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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@windyshores

@meganstpaulmn I have several fractures in my spine and totally agree with you on the pain. I never wore a brace much because I was told muscles would weaken but stayed in bed a lot.

Regarding HRT, as a breast cancer survivor (so far) I would just caution people on that risk. My cancer was driven by estrogen even after menopause.

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I hope you are stable now and managing ok. I had no idea how bad osteoporosis could be. The mental adjustment is difficult. This disease doesn't get the attention that it deserves! It's hard to figure out what to do.

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how did your dr minimize the side effects. my ra dr wants me to take evenity but i am so afraid of any reaction i know i can't go thru that pain again. it is like i went to bed one and woke up the next mornig with so many problems but i really say my problems started ater getting the prolia shot

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@shortnancy

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

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have nit decided on taking it so i am not sure

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@meganstpaulmn

I hope you are stable now and managing ok. I had no idea how bad osteoporosis could be. The mental adjustment is difficult. This disease doesn't get the attention that it deserves! It's hard to figure out what to do.

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i am glad i found this because there are days i think i am losing my mind. i go to a cognitive therapist to try and understand. having had 2 compression fratures one last dec and another this past august i am so afraid to do anything. it is like i have to think should i do this or not. it is such a shame that drs give these drugs and really have
no real knowledge of them. my dr said i never had anyone have such a severe reaction and sent me to someone else who has alittle knowledge but really should be alot better. awaiting an appt with another dr for a second opinion. from your post i know you understand how frustrating it is when no one really knows whar to do.i know i probably have to do something but what

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@gretch19

I will be speaking with Dr M in a few weeks. My P1NP is like yours and my CTX slightly lower at 514. I wonder what advice he will give me. I am pretty much resigned to starting Evenity after much research and thought. Also, I finally found a doc who got me approved, another hurdle with the uninformed insurance cos. I definitely believe its all a racquet with the pharma cos but I am also scared of waiting too long and fracturing something. Feels like a tightrope walk for sure.

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Wow my CTX is 934 and P1NP is 77.
I have started Eventy for a spine T score of -4.6 also.
Please keep us updated on what McCormick has to say.

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@kristie2

Wow my CTX is 934 and P1NP is 77.
I have started Eventy for a spine T score of -4.6 also.
Please keep us updated on what McCormick has to say.

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

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@proliamistake

within 48 hrs i was in severe pain could not really walk or open my hands went to my dr he gave me a steroid pac i took the first line and by the next day all the pain was gone so i thought. the minute i was off the steroids the pain came back.it was my whole body a burning deep penetrating pain that i couldn't sleep walking and moving was very painful my whole body just ached. i was put on 20 mg prednisone and that helped somewhat but i was never without pain. as the months went on and the shot was waning the pain got better and then i was told i had ra never had any o =f this before the shot so yes i do believe the shot did alot of damage and i beliee it is still doing it. do not take the prolia shot 6 wks after having the shot i had my first compresion fracture but did not know it until it was pretty much healed. very painful then my 6 mos with prolia was up on may and this past auguat i had another compression frxture. they say that happens whwn you stop the prolia and i only had 1 shot. i am so angry with myself gor not checking it out i trusted my dr and now will suffer with side effects for the rest of my life such as fractures i can only say the fda did not vet this drug properly and drs are giving it out and know nothing about it ir how bad it can be nope this helps

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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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@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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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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@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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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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@proliamistake

i am glad i found this because there are days i think i am losing my mind. i go to a cognitive therapist to try and understand. having had 2 compression fratures one last dec and another this past august i am so afraid to do anything. it is like i have to think should i do this or not. it is such a shame that drs give these drugs and really have
no real knowledge of them. my dr said i never had anyone have such a severe reaction and sent me to someone else who has alittle knowledge but really should be alot better. awaiting an appt with another dr for a second opinion. from your post i know you understand how frustrating it is when no one really knows whar to do.i know i probably have to do something but what

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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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