What would you do? Medication.

Posted by babs10 @babs10, Feb 12 7:18pm

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

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

You need to talk "life plans" with the doc's based on their expert diagnosis. I had a -4.0 on my bone scan over 5 years ago. I get Prolia shots ever 6 months, take Calcitrol tabs daily and OTC calcium supplements for my bones. I also like to be active and do things. My last bone scan around a years ago showed -2.0. So things have improved!!! I don't do as much exercising as you sound like you do but I am 68 with my second organ transplant over the past 24 years. My problem seems to be tied to calcium absorption. The doc found I had parathyroid diease. I had surgery to have one of the 4 parathyroids removed in 35 min surgery. That has helped too.

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I’ve done telehealth visits with both my endocrinologist and rheumatologist for bone density issues. Works good - it’s not Mayo Clinic but some of the same issues apply. I do blood work a week before the telehealth. For one doctor, I do labs at a local clinic and he gets results in Houston.
Works best if the doc is comfortable on video. My endocrinologist is not, and our conversations are short. Rheumatologist and I can have a relaxed question and answer time on video.
With the surgeon and my PCP, both on MyChart, I send photos of body parts I want them to look at (sutures, inflamed skin, etc). My thought is that if they think it is a critical issue that they need to see it in person, they’ll make room in their schedule for me.

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I was headed for Reclast after Tymlos but took a detour with Evenity. I may just do 3-4 months to build more and then do Reclast. I have been told med breaks will then be possible with monitoring.

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@bobweller

You need to talk "life plans" with the doc's based on their expert diagnosis. I had a -4.0 on my bone scan over 5 years ago. I get Prolia shots ever 6 months, take Calcitrol tabs daily and OTC calcium supplements for my bones. I also like to be active and do things. My last bone scan around a years ago showed -2.0. So things have improved!!! I don't do as much exercising as you sound like you do but I am 68 with my second organ transplant over the past 24 years. My problem seems to be tied to calcium absorption. The doc found I had parathyroid diease. I had surgery to have one of the 4 parathyroids removed in 35 min surgery. That has helped too.

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I'm starting to wonder about the "experts." I've had 2 opinions so far and I know a lot more than either of them, much less a life plan. It's great that you could point to something tangible (the parathyroid) as an etiology for OP. I can't get my endo to approve the CTX or P1NP tests - it is not an unreasonable request so I'm upset.

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@babs10, I don’t know for certain that Mayo has telehealth but was told that by my pain doctor so felt it was reliable information. FYI, I met with an endocrinologist today who said that her recommendation for me after the Tymlos would be IV Reclast not Prolia. Her reasoning was twofold - Prolia is taken forever after an anabolic drug and because I had 2 osteoporotic fractures while on Prolia

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I am where you are only in the hip, so very reluctant to start Tymlos or Forteo. If I had started what my endo suggested years ago I’m afraid my picture would look worse than it does. Had I listened to Obgyn, I would likely be better. After one lumbar fracture with kyphoplasty, I’ve started hrt. I had taken progesterone for years and still fractured. I’ve added estradiol and estriol and about to add testosterone. The estrogens for antiresorptive quality and the testosterone for building muscle and hopefully a little bone. I will stay in likely for life with blessings from my oncologist and cardiologist, endo finally on board. It is old news that it’s ever too late to start transdermal hrt. Each individual is different.

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@babs10

I'm starting to wonder about the "experts." I've had 2 opinions so far and I know a lot more than either of them, much less a life plan. It's great that you could point to something tangible (the parathyroid) as an etiology for OP. I can't get my endo to approve the CTX or P1NP tests - it is not an unreasonable request so I'm upset.

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Find a functional medicine Dr or Obgyn who will order the tests or a lab that will order for you. I had the same problem. It’s amazing how much we have to do for ourselves.

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@sallyj2

I am where you are only in the hip, so very reluctant to start Tymlos or Forteo. If I had started what my endo suggested years ago I’m afraid my picture would look worse than it does. Had I listened to Obgyn, I would likely be better. After one lumbar fracture with kyphoplasty, I’ve started hrt. I had taken progesterone for years and still fractured. I’ve added estradiol and estriol and about to add testosterone. The estrogens for antiresorptive quality and the testosterone for building muscle and hopefully a little bone. I will stay in likely for life with blessings from my oncologist and cardiologist, endo finally on board. It is old news that it’s ever too late to start transdermal hrt. Each individual is different.

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FYI, my lumbar fracture occurred while lifting heavy weights.

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I didn't know it was old news that it's never too late to start transdermal HRT and will look into that. Thanks so much for weighing in.

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@sallyj2

Find a functional medicine Dr or Obgyn who will order the tests or a lab that will order for you. I had the same problem. It’s amazing how much we have to do for ourselves.

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Right? You have to be your own expert and advocate. I wonder how much these MDs actually research and know what they are talking about.

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