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.

@leslie2121

What does your doctor recommend for follow up to Evenity?
I am getting #9 Evenity injections this month - pondering the follow up drug to maintain the gains. My endocrinologist is recommending Prolia after my 12th month. I’ve been told it continues to increase your bone density for another year, when followed up with the Prolia. Both monoclonal antibody technology- very cutting edge stuff!
Since you can’t stop Prolia ( wind up worse off) it’s giving me pause…
My endocrinologist says if you stop Prolia you have to take something else.
So I still have lots of questions.
I’m in good health and seem to tolerating Evenity fine- though I do feel a little weird day 5-10 after the shots each month. Kinda achy, head/skull seems sensitive- hard to explain.
But goes away.

Jump to this post

Evenity and Prolia are both made by Amgen so the website suggests following Evenity with Prolia 🙂

I am on Tymlos. My doc wants to do a partial dose of Reclast (well-hydrated, and slow infusion) to see how I react. I then might do a stronger dose. He says that with monitoring I could take breaks from meds, but with Prolia this would not be possible.

I would think that if I do Evenity after Tymlos, a possibility, I would follow with Reclast.

There are other biphosphonate options. One poster suggested the shorter acting alendronate if the plan might include going back on a bone-builder, because the anti-resorptives can interfere with them.

The other way of thinking would be to do the longer acting Reclast, which stays in your system and might enable you to take breaks.

I think it depends on our DEXA scores after we finish our current med.

REPLY

Has anyone suggested Boniva? My Gyn suggested that I start on it. The Bone density test showed at 15% hip fracture in 10 years

REPLY
@leale

Has anyone suggested Boniva? My Gyn suggested that I start on it. The Bone density test showed at 15% hip fracture in 10 years

Jump to this post

@leale what were your actual scores?

REPLY

Has anyone read or researched that bone density declines at menopause then stabilizes.just wondering if that is true ..mine dexa dropped but has remained the same for the last four years...no meds just supplements

REPLY
@bettersleep68

Has anyone read or researched that bone density declines at menopause then stabilizes.just wondering if that is true ..mine dexa dropped but has remained the same for the last four years...no meds just supplements

Jump to this post

I keep a chart of my DEXA's since 2001. I had a steep drop after menopause and then a continued drop but at a much lower rate. I would add that I was on a cancer drop that confuses the rates for me. My cancer med eliminated adrenal estrogen post-menopause and again I had a steep drop in 2015 followed by much lower rate of bone density loss thereafter.

If yours has remained the same, that is great. What supplements are you taking? If any contain strontium, that could make things look better than they are on the DEXA. I take calcium citrate, magnesium, K2 (MK-7), 2-3,000 units D3, folate and B complex, walk and do tai chi. Would like to read what else you might be taking - or doing- to achieve that stability.

REPLY

This is to all women who have said they have always taken care of their bodies, exercised etc. what did women do before Dexa Scans? Seems to be an awful lot of us have osteoporosis. Why the epidemic? Prolia was recommended for me as well because i can’t tolerate bisphosphonates. But if i have to follow up with something else after Prolia i end up taking something I can’t tolerate.
I haven’t met a doctor yet that is older and on these drugs. They hardly think before saying i recommend Prolia. I haven’t done anything. I am exercising and doing weights to build my muscle strength. Why take something that will put me in a worse place if i don't continue another drug?????

REPLY
@vgen

This is to all women who have said they have always taken care of their bodies, exercised etc. what did women do before Dexa Scans? Seems to be an awful lot of us have osteoporosis. Why the epidemic? Prolia was recommended for me as well because i can’t tolerate bisphosphonates. But if i have to follow up with something else after Prolia i end up taking something I can’t tolerate.
I haven’t met a doctor yet that is older and on these drugs. They hardly think before saying i recommend Prolia. I haven’t done anything. I am exercising and doing weights to build my muscle strength. Why take something that will put me in a worse place if i don't continue another drug?????

Jump to this post

I feel the same way but I’m about to take Evenity. That is one of my major hesitancies. I actually need surgery but can’t have it because of the condition of my spine. I really just don’t know what to do

REPLY

I think the "epidemic" is partly due to the fact that we all live a lot longer.

In my mother's assisted living facility, I see a lot of women with life-threatening fractures as well as dowager's humps, the curved spine and bent over posture from vertebral fractures. They did not have any meds to take.

There was a period, I think, when docs overmedicated osteopenia, but that may have calmed down.

I think Forteo, Tymlos and Evenity are good meds for those of us with high fracture risk. I have been told I could maybe have one Reclast infusion to lock gains in and then take a break. I am not going near Prolia because you cannot take a break without something else to follow (and my doc feels the same).

REPLY
@windyshores

I think the "epidemic" is partly due to the fact that we all live a lot longer.

In my mother's assisted living facility, I see a lot of women with life-threatening fractures as well as dowager's humps, the curved spine and bent over posture from vertebral fractures. They did not have any meds to take.

There was a period, I think, when docs overmedicated osteopenia, but that may have calmed down.

I think Forteo, Tymlos and Evenity are good meds for those of us with high fracture risk. I have been told I could maybe have one Reclast infusion to lock gains in and then take a break. I am not going near Prolia because you cannot take a break without something else to follow (and my doc feels the same).

Jump to this post

I will do more research on Forteo, Tymlos and Evenity.
I don’t want to use Prolia because of follow up. Thanks for some insight

REPLY
@windyshores

@leale what were your actual scores?

Jump to this post

Mine dropped enough that he wants me on the meds. I am going to see what my d level is. Waiting for results

REPLY
Please sign in or register to post a reply.