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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I am 79 and just started Evenity. Have had 4 shots. Am so thankful I have no heart trouble and able to take it. After 1 year I will switch to Prolea. The injections are painful but worth it. My 2 daughters are almost 50. I told them to get bone density test when they are 55. Have terrible history of osteoporosis on both sides of my family. Do not hesitate!
I am having no lasting side effects. Just some swelling at the injection sites for a couple of days. I take benedryl day of shot.

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@maselber321

I am 79 and just started Evenity. Have had 4 shots. Am so thankful I have no heart trouble and able to take it. After 1 year I will switch to Prolea. The injections are painful but worth it. My 2 daughters are almost 50. I told them to get bone density test when they are 55. Have terrible history of osteoporosis on both sides of my family. Do not hesitate!
I am having no lasting side effects. Just some swelling at the injection sites for a couple of days. I take benedryl day of shot.

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Did your doc discuss Reclast as an option after Evenity? Curious why Prolia!

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I really resonate with your post and inner turmoil. You've stated all the logical reservations about jumping into a particular treatment. We (the consumer) are supposed to trust the provider as they are the expert. It is normal to wonder at whose convenience is the recommendation and is there any kickback for them when recommending a certain treatment option. The last thing is that once something goes into your body, that's that.. you are on that particular journey. Debilitating and incapacitating fractures will ruin us if we sustain them. So we must do something. Do your research. Look at risk v benefit for YOU, know all anabolics require a follow up drug to "lock in" gains. My thoughts are with you as you make a decision that is right for you.

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@sonoranwoman

I really resonate with your post and inner turmoil. You've stated all the logical reservations about jumping into a particular treatment. We (the consumer) are supposed to trust the provider as they are the expert. It is normal to wonder at whose convenience is the recommendation and is there any kickback for them when recommending a certain treatment option. The last thing is that once something goes into your body, that's that.. you are on that particular journey. Debilitating and incapacitating fractures will ruin us if we sustain them. So we must do something. Do your research. Look at risk v benefit for YOU, know all anabolics require a follow up drug to "lock in" gains. My thoughts are with you as you make a decision that is right for you.

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Welcome @sonoranwoman, You are so right about needing to be informed as a consumer of healthcare and learn about our conditions. This can help us become a better advocate for our own healthcare. I'm wondering if you have heard about the Patient Revolution website? Lots of good information on the site including some tools for discussions with your doctor.

The Patient Revolution - https://patientrevolution.org/

Do you mind sharing what brought you to Connect, were you looking to get a question answered?

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Hi John, I did not know about the Patient Revolution site, I will look through it in detail later. I am on this site because of a dx of both osteoporosis and MC. I am not looking to get a specific question answered at the moment. I do work FT in healthcare so I understand first hand the importance of including the patient in healthcare decision-making from the onset of any dx. Ultimately, it is their decision, not the provider's. Thank you for reaching out!

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@sonoranwoman

Hi John, I did not know about the Patient Revolution site, I will look through it in detail later. I am on this site because of a dx of both osteoporosis and MC. I am not looking to get a specific question answered at the moment. I do work FT in healthcare so I understand first hand the importance of including the patient in healthcare decision-making from the onset of any dx. Ultimately, it is their decision, not the provider's. Thank you for reaching out!

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@sonoranwoman According to my endocrinologist and the chiropractor I saw, who specializes in osteoporosis, we do not necessarily have to stay on a biphosphonate like Reclast after finishing an anabolic. Bone density and turnover can be monitored and we can take breaks or, after a first post-anabolic dose, try a natural approach for maintenance, again, with monitoring. My doc also said that he would try a partial dose of Reclast for me.

Prolia, on the other hand, cannot just be stopped and needs a follow-up med.

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The article linked below includes several doctors looking at the myriad current drug options for dealing with osteoporosis and also notes that the sequence of drugs should be considered. It's a good overview of what the current choices are for those contemplating which drug(s) to consider and ask their doctors about.

May 19, 2022

"Treatment sequence key for optimal management of osteoporosis"
https://www.healio.com/news/endocrinology/20220506/treatment-sequence-key-for-optimal-management-of-osteoporosis

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@ceciliamarypatriciafrancis

That's the rub...when I started last June I was told "this is the only bone density med you'll ever have to take again." Since Evenity was new, I guess that was the thinking. Now I've been told that in a year I will have to have an infusion of ?; I hear infusion and I think chemo. That may be incorrect, but I hear that there's some chemo in several bone medicines, and I just don't want that. ..so much for listening to doctors. We seem to have agreed that weekly Actonal is what I'll be taking, since I had it for years before without any issues.

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Infusion sounds familiar - I had a Reclast infusion for the 1st time. I have never been in drugs, 12 hrs nothing felt great, 24 hrs hrs. it had me understand the covers shaking and in a cold sweat for 2 days, aches pains, I lost 6lbs in 4 days, eye pain that sent me to the emergency room and then had all kinds of symptoms off and on this year. I am due for another one this year - NOT !!! I will see what the bone density results are. I know everyone has their own experience with reclast but I had to share mine. I am healthy I workout 5 days a week, developed osteoporosis from acid blockers and when I was told I had osteopenia I didn't do reclast per my doctors suggestions 2 years later I had osteoporosis. I don't know what I will take next ?

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@callalloo

The article linked below includes several doctors looking at the myriad current drug options for dealing with osteoporosis and also notes that the sequence of drugs should be considered. It's a good overview of what the current choices are for those contemplating which drug(s) to consider and ask their doctors about.

May 19, 2022

"Treatment sequence key for optimal management of osteoporosis"
https://www.healio.com/news/endocrinology/20220506/treatment-sequence-key-for-optimal-management-of-osteoporosis

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Great article which says what we have been discussing for some time: that anabolics work better if they are the first treatment. The article also mentions that insurance policies need to change, because many require failing at an anti-resorptive first, but those meds "blunt" the effects of anabolics.

PCP's need to be educated because two PCP's have expressed surprise that I am on Tymlos as my first medication. Both said "But that is not first line treatment."

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@windyshores

Did your doc discuss Reclast as an option after Evenity? Curious why Prolia!

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Saw my dr yesterday. Cannot take Reclast because I was on Fossmax for several years.

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