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.

lily777 | @lily777 | Oct 7, 2023

In reply to @blblbl27 "Thank you" + (show)

Thank you for the information.

margoduncan | @margoduncan | Oct 7, 2023

In reply to @blblbl27 "You sound like me I had the same experience when I talked to a specialist Evenity..." + (show)

I’ve been on this for a year now and I also took 2 years ago then I took a break. I can’t say I seen any side effects but what I can tell you most times I took it right but did not read the instruction well about what to take it with. I did not realize other liquids is not good to take with it. That it has to be only water. So I just started on my second year we will see where I stand the first year did not stop my bone loss. But after reading a lot in here I’m going to try and get most with food instead of calcium pills. My sister was explaining she takes k2 with vitamin Ed and that calcium pills builds the outside of the bones the inside still hollow. So this is what I’m going to try and exercise walking and light weights when I can. Hope this helps

blblbl27 | @blblbl27 | Oct 7, 2023

Thanks for sharing your experience

janflute | @janflute | Oct 8, 2023

Please let me know how you do with your Reclast infusion because I am scheduled to get one in July. I wish you all of the best. Remember that we usually worry about all of the wrong things in life, as we look back on it, because we really do not know what our future will be. Your positive attitude will be the most important thing.

kaa1 | @kaa1 | Oct 8, 2023

I too am struggling with the treatment decision. I’ve had osteoporosis for about 10 years. Have done supppements and chinese medicine only. I’m 62 years old. My last scan showed -3.8 in the lumbar and -2.4 in the hip and femur , doctor is recommending Tymlos for two years followed by Prolia, ongoing. My biggest concern is hearing that if I have to discontinue the Prolia (maybe I have bad side effects or something), that I will have a rapid decrease in the bone density, I’m concerned about this treatment being a life sentence. I’m afraid of not doing the treatment, of course because of the possibility of spontaneous fractures, etc. Any thoughts and experience welcome. Thank you.

margoduncan | @margoduncan | Oct 8, 2023

I am like you on the use of Prolia I have it on hold for now I will do more research on it and other ways. Right now im 68 and going to try with food and calcium supplement but will work hard on the food part plus exercise see what happens. I hate to be in a worst boat than I am now going on prolia I cannot see the reason to do it if it has so many side effects I hear even in vision and my vision way too important to risk. I feel I will be that one with the effects. Hope we both find a way out of this Hugs

tucsonnancy | @tucsonnancy | Oct 8, 2023

When I had scores like yours 7 years ago, I decided on Forteo. I had no side effects and I improved a lot in the 2 years I took it. Unfortunately, there were no good options for me after the 2 years were up (insurance wouldn't cover Prolia), and I had other serious health issues to deal with. When I was tested again about 9 months ago, I has lost all the gains I had made on Forteo. The good news is I was cleared for Tymlos. I have no side effects, and I'm hoping it works. This is a really frustrating condition with no truly acceptable treatment options. I think now I'm on Medicare, I'll be able to get Prolia when the 2 years are up.

windyshores | @windyshores | Oct 8, 2023

In reply to @kaa1 "I too am struggling with the treatment decision. I’ve had osteoporosis for about 10 years. Have..." + (show)

@kaa1 you can do Reclast or alendronate after Tymlos. If you do Reclast, you may be able to take a medication break depending on monitoring with blood tests.

artisan3 | @artisan3 | Oct 9, 2023

In reply to @kaa1 "I too am struggling with the treatment decision. I’ve had osteoporosis for about 10 years. Have..." + (show)

There is an option of Reclast instead of Prolia. It is a yearly IV infusion. I told my Dr. I would not do Prolia because I’m not committing to a lifetime of this drug.
I haven’t started anything yet, but probably Evenity to start. Waiting to hear about co-pays first, before I commit. Wishing you luck with your decision. This group has given me a lot of very valuable info.

Chris Trout, Volunteer Mentor | @artscaping | Oct 10, 2023

In reply to @kaa1 "I too am struggling with the treatment decision. I’ve had osteoporosis for about 10 years. Have..." + (show)

Good evening @kaa1 and welcome to Connect. If I understand your post, you are trying to make a difficult treatment decision to increase your bone growth and then protect what you build. My endocrinologist recommended the Tymlos option. It worked very well. I had no side effects during the two years of daily injections.
I was also referred to Prolia and received two infusions. That's when my body said no more and began to react. I even kept a calendar of the days that my jaw complained. I found out that my body doesn't do well with major infusions every six months or so.
On the anniversary date of the Prolia, after replacing my provider, he replaced the Prolia with Alendronate.....a safe and sure medication for me that is taken every Monday morning. It has been 18 months and I have survived the weekly capsule very well. In a few more months I will be able to get the two-year Dexa Scan results.

I notice that having side effects from Prolia is your major concern. You can transition like I did without losing any of your new bone development.

Does this make sense the way I presented it?

May you be safe, protected, and free from inner and outer harm.
Chris