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Struggling with making an osteoporosis treatment decision
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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Sorry I meant "data" not "date."
Those three ARE the bone building drugs. (Forteo, Tymlos, Evenity). As opposed to anti-resorptives like bisphosphonates and Prolia.
My post was a response to another post to clarify that McCormick, in my experience, does not only recommend Evenity. Instead he gives us a choice among the three "bone builders."
Generally speaking McCormick and my doc recommend bone-builders before anti-resorptives but there may be exceptions for less severe cases. ()
This does not mean you can't have an increase in bone density from anti-resorptives. (see below)
ps the use of the term "bone builder" refers to the anabolic action of meds that increase osteoblast activity....anti-resorptives affect turnover by decreasing osteoclast activity https://my.clevelandclinic.org/health/body/24871-osteoblasts-and-osteoclasts
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1 Reaction@proliamistake did you have a follow-up medication when you stopped Prolia?
Reclast stays in the system for a long time as well.
Here is a post by dxguru, and expert on the Inspire site:
How long does it remain in your body is not as important as how long does it remain active and able to reduce bone loss by inhibiting osteoclast activity. That is between one and three years with most of the effect wearing off after 12-18 months. This is based on the levels of bone turnover markers which are depressed within a few days of the injection and the. After about a year begins to rise and eventually return to their pre-injection levels. Some of the reclast become embedded deep within the bone matrix for many years but is inactive because only drug exposed on the surfaces being remodeled by osteoclasts have any pharmacologic effect.
@pennykj Thank you for sharing your experiences so far. Can you tell us about how much a Marodyne LiV platform costs and how long you have been using it? I have decided not to take the Osteoporosis meds and want to do all I can to slow my Osteoporosis
Thanks and good luck with your upcoming doctor visits.
Please tell me the name of the book.
What kind of severe reaction did you have from the Prolia. And, do you think that drug possibly had some connection to your compression fractures? On my last DEXA scan my total hip was -2.4 and my lumbar spine was -3.2, which my endo Dr thinks is severe. I'm having another scan in two months. I'd like to avoid any of the meds so don't know what to do.
The Marodyne LiV costs around $3,250 US, plus shipping. In Florida, there is 7% sales tax added, but shipping is less. I have been using the platform for about 10 days, so it is too soon to know if it will help. I am trying to all I can to slow my osteoporosis also.
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1 ReactionSeems so crazy that there are so many variations in how treatments are covered and paid for. I also have traditional Medicare and a Part D drug plan plus a Medicare supplemental insurance plan. Since my Evenity shots are administered at a hospital infusion center, not a doctor's office, once per month, Medicare negotiates and pays a certain lessor portion of the total cost, and then my supplemental insurance plan pays the remaining 20% of that negotiated cost. The Part D insurance doesn't come into play at all.
within 48 hrs i was in severe pain could not really walk or open my hands went to my dr he gave me a steroid pac i took the first line and by the next day all the pain was gone so i thought. the minute i was off the steroids the pain came back.it was my whole body a burning deep penetrating pain that i couldn't sleep walking and moving was very painful my whole body just ached. i was put on 20 mg prednisone and that helped somewhat but i was never without pain. as the months went on and the shot was waning the pain got better and then i was told i had ra never had any o =f this before the shot so yes i do believe the shot did alot of damage and i beliee it is still doing it. do not take the prolia shot 6 wks after having the shot i had my first compresion fracture but did not know it until it was pretty much healed. very painful then my 6 mos with prolia was up on may and this past auguat i had another compression frxture. they say that happens whwn you stop the prolia and i only had 1 shot. i am so angry with myself gor not checking it out i trusted my dr and now will suffer with side effects for the rest of my life such as fractures i can only say the fda did not vet this drug properly and drs are giving it out and know nothing about it ir how bad it can be nope this helps
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2 ReactionsThank you for your answer.
Does the Infusion center order the Evenity for you each month?
Your experience sounds terrible. I'm so sorry about the pain you've gone through. My endo Dr minimized size effects, of course. Between my scans in 2019 and 2021, my numbers stayed the same. My next scan is in a couple months and I hope I am still stable and not worse.