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.

@babs10

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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Yes, good idea to call. They send to outside labs. I think a lab in Arizona processed my p1np.

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This is so helpful. Thank you again. Would you mind sharing how much it cost? I don't know what to expect.

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@babs10

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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One would think!

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@sallyj2

FYI, my lumbar fracture occurred while lifting heavy weights.

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Based on your most unfortunate experience, if you had it to do over, how much weight would you lift? I'm afraid to start beyond light hand weights for this very reason.

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Okay, it looks like you have a lot of good advice here, but I'm going to jump in anyway. I have a presentation that I think will help you wade through the various options on treatment to take you down from -3.5 to a safe zone and then how to manage your treatment for the rest of your life. It's based on a presentation from osteoporosis expert Dr. Michael McClung from last year. I present to a BHOF support group called Bone Buddies. It's the "New to Osteoporosis" video at the 27:28 mark. youtube.com/@michaellavacot
Good luck!

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@babs10

Based on your most unfortunate experience, if you had it to do over, how much weight would you lift? I'm afraid to start beyond light hand weights for this very reason.

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I was told 10 pounds going forward, plus lots of resistance, much of which I do in water, walking is much harder in water, and weight bearing, plus lots of specific targeted exercises with many reps.

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@michaellavacot

Okay, it looks like you have a lot of good advice here, but I'm going to jump in anyway. I have a presentation that I think will help you wade through the various options on treatment to take you down from -3.5 to a safe zone and then how to manage your treatment for the rest of your life. It's based on a presentation from osteoporosis expert Dr. Michael McClung from last year. I present to a BHOF support group called Bone Buddies. It's the "New to Osteoporosis" video at the 27:28 mark. youtube.com/@michaellavacot
Good luck!

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Thanks so much - I am watching now and appreciate you sharing your presentation.

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@babs10

This is so helpful. Thank you again. Would you mind sharing how much it cost? I don't know what to expect.

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I had p1np and nyc done with lots if routine labs, cmp, cbc, tsh, d, etc. Think it was about $600, most of that would be covered by insurance and are inexpensive tests, so I’m thinking the p1np and ntx was at least $500. If you call Any Lab Test they will give you prices in advance,

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@michaellavacot

Okay, it looks like you have a lot of good advice here, but I'm going to jump in anyway. I have a presentation that I think will help you wade through the various options on treatment to take you down from -3.5 to a safe zone and then how to manage your treatment for the rest of your life. It's based on a presentation from osteoporosis expert Dr. Michael McClung from last year. I present to a BHOF support group called Bone Buddies. It's the "New to Osteoporosis" video at the 27:28 mark. youtube.com/@michaellavacot
Good luck!

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I have a few follow up questions after watching your presentation - do you prefer I post them here or would you prefer I message you privately? I don't see the option to send a private message on the forum so I'd need your email address (I guess?).

Thanks.

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@babs10

Based on your most unfortunate experience, if you had it to do over, how much weight would you lift? I'm afraid to start beyond light hand weights for this very reason.

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I have not had an unfortunate experience…YET, thank goodness, but I work with a very experienced and cautious personal trainer. With. -3.2 lumbar and -1.9 femur, I started about 18 months ago with mostly 5 and 8 pound dumbbells and am presently using mostly 12, 15 and 20 pounders. I use these with squats, overhead presses, curls, deadlifts, rows, lunges, etc. I workout once a week with the trainer and duplicate the exercises at home. Since I do not have a barbell set, I’m not using that yet, but I have used a couple of machines at his gym….inclined leg press up to my own weight, and a few cable exercises with anything from 30-60 pounds. So nothing too ridiculously heavy, a very small start and very gradual increase, and adapting when needed for weak wrists and an occasional cranky knee. The MOST important thing is FORM and learning to properly use your core, which requires someone with experience to spot you and give feedback with consistent prompting. I would never attempt anything like this without professional guidance. It’s the best money I have ever spent!

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