and a 25% chance of breaking any bone.I will take those chances over being in pain all the time and losing my hair. Research prolia yourself and not on the prolia website. (Also, deka tests are unreliable if you do not have them done on the same machine each and every time.) Good luck! Kaye

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Hi Sewcouture, I forgot to mention that since you quit Prolia, you should take something else to preserve what you gained from Prolia. My ENDO told me to be on Prolia for 3 years and then switch to Actonel permanently to preserve what was gained from Prolia shots. So I hope you discuss this with your doctor about what to do after quitting Prolia. You cannot just quit prolia.
By the way you wanted me to read about Prolia instead of Prolia company's website. Guess why I am so terrified to the point I wondered onto this site? I read too much and that is why I am sooooooooooooo scared. 3 friends of mine took it and never even asked the doctors what the shot were let alone did any research. I was the one who told them that they had Prolia shots. They did not even question the doctor the name of the shots or side effects and did not even know their severe infection was due to those shots. They just took doctors' words and trusted that they were taken good care of.
My problem is that I read tooooooo much so got scared by what I read.

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@leelinwant

Hi Sewcouture, I forgot to mention that since you quit Prolia, you should take something else to preserve what you gained from Prolia. My ENDO told me to be on Prolia for 3 years and then switch to Actonel permanently to preserve what was gained from Prolia shots. So I hope you discuss this with your doctor about what to do after quitting Prolia. You cannot just quit prolia.
By the way you wanted me to read about Prolia instead of Prolia company's website. Guess why I am so terrified to the point I wondered onto this site? I read too much and that is why I am sooooooooooooo scared. 3 friends of mine took it and never even asked the doctors what the shot were let alone did any research. I was the one who told them that they had Prolia shots. They did not even question the doctor the name of the shots or side effects and did not even know their severe infection was due to those shots. They just took doctors' words and trusted that they were taken good care of.
My problem is that I read tooooooo much so got scared by what I read.

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Hi, First off, the doctor knew that I was quitting and he had no problem. (He is the head endocrinologist for a VERY large hospital.) He is also the one who calculated my risk if I quit the drug. I decided that I was not going to put chemotherapy drugs in my body with their consequences. I will accept the 25% risk of breaking a bone in the next 10 years rather than live with constant pain and hair loss. That is my decision. I now feel great and my hair loss has stabilized. But now I am even more suspicious of doctors and their recommendations. I wish you luck! I can't help myself but must add – remember, medicine is BIG business and doctors get money from the drug companies. I would suggest you go to physical therapy and exercise not too much and enjoy yourself, Kaye

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@sewcouture

Hi, First off, the doctor knew that I was quitting and he had no problem. (He is the head endocrinologist for a VERY large hospital.) He is also the one who calculated my risk if I quit the drug. I decided that I was not going to put chemotherapy drugs in my body with their consequences. I will accept the 25% risk of breaking a bone in the next 10 years rather than live with constant pain and hair loss. That is my decision. I now feel great and my hair loss has stabilized. But now I am even more suspicious of doctors and their recommendations. I wish you luck! I can't help myself but must add – remember, medicine is BIG business and doctors get money from the drug companies. I would suggest you go to physical therapy and exercise not too much and enjoy yourself, Kaye

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Hi Sewcouture, Thanks for your reply. I am glad that you are feeling better and seem very happy with your decision. I hope you keep us posted with good news in the future. By the way I do physical therapy at home. Did you say that I would not exercise too much? I exercise about 30 minutes daily, is it too much?

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@artscaping

Good afternoon @rashida, Unfortunately Justin is no longer with Connect. I am happy to respond to your inquiries about osteoporosis and Prolia. One of the differences between Facebook and Connect is the use of mentors and moderators who review every post for authenticity. So….in regards to Prolia, I will be starting it next month after 2 years on Tymlos which was chosen because of a bad reaction to bisphosphonates.

That sensitivity has made me wary. I have found good information by calling the manufacturer, Amgen, and talking to a medical professional. We know that everyone reacts differently in both positive and negative experiences. The studies that have been done indicate that only about 10% of the folks on Prolia have some kind of side effect. Because of the time between infusions, it is not possible to create a test situation. You need to have the entire subcutaneous dosage. For example, I will be staying in the clinic for 3 hours to make sure I have no reaction. If there is a reaction after that, I will proceed to the ER or Urgent Care for assistance.

Would you like to talk to the manufacturer's medical staff? Here is the number: 800 772-6436. Please let me know how it goes for you. Is your clinician a PCP, an Endocrinologist, or another type of specialist?

May you be safe and protected from inner and outer harm.
Chris

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@artscaping Thank you, Chris! I am glad to hear you will be on Prolia too – gives me someone to compare notes with! All that information on the Facebook page is mind boggling. Some people on that Facebook page even said talking to Amgen is no use, that they are not going to say anything negative to discourage users because after all, they are selling the drug and don’t want to lose sales.

My physician has started me on Prolia and I asked her if there is any alternative and she said no. I asked about going back to Actonel and she said that’s a bisphosphonate that I have been on already, and that can be taken for just five years, which I have, so I can’t go back on I do not have severe osteoporosis (just slight, at the base of my neck and top of my spine) but my doctor wants me on it just as a preventative.

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