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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

JK | @contentandwell | Jul 31, 2021
In reply to @artscaping "Hi there…..I was on Tymlos for 2 years exactly. I understood that there end of 18..." + (show)
@artscaping

Hi there…..I was on Tymlos for 2 years exactly. I understood that there end of 18 months was the best time for the transfer but I had not made up my mind about Prolia, even though it was my only choice because of severe reactions to Bonniva and the other options. I spent quite a bit of time talking to the medical professionals at Amgen, the manufacturer of Prolia about testing results across the board. Only 10% on average, had serious side effects. I was still worried that I would be in that 10%. The research department was helpful in pushing me over the edge. I also learned what to do if I had immediate side effects with Prolia.

If you would like to connect with Amgen….let me know and I will respond with the direct phone number.

May you be free of suffering and the causes of suffering.
Chris

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@artscaping Trying to figure out the next step after Tymlos is difficult. Reclast has been suggested but I hate the thought of it being in my system for a year if things don't go well. I am only in my 5th month though so I have time to decide.

@windyshores If you are on Medicare the grants that many people have are not available to you. The only assistance you can get is if your income is under $60,000 a year. Those of us in that vast middle have to pay the large copay, generally about $560 a month for Tymlos, more for Forteo.
JK

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1 reply
windyshores | @windyshores | Jul 31, 2021
In reply to @contentandwell "@artscaping Trying to figure out the next step after Tymlos is difficult. Reclast has been suggested..." + (show)
@contentandwell

@artscaping Trying to figure out the next step after Tymlos is difficult. Reclast has been suggested but I hate the thought of it being in my system for a year if things don't go well. I am only in my 5th month though so I have time to decide.

@windyshores If you are on Medicare the grants that many people have are not available to you. The only assistance you can get is if your income is under $60,000 a year. Those of us in that vast middle have to pay the large copay, generally about $560 a month for Tymlos, more for Forteo.
JK

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@contentandwell not sure why you addressed me. I was providing info to others on Radius Assist, which provides Tymlos for free depending on income. I already qualified and got my Tymlos, though it turns out I can't take it.

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2 replies
JK | @contentandwell | Aug 1, 2021
In reply to @windyshores "@contentandwell not sure why you addressed me. I was providing info to others on Radius Assist,..." + (show)
@windyshores

@contentandwell not sure why you addressed me. I was providing info to others on Radius Assist, which provides Tymlos for free depending on income. I already qualified and got my Tymlos, though it turns out I can't take it.

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@windyshores I mentioned you because you had spoken of "Radius Assist was easy to apply for- just sent taxes- " and I just wanted others, and you, to know that was not available to all.
JK

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1 reply
windyshores | @windyshores | Aug 1, 2021
In reply to @contentandwell "@windyshores I mentioned you because you had spoken of "Radius Assist was easy to apply for-..." + (show)
@contentandwell

@windyshores I mentioned you because you had spoken of "Radius Assist was easy to apply for- just sent taxes- " and I just wanted others, and you, to know that was not available to all.
JK

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I was referencing my previous post above that one. Just wanted to expand on that to say that the process was not burdensome. It is a financial aid program, of course.

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justdiagnosed | @justdiagnosed | Aug 1, 2021

I’ve just been diagnosed with osteoporosis. Does anyone out there have Hashimotos as well as osteo? Doctor prescribed Risedondrate Delayed Release but I’m also taking Levothyroxine (for my thyroid) I’m 56 and 120lbs....and depressed with the diagnosis. I have not started the Rosedondrate yet. There must be a better way that actually works.

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2 replies
ldawsonat105 | @ldawsonat105 | Aug 1, 2021

I am checking in to see if anyone has taken the Homepathic route for bone density. It's a "3 salt" treatment. Schuessler cell salts and has Anna's 3salt. in the homepathic Store, etc. Thanks.

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Amanda Roe | @amandajro | Aug 2, 2021
In reply to @justdiagnosed "I’ve just been diagnosed with osteoporosis. Does anyone out there have Hashimotos as well as osteo?..." + (show)
@justdiagnosed

I’ve just been diagnosed with osteoporosis. Does anyone out there have Hashimotos as well as osteo? Doctor prescribed Risedondrate Delayed Release but I’m also taking Levothyroxine (for my thyroid) I’m 56 and 120lbs....and depressed with the diagnosis. I have not started the Rosedondrate yet. There must be a better way that actually works.

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Hello @justdiagnosed and welcome to Mayo Clinic Connect. A new diagnosis is difficult and it is good of you to acknowledge your feelings on the matter.

Members who also have dual diagnosis include @suemer @cctoo and @cherriann who may be able to provide you with support by way of their experiences.

What concerns you most as you embark with both Rxs?

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justdiagnosed | @justdiagnosed | Aug 2, 2021

Thank you for your reply. I’m afraid of the side-effects of Risedondrate; whether anyone has experienced any of the side-effects; if I start this prescription, would I have to stay on it permanently? I would like to take Strontrium for 6 months instead but can’t make a decision. If strontrium does not work, will my bone loss be worse?

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1 reply
kilh | @kilh | Aug 2, 2021
In reply to @windyshores "@contentandwell not sure why you addressed me. I was providing info to others on Radius Assist,..." + (show)
@windyshores

@contentandwell not sure why you addressed me. I was providing info to others on Radius Assist, which provides Tymlos for free depending on income. I already qualified and got my Tymlos, though it turns out I can't take it.

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I had already bought 6 months of Tymlos (costing $2200 my co-pay) Now I am off of it and have two months left in the refrigerator. I applied for Radius Assist and was accepted for 18 months free. This was to start in Oct. Then you have to apply again for 2022. They really only look at applications in November otherwise you have to wait for their decision for quite a while. I wonder if trying to start it again would be worth it?

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1 reply
windyshores | @windyshores | Aug 2, 2021
In reply to @kilh "I had already bought 6 months of Tymlos (costing $2200 my co-pay) Now I am off..." + (show)
@kilh

I had already bought 6 months of Tymlos (costing $2200 my co-pay) Now I am off of it and have two months left in the refrigerator. I applied for Radius Assist and was accepted for 18 months free. This was to start in Oct. Then you have to apply again for 2022. They really only look at applications in November otherwise you have to wait for their decision for quite a while. I wonder if trying to start it again would be worth it?

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I got onto Radius Assist in May and it took only one day to get on it, then only a few days to get the Tymlos.

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