Struggling with making an osteoporosis treatment decision

I felt ready for assisted living. I completely understand where you are right now. It is scary! I hope you are able to take something that helps.

Make sure to have an endocrinologist who will work with you on follow-up plans after Tymlos, and one who will be flexible with your sensitivities in mind.

As I said, mine suggested a 1/4 dose of Reclast to minimize sensitivity, with hydration before and after, medication (tylenol, maybe benadryl) before, and also asking for a slow infusion.

Hi Everyone,

I am a 55 year old, white woman who has just been diagnosed with Osteoporosis. Two years ago, I had a complete workup done to evaluate exactly what kind of arthritis I have that included a Dexa scan. For the record, I have, "Erosive, inflammatory, osteoarthritis that is not associated with an auto immune disorder". My doctor said I am an extremely rare bird in that regard. This is absolutely genetic as both my mother, grandmother and great grandmother also suffered from it.

At that time, I was in Osteopenia. That was July 2020. So I diligently kept track and when I didn't hear from my doctor after the two year period, I called and asked for a referral for another bone scan. I just had that done and my T scores are now -2.8 in the spine, and -2.1 in the femoral neck. My PCP was very concerned that the numbers got that much worse in two years. So...I am just starting my journey. I have worked out my entire life doing aerobic and weight lifting, I do not have low Vit D or low calcium and have been taking supplements of both for decades now, I have no family history of fractures and have had no fractures myself except for when I was 8 years old and fell off a playground unit onto a concrete surface landing directly on my leg. Ironically, two months after the Osteopenia diagnosis, I slipped on a piece of laundry on my basement stairs and fell down the last three steps, landing on an area rug on my left hip pretty hard. It hurt, but I didn't break anything. (I must confess that I was a hot mess lying there crying with the "patient has an 8% risk of hip fracture within the next 10 years" going over and over in my mind).

I have scheduled an Echolight scan to be done in Asheville during an upcoming visit in October and will also be setting myself up with a specialist at a local hospital to run a battery of tests to see what might be causing this in someone of my age. I am NOT going to make a quick decision about going on any medication and read this entire thread, which I must say has been hugely helpful, so thank you to everyone who commented here. I look forward to adding to the conversation with my experiences and am grateful to have this connection.

Those scores are not terrible. The femur neck is not osteoporosis yet and the -2.8 is -0.3 over the line. But I view osteoporosis as a spectrum, not a line, actually. Of course discuss with your doc and checking bone quality is smart too.

I had osteoporosis for 14 years plus 5 on a cancer med that worsened things and didn't fracture- just fractured spine last year finally with an unwise but kind of extreme movement.

I am pro-medication in most of my posts but friends with scores like yours are not doing meds and that is an option for you and your doctor to discuss. I refer people to Keith McCormick's book "The Whole Body Approach to Osteoporosis."

If you are 55, is it possible you had a precipitous drop at menopause? My own experience was a sharp drop at menopause and then a much slower drop (more stable) thereafter (I am 71 and was first diagnosed at 55).

I did tai chi for years which helped with balance, also an important preventative.

One thing to know: insurance tends to cover Prolia and bisphosphonates first, and requires that you fail on them or cannot tolerate them or suffer a fracture or have severe DEXA scores etc. before paying for the real bone-builders, Forteo, Tymlos and Evenity. If your income qualifies you can get help for Tymlos or Forteo, or even free meds.

Studies have shown that the front line Prolia and bisphosphonates may reduce effectiveness (not sure how much) of the bone-builders. You may want to save the bone builders for later, according to doc recommendations, but I personally think insurance needs to change!

Prolia can pose problems for some because you cannot just stop it (my doctor agress). Fracture risk goes up with stoppage and you have to go on something else, usually a bisphosphonate.

My friend just broke her wrist and has scores identical to yours. She is not doing meds yet. My ultimate scores were approx. -4 and after Tymlos I would honestly be pleased to have your scores! Not to minimize your concerns but hopefully give you the feeling that you have some time.

