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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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 11, 2023
In reply to @windyshores "YEs @gravity3 according to my docs, you can lock in gains from Evenity with alendronate just..." + (show)
@windyshores

YEs @gravity3 according to my docs, you can lock in gains from Evenity with alendronate just as you did after Forteo.

Did you have good results taking Evenity after forteo and alendronate? My docs won't allow it after Tymlos and say there is not enough data. Would love to know if it helped you.

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Good evening @windyshores .......Would you help me understand why your doctor won't allow Alendronate after Tymlos? That is what I ended up doing. And so far......no issues.

Thanks.
Chris

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1 reply
windyshores | @windyshores | Sep 11, 2023
In reply to @artscaping "Good evening @windyshores .......Would you help me understand why your doctor won't allow Alendronate after Tymlos?..." + (show)
@artscaping

Good evening @windyshores .......Would you help me understand why your doctor won't allow Alendronate after Tymlos? That is what I ended up doing. And so far......no issues.

Thanks.
Chris

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It is just that I have serious GERD. McCormick and my doc feel that alendronate is less potent to lock in gains but it is certainly adequate. To bypass GI I am doing a 20% dose of Reclast (kidney disease) with hydration. McCormick today suggested that I continue at 1 mg but doc wants me to tell him if I can handle 2mg after the test dose of 1 mg. You are fine with alendronate! Wish I could take it!

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1 reply
cloud60 | @cloud60 | Sep 13, 2023
In reply to @pami "My understanding is that Teriparatide goes through the kidneys. Prolia does not. I am on Prolia...." + (show)
@pami

My understanding is that Teriparatide goes through the kidneys. Prolia does not. I am on Prolia. (3 injections) This last injection I had a little muscle pain in my left shoulder for a few days after the injection but I don't know if that was from the Prolia or weights. After one year of Prolia, I gained .5 in my spine! (-4.1 to -3.6). I have two neighbors on Prolia that have no side effects. They have not had such remarkable results. I eat prunes, take collagen and get all my calcium from food and milk. I also take 200 mcg of K2 Mk7.

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How do you take collagen ? What brand?

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2 replies
loplady | @loplady | Sep 14, 2023
In reply to @cloud60 "How do you take collagen ? What brand?" + (show)
@cloud60

How do you take collagen ? What brand?

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I take Sparkle Wellness Osteo Boost and flavor my plain yogurt with it. I use just one scoop, 5 mg as that was what the studies used.

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1 reply
marteresa1 | @marteresa1 | Sep 14, 2023

My rheumatologist recommended me Reclast; is an infusion and the treatment is only two infusions, once a year. I had the first one last November with no side effect, the next one will be in two months.

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1 reply
candy209 | @candy209 | Sep 15, 2023
In reply to @marteresa1 "My rheumatologist recommended me Reclast; is an infusion and the treatment is only two infusions, once..." + (show)
@marteresa1

My rheumatologist recommended me Reclast; is an infusion and the treatment is only two infusions, once a year. I had the first one last November with no side effect, the next one will be in two months.

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That’s great to hear you had no side effects.

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sandrajhunt | @sandrajhunt | Sep 16, 2023

I completely understand the dilemma. I was diagnosed about your age and put my head in the sand for five years, just exercising and taking calcium. Then the doctor said i really needed to take meds and prescribed Boniva. I had a horrible reaction that sent me to the ER. I have been very reluctant to try any other drugs after reading the potential for horrendous side effects. It is now ten years later and i am still undecided. My mother had osteoporosis and lived a good drug free life to 96. So i still procrastinate. This is really hard.

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aliber | @aliber | Sep 16, 2023

I completely understand, I am in the same boat. I am 60, diagnosed recently with Osteoporosis with a -2.7 score. My GP has asked me to consider Prolia. I have not been referred to an Endocrinologist but I'm considering asking for a referral. I am very undecided on any treatments as I already have another health issue that I have ongoing treatment for and on medications plus meds for GERD. No medication comes without side effects and right now I'm trying to weigh the pros and cons of all of the meds discussed in this forum and continue to research. I exercise avidly and do weight training 3x per week. Anyway, the more we can learn from each other the better off we will all be. If and when I decide to start any meds I will certainly post to this forum. Good luck and take good care.

REPLY
madeleine40 | @madeleine40 | Sep 16, 2023

Hello Heyhey
I can totally relate to your message as I am at the same place. Not looking forward to any of these drugs, but none building seems to be in order.
Forteo was approved, but I cannot afford the $1500/month copay. Tymlos was not approved.
My GP now recommends Prolia, but I believe this is a different kind of drug and I’d rather build bone before locking it in. I also do not want to take a drug just because my insurance may cover it.
Could anyone tell me what Medicare drug supplement plan covers Tymlos ? I’d like to change plans in December to have more choices. I am in Southern California.
Per previous comments, it appears I should see an endocrinologist to get a second opinion.
Thank you for any feedback you may have.

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4 replies
alexxa | @alexxa | Sep 16, 2023
In reply to @madeleine40 "Hello Heyhey I can totally relate to your message as I am at the same place...." + (show)
@madeleine40

Hello Heyhey
I can totally relate to your message as I am at the same place. Not looking forward to any of these drugs, but none building seems to be in order.
Forteo was approved, but I cannot afford the $1500/month copay. Tymlos was not approved.
My GP now recommends Prolia, but I believe this is a different kind of drug and I’d rather build bone before locking it in. I also do not want to take a drug just because my insurance may cover it.
Could anyone tell me what Medicare drug supplement plan covers Tymlos ? I’d like to change plans in December to have more choices. I am in Southern California.
Per previous comments, it appears I should see an endocrinologist to get a second opinion.
Thank you for any feedback you may have.

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1500/mo copay?!
Unbelievable.

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