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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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Only a year and a half or so...too soon for another bone density test.
My endocrinologist wanted it to be RECLAST... When I did my due diligence, read reviews, etc... I was a bit horrified... Black box warning, etc... So that made me waste more time.
A broken ankle doing nothing told me to stop dithering around and make a choice... I felt a weight off just making a choice. Good luck!
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3 ReactionsKristie, this is very interesting. No one told me that I could do injections myself. I go to an infusion center every month. When I received my EOB from Medicare, the infusion center was charging Medicare $5,000+ for each visit!
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1 Reaction@sup7401 my doc will not prescribe Prolia because of the problems getting off. If and when you stop, make sure to do testing to determine the best timing for Reclast to follow up. Keith McCormick writes about this in his new book "Great Bones." Standard timing is Reclast 6 months after last Prolia, but this needs to be individualized. Too early and Reclast won't work and too late and bone loss will already have occurred.
Getting off Prolia without well-timed follow-up with Reclast can mean abrupt bone loss and increase in fracture risk according to my doc, McCormick and other sources. So be careful!
@sup74011 was Reclast the only other option offered? Not Forteo, Tymlos or Evenity? For many of us insurance is the culprit in insisting on Reclast or Prolia first. It should be bone builders first then Reclast or Prolia!
@lindysue so sorry that happened to you. Your post is helpful to others!
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3 ReactionsStarted evenity Friday. No noticeable side effects yet other than a bit of soreness at injection sites.
The one thing I would say to you is liking your docs won't ever be the same as doing what you feel is best for your body and your life. Would a second opinion help?
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3 ReactionsI had already tried alendronate...a nice simple pill. My style...
It worked! T scores improved greatly.
Started to worsen a duodenal ulcer .... So went on the drug holiday
No, they never suggested the other drugs....just reclast
And THAT makes me pause.
I thank you for that info, though... I will pay attention
PS...took 8 months to see the endocrinologist...they are in short supply
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1 ReactionThank you, Kristie: I think I prefer to let the nurses do it; however, if my only method were to do it myself, I would learn.
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1 ReactionI took alendronate after forteo. Now on evenity. Doc wants to follow with prolia. I never had any issues with alendronate and wonder...can I go back on it rather than prolia post evenity?
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1 ReactionSorry....I have no clue about that.
Such a process! Maybe someone here will no that answer.. Good luck!
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3 ReactionsYEs @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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3 ReactionsSince I have been told twice when being worked on (root canal and, in another instance, a molar extraction) by specialist dentists that I had long term infections underneath my gums, I am now awaiting the specialist who worked on root canal and a deep cavity--I am waiting to hear from her. I have asked her if it is possible to detect infection in my gums without the extremes that were gone to by her and the other dentist. I anticipate a no on this question, and will then have to ask my endocrinologist if the Evenity poses a necrosis of the jaw threat with underlying infection in the gums or teeth. Or is it only when bone is exposed that necrotic effect applies. If it is the former, then I will have to look for an alternative or try to achieve bone health with a holistic approach, i.e., with vitamins and exercise.
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