1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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proliamistake | @proliamistake | Sep 26, 2023
In reply to @meganstpaulmn "It seems like no clear answers for osteoporosis. The decisions are hard with the newer drugs..." + (show)
@meganstpaulmn

It seems like no clear answers for osteoporosis. The decisions are hard with the newer drugs on the market having so little history. I am (finally) seeing an endocrinologist in a couple weeks. Waiting so long has raised my expectations. I hope he will offer me some positive treatment alternatives. It's easy to start feeling it's hopeless.

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i agree with you just be sure the treatment yiu are going to get will help you long term and what happens when you stop taking it

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1 reply
proliamistake | @proliamistake | Sep 26, 2023
In reply to @margoduncan "I have been taken alendronate for a bit over a year and started a new year..." + (show)
@margoduncan

I have been taken alendronate for a bit over a year and started a new year with not much success Now I am not under the boarder line of osteo but I am osteo I need to check into my numbers more now that I am a bit paranoid of all these new meds to building bones. I asked my family doctor about that needle to help build bones and she recommended I speak to a specialist which I did. She was asking me all these questions almost like she had no information in front of her about my pass. I felt a bit uncomfortable but right away suggested prolia. I was excited at first to be starting this new bone builder till I picked up my injection at my pharmacy and it was not refrigerated right away when I got home for about 5 hrs . I started to read up on it if it was not refrigerated what can happen then I came across this site and now I am totally freaked out about even taking it. I have it in the fridge and I will not be taking it till I sit down again with this specialist and I request my findings on my last scan where I stand. Maybe I am not bad enough to do this and try an alternative to what I was on or could still be on and more. I am 68 and pretty active and I cannot afford these side effects for life. Maybe reading more of this will clarify my thinking of what avenue to take. So far I am very torn on all these treatments I am thinking of risking not taking anything and dealing with what ever happens and hope I never break a bone then to take something and having fractures in my back over nothing. Scare out of my mind here

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it is amazing to me how little the drs know about these drugs. my dr said i don't know what to do because i never had anyone have a reaction like yours so i said well, you know now. the prolia shot was poison. now the dr wants to to take evenity because i have had 2 compression fratures (FROM THE PROLIA SHOT) i have such anxiety about these drrugs and do they really not sure what to do

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1 reply
mao22 | @mao22 | Sep 26, 2023
In reply to @shortnancy "Thank you for your answer. Does the Infusion center order the Evenity for you each month?" + (show)
@shortnancy

Thank you for your answer.
Does the Infusion center order the Evenity for you each month?

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Good question, but I am not sure how it all comes about. Must be a standing order for once a month for 12 months. I make the monthly appointments 1-3 months ahead of time (so I can work around any plans I have) and the box containing the shots is there waiting for me. A nurse at the infusion center takes the box out of refrigeration to warm up before I arrive. The whole process is very smooth. My number 7 is this Thursday.

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kristie2 | @kristie2 | Sep 26, 2023
In reply to @gretch19 "Will do. How far into the treatment are you and how are you tolerating it?" + (show)
@gretch19

Will do. How far into the treatment are you and how are you tolerating it?

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I have done 2 injections so far and no side effects. All is good so far with Evenity.

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margoduncan | @margoduncan | Sep 26, 2023
In reply to @proliamistake "it is amazing to me how little the drs know about these drugs. my dr said..." + (show)
@proliamistake

it is amazing to me how little the drs know about these drugs. my dr said i don't know what to do because i never had anyone have a reaction like yours so i said well, you know now. the prolia shot was poison. now the dr wants to to take evenity because i have had 2 compression fratures (FROM THE PROLIA SHOT) i have such anxiety about these drrugs and do they really not sure what to do

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I totally agree even my pharmacist I am reading now some of the reasons I might not been absorbing all my calcium pills into my body it is really frustrating for me to read stuff now how things work they are not clear on how to take some and what can bond your calcium you take out of your body simply with taking it with other meds or food I feel I wasted years of trying to stay out of been osteo to my cost cause dr's and pharmacist do not go into details with you in some very basic things. I dunno if its because im 68 soon and pay more attention but I think if a few key words were told to me even then back years ago I would of known more then I do now ..Like ok my body can't absorb more then a certain amount at one time he should of told me to break up my amounts through the day and this is with calcium pills intake none of these other new drugs. I am at a point where I do not trust any dr views on things or pharmacist for that simple reason. I rely on people who have tried it or read into it in more details. Urg this is so frustrating ...thank you for your reply

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1 reply
margoduncan | @margoduncan | Sep 26, 2023
In reply to @proliamistake "i agree with you just be sure the treatment yiu are going to get will help..." + (show)
@proliamistake

i agree with you just be sure the treatment yiu are going to get will help you long term and what happens when you stop taking it

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I stopped it from the day I brought it in the house I am going to take my time on the decisions I even prosponed my follow up app from taking this prolia to get more educated into this the specialist already answered a question I asked about getting worst if I take it and stop right away I am reading all this and it is not the answer she gave me. I will go with people using it hear say before a specialist that has never taken it herself ..urg I hate growing old lol

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margoduncan | @margoduncan | Sep 26, 2023
In reply to @lynn59 "I’m so sorry you are scared out of your mind. I kinda felt the same way..." + (show)
@lynn59

I’m so sorry you are scared out of your mind. I kinda felt the same way when my spine dropped recently to -3.1. I’m still trying to decide on the right pharmaceutical treatment for me, even though I am very reticent to take any of these drugs. I was fine managing without pharmaceuticals at scores of -2.5 and -2.7 that were stable for 12 years, but now that my spine dropped rapidly to -3.1, I feel I have little choice as I’m so worried it might decline further which will be very bad as I downhill and cross country ski in the mountains. I completely understand where you are coming from. From your comment that you are now just osteoporosis, I’m assuming your scores are hovering around -2.5. Does your doctor feel you need pharmaceuticals at that T-Score?

