1. < Osteoporosis & Bone Health

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.

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babs10 | @babs10 | Feb 13 7:04am
In reply to @susanfalcon52 "windyshores, Bending and twisting is my biggest fear. I had PT last year after my total..." + (show)
@susanfalcon52

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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Form is so important. I take care of my grand child 2x a week - 19 wiggly pounds so I am extremely mindful since the diagnosis. I need to see a PT or find myself a knowledgable trainer. I do a lot more bending and twisting than anything that would cause me to fall so I understand exactly what you're saying.

REPLY
windyshores | @windyshores | Feb 13 7:04am
In reply to @susanfalcon52 "windyshores, Bending and twisting is my biggest fear. I had PT last year after my total..." + (show)
@susanfalcon52

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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Wow so glad you can care for your dog!

I should amend my comment that of course certain falls can cause fractures. But for spine, twists and bending did me in and docs agreed that was the biggest risk for spine. I don't want to fall on hip though! Considering hip pads!

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babs10 | @babs10 | Feb 13 7:22am

Yes, first drug. My concerns:

1. No mention of any kind of long term plan after Forteo
2. Side effects whatever they could be since we are all different
3. Could Forteo possibly negatively impact what I believe are strong bones despite my low BMD score?

Thanks.

REPLY
3 replies
babs10 | @babs10 | Feb 13 7:24am
In reply to @cpd54 "Have you researched the LIFTMOR study? Also, my functional medicine doctor added somethings you didn’t mention..." + (show)
@cpd54

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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No, I don't know that study, but will definitely look it up.

Thanks for the supplement list. My kitchen is starting to look like an old person lives here. LOL.

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windyshores | @windyshores | Feb 13 7:37am
In reply to @babs10 "Yes, first drug. My concerns: 1. No mention of any kind of long term plan after..." + (show)
@babs10

Yes, first drug. My concerns:

1. No mention of any kind of long term plan after Forteo
2. Side effects whatever they could be since we are all different
3. Could Forteo possibly negatively impact what I believe are strong bones despite my low BMD score?

Thanks.

Jump to this post

@babs10 again Forteo and Tymlos build quality bone. There will be a strong foundation to build on. If side effects are not tolerable you can try for an authorization for Tymlos but most do fine with Forteo. Generally Reclast is recommended after Forteo, but it doesn't have to be long term. If you don't react well to Reclast, alendronate is often used (Fosamax) or Actonel.

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glojo (Gloria) | @glojo | Feb 13 8:41am
In reply to @windyshores "@babs10 Forteo builds quality bone. It is an anabolic. Prolia, on the other hand, is an..." + (show)
@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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Can you explain how you are struggling with Evenity? Side effects? Approval? One reason I hesitate to start Tymlos is because I am not yet convinced of the best follow up.

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1 reply
gravity3 | @gravity3 | Feb 13 9:18am
In reply to @babs10 "Yes, first drug. My concerns: 1. No mention of any kind of long term plan after..." + (show)
@babs10

Yes, first drug. My concerns:

1. No mention of any kind of long term plan after Forteo
2. Side effects whatever they could be since we are all different
3. Could Forteo possibly negatively impact what I believe are strong bones despite my low BMD score?

Thanks.

Jump to this post

What did your endocrinologist have to say to your questions?

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1 reply
gravity3 | @gravity3 | Feb 13 9:24am

Of course each body is different but this is my experience with forteo. I was on it for the full 2 years.
Incredibly to manage the injections..tiny little needle. No noticable side effects for the entire two years. Check with more knowledgeable members of the group on sequencing or get Dr. McCormicks book Great bones. Good luck

..

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windyshores | @windyshores | Feb 13 9:46am
In reply to @glojo "Can you explain how you are struggling with Evenity? Side effects? Approval? One reason I hesitate..." + (show)
@glojo

Can you explain how you are struggling with Evenity? Side effects? Approval? One reason I hesitate to start Tymlos is because I am not yet convinced of the best follow up.

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@glogo I am doing Evenity after Tymlos but if your scores improve enough, Reclast would be recommended by the docs I see. I would get on Tymlos and then you have two years to explore follow-up. Some do Prolia, but there are issues with getting off and you do Reclast anyway. Your docs can guide you as well at the book "Great Bones" and various videos. Reclast is used the most often I think and you can take med breaks depending on monitoring, so it's not forever.

Not many do Evenity after an anabolic but my femur neck was still -3.6 so I pestered my doc. I have significant side effects but most people don't have any. I am unusually sensitive and have many other health issues.

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Rubyslippers | @triciaot | Feb 13 10:04am
In reply to @windyshores "@triciaot your numbers are pretty darn good! It seems yours is a case where Reclast for..." + (show)
@windyshores

@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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Sometimes what I think I’m expressing in my post gets mixed up with too many words.
I wanted to share that - good diet and adequate exercise does not necessarily protect some of us. Osteoporosis is not a failure of following diet/exercise protocols.
- that Reclast can bring numbers up - I’d question whether recent declines in bone density respond better than those that have been very low for many years. There are many examples of chronic conditions where the body no longer responds to treatment as would be expected when earlier treatment is started. I realize my numbers at 2.9, 2.8 were not as low, but a very recent drop into the -3s might be more easily recovered. Something to consider.
- that drugs affect change more/less in different areas. A review of protocols/outcomes showed that a combination therapy of Forteo and Reclast had a higher bone density rise; the Forteo built back more in the hip and Reclast built more in the spine. Daily oral alendronate has been shown to block the bone from benefit from a bone builder like Forteo. But the study I looked at showed that a yearly infusion of the biphosphate did not have the same action in women who were also taking Forteo.
I’ll try to be more careful. I didn’t want to imply that a bone builder wasn’t needed.

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