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.

@debbie1956

It is difficult to know how much of a role the supplements played in my slight bmd increase from -3 to 2.6 spine over a 10-month period. I suspect that the bhrt I started about 6 months after the supplements has had the largest impact. Had I not taken the bhrt, I could confirm whether or not these supplements with high protein diet helped. Keith McCormick refers to his patients CTX came down with supplements, diet and exercise alone they're OP was not too severe. I am confident that the bhrt was the main reason for my CTX bone turnover rate reduction from 688 to 138 over 8 month period. It is true that these supplements are expensive, but I reduced the dosages by half after reading Keith McCormick's suggested dosages which greatly reduced my costs. I also order from iherb whose prices are the lowest I've found for good quality. I am small like you at 5'1 and a half, 125 lbs. My REMS Echolight shows my bone quality still quite good as well and I am waiting to have TBS. I don't wish to take medication either and have so far not fractured. It would seem to me that bone quality and stopping further progression is most important. My progression of bmd loss appears to have stopped with a slight gain even. I am hoping to maintain this over the long term sounds like cheap monitoring with bmd scans and bone marker tests.

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I apologize for the errors in my last post with voice text. I meant to say I'm hoping to maintain this over the long term and will keep monitoring with bone scans and bone marker tests.

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@lilac2025

I am new here, just as a few minutes ago. I can empathize with not wanting to start drug treatment. I only recently found out I have osteoporosis at age 65. And, for my age, my doctor said my lower spine was severe, but femoral neck of my hip not as bad. In any case, what a shock! But, like you, I have tried not to panic and look at the big picture. I’ve been researching the topic, purchasing books and listening to bone health experts for two months now . . . . I’ve learned that various types of weight training and IMPACT exercises can help increase bone density. But the most important thing I learned is that a DEXA score doesn’t PREDICT a fracture. It just alerts you to having more vulnerable bone density that “could” fracture. But what holds our bones in place, in part? Muscle! And, muscle strengthening pulling at bone stimulates bone growth if there’s enough impact and pull. But I’m likely preaching to the choir, as you sound like you’ve also looked into all of this to take a holistic path, as I am. Balance exercises help us stay up to prevent falls and keep our balance. In any case, this is the first entry I’ve written on here, so just learning about it all. I apologize if I’ve errored in any way. I’ve added new foods to my diet that are helpful, also. I’m sure you know — and I’m like you, that we need to educate ourselves and do whatever we can through education, diet & exercise to prolong any drug interventions. I was given two years to give it my best, without medications — according to my doc, before I get another DEXA to see if there’s any improvement. But The DEXA isn’t the only marker of bone health! There are OTHER tests that help assess bone remodeling — how much bone we are currently losing and how much we’re gaining. This was VERY important for me to know NOW. Once I found out about these tests - I was determined to get them! (even if insurance won’t cover them). My general physician agreed to order these on my account, though it’s not a “routine” test given. I’m waiting on the CTX and P1NP boner marker tests, just to see how much bone I’m losing and how much I’m gaining now. (I had been going to the gym for the past year, I might add). Everyone who has osteopenia or osteoporosis, even without being on medications, should know the health of their own bones, so that you can assess it in 8 months or more to see if the changes you make, make a difference. I’ve learned that what’s important is the RATIO of these tests. I will start another thread on another day about how frustrating it is to find anyone who knows how to interpret these tests!!! The health care system, at least in my area, is lacking in so far as helping those who do NOT want to go on medications — and offering tests to assess bone health like these. I’m not too happy about that and rather frustrated, to be honest! I see you wrote a year ago. How are you doing now?? I have no idea if you can private message people on here, as I’m new at this. Keep on doing what you’re doing and I wish you all the best!

