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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Hello heyhey,
Your post was from 2020 and I am curious if you did start a treatment plan and if so what was it ?

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Thank you for sharing. I too am struggling with the decision to take Evenity, which is scheduled for next Wednesday. I like my doctors very much and dislike ignoring their advice, but I am conflicted.

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@lashu

Thank you for sharing. I too am struggling with the decision to take Evenity, which is scheduled for next Wednesday. I like my doctors very much and dislike ignoring their advice, but I am conflicted.

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Lash,
It is a hard decision! To me it all depended upon my T score of my spine which was -4.6 and I need to get out of that hole. I needed to take a anabolic bone med to help rebuild my bones along with stopping the breakdown. I am 1 month in with starting Evenity which to me in a 1 year time had the best turn around and the others are for 2 years with a daily injection. I know I will then have to take an oral med afterwards. That is the case with this whole journey. From reading all these comments most of us feel the same way and the process is scary. I still worry about side effects.

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@kristie2

Lash,
It is a hard decision! To me it all depended upon my T score of my spine which was -4.6 and I need to get out of that hole. I needed to take a anabolic bone med to help rebuild my bones along with stopping the breakdown. I am 1 month in with starting Evenity which to me in a 1 year time had the best turn around and the others are for 2 years with a daily injection. I know I will then have to take an oral med afterwards. That is the case with this whole journey. From reading all these comments most of us feel the same way and the process is scary. I still worry about side effects.

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Hi @kristie2,
Thank you for sharing your experience. How did the first Evenity injection work for you? There are a number of side effects I worry about that have received little attention. The neuropathy in my feet is a persistent (at least four decades old now, I am 82) problem that may be aggravated. My cardio state seems healthy enough for this regimen. My T score was negative three point eight but my endocrinologist urges me to Evenity. I guess I'll go through with the first shot on
Wednesday this coming week unless some other information emerges to block it.

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I had no reaction to my 1st. Injection done in my upper arm. Believe me I am very sensitive 🤣. I do my own that’s the way it was set up. My 2nd injection will the 17th of this month. I have a history of migraines and not even a headache.

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Hello my name is Linda and I am 55yrs old I was diagnosed with osteoporosis even I was 50 I have been taking Prolia for about 4yrs it was slowly improving but I smoked cigarettes as well witch is not good for you I quit smoking a yr and a half ago I was do for a Prolia shot 5 months ago but got off of it because I thought I might want to have dental work done do too getting off of it for 5 months caustic me to have L2 through L5 Lumbar compression fractures so to let you know any kind of osteoporosis medicine you take and you get off you are at a high risk my endocrinologist said that Prolia is the best out there I asked her about that new medicine thinking maybe it might work faster to get my bones stronger and she said Prolia

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I truly feel your pain... I was in the same position this winter. Faced with a spontaneous ankle fracture, a bad T score, other heath issues...I procrastinated. Did my RN research, and still was unsure.
My fear of doing nothing, and being dependant on my poor husband finally made me choose.
I read all the pharmacy info. I picked Prolia... It seemed the less of the worries. I have learned reading the reviews makes one more stressed. I read horror stories.
I have had ZERO side effects. I'ld like to tell you my bone density has improved. But it has been too soon to test. My point is you Have to just choose one.. T scores don't lie... Trust your doctors . make a choice. Think positive. I was where you are.. A wreck. Now I am positive this is helping

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@kristie2

I had no reaction to my 1st. Injection done in my upper arm. Believe me I am very sensitive 🤣. I do my own that’s the way it was set up. My 2nd injection will the 17th of this month. I have a history of migraines and not even a headache.

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Hi Kristie, thank you for sharing, it's good to hear that you had no reaction to your first injection. You said you do your own: injection? Did they show you how to do it? Do you do it at home? I have to go to a clinic for the nurse to do it.

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@sup7401

I truly feel your pain... I was in the same position this winter. Faced with a spontaneous ankle fracture, a bad T score, other heath issues...I procrastinated. Did my RN research, and still was unsure.
My fear of doing nothing, and being dependant on my poor husband finally made me choose.
I read all the pharmacy info. I picked Prolia... It seemed the less of the worries. I have learned reading the reviews makes one more stressed. I read horror stories.
I have had ZERO side effects. I'ld like to tell you my bone density has improved. But it has been too soon to test. My point is you Have to just choose one.. T scores don't lie... Trust your doctors . make a choice. Think positive. I was where you are.. A wreck. Now I am positive this is helping

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Thank you, sup7401, for sharing your experiences and for your sympathy, I deeply aprreciate it. How many months have you been on Prolia now? Your words are encouraging me to go on with the Evenity. It is monthly, so, at least it's not six months or a year with one dose.

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@lashu

Hi Kristie, thank you for sharing, it's good to hear that you had no reaction to your first injection. You said you do your own: injection? Did they show you how to do it? Do you do it at home? I have to go to a clinic for the nurse to do it.

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I am a retired RN so no issue. I go to the specialty pharmacy and pick up the Evenity and I do the injections at home. It is actually 2 injections and very easy to do.

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