1. < Osteoporosis & Bone Health

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.

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danboys | @danboys | May 22, 2022

I'm on prolia, no side effects. I understand why you are hesitant about evenity especially if your doctors are getting a kickback from the company. Do what you feel is best for you and don't feel pressured into doing something you don't feel comfortable doing. Its about you not them.

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callalloo | @callalloo | May 22, 2022
In reply to @csday "Any bone building program whether medical or physical takes two years to rebuild bone significantly. See..." + (show)
@csday

Any bone building program whether medical or physical takes two years to rebuild bone significantly. See if you can find a clinic that uses Echolight sonogram bone density which measures bone strength as well as bone density. (I found one in Asheville NC)
Better Bones with Dr Susan Brown offers a list of tests to request from your doctor to determine why you are losing bone. My endocrinologist discovered I had a kidney condition that was spilling calcium and a simple medication is treating that. I requested physical therapy sessions and now have an exercise program designed to build bone. Hope these ideas help. To motivate me I have a card by my bed that says “Forteo injections every night or do your exercises?”

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I live half the year in Asheville. Which facility uses the Echolight? Thanks.

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callalloo | @callalloo | May 22, 2022
In reply to @csday "Any bone building program whether medical or physical takes two years to rebuild bone significantly. See..." + (show)
@csday

Any bone building program whether medical or physical takes two years to rebuild bone significantly. See if you can find a clinic that uses Echolight sonogram bone density which measures bone strength as well as bone density. (I found one in Asheville NC)
Better Bones with Dr Susan Brown offers a list of tests to request from your doctor to determine why you are losing bone. My endocrinologist discovered I had a kidney condition that was spilling calcium and a simple medication is treating that. I requested physical therapy sessions and now have an exercise program designed to build bone. Hope these ideas help. To motivate me I have a card by my bed that says “Forteo injections every night or do your exercises?”

Jump to this post

While I'm at it, as I live in Asheville half the year and know zero doctors there, can I ask who your endocrinologist is? I've so far been taking care of health stuff through the south Florida Cleveland Clinic but that's not a great long-term plan.

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1 reply
callalloo | @callalloo | May 22, 2022

For those who want to see if their doctors are in fact receiving income from drug or equipment suppliers, the non-profit Pro Publica "Dollars for Docs" website lists the recorded data through 2018. Of course secret payoffs aren't listed. It needs to be updated but I haven't found a better site yet.

If you see amounts listed, you can look at the type. I disregard insignificant amounts for travel and meals as it seems fair to me that doctors' time is spent at seminars and such. But the large payouts of $200,000+ for psychiatrists seem very questionable to me. And cosmetic surgeons are being paid a lot to use certain procedures like the disastrous Ultherapy and questionable Coolsculpt. Caveat emptor.

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csday | @csday | May 23, 2022
In reply to @callalloo "While I'm at it, as I live in Asheville half the year and know zero doctors..." + (show)
@callalloo

While I'm at it, as I live in Asheville half the year and know zero doctors there, can I ask who your endocrinologist is? I've so far been taking care of health stuff through the south Florida Cleveland Clinic but that's not a great long-term plan.

Jump to this post

Echolight:
StrengthX LLC
1340C Patton Ave
Asheville, NC 28806
828-505-7200

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2 replies
callalloo | @callalloo | May 24, 2022
In reply to @csday "Echolight: StrengthX LLC 1340C Patton Ave Asheville, NC 28806 828-505-7200" + (show)
@csday

Echolight:
StrengthX LLC
1340C Patton Ave
Asheville, NC 28806
828-505-7200

Jump to this post

Great, thanks! I'm go back to Asheville in a few weeks and will look then up.

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redhead1226 | @readhead1226 | May 24, 2022
In reply to @ceciliamarypatriciafrancis "I started Evenity in June 2021 and have just completed the course and had a bone..." + (show)
@ceciliamarypatriciafrancis

I started Evenity in June 2021 and have just completed the course and had a bone density test. Evenity really helped. I had undiagnosed celiac disease with no symptoms that was only discovered when I was 61 years old. This is a reason why I had severe osteoporosis. For 20 years I was taking Actonel, Fosomax and finally Prolia with only a slight improvement in my hips; none in my spine. My one Prolia injection had an unusual side effect, a messed up sense of taste, so I never took it again. Finally my primary provider sent me to a Enterologist. I was put on Evenity after getting the OK from my dentist to assure I had no dental problems. I wasn't aware of other side effects. I have now gone from severe osteoporosis to a slight reading just above osteopenia, so the treatment was a great success. I'm delighted; my only possible side effect to date was a rash after my eighth treatment (I have a mild sulfa allergy). I was the first patient in the practice to finish the year-long course. It was expensive ($420 co-pay per month), but I took a hard fall a few weeks ago and had a really banged-up swollen and bloody knee and a swollen, bruised ankle, so no broken bones was worth the cost.

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Would you be kind enough to post your before and after t-scores? I just finished 1 year of Evenity and I am waiting for my DEXA scan to see how much it has helped. Congrats on no broken bones!!

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1 reply
tnldaniel | @tnldaniel | May 24, 2022

I increased my bone density by eating lots of Swiss cheese and calcium fortified bread each day. Count the milligrams to make sure you are taking 1200 mg each day.

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ceciliamarypatriciafrancis | @ceciliamarypatriciafrancis | May 25, 2022
In reply to @readhead1226 "Would you be kind enough to post your before and after t-scores? I just finished 1..." + (show)
@readhead1226

Would you be kind enough to post your before and after t-scores? I just finished 1 year of Evenity and I am waiting for my DEXA scan to see how much it has helped. Congrats on no broken bones!!

Jump to this post

When I had my first bone density in 2000, my spine was -3.6 and my hips -3.5 Over the past 23 years with fosomaxx and actonel, my hip scores improved some, down to -3.0. My spine never improved, but didn't get worse. My new density test this month showed a major improvement in my spine -2.7 and my hips -2.6. That's still osteoporosis, but so much better. From what I've been reading, improvement seems to be really good in the spine. Yale is my local hospital, so the doctors available to my family have been great and I don't question their treatments. As I noted, my only possible side effect was a minor rash that I think was due to my mild allergy to sulfa.

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3 replies
redhead1226 | @readhead1226 | May 25, 2022
In reply to @ceciliamarypatriciafrancis "When I had my first bone density in 2000, my spine was -3.6 and my hips..." + (show)
@ceciliamarypatriciafrancis

When I had my first bone density in 2000, my spine was -3.6 and my hips -3.5 Over the past 23 years with fosomaxx and actonel, my hip scores improved some, down to -3.0. My spine never improved, but didn't get worse. My new density test this month showed a major improvement in my spine -2.7 and my hips -2.6. That's still osteoporosis, but so much better. From what I've been reading, improvement seems to be really good in the spine. Yale is my local hospital, so the doctors available to my family have been great and I don't question their treatments. As I noted, my only possible side effect was a minor rash that I think was due to my mild allergy to sulfa.

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Thank you so much. Im hoping for better scores as well. Mine are similar to yours. Ill post as well next month when I have my new DEXA. What will you use now after Evenity?

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