Prolia treatment for osteoporosis: What is your experience?

Good evening, thanks so much for your feedback. I learned some new realities. First of all, my mother did not die from the hip fracture. She was an active go-getter and when relegated to a wheelchair, found little to enjoy about life. I think she could have learned to walk again but chose not to. So....if she had not fractured her hip, things wouldn't have seemed so bleak. She also stopped communicating as depression overtook her.

Re: Prolia reactions. I will withhold further claims about no side effects from Prolia until I have had my next injection or even the third injection. That is good advice. The negative reactions from the bisphosphonate happened with a few days and then got worse.

My indecisive brain is right now remembering how much I stewed and fumed over this decision. I about made myself sick. When they told me how it would be taken care of in the ER for immediate reactions, I felt a bit better. I will stay in touch with you should anything else happen that might be helpful for you and others.

May you be content and at ease.
Chris

Hi Chris, thanks for your reply. I took Actonel for 6-7 years with zero side effects and I am on it again after 9 years taking nothing . I am in the middle of making a decision about Prolia.. But first I need to have teeth checked again even though I just had the exam and cleaning last mouth. One tooth seems to be hurting when I bit something hard. .Yes let's stay in touch.
By the way, why didn't doctor treat your mom's depression? I wonder. I was in deep depression back in 2005 when I was diagnosed of osteoprosis. It lasted 2 years of not being able to function.

Lee

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

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.

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

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.

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.

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

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.

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