Thank you so much for your thoughts. I was officially in menopause as of this past June, so I absolutely think that the last two years may not be predictive of the next two years. I'm glad that I asked for another scan and that, like you say, the numbers are not that bad yet. This does indeed give me time, so I am not in panic mode as a result. I will definitely look up that book. I haven't started Tai Chi yet, although I have a DVD of it, but I regularly do yoga, pilates, and other workouts that require balancing. Honestly, I am hopeful that things will not get worse, but I have always been a proactive person, which is why I'm on this site now. It will be really interesting to see the results of the Echolight scan.

Thanks again, Windyshores!

Great comment. The older drugs do have a track record and you can at least get good information. Fosamx is usually given easily (now a generic) ..but if you take the “holiday” know that it stays in your system for 10 years!!! Some holiday!! There are others in the same category that, if you stop them, they leave out of your system within a couple of weeks. Worth looking.

What I've read is that fractures often occur when one of the drugs that builds bone density fast is stopped because the bone loses its density fast.

The holiday means not taking the drug. I guess continuing to take it would result in a kind of overdose as it stays in the body.

Heyhey..I wish you could see my face! I’m here shaking because your emotions are mine as well! I have not slept since finding out this diagnosis on Saturday. I have spent all of my days looking up information.I’m terrified and feeling let down by my body that I cared for so carefully for 75 years..now this! And the one thing that I don’t have the luxury of is time. I’m spending a lot of time on regret that I didn’t press for more information when I found out years ago that I had osteopenia. My doctor didn’t talk about it and I just assumed that I was OK. Well, if I had started treating it then perhaps I could have avoided the situation that I’m in now! Oh, the luxury of hindsight!
When I received my results, they came on a Saturday night. I was completely horrified, and there was no one to talk to. I sent my doctor a text and spent the rest of the time worrying when I did receive a text back from her it’s said “it’s bad. Take Fosamax”… wow. I sent her a reply “no”… then a few minutes later, a text arrived setting up a phone appointment for this Friday. I’ve been making notes and questions to ask to see if I can try to do any of this without the medication. But right now I don’t have any answers because I don’t understand the test result. They don’t do a T score. it is a FRAX but shows25% for major osteo fracture, 13% for major hip fracture. If anyone knows how bad this is, I would certainly like some clarification. I’m trying to get ahead of my conversation with her tomorrow..
When Foster Max first came out in 1995, my gynecologist put me on it because at the time they thought it was hard, healthy and I was going thru menopause. After a year, she took me off of it, because by that point, they realized that it was not heart protective at all at the time, I did not realize that it stays in your system for 10 years! I think that set me up for the osteopenia as well, I’ll never know. But since then, I’ve had terrible jaw locking if I go to the dentist. Sometimes it scares the heck out of me! I hear the horror stories about dental issues if you were on these, and I certainly don’t need more of those problems!
Anyway, I have taken your time talking waaaay too much about me..but just wanted to say I HEAR you on the INTENSE anxiety and feeling overwhelmed.
Please stay safe and keep us posted

My doc is not prescribing Prolia, the drug you are referring to that leaves quickly, because that sudden drop off brings sudden increased risk of fractures. He says breaks are possible with biphosphonates, because they linger, but you cannot take a break with Prolia unless you go on something else.

What does your doctor recommend for follow up to Evenity?
I am getting #9 Evenity injections this month - pondering the follow up drug to maintain the gains. My endocrinologist is recommending Prolia after my 12th month. I’ve been told it continues to increase your bone density for another year, when followed up with the Prolia. Both monoclonal antibody technology- very cutting edge stuff!
Since you can’t stop Prolia ( wind up worse off) it’s giving me pause…
My endocrinologist says if you stop Prolia you have to take something else.
So I still have lots of questions.
I’m in good health and seem to tolerating Evenity fine- though I do feel a little weird day 5-10 after the shots each month. Kinda achy, head/skull seems sensitive- hard to explain.
But goes away.