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How do you ever choose which med?
I already have anxiety and trying to decided which med to choose is giving me even more anxiety. Ugh To summarize my previous posts I’m 61 and was diagnosed in February with OP. My spine is -2.7 and hips -2.0.
My Gyno diagnosed me and gave me the news over the phone while I was driving in my car. He gave me choice of Prolia or Evista. Gave me a very brief description and asked which one I wanted to do. I said I wanted to see an Endocrinologist.
Made appointments with 2 different Endo’s. First one suggested Reclast, Alendronate or Evista. I did tell him when I was diagnosed with Osteopenia I tried Fosomax. Had severe pain in lower back after a couple of pills. Told him I was told to stop meds and increase calcium. When he gave me choice of the 3 meds he also skated over the side effects told me to look them up on bone health website and choose. Had God complex so I moved on. Next Dr I really liked but she came at me with Evenity and I inquired about Evista. She said I could do that too. Ordered bloodwork and 24 hour urine test. Office called me after getting results and said she wanted to set up me up with Evenity shot. I started to panic. Mainly because after that is Reclast or Prolia. I asked if she ever prescribed HRT. They said no. I feel like starting out with Evenity is basically hard core. Like I said in 61, and after Evenity is then Prolia or Reclast, which I can’t handle biophosonates and I read that odds are I will have reaction to Reclast as well.
I know I have to do something I don’t want to fracture. Maybe Evenity would really increase my scores since I’m not that far over the line, but I keep hitting the wall with Prolia or Reclast. I’d like to try Evista first or HRT, but the whole blood clot thing with Evista worries me. I read that if you’re going to be sedentary for a long period of time for instance surgery or travel you should stop it at least 3 days in advance. She doesn’t prescribe HRT so I’m guessing I’d have to find another Endo who would prescribe it. Or if Endo doesn’t prescribe that what Dr does? PCP? Gynecologist?
I have a telehealth appointment tomorrow with the Dr about Evenity, to basically talk me off the ledge.
So how do you choose? I just feel like once I make the decision my life will never be the same. It just all seems like a roll of the dice.
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@daylemaples Unfortunately, we have to be our own advocates when it comes to these bone drugs. Often times, many on this site mention that their doctor did not advise them of the side effects, or minimized them. When side effects happen, doctors have been known to respond that they can't be from the drugs even though those exact same side effects are listed on the drug literature.
We all need to do our own research before taking any medication, especially such powerful drugs as the ones used for osteoporosis.
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2 Reactions@gravity3
Oops:
Patientrevolution.org
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1 Reaction@daisy17 I have since discovered in the last year that bone density changes are slow...my doc indicated when he ordered Reclast that I could possibly have a "one and done" situation; that if my numbers move to osteopenia, I may be able to work on bone health without another infusion. CTX/NTX scores were great; he said that indicates the drug is working; thus no need for a DEXA however I need to see the numbers on the "gold standard" DEXA. Private pay for me!
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1 Reaction@daylemaples
My Dr suggested Evenity then either Reclast, Prolia or Biophosphonate. But if my insurance won’t pay for an anabolic that leaves me with Reclast, Prolia or Biophosphonates. I really don’t want to start Prolia at 61. I can’t tolerate Fosomax plus they say starting with resorption then going to anabolic doesn’t work as well. So my only option will probably be Reclast. We’ll see how the insurance company decides my medical well being. Argh
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2 Reactions@daisy17 I strongly agree with you.
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1 Reaction@jozer
My Dr said she can order another DEXA at one year. She said she just needs to change the code. I’m assuming either the diagnosis code or the reasoning code. Can’t hurt to ask about it.
@rudysmom thanks, will check into it, sometimes it is as easy as the doctor willing to change the coding to get coverage…hmmmm
@jozer @rudysmom I had a DEXA done in less than 2 years also. But I think it was then not "preventative" and maybe that what is different in the code.
Speaking of DEXA codes, I am getting close to getting TBS in the next scan. The doctor wrote in words in the test order to include TBS, but the testing place said that they would not include it in the insurance because there was no official TBS code, only the usual DEXA code. The testing place was OK with self-pay add-on for $300, so they have the equipment. The reordering of the test by the doctor's office, with the required codes, is in progress now.
Here is a link to help with TBS codes:
https://www.medimaps.ai/trabecular-bone-score-reimbursement-2/
Here is a long technical paper about how TBS is recommended by the
European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO), and the International Osteoporosis Foundation (IOF) under the auspices of WHO.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10427549/
EXCERPT: "Conclusion
The addition of TBS assessment to FRAX and/or BMD enhances fracture risk prediction in primary and secondary osteoporosis, adding useful information for treatment decision-making and monitoring. ..."
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3 ReactionsWow! I know how you are feeling! I am 69 and my dexa in February was bad news! The worst was my left hip at -4.10 (the rest were -3.40 spine, -3.30 right hip etc.). UGH!
I am terrified of all the bone drugs! Everything I've read so far is no-go for me! My endocrinologist has suggested Tymlos or Forteo. I don't see myself injecting a drug daily that will cost more than my rent, and could cause terrible side effects, so we'll see how it goes at my next meeting with her.
The osteoporosis had been coming on for quite a few years, I just didn't see it, and none of my doctors said anything! I had a PA notice that I'd lost an inch of height (4 years ago) and she said, "Oh, that's normal!" I also had two implants (teeth) fall out, but did anyone warn me about osteoporosis? I really wish they had said something!
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2 Reactions@oknowwhatpixie Can I ask your age? My T-scores are low, the worst being my left hip (-4.10) I do not want any of those bone drugs, but fear I am too old for HRT (I am 69)