Hesitant to begin drug treatment for my osteoporosis

Posted by artistel81 @artistel81, May 14, 2024

Hello! My first post here as a new member. I am an active 69 year old female who was diagnosed many years ago with osteopenia but now have osteoporosis. When diagnosed with osteopenia I gave several drugs a try. I had side effects from all the oral choices I took, and when giving myself Forteo shots, broke out in hives all over my body. After that, I decided I would take my chances and go the natural route to keep my bones healthy with diet, consistent exercise and Calcium/Vitamin supplements. Fast forward to present time my last bone density scan was worrisome, (a -4,4 T score in my spine). An endocrinologist strongly suggested treatment, (shots or infusions), but I still fear side effects. I am currently trying to educate and empower myself by researching all options. I am already a bit overwhelmed with so many differing opinions. Drugs or no drugs?! The possible serious side effects of drug treatment still frighten me. Has anyone here diagnosed with more advanced osteoporosis, remained fracture free? Am I at such a high risk that I’m doomed without drug treatment? Thank you in advance for any advice, experiences, etc.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@njx58

My hip has very mild osteopenia, and it has gotten a little better on medication. It's never been an issue - just my spine. My doctor isn't concerned at all about my hip. Also, I run and do hip exercises, so that helps.

You'd have to determine with your doctor the best course of action. Unfortunately there are never any simple answers with osteoporosis.

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What exercises do you do for your hip?
I do a lot of squats. Bridges with some weights on my stomach .
My femoral Neck is my lowest bone density of -2.2

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@meri8181

What exercises do you do for your hip?
I do a lot of squats. Bridges with some weights on my stomach .
My femoral Neck is my lowest bone density of -2.2

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There is a machine at the gym where you sit with pads on the outsides of your knees, and you push outwards.

At home, you can do clamshells with resistance bands.

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@steinbeck

Thanks mayblin. I used the frax calculator and if I filled it out correctly, the ten year probability of a hip fracture is 2.4 and major osteoporotic is 11. I don’t know if those numbers are alarming or not.
My endocrinologist was set on getting me on meds: the first time I saw her, I told her that I was reluctant to take osteo drugs since I walk and lift weights/take multivitamins, calcium, k2, d3/eat healthy/on HRT everyday. She said I should be on meds and gave me a choice of 3—Fosamax, forteo or reclast. Then she wanted bloodwork (that’s another nightmare horror story about the phlebotomist at Labcorp) so at my next appointment, she prescribed Fosamax. I asked her if going on Fosamax was necessary because I showed bone growth and an improvement in my Dexa since I’ve been on HRT. She was adamant about taking the Fosamax. I haven’t started taking the Fosamax.
When I see my gyn, I will ask her if there’s an HRT she could prescribe with a natural form of progesterone.

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I have a link for treatment guidelines compiled by NOF (National Osteoporosis Foundation), see slide page#18:
https://cme.nof.org/sites/default/files/Osteoporosis%20Guidelines%20and%20Clinical%20Practice-%20Singer.pdf
There are other guidelines available, which are generally similar, with some variation.

Each endocrinologist may recommend different pharmaceutical treatments based on his/her own clinical experience and judgement. This often leaves us patients with the decision of whether to follow our doctor's recommendation or to wait and consider other options.

Your calculated FRAX falls roughly in the middle range. For comparison, my FRAX was better than yours but my Lspine Tscore was lower at -3.4, so I decided to start Forteo shortly after diagnosis.

Given your endo's initial proposal, personally I'd choose Forteo (or Tymlos) in a heartbeat. You've probably read that sequencing matters (shown in the link). The timing of when to begin the pharmaceuticals also matter, and that decision is very personal.

I'm curious what led your endo to choose Fosamax. Would you mind sharing your baseline uNTX if you have it, and your lab's reference range for uNTX?

Based on the info I received from my two obgyns at different hospital systems, transdermal estradiol patch and micronized progesterone (both bioidentical) are generally considered safer than oral estrogen and synthetic progestins. This combination is favored by many doctors so it's worth exploring with your physician.

If Forteo (or Tymlos) ends up being your treatment choice, it's also worth discussing with your endo whether to use HRT concurrently.

