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.

Profile picture for Lynn Brooks @lbroomayo1

I don't mind you asking. I do use a corsett; Maidenform Waist Clincher found on Maidenform.com. The corsett has metal supports and shapes my waist and torso. But more importantly, it shapes, supports, and holds my spine. With the estrogen, the time I wear the corsett has been reduced. I wear it mostly in my house, or with certain clothing that is waist defining.

I have excellent bones and density. When my orthopedic providers show me the Xrays, I'm shocked. It doesn't look like the Xray of a 69 year-old-woman. I started using estrogen and progesterone at age 62. However, my bone marrow is not nearly as healthy. I have full blown anemia in knees and hip joints and I use leg warmers (dancers' muscle warmers) and it alleviates 100% joint stiffness, pain, and discomfort. I also wear men's or boy's thermal underwear under my sleepwear all year-round while sleeping. This keeps my hips and knees warm and blood circulation working well. I am working with providers to improve bone marrow and liver function.

Remember that if you use pure estrogen you have to balance with progesterone. I cycle my use of hormones, similar to birth controll pills. You could start monthly bleeding cycle, if you are post menepausal or if your reproductive organs are not atrophic. I test for ovarian cancer and bone cancer using a simple blood test Ca 125, which tests for cancer antigens, and Ionized calcium blood test, which mearsure calcium in the blood and is known to be a predictor of bone cancer. Both tests use reference range to identify evidence of cancer.

My last warning is, there is only one company that manufactures pure estrogen here in the US and Canada. Don't be fooled with knockoffs or other products. It can be lethal after taking pure estrogen for two or more years. There is no replacement one you start this regime. I started with the smallest dose and then gradually use the middle dosage amount for the last six years. Best regards.

Wilma Lynn Buie (formerly, Lynn B. Brooks), MS EdD, LPCA Candidate, NBCC examined, Associate Degree Nursing Education, PBT ASCP Certified, ASCP Board examined

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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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Profile picture for anewyorker @anewyorker

@mandie4712 I'm so sorry to hear about your situation. It's the fear of everyone on this board, I suspect, that bone breaks such as your femoral neck and vertebral fractures leave you so incapacitated. I do hope that good medical care can get you back on your feet.

Though I'm in no way comparing my situation to yours, I have a somewhat limited ability to walk because of orthopedic problems unrelated to osteoporosis but stemming from more garden-variety problems such as stenosis and arthritis, compounded by the aftereffects of a compression fracture at L1 that resulted from a trip and fall. I'm having a two-step medical procedure starting next week that my doctor hopes will reduce the pain and allow me to walk longer distances than I can now, which is limited to about 20 to 25 minutes before the pain gets in the way.

I hope the nurse gives you good information. Your anxiety and fears are totally understandable, and I hope things get better for you.

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@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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Profile picture for Teri @tsc

@jimmy05, I am still taking 70 mg of alendronate once a week. Next year I will have to stop after taking it for 5 years. I have had one Dexa scan. My spine improved to osteopenia, but my hips didn't. I'm probably due for a dexa scan this year.
I hope things go well for you!

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@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?

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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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I 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

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Profile picture for Lynn Brooks @lbroomayo1

I have had unprecedented treatment for bone loss with estrogen and progesterone for seven years. I will share some of my pros and cons, and risks of this controversial treatment.
Cons:
1. Discrimination- Some Providers think I'm taking the drugs for sexual functioning. Some of them have been down right rude, even vindictive. This was not my goal. I like walking, running, and I have to keep working indefinitely. I have been sexually abstinent for many years like most unmarried women in my age bracket. However, I think the number #1 reason for some of the negative attitudes that I receive is that it has without a doubt, slowed the appearance of aging. I still get carded for alcohol purchases and I am almost 70 years old.

2. Toxicity- Most people don't know that pure estrogen and progesterone are toxic. You can never wind down after using these drugs. It's akin to insulin or other drugs that your body has become dependent on having to function. Your body becomes addicted and isn't nice if you try to reduce or step down the usage.

3. Costs- The cost of estrogen is pretty expensive. There are no generics for a reason. The drug is toxic, but plays a vital role in the human body. It effects the body in a number of ways which I will outline in the "pros" section.

4. Finding doctors to prescribe the drug are not easy. Most are uncomfortable and don't want to be blamed or associated for its alleged cancer risk.

5. Finally, it does increase sexual desire and this is a disadvantage if you are older woman and not married with a sexually functioning spouse. Males in your age backet after age 60 are not going to be comfortable with a woman who has strong sexual urges.

6. Finally, our bodies are akin to old cars as we age. You can fix something and it might work, but it affects something else and the old car still isn't working properly. An example would be, suppose you replace the altenator in your car, but your fuel injection system is sluggish. You still have an issue with the car. In my case, the preservation of bone matrix was my motive for hormones, not preservation of sexual function. However, my bone marrow and liver are having trouble keeping up with bone remodeling from the estrogen.

Pros:
1. Without question estrogen is a miracle worker for bone matrix and bone remodeling activity. However, be warned that bone marrow is also aging and may not be able to keep up its production of RBCs with constant bone remodeling in older women.

2. Estrogen has increased my overall brain functioning (not including memory), but with other areas of the brain.

3. Estrogen also improves my heart function. Most people don't realize that estrogen is key component in heart functioning in women. However, it does not stop functioning after menopause with losing estrogen, but doesn't function as effectively.

3. My reproduction status is unclear. No one wants to address this issue with someone in my age bracket.

4. Exercise and circulation have improved, but I must excercise frequently and vigorously to accommodate the bone remoldeling activity.

5. Hair, skin, and nails are far more healthy than my peers probably. My hair grows fast and it is full. However, I still fight old age facial hair and have had most of it removed.

6. I walk extremely well, my skeletal frame is intact, but I do have joint pain which I believe its lack luster performance is because of declining bone marrow activity. But it could be genetic, parasitic, or anemia not related to the estrogen.

I hope my experience will help others, both patients and practitioners develop a good assessment for using hormone therapy. Women should be able to make their own decisions about their bodies. I stand by my decision and I am happy with the choices I've made.

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@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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Profile picture for consumer @consumer

@sunnyflower
Wow. Just happened onto your post, my first time in this group. Now I get it!

It's October 8, 2025. I've just gotten off the phone with Evenity. The woman was rather stiff answering my questions.
How long on the market? Since 2019. Where can I read the study mentioned in your literature; when was the study; who conducted the study; any other information? She said she had to refer me back to my prescriber. For. every. question.

Very disappointing. Very frustrating.

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@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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Profile picture for Lynn Brooks @lbroomayo1

@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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@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.

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Profile picture for Lynn Brooks @lbroomayo1

@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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@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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