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Your comment is one of the BEST I’ve read on this board. I was diagnosed recently at 63 YO with osteoporosis. I was surprised and shocked. I am 100 pounds, eat a fairly healthy diet, exercise 3 times a week, do yoga, and golf . I have read Keith McCormick’s “Great Bones”, along with listening to many podcasts on medications, exercises, etc. Just like you, I am doing lots of research. I am waiting for my medical records so I can send them to Dr McCormick because I would like to do a consultation with him. In July, I see an endocrinologist. I hope she will do lots of lab work to see what is causing my OP before putting me on medication. I would like to try a natural path (strength training, supplements, better diet) for a year. If things don’t get better, then maybe I will go on medication. I am hoping Dr McCormick will be able to provide some insight into what is causing my osteoporosis and how to improve my bone density. Good luck to you and I hope you can keep us updated on your progress.

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@lilac2025

I am new here, just as a few minutes ago. I can empathize with not wanting to start drug treatment. I only recently found out I have osteoporosis at age 65. And, for my age, my doctor said my lower spine was severe, but femoral neck of my hip not as bad. In any case, what a shock! But, like you, I have tried not to panic and look at the big picture. I’ve been researching the topic, purchasing books and listening to bone health experts for two months now . . . . I’ve learned that various types of weight training and IMPACT exercises can help increase bone density. But the most important thing I learned is that a DEXA score doesn’t PREDICT a fracture. It just alerts you to having more vulnerable bone density that “could” fracture. But what holds our bones in place, in part? Muscle! And, muscle strengthening pulling at bone stimulates bone growth if there’s enough impact and pull. But I’m likely preaching to the choir, as you sound like you’ve also looked into all of this to take a holistic path, as I am. Balance exercises help us stay up to prevent falls and keep our balance. In any case, this is the first entry I’ve written on here, so just learning about it all. I apologize if I’ve errored in any way. I’ve added new foods to my diet that are helpful, also. I’m sure you know — and I’m like you, that we need to educate ourselves and do whatever we can through education, diet & exercise to prolong any drug interventions. I was given two years to give it my best, without medications — according to my doc, before I get another DEXA to see if there’s any improvement. But The DEXA isn’t the only marker of bone health! There are OTHER tests that help assess bone remodeling — how much bone we are currently losing and how much we’re gaining. This was VERY important for me to know NOW. Once I found out about these tests - I was determined to get them! (even if insurance won’t cover them). My general physician agreed to order these on my account, though it’s not a “routine” test given. I’m waiting on the CTX and P1NP boner marker tests, just to see how much bone I’m losing and how much I’m gaining now. (I had been going to the gym for the past year, I might add). Everyone who has osteopenia or osteoporosis, even without being on medications, should know the health of their own bones, so that you can assess it in 8 months or more to see if the changes you make, make a difference. I’ve learned that what’s important is the RATIO of these tests. I will start another thread on another day about how frustrating it is to find anyone who knows how to interpret these tests!!! The health care system, at least in my area, is lacking in so far as helping those who do NOT want to go on medications — and offering tests to assess bone health like these. I’m not too happy about that and rather frustrated, to be honest! I see you wrote a year ago. How are you doing now?? I have no idea if you can private message people on here, as I’m new at this. Keep on doing what you’re doing and I wish you all the best!

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Hello,
Thanks for that important information. I am 58 and I discovered I had osteoporosis about 18 months ago and have been researching ever since.
My femoral neck is -2.2. My BMI is 20.6 and was told it is highly recommended
that I start medicine. I was told to start on Reclast but after researching it I discovered if anything goes wrong it stays in your system and have to suffer the consequences which seemed severe. I decided to go on Forteo because it was an anabolic medication meaning it promotes bone formation and a well known endocrinologist said it's best to start with an anabolic drug. He also said to NOT start with Fossomax-the sequence of medication is extremely important.
Unfortunately my health insurance does not cover Forteo at all! I may have to start with Tymlos instead. I may have no choice. I discovered the side effects of Tymlos are belly fat, joint pain, tiredness, diarrhea, fatigue and bone or joint pain. I asked my nurse practitioner about utilizing other tests and she did not know anything about alternate tests.
I am seeing Dr Chatterjee in Columbus OH and she is Dr Chatterjees nurse practioner. I know I need to go on medicine but very hesitant.
Thanks for the info you provided it truly helped.

