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.

@rola

I have thought about that, but I just had the DXA in October and I am sure it wouldn't be covered yet. I wish I'd known about it earlier and that's what I'll do from now on. I found one place near me that offers it. Thanks so much for suggesting it - much appreciated - this forum is the best.

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I am at a point with my DEXA scores that may require me to take medication. If anyone has taken Actonel, would you share your experience? Adverse side effects?

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Yes I agree completely. I just went off Fosamax because it hasn't helped one bit. Now I'm not on anything and wondering what I'm going to do. I think sometimes these docs just push the prescription and then forget about you......

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@babs10

I have thought about that, but I just had the DXA in October and I am sure it wouldn't be covered yet. I wish I'd known about it earlier and that's what I'll do from now on. I found one place near me that offers it. Thanks so much for suggesting it - much appreciated - this forum is the best.

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Not all places even have the TBS score which is puzzling. My hospital has it but just in the last 2 years. I'm not sure why they all don't offer it.

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@yogagirl57

Not all places even have the TBS score which is puzzling. My hospital has it but just in the last 2 years. I'm not sure why they all don't offer it.

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I just realized that the TBS is a score that can come from the DXA. I thought it was a whole other test! Yes, it's so strange that it's not an integral part of the process - more information is better than less.

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@normahorn

My DEXA report has 2 FRAX scores.
Major Osteoporotic Fracture: 33.9 %
Hip Fracture: 16.4 %

Yet my lowest T-score was for Right Femoral Neck

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Mine exactly! I started hrt. Will see if it’s doing anything in a couple of months. Will consider Tymlos. My NTX is 14 and my p1np is 51, I’d like them both to be a little lower. I’ve also had a lumbar fracture after lifting sixty pounds.

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@sallyj2

Mine exactly! I started hrt. Will see if it’s doing anything in a couple of months. Will consider Tymlos. My NTX is 14 and my p1np is 51, I’d like them both to be a little lower. I’ve also had a lumbar fracture after lifting sixty pounds.

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I'm so impressed you know your two scores. I haven't been able to get those tests approved yet so may have to go rogue with a resource someone else shared here.

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@babs10

I'm so impressed you know your two scores. I haven't been able to get those tests approved yet so may have to go rogue with a resource someone else shared here.

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I went to Any Lab Test Now.

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@sallyj2

I went to Any Lab Test Now.

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I don't see either one of the tests on their list of options, but it says to call if you can't find what you are looking for. Thank you for the resource.

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