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.

@grammy9

So true! I have been on Fosamax since I was 52. I was diagnosed with osteoporosis at 50. I have never broke a bone. I just requested a scan because I was short and had early hysterectomy. Now I am 61 and they say since my spine is -3.2 I need to do one of these injections. I wish I could be little older before I had to start something but I don't want to break something either. The decision is so hard!

Jump to this post

What was your original DEXA scan at 50? You are at -3.2 now. Did you get worse or did you improve? What actions did you take between now and then? I was just diagnosed at 63 with a -3.2 spine. I am seeing an endocrinologist in July and I’m scared she will tell me that I need medication.

REPLY
@shelldct1

What was your original DEXA scan at 50? You are at -3.2 now. Did you get worse or did you improve? What actions did you take between now and then? I was just diagnosed at 63 with a -3.2 spine. I am seeing an endocrinologist in July and I’m scared she will tell me that I need medication.

Jump to this post

My scan got worse every 2 years. I just kept taking the weekly pill and would take a multi vitamin with calcium. I tried to eat and drink more with calcium also and walked about 5 miles a day. It just gradually got worse. My gyno is your prescribed the weekly pill for the 9 years. I started an endocrinologist and she said you shouldn't do the weekly pill for more than 3 years. I am doing evenity injections now. 2 down...10 to go. I haven't had to many side effects.

REPLY
@kathm650

I am a new member and just got my first bone density scan which found I was severe osteoporosis with a score of -4.0. It was advised that I start on TYMLOS for 18 months to 2 years. I am scared of the side effects and want to investigate alternatives. Can anyone offer advice?

Jump to this post

I started forteo a month ago after experiencing a spinal fracture at T8. I had been taking evista and holding steady, but after this episode my endocrinologist suggested a different approach. I had been reluctant to use injections because I’m very susceptible to side effects. So far forteo has been a good solution. Worst side effect has been fatigue so I now take the shot at the end of the day. Good luck to you. These decisions are difficult.

REPLY
@grammy9

My scan got worse every 2 years. I just kept taking the weekly pill and would take a multi vitamin with calcium. I tried to eat and drink more with calcium also and walked about 5 miles a day. It just gradually got worse. My gyno is your prescribed the weekly pill for the 9 years. I started an endocrinologist and she said you shouldn't do the weekly pill for more than 3 years. I am doing evenity injections now. 2 down...10 to go. I haven't had to many side effects.

Jump to this post

When you say the weekly pill was it Fosamax?

REPLY

Yes, I took the generic.

REPLY

I’m new to this forum, and very glad to have found it. I’m 73 and pretty active, or at least my children say so. I was diagnosed with osteoporosis in 2016, out of the blue. My internist put me on raloxifene for 5 years, which my current endocrinologist says was not what he would have recommended. Whatever—water under the bridge. Since then, my husband and I completed the Roper High Sierra route, and last summer I backpacked to various high altitude places. My spine, rather scoliosed (I scuttle along sideways, like a crab), is at T-1.1, and my left femoral neck is at -3.7. Endocrinologist wants me to consider Evenity. I’m scared of it, given the .8/100 risk of heart attack or stroke. I haven’t had either, yet, and want to keep it that way. I am also considering a once yearly oral bisphosphonate, or the daily Forteo. I like Windyshore’s approach to calibrating her daily dose, and that the med leaves the body quickly. I have taken some falls in the past year, but, luckily, I guess, no fractures. My daughter in law, a family practice doc, says go ahead and take the Evenity. My daughter, an E.D. nurse at a children’s hospital, says go to a functional medicine doc for another opinion. I garden, I hike, I take care of my grandchildren, and feel reasonably okay for my age (a little backache here and there). I feel that I could recover from a fractured hip, if it were replaced promptly (I had a hip replacement in 2017 that seemed pretty easy, compared to the cervical fusion in 2013.) Why can’t they just replace my hip? Why, instead, do I have to go on a med that may destroy my life? My doc won’t answer this question when I pose it.

REPLY
@shhsgirl

I’m new to this forum, and very glad to have found it. I’m 73 and pretty active, or at least my children say so. I was diagnosed with osteoporosis in 2016, out of the blue. My internist put me on raloxifene for 5 years, which my current endocrinologist says was not what he would have recommended. Whatever—water under the bridge. Since then, my husband and I completed the Roper High Sierra route, and last summer I backpacked to various high altitude places. My spine, rather scoliosed (I scuttle along sideways, like a crab), is at T-1.1, and my left femoral neck is at -3.7. Endocrinologist wants me to consider Evenity. I’m scared of it, given the .8/100 risk of heart attack or stroke. I haven’t had either, yet, and want to keep it that way. I am also considering a once yearly oral bisphosphonate, or the daily Forteo. I like Windyshore’s approach to calibrating her daily dose, and that the med leaves the body quickly. I have taken some falls in the past year, but, luckily, I guess, no fractures. My daughter in law, a family practice doc, says go ahead and take the Evenity. My daughter, an E.D. nurse at a children’s hospital, says go to a functional medicine doc for another opinion. I garden, I hike, I take care of my grandchildren, and feel reasonably okay for my age (a little backache here and there). I feel that I could recover from a fractured hip, if it were replaced promptly (I had a hip replacement in 2017 that seemed pretty easy, compared to the cervical fusion in 2013.) Why can’t they just replace my hip? Why, instead, do I have to go on a med that may destroy my life? My doc won’t answer this question when I pose it.

