Struggling with making an osteoporosis treatment decision

To everyone who is apprehensive about taking drugs for osteoporosis I want to say try Evenity especially if your osteoporosis is severe. Somehow I managed to ignore several years of Dexascan results telling me that I had osteoporosis so when I finally paid attention it was already severe. My endocrinologist recommended Evemity, one of several new drugs that can rebuild bone. I was pleasantly surprised when I got a new Dexa after only a few months that showed considerable improvement in my spine. However I lost more bone in my hip joint which I attribute to the fact that I was not exercising. I think that it really is important to exercise along with taking supplemental calcium and Vitamin D3, getting enough protein and eating a healthy diet overall. I have other health problems and pain meds I take for those makes it difficult to keep exercising, but I am trying harder now.

I want to urge those who are hesitant to take the new osteoporosis drugs to take it from me they are safe and nothing else will help you rebuild your bones like Evenity. I was cautious at first and instead of taking a drug I thought I could eat a lot of yogurt and drink more milk and eat veggies that have calcium in them. Using those foods to fight this disease is fine if you have osteopenia or earlier osteoporosis but if your condition is severe like mine you should be looking for something to give you a quick start. I usually have a negative reaction to drugs but I did not have any real problems with Evenity and it is only a once a month injection in the doctor's office. After 12 months you have to switch to something else. My doctor recommended Prolia. I finished Evenity in June and I've had 1 Prolia injection which was fine. Prolia is injected only twice a year and is said to help maintain the gains you make with Evenity and even build more bone.

You don't want to mess around with osteoporosis. This is not COVID and these new drugs have been around long enough to know what to expect. No one will give out rewards if you try to muscle through this without the benefit of drugs that are proven winners. You only get one life and for most of us by the time we get osteoporosis we are half way through our alloted years. Don't waste time. Be smart. The only consideration is cost if you don't have insurance. You may qualify for assistance from the manufacturer if you don't have insurance. Evenity is effective and my Dexa shows that. I believe it is safe or I would have found out by now ( I was a medical librarian before I retired and I researched medical literature and still do). I would trust a doctor who recommends Evenity before I would trust a doctor or anyone that promotes some supplement which has not undergone the testing and scrutiny of medicines in the U.S.

@tsc Teri are you taking 70 mg once a week of alenondrate? Is it building new bone?? How have your T-scores been since using it?currently I'm on that until I see my rheumatologist on 11/12.. I'm 57 my last T-score was -2.7 in September..

@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!

@gravity3 I agree. I don’t want to have the spinal compressions my mother had in her 80s. I’m 70 and recent Reclast has stopped the yearly decline in bone density that I had. I was resistant to take anything - Fosamax was suggested 15 years ago, but when I hit osteoporosis I finally did something. My numbers are back up into osteopenia. I realize that a biphosphonate is not building bone, but I’m not losing more bone and that’s a plus. Only side effect that I felt was a couple of days of flu-like symptoms. These drugs we take are powerful and cause other effects that I cannot not see. But my mom was in constant pain, most she hid. She tried a variety of pain relievers, kyphoplasty, tens unit, trial implanted nerve blocker, and more. None of them worked. We all just try to do our best in balancing what we hope will be the better outcome.

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.

@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.

@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!!!

@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.