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.

@dgm123s

Hello. I am going through the same thing. I am at a negative 3.4 in my spine a negative 2.6 in my hip. I am 67 years old and the endocrinologist also suggested evenity
I've done a bit of research and even though it is relatively new I prefer getting a shot once a month for a year opposed to giving myself a shot daily for 2 years
I know a couple of people who were on for forteo and their teeth started falling out
All of these drugs have severe side effects but it doesn't mean that we will be getting all of them. It appears that our choices are the lesser of the evils so I believe if my insurance or the infusion center covers a little bit more than my thousand dollar deductible then I will be trying evenity.

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Hello dgm123,

My situation is very similar to yours. I am 67. My t-scores are -3.3 for the spine and -3.0 for total hip. My rheumatologist has recommended Evenity.

I have declined medications before. I am considering trying Evenity.

I am concerned about side-effects. I am also concerned that the drug
might not work for me.

I also do not want to do daily injections for 2 years.

Please let me know if you decide to try it and if you have side-effects.

If you have anything you would like to ask me, please do.

Respectfully,
Tina R

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@susanop

Thanks for this. Tell your friend that I did far more than that in terms of exercise, as well as the D3 and calcium, and it still wasn't enough to turn the tide in my bones' favor. Too many factors working against us! I really appreciate your time and the info. Best to you both.

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Hi @susanop. I was following your discussion with @chocoholic. I just started taking alendronate for osteoporosis. The diagnosis surprised me as I was an avid exerciser for years. I was hit with an autoimmune disorder when we were in COVID lockdown. The pain was incredible, I still managed a daily hour-long walk, but that was it for the day. I could barely move. My mother and my two aunts had osteoporosis so family history is there, as well as slight build, etc. I'm on a steroid now to manage my autoimmune disorder = more bad news for the bones. Anyway, I've been researching appropriate exercises, especially the work of Sara Meeks and Carol Michaels. You can google them. Some of Sara Meeks's exercises are posted online, and they are subtle. The wrong kinds of exercises can do more harm than good to those of us with osteoporosis. I also read about Whole Body Vibration exercise for osteoporosis and purchased a vibration plate exerciser online. The studies I read about that improved bone density had participants on the machines 2x a day for 15 minutes, 5 days a week, for a year. I watch tv while I stand on the vibration plate and use the automatic programs the manufacturer said improve bone density (let's hope!). It's not a hardship, but as with everything else, whole body vibration, at the wrong intensity, might not be good for those with frail bones. I'd like to improve bone density and get off the alendronate. Also, bone density is just one indicator of bone health, from what I've read, and it refers to the quantity of bone, not the quality (that's from Sara Meeks). I've been on a plant-based diet for a number of years, but pretty casual about calcium intake. Now, I increased protein and also take calcium, magnesium, Vitamin D, Vitamin K, Boron, L. Reuteri (a probiotic) and plan to add silica soon. References: "Whole-body vibration exercise in postmenopausal osteoporosis, Magdalena Weber-Rajek, et al, "The Effectiveness of Physical Exercise on Bone Density in Osteoporotic Patients", Maria Grazia Benedetti, et al, and "Essential Nutrients for Bone Health and a Review of their Availability in the Average North American Diet", Charles T. Price - Conflict of interest - The authors are shareholders in theInstitute for Better Bone Health, LLC, a nutritional supplement company. Anyway, good luck, and I hope this helps.

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@tinar

Hello dgm123,

My situation is very similar to yours. I am 67. My t-scores are -3.3 for the spine and -3.0 for total hip. My rheumatologist has recommended Evenity.

I have declined medications before. I am considering trying Evenity.

I am concerned about side-effects. I am also concerned that the drug
might not work for me.

I also do not want to do daily injections for 2 years.

Please let me know if you decide to try it and if you have side-effects.

If you have anything you would like to ask me, please do.

Respectfully,
Tina R

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Evenity is not daily injections but done once a month at the MD office/infusion center. I was going to try Evenity but am doing Tymlos first. Tymlos is daily self-injection. Evenity would probably be a good approach if you don't want to do the daily shots and people don't generally complain about side effects (with exceptions of course).

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@windyshores

Evenity is not daily injections but done once a month at the MD office/infusion center. I was going to try Evenity but am doing Tymlos first. Tymlos is daily self-injection. Evenity would probably be a good approach if you don't want to do the daily shots and people don't generally complain about side effects (with exceptions of course).

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Hi WindyShores,

thank-you for your reply.

Tina R

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@tinar

Hello dgm123,

My situation is very similar to yours. I am 67. My t-scores are -3.3 for the spine and -3.0 for total hip. My rheumatologist has recommended Evenity.

I have declined medications before. I am considering trying Evenity.

I am concerned about side-effects. I am also concerned that the drug
might not work for me.

I also do not want to do daily injections for 2 years.

Please let me know if you decide to try it and if you have side-effects.

If you have anything you would like to ask me, please do.

Respectfully,
Tina R

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Hi Tina. Still waiting to hear back from the doctor regarding any assistance I can have with the cost
But as I said I need to do something to prevent fractures that may be deadly and I do not want to take an injection daily so I believe that evenity is my best choice if I can afford it that is. I will keep in touch with you once I try it and tell you how I make out.

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@dgm123s

Hi Tina. Still waiting to hear back from the doctor regarding any assistance I can have with the cost
But as I said I need to do something to prevent fractures that may be deadly and I do not want to take an injection daily so I believe that evenity is my best choice if I can afford it that is. I will keep in touch with you once I try it and tell you how I make out.

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@dgm123s I completely understand your reluctance to do a daily injection but it honestly is not a big deal at all. Most nights the shot is painless and the whole thing takes about a minute.

Just something to consider if you are not a candidate for evenity.
JK

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@contentandwell

@dgm123s I completely understand your reluctance to do a daily injection but it honestly is not a big deal at all. Most nights the shot is painless and the whole thing takes about a minute.

Just something to consider if you are not a candidate for evenity.
JK

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why did you decide to medicate vs. natural meds via diet exercise

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@she1

why did you decide to medicate vs. natural meds via diet exercise

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@she1 I went over a year trying all of the natural things - exercise, diet, vitamins, etc. In that time my DEXA scores got worse. I couldn't afford to have them get even worse. My osteoporosis was diagnosed after having a very minor fall that resulted in a minimally displaced fracture of the trochanteric femur. I sure didn't want another fracture if I could avoid it.
JK

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@contentandwell

@dgm123s I completely understand your reluctance to do a daily injection but it honestly is not a big deal at all. Most nights the shot is painless and the whole thing takes about a minute.

Just something to consider if you are not a candidate for evenity.
JK

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Thank you! Which daily shot are you taking and are you having any side effects?

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@dgm123s

Hi Tina. Still waiting to hear back from the doctor regarding any assistance I can have with the cost
But as I said I need to do something to prevent fractures that may be deadly and I do not want to take an injection daily so I believe that evenity is my best choice if I can afford it that is. I will keep in touch with you once I try it and tell you how I make out.

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Call Amgen. Docs don't know much about financial assistance, but hope yours does. Amgen can refer you to a foundation for help with cost. Your health insurance may also have ideas. Our state also has a program to help with meds.

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