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Thank you for your response. I am not sure if she feels I am at that point this is why I called this morning to find my scores and the receptionist wants me to talk to my family doctor on oct 19 my physical app. So now i am going to cancel my specialist app for after that date so I am more prepared on what decision I want to do when I have more facts on my end. I felt I was doing a radical decision and feel mis informed. I had lasik surgery on my eyes I have worked all my life with eyes since I was 17 and retired in my early 60's and only a few years ago after years of having it done I read articles how some are ruined for life with cronic pain burning etc in their eyes from it this is a side effect that you can have. I had no idea of these side effects or know anyone with it but they are know all over the world and some commit suicide because they cannot handle the pain anymore . I feel this drug might be one if I get the side effect I wont be able to deal in life with this is my fear right now how my luck has been going it will be me. But if I bought a lotto ticket I would never win lol oh well these decisions are so frustrating and scary to make and yet I read of success in so many I just feel unlucky lately where I stand in life sighhhh 🙁

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margoduncan | @margoduncan | Sep 26, 2023
In reply to @windyshores "I had osteoporosis for 16 years and did cancer meds toward the end that greatly worsened..." + (show)
@windyshores

I had osteoporosis for 16 years and did cancer meds toward the end that greatly worsened things. I fractured as a result (lumbar spine) with a very unwise movement.

Talk to an endocrinologist and you can also consult with Keith McCormick, a chiropractor (you can google him) or buy his book "Great Bones" (on Amazon). He might tell you that your scores aren't terrible and give you some tips on how to maintain what you have (his other book is "The Whole Body Approach to Osteoporosis."

My doctor as well as McCormick tell me (and write) that it is better to do Forteo, Tymlos or Evenity before Prolia or a bisphosphonate. The problem is that insurance wants it the other way around!

Once you go on Prolia you are kind of stuck because going off of it can mean quick loss of bone density and increase in fractures. You then have to go on Reclast or Fosamax to avoid that situation and the timing of that transition is very very tricky. My docs won't use Prolia at all for that reason.

If you are borderline or just over the borderline for osteoporosis, you may be able to avoid Prolia but ask your doctor and get other opinions if you need to.

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Oh thank you for your response I will def look into these books or try to contact Dr Mccormick when I seen his name on these post I thought it was someone specialist in the state somewhere in real life appointments. I had no idea he was someone online and with books. Great to know this. Yes I feel i just went into osteo I have no recollection on the no for some reason i think 4 but i forget now if this was bad cholesterol levels she just told me or osteo one lol this is why I will be seen her oct 19 so I am very clear where I stand in all of this before making a decision.
thank you so much for your input and the other drugs. I know I will probably have to wait 6 months before deciding on a new one because I just received the first one of prolia and I wont be taking it I am too paranoid of it I think if I am not that bad rather do the turtle race then be the rabbit race if that makes any sense to some. Thank you again for your advice it is greatly appreaciated.

REPLY
proliamistake | @proliamistake | Sep 27, 2023
In reply to @margoduncan "I have been taken alendronate for a bit over a year and started a new year..." + (show)
@margoduncan

I have been taken alendronate for a bit over a year and started a new year with not much success Now I am not under the boarder line of osteo but I am osteo I need to check into my numbers more now that I am a bit paranoid of all these new meds to building bones. I asked my family doctor about that needle to help build bones and she recommended I speak to a specialist which I did. She was asking me all these questions almost like she had no information in front of her about my pass. I felt a bit uncomfortable but right away suggested prolia. I was excited at first to be starting this new bone builder till I picked up my injection at my pharmacy and it was not refrigerated right away when I got home for about 5 hrs . I started to read up on it if it was not refrigerated what can happen then I came across this site and now I am totally freaked out about even taking it. I have it in the fridge and I will not be taking it till I sit down again with this specialist and I request my findings on my last scan where I stand. Maybe I am not bad enough to do this and try an alternative to what I was on or could still be on and more. I am 68 and pretty active and I cannot afford these side effects for life. Maybe reading more of this will clarify my thinking of what avenue to take. So far I am very torn on all these treatments I am thinking of risking not taking anything and dealing with what ever happens and hope I never break a bone then to take something and having fractures in my back over nothing. Scare out of my mind here

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please read my post on prolia and be very careful about taking it

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1 reply
nancybrown1234 | @nancybrown1234 | Sep 27, 2023

I am in a similar situation with similar bone density score and rheumatologist singing the praises of Evenity. But my research of reputable medical sites and naturopathic sites has helped me make a decision. I am seeking a second opinion from another rheumatologist and meantime improving my diet, taking calcium, K2, D3, increasing weight bearing exercises, flexibility and balance, and managing my stress. Ultimately, I do not want to be on medicine with unproven results and dangerous side effects when I have had no fractures and probably have strong ( although not dense) bones. I have noticed they keep coming out with new “game changing” drugs like Prolia and Evenity but my insurance at work and now in retirement does not cover them. My stomach did not tolerate cheaper drugs and my Reclast infusion did not improve my scores. So it is a never ending saga. I am sorry you are going though a similar experience. From all my research I find I am most likely to stop worrying and enjoy my life. I am 67, and until insurance covers a truly proven, safe drug I am going to most likely opt out. Best of luck with your decision.

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