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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susanfalcon52 | @susanfalcon52 | Sep 18, 2023
In reply to @shortnancy "I have traditional Medicare with a Part D drug plan. The Part D drug plan denied..." + (show)
@shortnancy

I have traditional Medicare with a Part D drug plan.
The Part D drug plan denied Evenity coverage. I appealed the decision twice and it was still denied. Can you explain if your doctor orders the Evenity and bills it as part of the treatment plan to Medicare Part B?
I am currently on Forteo with some positive results but have been on it over two years. It was authorized for a third year for some people. I have no side effects. The Part D drug plan picks up most of the costs after the deductible is met which still leaves me with covering alot of the costs. Was on Bisphosphates for 15 years with increasingly worse bone density.
Any advice re getting Evenity covered would be much appreciated.
Nancy

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If you are getting the shots at an infusion center or a hospital, Part B pays for it. Part B has been paying mine for 4 months. The only way Medicare Part B would deny it would be if they thought your osteoporosis wasn't bad enough.

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1 reply
meganstpaulmn | @meganstpaulmn | Sep 18, 2023

I was diagnosed with severe osteoporosis at age 67. I am not small boned. Love dairy products and have eaten and drank them my entire life. No history of high blood pressure, diabetes, no weight issues, very active including strength and aerobic exercise.
I started on Fosamax and was coming to the end in year five when I had a severe vertebra fracture C7 in back. This happened without trauma.
I just got out of a back brace that I wore all summer. Waiting to see an
endocrinologist (very long waits for care where I live) and I have no idea what to do. Have done lots of reading about new meds. I will follow up on this sight in a few months after I make a decision and see how I feel.

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windyshores | @windyshores | Sep 18, 2023
In reply to @ginger123 "I’m 72, post breast cancer radiation and chemo 20 yrs ago. My latest dexascan shows osteoporosis..." + (show)
@ginger123

I’m 72, post breast cancer radiation and chemo 20 yrs ago. My latest dexascan shows osteoporosis at varying degrees in hips, thighs. Having quite a bit of pain in thighs when I sleep! Doctor immediately said Fosamax without any further testing. I’m reluctant to start on any meds, and have been reading about Osteoporosis boost powder. Any positive results? And how long did it take to see results?
Love this chat group. Thanks so much!

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@ginger123 osteoporosis does not cause pain, itself, I have always been told. So there may be another issue with your thighs!

Many doctors start with Fosamax or other bisphosphonates but it is better to start with a bone builder like Forteo, Tymlos or Evenity, though I believe past radiation is a contraindication for the first two.

If your scores aren't too bad insurance probably won't cover any of the bone builders. For a natural approach you could look at Keith McCormick's book "The Whole Body Approach to Osteoporosis or check out Dr. Lani Simpson. McCormick also has a new 700 page book called "Great Bones." Margaret Martin at melioguide.com is an expert on exercising.

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1 reply
windyshores | @windyshores | Sep 18, 2023
In reply to @riverpark "I’m an 80 year old female with a spine T score of 3.4, wrist T score..." + (show)
@riverpark

I’m an 80 year old female with a spine T score of 3.4, wrist T score 4.5. I started Forteo shots 21 days ago and had 11 days of side effects and thought I’d stop. Now I feel a little foggy minded and some body aches etc. but tolerable. In your experiences do these side effects vanish? I hate to feel this way for years to come. All of your experiences are so valuable to me. Do you think a T score of 3.4 is that significant?
Thanks so much!

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@riverpark I have been doing Tymlos for two years and often post about how side effects can ease over time as our bodies adjust. Tymlos has an adjustable dose pen so I was only able to get on it by starting low, letting my body adjust, and then moving up on the dose and so on. It sounds like it is possible Forteo will be tolerable for you. I did not do full dose Tymlos for most of the time I took it and still had excellent gains. I believe a score of -3.4 is significant, yes, but ask your doc!

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1 reply
ginger123 | @ginger123 | Sep 18, 2023
In reply to @windyshores "@ginger123 osteoporosis does not cause pain, itself, I have always been told. So there may be..." + (show)
@windyshores

@ginger123 osteoporosis does not cause pain, itself, I have always been told. So there may be another issue with your thighs!

Many doctors start with Fosamax or other bisphosphonates but it is better to start with a bone builder like Forteo, Tymlos or Evenity, though I believe past radiation is a contraindication for the first two.

If your scores aren't too bad insurance probably won't cover any of the bone builders. For a natural approach you could look at Keith McCormick's book "The Whole Body Approach to Osteoporosis or check out Dr. Lani Simpson. McCormick also has a new 700 page book called "Great Bones." Margaret Martin at melioguide.com is an expert on exercising.

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Thanks for the info. I'll look into it.
I've also ordered a natural supplement of Collagen Peptide.
I'd like to give that a try before heading to an Rx.

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riverpark | @riverpark | Sep 19, 2023
In reply to @windyshores "@riverpark I have been doing Tymlos for two years and often post about how side effects..." + (show)
@windyshores

@riverpark I have been doing Tymlos for two years and often post about how side effects can ease over time as our bodies adjust. Tymlos has an adjustable dose pen so I was only able to get on it by starting low, letting my body adjust, and then moving up on the dose and so on. It sounds like it is possible Forteo will be tolerable for you. I did not do full dose Tymlos for most of the time I took it and still had excellent gains. I believe a score of -3.4 is significant, yes, but ask your doc!

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Thanks windyshores! You have eased my mind and I’ll continue taking Forteo and hope the doctors know what is best.

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ppat4pr | @ppat4pr | Sep 20, 2023

I would not feel at all comfortable with the doctor who showed you how easy it is. I think they get paid, or otherwise rewarded, for pushing some medications. Really hope I am mistaken.

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2 replies
ppat4pr | @ppat4pr | Sep 20, 2023
In reply to @susanfalcon52 "If you are getting the shots at an infusion center or a hospital, Part B pays..." + (show)
@susanfalcon52

If you are getting the shots at an infusion center or a hospital, Part B pays for it. Part B has been paying mine for 4 months. The only way Medicare Part B would deny it would be if they thought your osteoporosis wasn't bad enough.

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My doctor recommended this but the infusion part scared me. Will you please tell me more about what the infusion is and what it entails. Thank you.

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1 reply
susanfalcon52 | @susanfalcon52 | Sep 20, 2023
In reply to @ppat4pr "My doctor recommended this but the infusion part scared me. Will you please tell me more..." + (show)
@ppat4pr

My doctor recommended this but the infusion part scared me. Will you please tell me more about what the infusion is and what it entails. Thank you.

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I agreed that “infusion” sounds scary. It implies that you are hooked up to an IV. It’s actually just two shots - one in the back of each arm.
I have not had any side effects so far. Just tired the day after. Last time, (4th injections), I was fine.

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ppat4pr | @ppat4pr | Sep 20, 2023

Thank you for your response. I thought it was one yearly injection. Can you confirm this? Also, doyouknow how long they’ve been giving the injections? Thank you very much.

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