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@lilac2025

Hi mic1953. I sympathize with you as I was diagnosed this past April with osteoporosis. I'm still recovering from the shock but have and will be taking the more holistic approach, as you are doing. (diet geared towards bones, strength training/impact exercises) I had to reply because you have EVERY RIGHT to request YOUR DEXA report and UNDERSTAND it. It's YOUR body! Just FYI, the DEXA scan looks at the Femoral Neck of each Hip and the Lower Spine. They do this because these are the areas of the body that over time have shown are most prone to fracture as bone density decreases with age (as it does with EVERYONE!). The DEXA I had didn't include the wrist, but I've heard some do.

For the lower spine, they list it as L1, L2, L3, L4 and then provide a TOTAL #. Each lumbar spine is followed by a BMD number (Bone Mineral Density) and also includes a T-score. You should ask your osteoporosis specialist to show you the report and EXPLAIN it to you. I find it rather confusing and even confounding, as they come up with this score based on the HEALTHY BONES of a 30-year old! Then, they calculate how far you "deviate" with that standard deviation from the NORM. That's the T-score part. When I asked my doctor for the score to show how you compare to those your OWN age, as in, also the aging population (!!), she asked the radiologist, who scolded her for asking! They only give that out (I think it's called the Z-score), if you do NOT have osteoporosis. No fair! In any case, my lower spine is bad -- I do know I have some disc degeneration, so I often wonder if that's related. My doctor didn't know. I've done all sorts of core and spine exercises over the years, so the muscle will protect the bone. That is critical. Make sure you add strength training to your routine, 3 times a week. I went to a physical therapist and she put me on a program with 11 different exercises. I highly recommend you explore that. I lost my confidence at the gym after my diagnosis. I was so afraid I'd break a bone. I'm not afraid any more. In fact, I had a good workout today at the local YMCA fitness center. Muscle protects the bone. Balance exercises are good for you, too.

I wish the DEXA scan considered all the other bones in the body. Some bone experts say that bone density isn't the same as bone quality. The TBS, also known as Trabecular Bone Score analyzes the bone for bone quality using software. So you also will get a TBS score.

I wish you all the best with your bone and muscle strengthening program and lifestyle. I know it's not an easy diagnosis to deal with. I've been upset about it. My world has never been the same, but I'm coping with it. My doc said I have two years to turn this around without turning to medication. She believes I can do it! (she's such a supportive doctor!). Maybe because I'm on the younger side of "elderly" at 65 she's giving me this time? She knows I've been going to the gym for over a year - had taken a break from it during the pandemic - but before the pandemic, worked out fairly regularly for many years. I have to get another DEXA two years from now, and then we go from there. I have some other issue that may have contributed, but I won't get into here. I will say it relates to whether or not the calcium from my diet & supplementation was reaching the bones. After many months of research and even taking the CTX and P1NP bone marker tests so I know where I stand NOW, at the beginning, I finally started taking Vitamin K-2 on July 1st. That's a whole different topic. Check out that topic online. Vitamin K-2 as M-7 helps direct the calcium to your bones and not to your arteries. (another topic!) I did a lot of research on that before I made my purchase and started taking it. We'll see if that's been part of my problem. . . jury it out!

All the best to you. Check back and let us know how you're doing! Try to stay positive. I hope you found this helpful in some way? I've put so much time & energy into all of this, I like to share what I've learned with others in the hopes I can help. We're all in this together! You are not alone! 🙂

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This is both helpful and honestly, a bit overwhelming. These medications often have such strong and varied side effects, plus some have been around less than 10 years. I hadn't heard anything about Vitamin K-2 so I'll have to look into that. I stopped taking Tymlos because of the side effects. I exercise regularly and have started with small weights. I wish I had someone who I could go to (in person or virtually) who specializes in osteoporosis. After reading your post, I think you know more than the doctor I went to!

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Gosh, I have been taking drugs for OP for 20 years. I got it from having a tumor on one of my Parathyroid Glands.

I’ve never had any issues with any kind of medication.

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@SusanEllen66

Gosh, I have been taking drugs for OP for 20 years. I got it from having a tumor on one of my Parathyroid Glands.

I’ve never had any issues with any kind of medication.

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Nor have I Susan.

