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

No kidding on the high impact and prone-to-fall activities. I gave up snow skiing this year because of it. To be honest, I'm feeling a big afraid to do anything at all, but have to get over that.

Here are my scores:
LUMBAR SPINE:
T-score = -2.4
Z-score = -0.5

FEMORAL NECK:
T-score = -2.2
Z-score = -0.5

TOTAL HIP:
T-score = -3.5
Z-score = -2.1

FRAX-WHO Fracture Risk Assessment Tool: Treatment is recommended for
patients with a FRAX score (risk calculation) of greater than 20% risk
for major osteoporotic fracture and greater than 3% risk for hip
fracture.

This patient's 10-year probability of fracture calculated by FRAX is:
Major Osteoporotic: 18%
Hip Fracture: 3.5%

Thank you for responding.

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At 68, T score is relevant here and to be considered. Anyone please correct me if this is wrong. Yes, most guideline suggest when frax probability greater than 20% for major or 3-5% for hip, drug therapy to be considered. I mentioned to consider drug therapy when 10% for hip frax probability in the previous reply, is from a specific reading according to an experienced bone doctor. Maybe we should just follow the general guideline here. There is an yt video "anabolic therapy for osteoporosis by felicia cosman" by endocrine society of india official, in which she lays out risk stratification, low total hip BMD belongs to high risk and she gave specific numbers. You could look into that. Cosman has done tremendous amount of work with forteo along with others. My video resolution is very poor for some reason hence I won't attach the link. Maybe same talk by a different video source would give a better resolution. Your frax probabilities for major overall and hip are both near where medicine should be considered...From what I've read, tymlos has a bit advantage over forteo in improving hip/femoral neck. However, a lot of times our insurance as well as our body's response (side effects etc) dictates which drug is to be used.

BTW, I forgot to mention that to protect spine from compression fractures, our posture including twisting upper body and/or exertion with certain posture make a big difference. I garden quite a bit, and have modified quite a bit of my posture ever since my diagnosis.

Best

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@babs10

No kidding on the high impact and prone-to-fall activities. I gave up snow skiing this year because of it. To be honest, I'm feeling a big afraid to do anything at all, but have to get over that.

Here are my scores:
LUMBAR SPINE:
T-score = -2.4
Z-score = -0.5

FEMORAL NECK:
T-score = -2.2
Z-score = -0.5

TOTAL HIP:
T-score = -3.5
Z-score = -2.1

FRAX-WHO Fracture Risk Assessment Tool: Treatment is recommended for
patients with a FRAX score (risk calculation) of greater than 20% risk
for major osteoporotic fracture and greater than 3% risk for hip
fracture.

This patient's 10-year probability of fracture calculated by FRAX is:
Major Osteoporotic: 18%
Hip Fracture: 3.5%

Thank you for responding.

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ps your lumbar and femoral neck t scores are not that bad, but I don't know how to read into the obvious drop in hip t score. Maybe some of the members here know. What my understanding is that after menapausal, the declining of estrogen has most impact on lumber, then hip then femoral neck. That's a generalized trend due to the bone structure at each of these site. Each individual may have different scenarios which impact different sites.

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@mayblin

At 68, T score is relevant here and to be considered. Anyone please correct me if this is wrong. Yes, most guideline suggest when frax probability greater than 20% for major or 3-5% for hip, drug therapy to be considered. I mentioned to consider drug therapy when 10% for hip frax probability in the previous reply, is from a specific reading according to an experienced bone doctor. Maybe we should just follow the general guideline here. There is an yt video "anabolic therapy for osteoporosis by felicia cosman" by endocrine society of india official, in which she lays out risk stratification, low total hip BMD belongs to high risk and she gave specific numbers. You could look into that. Cosman has done tremendous amount of work with forteo along with others. My video resolution is very poor for some reason hence I won't attach the link. Maybe same talk by a different video source would give a better resolution. Your frax probabilities for major overall and hip are both near where medicine should be considered...From what I've read, tymlos has a bit advantage over forteo in improving hip/femoral neck. However, a lot of times our insurance as well as our body's response (side effects etc) dictates which drug is to be used.

BTW, I forgot to mention that to protect spine from compression fractures, our posture including twisting upper body and/or exertion with certain posture make a big difference. I garden quite a bit, and have modified quite a bit of my posture ever since my diagnosis.

Best

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I hear you and thank you for the info. I'll look up the YT video.

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@mayblin

At 68, T score is relevant here and to be considered. Anyone please correct me if this is wrong. Yes, most guideline suggest when frax probability greater than 20% for major or 3-5% for hip, drug therapy to be considered. I mentioned to consider drug therapy when 10% for hip frax probability in the previous reply, is from a specific reading according to an experienced bone doctor. Maybe we should just follow the general guideline here. There is an yt video "anabolic therapy for osteoporosis by felicia cosman" by endocrine society of india official, in which she lays out risk stratification, low total hip BMD belongs to high risk and she gave specific numbers. You could look into that. Cosman has done tremendous amount of work with forteo along with others. My video resolution is very poor for some reason hence I won't attach the link. Maybe same talk by a different video source would give a better resolution. Your frax probabilities for major overall and hip are both near where medicine should be considered...From what I've read, tymlos has a bit advantage over forteo in improving hip/femoral neck. However, a lot of times our insurance as well as our body's response (side effects etc) dictates which drug is to be used.

BTW, I forgot to mention that to protect spine from compression fractures, our posture including twisting upper body and/or exertion with certain posture make a big difference. I garden quite a bit, and have modified quite a bit of my posture ever since my diagnosis.

