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.

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Profile picture for njx58 @njx58

I have consulted with him. He is very knowledgeable and has firsthand experience (his osteoporosis was really bad, and at a young age, and he was a serious athlete.) There are many YouTube interviews with him, as you can see.

He doesn't push medication unless your condition warrants it.

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How long from the time you send in your records to when you have your consultation? I hope it’s not MONTHS but if I have to wait that long, it’s not any worse than scheduling an appointment with my endocrinologist.

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Profile picture for shelldct1 @shelldct1

How long from the time you send in your records to when you have your consultation? I hope it’s not MONTHS but if I have to wait that long, it’s not any worse than scheduling an appointment with my endocrinologist.

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It could be a couple of months, but you can just call them and find out before you book anything. You don't pay in advance, by the way, so that makes it more flexible.

I haven't spoken to him in a year because I'm pretty much on auto-pilot taking Tymlos. I may call him when it comes time to decide what is next.

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Profile picture for oopsiedaisy @oopsiedaisy

I took Fosamax for 5 years and 2 months. I had good results for the first two years with a 33% increase in spine density and a 7% increase in hip bone density after the first two years.

My bone density remained stable for the next three years but I suffered a T8 compression fracture just after the five year mark.

I had no side effects from the medication but also was careful to follow the instructions when taking it.

After the fracture I saw a rheumatologist who put me on Tymlos. After four months my insurance company pulled my pre-authorization and I was switched to generic Forteo. I could not tolerate Forteo and stopped taking it after three months.

I sought a referral to an endocrinologist at that point and received a thorough evaluation. I am now on Evenity and about to receive my second dose on Friday, so far I have not experienced any side effects.

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Sounds like you are doing well with these meds. I was under the impression it was not good to take these after 5+ yrs due to easily fracturing a bone. So when I was told I would only have to take it for two years I was ok with that. Sounds like it your numbers improve significantly they want you to continue to take the meds. I guess I will cross that bridge when I get it it! I was wondering after seeing there are other medication options to choose from why my doctor decided on Fosamax.......could be insurance coverage I suppose. I took my 5th pill this morning and I am still not experiencing any side effects.
I hate the words "compression fracture". Sounds very painful. Thanks so much for sharing your story.

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Profile picture for shirley74 @shirley74

Sounds like you are doing well with these meds. I was under the impression it was not good to take these after 5+ yrs due to easily fracturing a bone. So when I was told I would only have to take it for two years I was ok with that. Sounds like it your numbers improve significantly they want you to continue to take the meds. I guess I will cross that bridge when I get it it! I was wondering after seeing there are other medication options to choose from why my doctor decided on Fosamax.......could be insurance coverage I suppose. I took my 5th pill this morning and I am still not experiencing any side effects.
I hate the words "compression fracture". Sounds very painful. Thanks so much for sharing your story.

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Looking back, I would not take Fosamax for more than three years. It's occurred to me that being on Fosamax for so long might have contributed to my fracture but when I asked my endocrinologist if that might be the case she denied it as a cause. She thought that the Fosamax just stopped working and was not stopping my bone loss.

I won't have another DEXA until next year but I am hoping the anabolic medication plus the resistance training, supplements, and nutrition will have helped.

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Profile picture for oopsiedaisy @oopsiedaisy

Looking back, I would not take Fosamax for more than three years. It's occurred to me that being on Fosamax for so long might have contributed to my fracture but when I asked my endocrinologist if that might be the case she denied it as a cause. She thought that the Fosamax just stopped working and was not stopping my bone loss.

I won't have another DEXA until next year but I am hoping the anabolic medication plus the resistance training, supplements, and nutrition will have helped.

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Thank you for your advice. That is good information and does correlate with other things I have read that the medication does stop helping the bone loss. Do you still get your DEXA every two years while taking the meds? I was wondering if you have to wait two years before knowing if the medication is helping.

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Profile picture for shirley74 @shirley74

Thank you for your advice. That is good information and does correlate with other things I have read that the medication does stop helping the bone loss. Do you still get your DEXA every two years while taking the meds? I was wondering if you have to wait two years before knowing if the medication is helping.

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Typically, the doctor will want a DEXA every year. Along the way, he will likely order blood tests for P1NP and CTX: the two bone markers that indicate if the medication is working.

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Profile picture for njx58 @njx58

Typically, the doctor will want a DEXA every year. Along the way, he will likely order blood tests for P1NP and CTX: the two bone markers that indicate if the medication is working.

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Thank you!

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Profile picture for lilac2025 @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 Lilac,

Thank you for sharing. Pleased to meet you!

I’m new too, and pleased to have found someone in a similar place age, spinal density and preferring the natural route until the next test, then re-evaluate.

I did the REMs test which was encouraging! It indicated my bone quality was fairly good, better than the density. I was not surprised as I am clumsy and fall often yet never break bones. I’ve been told I’m very graceful when falling 😂 Mind you after my Dx I've changed my ways by becoming less clumsy.

I’ve been overwhelmed with all the information, and have met with 3 pharmacists, a physiotherapist, an endocrinologist, a dentist, and decided no drugs or hormones for now. Just improved diet and exercise...And tracking everything...

I’m meeting with my GP next month to arrange more in depth tests.

Have a great weekend☀️

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Profile picture for shirley74 @shirley74

Tomorrow will be my 5th week (dose). I do walk everyday from 10,000 to 15,000 steps a day. I have been feeling a bit more fatigued at the end of the day than I use to be. Of course there could be several good reasons for this as well as just a coincidence. I am 74 so I can find something to complain about most every day! I hope you continue to have good luck with this medication as well.

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Thank you. I hope your doses continue to go well.
Guess I'd better up my game!! I'm 66 and don't walk nearly as much as you do. You've motivated me to shoot for 10,000 steps.

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My suggestion is to get a doctor team which will provide you with the support you are needing! Some people have no side effects. I was not that lucky. However, there are ways to avoid the side effects (like longer infusions, titrating up slowly) a GOOD team is ubber important! I am tolerant of the risk because 7 women I know, fell last winter and ALL broke or fractured bones! That really take you down. You don't heal easily and your muscles atrophy in the process. My advice is to just DO IT - you can always stop or change meds. Some people can't take them later. They also can't have surgery later. So its best to get it out of the way as early as possible. I am on Reclast and Tymlos - a total of 5 years and then I am done for life. I already have GOOD trending numbers in my second year. My bones unexpectedly fell apart in surgery (C5). The Dexa's without the TBS software are not reliable sometimes. I'll take my medicine like a good girl!

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