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@lilac2025

Hi mic1953. I sympathize with you as I was diagnosed this past April with osteoporosis. I'm still recovering from the shock but have and will be taking the more holistic approach, as you are doing. (diet geared towards bones, strength training/impact exercises) I had to reply because you have EVERY RIGHT to request YOUR DEXA report and UNDERSTAND it. It's YOUR body! Just FYI, the DEXA scan looks at the Femoral Neck of each Hip and the Lower Spine. They do this because these are the areas of the body that over time have shown are most prone to fracture as bone density decreases with age (as it does with EVERYONE!). The DEXA I had didn't include the wrist, but I've heard some do.

For the lower spine, they list it as L1, L2, L3, L4 and then provide a TOTAL #. Each lumbar spine is followed by a BMD number (Bone Mineral Density) and also includes a T-score. You should ask your osteoporosis specialist to show you the report and EXPLAIN it to you. I find it rather confusing and even confounding, as they come up with this score based on the HEALTHY BONES of a 30-year old! Then, they calculate how far you "deviate" with that standard deviation from the NORM. That's the T-score part. When I asked my doctor for the score to show how you compare to those your OWN age, as in, also the aging population (!!), she asked the radiologist, who scolded her for asking! They only give that out (I think it's called the Z-score), if you do NOT have osteoporosis. No fair! In any case, my lower spine is bad -- I do know I have some disc degeneration, so I often wonder if that's related. My doctor didn't know. I've done all sorts of core and spine exercises over the years, so the muscle will protect the bone. That is critical. Make sure you add strength training to your routine, 3 times a week. I went to a physical therapist and she put me on a program with 11 different exercises. I highly recommend you explore that. I lost my confidence at the gym after my diagnosis. I was so afraid I'd break a bone. I'm not afraid any more. In fact, I had a good workout today at the local YMCA fitness center. Muscle protects the bone. Balance exercises are good for you, too.

I wish the DEXA scan considered all the other bones in the body. Some bone experts say that bone density isn't the same as bone quality. The TBS, also known as Trabecular Bone Score analyzes the bone for bone quality using software. So you also will get a TBS score.

I wish you all the best with your bone and muscle strengthening program and lifestyle. I know it's not an easy diagnosis to deal with. I've been upset about it. My world has never been the same, but I'm coping with it. My doc said I have two years to turn this around without turning to medication. She believes I can do it! (she's such a supportive doctor!). Maybe because I'm on the younger side of "elderly" at 65 she's giving me this time? She knows I've been going to the gym for over a year - had taken a break from it during the pandemic - but before the pandemic, worked out fairly regularly for many years. I have to get another DEXA two years from now, and then we go from there. I have some other issue that may have contributed, but I won't get into here. I will say it relates to whether or not the calcium from my diet & supplementation was reaching the bones. After many months of research and even taking the CTX and P1NP bone marker tests so I know where I stand NOW, at the beginning, I finally started taking Vitamin K-2 on July 1st. That's a whole different topic. Check out that topic online. Vitamin K-2 as M-7 helps direct the calcium to your bones and not to your arteries. (another topic!) I did a lot of research on that before I made my purchase and started taking it. We'll see if that's been part of my problem. . . jury it out!

All the best to you. Check back and let us know how you're doing! Try to stay positive. I hope you found this helpful in some way? I've put so much time & energy into all of this, I like to share what I've learned with others in the hopes I can help. We're all in this together! You are not alone! 🙂

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Thank you for your most informative response! You certainly have done your research!. I just don’t like the way doctors push drugs on a person…that’s what medical doctors do.

I live in a very remote area in northern Minnesota. We have a hospital, but it’s more of a pit stop if you have a major medical issue. For further testing we usually get referred to a health center in Minnesota 100 miles away
or North Dakota twice the number of miles. There are communication gaps between the three. Thus, my Dexa scan report fell somewhere in the gaps. I have reached out to no avail.

Anyway, I agree with everything you have said. I also have osteoarthritis in my spine and other degenerative issues. I know I have to exercise but I have been slack due to chronic pain. I have promised myself to work on this. Keep up the good work.

I take calcium, vitamins D and K.

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@gravity3

Nor have I Susan.

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If I may ask what drugs do you take?

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Fosomax, forteo, evenity and now, on my 2nd injection of Prolia. I have had no noticeable side effects with any. About a year ago i began bhrt..... estradiol and testosterone pellet, progesterone and estradiol vaginal cream. I recently stopped the pellet and replaced it with compounded testosterone cream and estradiol patches. I may go back to the pellet though. I am 77.

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