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@gravity3

If you decide on starting meds, a question I might ask my (endocrinologist?) is......why not a bone builder first? I'd want to know the prescribing physician's rationale.
It is my understanding that sequencing these drugs is very important and that a bisphosphonate before may blunt the positive effects of a bone builder (tymlos, forteo and evenity).

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I discovered the same thing!

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@sibleymeister999

Hello,
Thanks for that important information. I am 58 and I discovered I had osteoporosis about 18 months ago and have been researching ever since.
My femoral neck is -2.2. My BMI is 20.6 and was told it is highly recommended
that I start medicine. I was told to start on Reclast but after researching it I discovered if anything goes wrong it stays in your system and have to suffer the consequences which seemed severe. I decided to go on Forteo because it was an anabolic medication meaning it promotes bone formation and a well known endocrinologist said it's best to start with an anabolic drug. He also said to NOT start with Fossomax-the sequence of medication is extremely important.
Unfortunately my health insurance does not cover Forteo at all! I may have to start with Tymlos instead. I may have no choice. I discovered the side effects of Tymlos are belly fat, joint pain, tiredness, diarrhea, fatigue and bone or joint pain. I asked my nurse practitioner about utilizing other tests and she did not know anything about alternate tests.
I am seeing Dr Chatterjee in Columbus OH and she is Dr Chatterjees nurse practioner. I know I need to go on medicine but very hesitant.
Thanks for the info you provided it truly helped.

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It is important that we all need to remember that named side effects of any drug are only possible not inevitable.

REPLY
@sibleymeister999

Hello,
Thanks for that important information. I am 58 and I discovered I had osteoporosis about 18 months ago and have been researching ever since.
My femoral neck is -2.2. My BMI is 20.6 and was told it is highly recommended
that I start medicine. I was told to start on Reclast but after researching it I discovered if anything goes wrong it stays in your system and have to suffer the consequences which seemed severe. I decided to go on Forteo because it was an anabolic medication meaning it promotes bone formation and a well known endocrinologist said it's best to start with an anabolic drug. He also said to NOT start with Fossomax-the sequence of medication is extremely important.
Unfortunately my health insurance does not cover Forteo at all! I may have to start with Tymlos instead. I may have no choice. I discovered the side effects of Tymlos are belly fat, joint pain, tiredness, diarrhea, fatigue and bone or joint pain. I asked my nurse practitioner about utilizing other tests and she did not know anything about alternate tests.
I am seeing Dr Chatterjee in Columbus OH and she is Dr Chatterjees nurse practioner. I know I need to go on medicine but very hesitant.
Thanks for the info you provided it truly helped.

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Most people do not have side effects. We tend to hear from the people who do. I've been on Tymlos for over a year and haven't had any. I'm not unusual. It has done wonders for me.

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I am learning so much by reading these comments. However, I am looking for comments from anyone taking Fosamax. Of course, the list of side effects scare most anyone, but so far, so good for me. Any comments will be much appreciated.

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@shirley74

I am learning so much by reading these comments. However, I am looking for comments from anyone taking Fosamax. Of course, the list of side effects scare most anyone, but so far, so good for me. Any comments will be much appreciated.

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Did the recommended limit of 5 years fosomax/alendronate. No problems but I followed the instructions without deviation

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My numbers are the same and I am considering stopping meds myself because of reactions to Prolia and fosamax. I almost think I sound just quit but the drs keep encouraging me not to. It’s so confusing is t it.?

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@gravity3

Did the recommended limit of 5 years fosomax/alendronate. No problems but I followed the instructions without deviation

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I was told I would only have to take it for two years.....happy about that. I do, most definitely, follow the instructions very closely and carefully. I have noticed there are several different kinds of bone medications and have wondered why he picked Fosamax, but being I am not having any noticable side effects maybe I should not bother to ask. Thanks for your reply.

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