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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I regret not being more aggressive from the get-go when I was first diagnosed with mild osteoporosis. My PCP prescribed Boniva which I didn't tolerate (GI issues). I went off it and did only supplements for a year. My follow up Dexa scan showed severe deterioration. At that point I was referred to a rheumatologist who recommended Evenity. This drug is usually not given to someone with only mild osteoporosis and I believe you have to try an oral drug first.

My mistake was not seeing a specialist after I failed to tolerate the Boniva. Like many people, I made the mistake of thinking that diet and supplements will "fix" the osteoporosis. They don't. They might only help to prevent further deterioration. I have a friend with mild osteoporosis and she's been able to maintain her bone density with just supplements and diet. But if you have severe osteoporosis, calcium and diet will not rebuild bone. I didn't realize this, and I lost precious time fiddling around with supplements when I should have been seeing a specialist.

In my case, my mother had fractures of the hip, arm/wrist and spine. I am built exactly like her--small boned, thin, etc. So I was motivated to go on drug treatment despite the risks. I'll be getting my 8th injection in a week. I've had no side effects except for soreness at the injection site.

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Profile picture for followheart87 @followheart87

I regret not being more aggressive from the get-go when I was first diagnosed with mild osteoporosis. My PCP prescribed Boniva which I didn't tolerate (GI issues). I went off it and did only supplements for a year. My follow up Dexa scan showed severe deterioration. At that point I was referred to a rheumatologist who recommended Evenity. This drug is usually not given to someone with only mild osteoporosis and I believe you have to try an oral drug first.

My mistake was not seeing a specialist after I failed to tolerate the Boniva. Like many people, I made the mistake of thinking that diet and supplements will "fix" the osteoporosis. They don't. They might only help to prevent further deterioration. I have a friend with mild osteoporosis and she's been able to maintain her bone density with just supplements and diet. But if you have severe osteoporosis, calcium and diet will not rebuild bone. I didn't realize this, and I lost precious time fiddling around with supplements when I should have been seeing a specialist.

In my case, my mother had fractures of the hip, arm/wrist and spine. I am built exactly like her--small boned, thin, etc. So I was motivated to go on drug treatment despite the risks. I'll be getting my 8th injection in a week. I've had no side effects except for soreness at the injection site.

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@followheart87

What is the plan to keep the gains from Evenity when you complete the 12 months?

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My doctor is planning Reclast infusions, once a year for 5 years.

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I should add that I'll be 75 after finishing the 5 years of Reclast. My mother started having fractures in her early 80s, so I feel thankful that I headed it off and hopefully will be in better shape approaching my 80s. Her Dexa scan results were significantly better than mine too. I know you can't correlate Dexa scan results with fractures but it was an ominous warning to me when my results came back with significant deterioration.

I saw my mother suffering with compression fractures of the spine in her last 2 years. She was on narcotics for the pain. She was not a surgical candidate for a vertebroplasty as she had a bad heart. I feel it's prudent for me personally to try Evenity.

I'm not the kind of person who wants to take medications but I felt the benefits were worth the risks. It's an individual decision. There's an osteoporosis fracture calculator (the FRAX calculator) online which helps to stratify your risk. Some people can "get away with" taking just supplements. They might not have a significant risk profile. In my case, I do.

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Profile picture for followheart87 @followheart87

My doctor is planning Reclast infusions, once a year for 5 years.

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@followheart87,
our mother's didn't have the advantage of of the pth medications.
While Reclast is much stronger than previous bisphosphonates, Reclast and the five year plan make me wonder if you are seeing an endocrinologist.
It is common now to start with a bone building drug before taking antiresorptives.
You might look at Forteo and Tymlos before beginning Reclast.
best wishes

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