Struggling with making an osteoporosis treatment decision

@tsc thats encouraging that your spine improved to osteopenia!! Did your hips remain the same or get a little worse? I'm wishing you all the best!!!

@triciaot: I know your post is from 7 months ago but wanted to throw in my 2 cents worth. My mom was in the same situation as your mom. She would have a break just turning around suddenly while sitting at the kitchen table. And in a lot of pain. Therefore, as much as I hate taking drugs that have side effects, I worry that the alternative for me, down the road, may be worse.

I have been taking Tymlos since January 2024, after I tripped and fell and ended up with a compression fracture at L1. I've taken Fosamax and Prolia in the past. I've had only one DEXA since starting Tymlos, in February 2025, and it showed significant improvement in my spine, where it usually works best, and very little change elsewhere. I will go off it in January and what comes next is unclear.

As for side effects, I found them completely manageable. At first I took the shot early in the evening. I would feel a bit nauseous sometimes and occasionally my heart would race for a few seconds. The nausea passed in an hour or two, wasn't awful, but was certainly unpleasant. I switched to taking the shot right before I got into bed at night, and that resolved the issue, even though I stay up to read for easily an hour or more after I get into bed every night. I have no idea why this makes any difference, but it does, at least for me.

As for the shot itself, it is absolutely nothing once you get past the idea that you're giving yourself a shot. It's a very short, very thin needle, and I usually don't feel it at all. Once in a while depending on where I inject I feel a slight prick, which goes away the second I withdraw the needle.

Everyone is different, and no one can tell you what your experience will be. But for my money it's well worth the try. My spine is now barely osteoporotic (t score -2.6), and I'm hoping it will have improved even more during the second year.

Good luck to you. Osteoporosis is the most frustrating medial problem--every solution is fraught with potential drawbacks!

@anewyorker Can I ask, what was your T Score prior to taking Tymlos. I was prescribed Tymlos after a fracture of the T 11. I am concerned taking it with side effects, but I certainly do not want another fracture.

Your post made me feel more confident taking it. Thank you.

@ltj My lumbar t score was -3.2 or -3.3 for a few years before I started Tymlos, when I was on Prolia. I didn't lose bone mass but I certainly didn't gain any.

I took raloxifene from 1998 to 2006, when I developed a massive DVT that may have been caused in part by that drug. I switched to Fosamax but had a real problem with GERD. So in 2010 I stopped that. My lumbar t score at that point was -2.5. I am embarrassed to admit that I took nothing for ten years, until I had another DEXA and my lumbar t score was -3.2. It stayed there, bouncing between -3.2 and -3.3, for four years, while I was on Prolia. So it stabilized but didn't improve. I had that lumbar fracture in October 2023 and at that point my endo switched me to Tymlos, and we won't know exactly how well I did until I have another DEXA in February.

I know you read a lot about side effects, but I wonder if many of the people who write about them are the ones who do have real problems and people who do well don't bother to post. The Tymlos pen allows you to adjust the dose, so you can ramp up if necessary, if your doctor approves.

Good luck. This disease is incredibly stressful, not least because the treatments all have potential drawbacks. Hope you do well.

@ltj I don't think I specified, but my lumbar t score after one years on Tymlos was -2.6, barely in the osteoporosis range. Can't wait to see how it comes out in February.

@jimmy05, my hips got a little worse. My doctor told me to get a rebounder and use it 10 minutes a day. I was doing that for a while, but I read it takes 30 minutes on a rebounder to rebuild hips.
On a regular basis, I try to do heel drops, and different versions of squats, also bridges to build the hips.
I was doing Dr. Loren Fishman's yoga routine, "12 Poses vs Osteoporosis" available on YouTube, stopped it for a while, and I'm just getting back to it.
Take care!

@anewyorker During the 10 years when your Tscore went from -2.5 to -3.2 did you do any interventions like impact or resistance training? You said you did nothing, you mean no meds??

@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.

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.