Struggling with making an osteoporosis treatment decision

Hello Sue, it's important to know, that I know of, most clinical trials are sponsored and paid for by the manufacturers of the drugs. Yikes. Warmest wishes, Sunnyflower

Hello Sue, it's important to know, that I know of, most clinical trials are sponsored and paid for by the manufacturers of the drugs. Yikes. Warmest wishes, Sunnyflower

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.

@shelldct1 Good morning. To answer your question, I did nothing except be really stupid for ten years. In hindsight, it's amazing my scores weren't worse in 2020 than they were.

I should also add one other data point. By 2020, my t score for my hip was -2.5. After I went on Prolia, it improved noticeably, and by 2024 it was -1.7. It improved even more on Tymlos, and as of last February was -1.5. So while I was on Prolia my spine was stable but didn't improve, but my hip did. That's not nothing. When I took that bad fall, my hip was not injured outside of a bruise; I thank Prolia for that.

@anewyorker did you get any side effects from Tymlos as that’s what my rheumatologist wants me to have but I’m terrified.

@mandie4712 It bothers me so much when I hear that people are terrified by a med like Tymlos. My experience has been so benign overall. When I started taking it in January 2024, I experienced occasional mild nausea that started soon after the shot and that lasted up to two hours and also very occasional rapid heartbeat for a few seconds (I have a mild arrhythmia called superventricular tachycardia, which means my heart sometimes has run of six or seven rapid beats. It's only occasional and for all I know these weren't caused by the Tymlos, but it is a listed side effect, so take it for what it's worth). Anyway, I changed the time of day I take the shot (from early evening to bedtime), and both side effects promptly vanished.

What happened with me may have exactly no relevance to what will be your experience. But I have absolutely no side effects from Tymlos now, and have had none for most of the time I"ve been on it. I know other people have had a very different experience. But you can regulate the dose and start slow and work up, which has helped mitigate the side effects for some people.

In any case, all of the Tymlos you inject (or most of it, I'm not really sure which) is out of your system in something like an hour and half, which is one reason the side effects are so time limited. It's not like Reclast where you get a shot once a year and the med stays active in your system.

Talk to your doctor. But for me Tymlos has been wonderful. I don't love doing the shot, but it takes literally two minutes. In exchange for that, my spine improved from -3.3 to -2.6 last February, and I'm hoping it will be even better when I have my next DEXA scan, in February.

Tymlos seems to work best on the spine, so if your problem is, say, your hip, it might not be as effective for you. That's a question for your doctor.

Good luck. I was pretty stressed about starting Tymlos, but after a compression fracture I had no choice. I hope things work out well for you.

@anewyorker
Thank you for your post it’s really appreciated. I’m in the UK but here it’s a new injection so no real information about it here it’s called Abaloparatide injection but same thing. I was stupid and read reviews on an American site and that’s what put me off. I’m disabled can’t walk at all have to be lifted and I was told an hour after injection you desperately need a wee that worried me as I can’t get anywhere fast especially the commode. Plus back pain, palpations, one and joint pain, dizziness etc and as I can’t only just stand for 20 seconds I didn’t want to fall as I broke my neck of femur 5 years ago but it never recovered that’s why I’m disabled. I also have spinal fractures now as cannot hold back up straight anymore. My rheumatologist suggested this injection because of my femur and spine fractures plus my bone scan is not good so high risk of fractures again. I’ve heard lots of people take it at bedtime but once I’m in bed I’m stuck there until I’m lifted out and was worried about getting bad palpitations and nausea plus bladder weakness whilst stuck in bed. I didn’t realise the med only stayed in your system a short time which is good. The nurse is coming next week to discuss and do the injection but I’ve been having panic attacks about it. If I was able bodied I’d be more positive about the injections but as I’m stuck in a chair it concerned me a lot. To be honest I’m pretty useless can’t do anything for myself. I’m glad you got on well with this injection and I know I need to take it but the fear is awful as since breaking my femur I’ve lost all my confidence and scared of everything now as that fracture has destroyed my life.

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

@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.