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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Thanks so much for sharing all those details - it’s really interesting to hear how you’ve found what works for you. I appreciate you taking the time to explain your experience.
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1 Reaction@anewyorker
Thanks unfortunately I will never walk again as my muscles never regained their strength after having rod and screws put into femur. My consultant was very arrogant as for 5 years I kept saying something isn’t right as couldn’t still can’t lift top of leg up of seat at all but he ignored me. I think I lost trust in him and lost confidence in everything. I don’t tolerate meds very well that’s why I’m concerned about the injections but I will give them a try. One person told me that the injections caused her to have a weak bladder and as I have to be lifted I’m not fast getting anywhere. If I was to do injections in bed I’m then bed bound so I was scared about wetting the bed if this side effect is true. I will speak to the nurse see what she says. Good luck with your procedure I hope it helps you so you can walk longer.
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1 Reaction@tsc
Can you let us know your T-scores before and after taking Fosamax? In other words, what was your T-score when you first started taking Fosamax?
Hi @daisy17,
I'm sorry I didn't get back to you sooner, but I've been preoccupied with caregiving responsibilities.
I can't locate the scores you asked for. I'm sorry and wish I could be more help.
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1 ReactionI too was very active was hit with osteoporosis after an injury. I have always been strong and athletic .After much research and a paid consultation with Dr. McCormick, I decided to go with forteo. It's been on the market longer. It has good results and it was recommended. It's only for 18 months and then I'm going on fosmax as a reclast as it too has been on the market for a very long time. I feel it is better to be safe than sorry. With something known than these newer drugs which doctors are paid to push
@lbroomayo1 - I've been on low doses of Estrogen & Progesterone for yrs. Now I need to have the doses & delivery methods reevaluated in light of OP. Even here in Orange County CA, it's tricky to find someone who understands that particular correlation. Many prescribe BHRT, but are not familiar w/impact on bones in terms of quantity, delivery, etc.
Can you shed any light on this from your experience/research in terms of delivery preferences? Patch? Cream? both? Oral? I'm finding very conflicting info online & can't afford all these 'new patient' consultations to get their perspective on treatment.
thanks!
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1 Reaction@consumer
I never heard of Evenity, but I did Google it. It is a protein based chemical compound with severe heart warnings. Also, protein plaque affects our brain function as we age. Estrogen helps brain function. The Evenity compound is not natural to the human body. Pure estrogen or other medications with estrogen are natural to the human body. Our bodies stop making it after menopause. However, estrogen is key in heart function when we are younger, probably due to the preparation for pregnancy. Our hearts can still function without it after menopause, but not as well. Also, I was warned that the use of estrogen for more than two years increases substantially cancer risks. I haven't seen the studies that support this information.
I will say that like any drug, every woman who uses estrogen should check for genetic predisposition for breast, ovarian, or uterine cancers. It is a gene test. Premarin has incredible potential for slowing the aging process for women.
However, our bodies' cells have something called "programmed cell death." Every cell knows when they are ready to die and let it be known by something called pain and/or discomfort. Estrogen has a way of delaying or masking that genetic trait in women, and cell death is present in all living things. But our other billions of cells are not all on board with masking or delaying cell death. So you have a conflict going on in your body, if you choose to try estrogen; the conflict may not be pleasant either.
Finally Estrogen brand name is Premarin and there is no patent for a generic. It's made by Pfizer a well respected drug manufacturer. I don't think there are enough women using Premarin to accurately predict outcomes of long-term risks.
Keep in mind that my nursing studies are slow and on going when evaluating my opinion. I am a 69 year-old older woman. While I have completed all the nursing prerequisites, I still haven't passed Nursing Physiology yet for nursing school. But I have passed five technical certifications boards and the NBCC counseling board as a graduate student, earned an associate degree in Nursing Education, and passed pathology/PBT board exam, and earned an ASCP certification.
Thanks for reading!
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3 Reactions@lbroomayo1
Is the Premarin the same as Evenity? Evenity is supposed to make structural growth in the bones.
Whew! Believe me, I am properly afraid of the glaring blood clot, heart warnings. The only "alternative," if you can call it that, was Tymlos, with its glaring bone cancer warnings.
@lbroomayo1, There are better estrogen products out there than Premarin. Premarin is made from horse urine. Now a days, bioidentical estrogen is prescribed. I am taking a weak estrogen patch named Menostar. There are others available.
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2 Reactions