Jump to this post

You'd rather fracture your hip at age 73 than take medication??

REPLY
@shhsgirl

I’m new to this forum, and very glad to have found it. I’m 73 and pretty active, or at least my children say so. I was diagnosed with osteoporosis in 2016, out of the blue. My internist put me on raloxifene for 5 years, which my current endocrinologist says was not what he would have recommended. Whatever—water under the bridge. Since then, my husband and I completed the Roper High Sierra route, and last summer I backpacked to various high altitude places. My spine, rather scoliosed (I scuttle along sideways, like a crab), is at T-1.1, and my left femoral neck is at -3.7. Endocrinologist wants me to consider Evenity. I’m scared of it, given the .8/100 risk of heart attack or stroke. I haven’t had either, yet, and want to keep it that way. I am also considering a once yearly oral bisphosphonate, or the daily Forteo. I like Windyshore’s approach to calibrating her daily dose, and that the med leaves the body quickly. I have taken some falls in the past year, but, luckily, I guess, no fractures. My daughter in law, a family practice doc, says go ahead and take the Evenity. My daughter, an E.D. nurse at a children’s hospital, says go to a functional medicine doc for another opinion. I garden, I hike, I take care of my grandchildren, and feel reasonably okay for my age (a little backache here and there). I feel that I could recover from a fractured hip, if it were replaced promptly (I had a hip replacement in 2017 that seemed pretty easy, compared to the cervical fusion in 2013.) Why can’t they just replace my hip? Why, instead, do I have to go on a med that may destroy my life? My doc won’t answer this question when I pose it.

Jump to this post

Have you done much research on the osteoporosis drugs yet......not just the list of possible side effects listed by the manufacturer? It is also very important to research providers who prescribe. Do they have the training, expertise and experience to prescribe the right drug for you and the understanding that correct drug sequencing is vital .

REPLY
@shhsgirl

I’m new to this forum, and very glad to have found it. I’m 73 and pretty active, or at least my children say so. I was diagnosed with osteoporosis in 2016, out of the blue. My internist put me on raloxifene for 5 years, which my current endocrinologist says was not what he would have recommended. Whatever—water under the bridge. Since then, my husband and I completed the Roper High Sierra route, and last summer I backpacked to various high altitude places. My spine, rather scoliosed (I scuttle along sideways, like a crab), is at T-1.1, and my left femoral neck is at -3.7. Endocrinologist wants me to consider Evenity. I’m scared of it, given the .8/100 risk of heart attack or stroke. I haven’t had either, yet, and want to keep it that way. I am also considering a once yearly oral bisphosphonate, or the daily Forteo. I like Windyshore’s approach to calibrating her daily dose, and that the med leaves the body quickly. I have taken some falls in the past year, but, luckily, I guess, no fractures. My daughter in law, a family practice doc, says go ahead and take the Evenity. My daughter, an E.D. nurse at a children’s hospital, says go to a functional medicine doc for another opinion. I garden, I hike, I take care of my grandchildren, and feel reasonably okay for my age (a little backache here and there). I feel that I could recover from a fractured hip, if it were replaced promptly (I had a hip replacement in 2017 that seemed pretty easy, compared to the cervical fusion in 2013.) Why can’t they just replace my hip? Why, instead, do I have to go on a med that may destroy my life? My doc won’t answer this question when I pose it.

Jump to this post

Current medical training pushes the pharmaceuticals. It’s quick and easy because physicians are not afforded the time to dig deeper into what the core problem really is. Osteoporosis is a systemic bone disease. More complex than Amgen wants you to believe. We are on our own here. Keep searching for a physician who will work with you and that you are comfortable making the decision of which meds if any that you will take. After eighteen months I finally found a specialty medical group that is helping me optimize my hormones first, since I could not tolerate the osteoporosis meds currently on market.

REPLY
@njx58

You'd rather fracture your hip at age 73 than take medication??

Jump to this post

Well, no. But I’m not sure it’s quite like that. Bone density is only one measure of strength. I’ve had enough falls to wonder why I haven’t fractured, I guess. And Evenity seems to have very serious side effects. I’m leaning more toward Forteo (Tymlos).

REPLY
Please sign in or register to post a reply.