Best

Jump to this post

It's not your video resolution. There is something up with YouTube. I'll listen to it and not watch.

I wasn't able to post the video because I'm "newly registered" and therefore not eligible to post messages with links and URLs.

Thanks again.

REPLY

It’s tough to know what’s right. Spinal compression fractures concern me the most. But as you mention @babs10 the meds over time are concerning, too.
I’m 69, family history of osteoporosis. I’m mostly a moderate exerciser, but my diet has always included calcium, protein, and I get enough D. My doctor wrote prescriptions for oral alendronate in my late 50s for osteopenia but I hesitated over expectations of stomach issues.

At 67, with osteoporosis, I finally did take it, and couldn’t tolerate it. I had a Reclast infusion in July 2023 and by November 2023 had a 6% increase at spine. The rheumatologist and bone specialist I see at MD Anderson is happy with my numbers, see attached, and recommends that I do another Reclast in 2024, then maybe every other year. I also see a local endocrinologist who does the actual order/infusion for Reclast.

My mother (osteoporosis) and two older sisters (osteopenia) have never broken a hip - even with some falls that would have caused broken bones in many others. My mother did have some compression fractures in her back, diagnosed at about age 86. Some of the bone density drugs are better at building/preserving the spine, others build more femur/hip bone.

I will definitely continue to take what my doctor recommends as these drugs deter bone metastasis if breast cancer spreads. That’s worth it to me.

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I would take Forteo. You most likely will have no side effects, but if you do they will go away fairly quickly. I have been taking Forteo for one and a half years and if saved me from breaking my hip when I fell directly on my hip on a large rock on my beach last summer.

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@triciaot

It’s tough to know what’s right. Spinal compression fractures concern me the most. But as you mention @babs10 the meds over time are concerning, too.
I’m 69, family history of osteoporosis. I’m mostly a moderate exerciser, but my diet has always included calcium, protein, and I get enough D. My doctor wrote prescriptions for oral alendronate in my late 50s for osteopenia but I hesitated over expectations of stomach issues.

At 67, with osteoporosis, I finally did take it, and couldn’t tolerate it. I had a Reclast infusion in July 2023 and by November 2023 had a 6% increase at spine. The rheumatologist and bone specialist I see at MD Anderson is happy with my numbers, see attached, and recommends that I do another Reclast in 2024, then maybe every other year. I also see a local endocrinologist who does the actual order/infusion for Reclast.

My mother (osteoporosis) and two older sisters (osteopenia) have never broken a hip - even with some falls that would have caused broken bones in many others. My mother did have some compression fractures in her back, diagnosed at about age 86. Some of the bone density drugs are better at building/preserving the spine, others build more femur/hip bone.

I will definitely continue to take what my doctor recommends as these drugs deter bone metastasis if breast cancer spreads. That’s worth it to me.

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@triciaot your numbers are pretty darn good! It seems yours is a case where Reclast for maintenance is working well. Those of us with worse scores need a bone builder first. And I get the cancer aspect (I also have had breast cancer and look forward to that potential benefit from Reclast). Good luck!

ps It's a good reminder that a bisphosphonate can be appropriate for front line treatment. So often we say bone builder first. But with scores hovering around -2.5 or even better, it seems Reclast is a good choice.

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Have you researched the LIFTMOR study? Also, my functional medicine doctor added somethings you didn’t mention to the supplement cocktail, Boron @3mg, Zinc @ 15 mg, Copper @.9 mg, Manganese @1.8-2.3 mg, Selenium @55 mcg and a B complex.
Good luck on your journey and remember this is your journey. Do what you’re comfortable with.

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@windyshores

@babs10 Forteo builds quality bone. It is an anabolic. Prolia, on the other hand, is an anti-resorptive which affects turnover. It is very hard to get off, and my docs try to avoid using Prolia at this point because of the intense rebound.

In my experience falls have not caused fractures. Instead twisting and bending do. But that's me. I did have a spinal fracture a long time ago from a truly traumatic fall when my back landed on the corner of steps, but my DEXA was okay then. I used to think the same way: I fell and nothing happened so my bones must be okay. Then I made one unwise movement (with DEXA's similar to yours) and got 2-3 lumbar fractures- so painful and disabling. I only say that to encourage you to try a med!

Forteo is a good drug. You follow it with Reclast or Fosamax, but those "lock in" gains and you can probably take a med break after one or two doses. If you for any reason cannot tolerate Forteo, you might get authorization for Tymlos, which I prefer because the dose is adjustable and can be ramped up. But many tolerate Forteo just fine. These meds both give excellent gains.

You can do a trabecular bone score with a DEXA to ascertain bone quality if you can find a place that does that, but with -3.5 not sure how relevant that is!

You might want to look into Keith McCormick's book "Great Bones" or Dr. Ben Leder's video "Combinations and Sequencing" on YouTube.

I am a fan of Tymlos. I am struggling with Evenity. Grateful for my two years on Tymlos and Forteo is similar. For either the companies also offer financial assistance if you meet income guidelines. I got 18 months of Tymlos for free.

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windyshores,
Bending and twisting is my biggest fear. I had PT last year after my total hip replacement and I told the PT that osteoporosis was my bigger concern. When I told him that I needed help avoiding a BLT (bend,lift,twist), he didn’t know what I was talking about. I explained that I must pick up my 12 pound, blind, elderly dog several times a day. He taught me how to do this correctly. So far, so good.

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What are your concerns about forteo?
Will this be your first osteoporosis drug?

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