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.

@lashu

Thank you, greta63. I had not been taking enough vitamins until now, at 82 that's ridiculous! I wonder, what meds are you on, I'm sure you already mentioned that, I'm sorry I do not remember. My spine scores were negative 3.2. I don't remember the others, but they weren't as low as the spine. My last Dexa scan was in 2017 and at that time I was diagnosed with osteopenia. That should have been sufficient warning, but I did not realize it.

Jump to this post

One quick comment on my scores--I've been having them done for more than 12 years. About 4 years ago, the scanners in my health system were changed or updated so for a few years I couldn't get a good comparison. Now we finally have 2 different scans to compare.
At present I am on Prolia. I started on actinel way back around 2006 when I was diagnosed with osteoporosis and I did that for almost 3 years. I had side effects like leg and back pain and dry eyes. I stopped actinel and the side effects went away so I just went without any meds. I thought I would be OK. Every Dr. I saw wanted to put me on Forteo but I was concerned about future side effects. Along the way I discovered I had one or two vertebral fractures then another in 2014. That's when I knew I had to be on something--Forteo was strongly advised since I needed to build bone. I worried but what were my options? Maybe side effects or most likely more fractures, pain, and disability. I could only take Forteo for two years. So now I'm on Prolia since coming off Forteo. I guess I'm lucky that I don't notice any side effects with it. I also take calcium and vitamin d which the Dr. monitors to make sure my levels stay in a safe range. I am under the care of an excellent rheumatologist.
I had an unfortunate accident 5 years ago that fractured my femur. I believe it would have been far worse if I had not been on the meds. It reinforced my belief that I needed these meds regardless of what I had thought before. Last winter I passed out for some reason and fell. One of the drs. in the hospital said that being on Prolia may have prevented more broken bones. Who knows? I have other meds that I take for various health issues. I wish I didn't have to take them but at 78 I have come to accept this. I have aches and pains but I'm still relatively healthy. No one said getting old would be easy. 🙂 No complaints.

REPLY
@greta63

One quick comment on my scores--I've been having them done for more than 12 years. About 4 years ago, the scanners in my health system were changed or updated so for a few years I couldn't get a good comparison. Now we finally have 2 different scans to compare.
At present I am on Prolia. I started on actinel way back around 2006 when I was diagnosed with osteoporosis and I did that for almost 3 years. I had side effects like leg and back pain and dry eyes. I stopped actinel and the side effects went away so I just went without any meds. I thought I would be OK. Every Dr. I saw wanted to put me on Forteo but I was concerned about future side effects. Along the way I discovered I had one or two vertebral fractures then another in 2014. That's when I knew I had to be on something--Forteo was strongly advised since I needed to build bone. I worried but what were my options? Maybe side effects or most likely more fractures, pain, and disability. I could only take Forteo for two years. So now I'm on Prolia since coming off Forteo. I guess I'm lucky that I don't notice any side effects with it. I also take calcium and vitamin d which the Dr. monitors to make sure my levels stay in a safe range. I am under the care of an excellent rheumatologist.
I had an unfortunate accident 5 years ago that fractured my femur. I believe it would have been far worse if I had not been on the meds. It reinforced my belief that I needed these meds regardless of what I had thought before. Last winter I passed out for some reason and fell. One of the drs. in the hospital said that being on Prolia may have prevented more broken bones. Who knows? I have other meds that I take for various health issues. I wish I didn't have to take them but at 78 I have come to accept this. I have aches and pains but I'm still relatively healthy. No one said getting old would be easy. 🙂 No complaints.

Jump to this post

Hi greta, I am honored and grateful for the time and thought you have given to my situation. Thank you so much.
As I try to meet the standards set for my self imposed efforts to rebuild my bones' weaknesses/defects of osteoporosis, doubts seem to be outpacing successes. Sometimes when I move I do feel the weakness in vertebrae, and at 82 perhaps I need to recognize limits to my own capacities for self improvement.
I will ask my endocrinologist for patience as I question the efficiency of these alternate pharmaceuticals for my condition.

REPLY
@lashu

Hi greta, I am honored and grateful for the time and thought you have given to my situation. Thank you so much.
As I try to meet the standards set for my self imposed efforts to rebuild my bones' weaknesses/defects of osteoporosis, doubts seem to be outpacing successes. Sometimes when I move I do feel the weakness in vertebrae, and at 82 perhaps I need to recognize limits to my own capacities for self improvement.
I will ask my endocrinologist for patience as I question the efficiency of these alternate pharmaceuticals for my condition.

Jump to this post

Thank you for the kind words. I think we all need to come to our decisions in our own time. They're not wrong or right. They are just yours. Good luck in what you decide.

REPLY

Is it possible to improve your DEXA numbers with exercise and healthy eating with supplements. I asked my doctor and the question was ignored. She wants me on Evenity?????

Thank all of you for sharing. Helps me to feel I am not alone in this experience.

Blessings.

REPLY
@bbones2023

Is it possible to improve your DEXA numbers with exercise and healthy eating with supplements. I asked my doctor and the question was ignored. She wants me on Evenity?????

Thank all of you for sharing. Helps me to feel I am not alone in this experience.

Blessings.

Jump to this post

@bbones2023 I believe it is difficult to improve DEXA with diet and exercise after menopause. Maybe that is a good strategy for osteopenia and even early menopause.

If you want a med that is adjustable I did Tymlos and started at a low dose and ramped up to let my body adjust. I almost never did a full dose and still had excellent gains.

REPLY

Thank you for letting me know about your experience.
I will check it out.
You give me hope.🙏

REPLY
@lashu

Hi greta, I am honored and grateful for the time and thought you have given to my situation. Thank you so much.
As I try to meet the standards set for my self imposed efforts to rebuild my bones' weaknesses/defects of osteoporosis, doubts seem to be outpacing successes. Sometimes when I move I do feel the weakness in vertebrae, and at 82 perhaps I need to recognize limits to my own capacities for self improvement.
I will ask my endocrinologist for patience as I question the efficiency of these alternate pharmaceuticals for my condition.

Jump to this post

Now at 75 I am leaning on something that my physician asst. said, "just live!". It is so helpful when thinking about aging and all of the ways that my body tells me that no one gets out alive.😉

REPLY

Thank you--your positive outlook is very encouraging!

REPLY

I have severe Osteoporosis and this what I’ve learned:
Don’t wait too long to make your decision. Why? Because the solution you choose may not work for you and you’ll have to go onto the next option. That is what happened with me. I started with Tymlos and ended up on Prolia due to side trouble some side effects.

Also, make sure your DEXA scan results are accurate. The DEXA scan I had last year, not at a Mayo facility, was incorrect. Although the radiologist noted a ‘Statistically significant decrease’ on one of my results. No one goes from -4.7 to -0.4 in one year. My PCP did not notice this.
Good luck.

REPLY

I have been told by my doctor to take Reclast after I've had Prolia (which gave me horrible side effects) and Evenity (no problem). I am extremely concerned about a one year shot because if you have side effects you are suck with those for one year. I'm not sure I want to give up one year of my life dealing with side effects. I'm prone to hair loss and can't take any drug that might make it worse.
What side effects have others had on Reclast and is there an alternative as I've had everything else already including forteo?

REPLY
Please sign in or register to post a reply.