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.

@gravity3

How old are you and how many years post menopause? I am exploring this too. I am almost 76. Early menopause at 39.

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68; menopause 49.

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@gravity3

What drug did you transition to after prolia?

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Reclast and then a holiday. Now on Evenity to build new bone, with no issues so far. Prolia and Reclast maintain bone. Evenity (and tymlos and Forteo) build new bone, but you have to follow it for a time with one of the other drugs that maintains bone in order to keep what you gained. I am 74, by the way, and have needed to treat my bones for 10 years. My only lingering side effects were from monthly from which I had bad reflux. As a singer, that didn’t work for me, though it helped my bones! Prolia did same thing with only two doses per year and no issues. Best to you. My Medicare B and supplement G cover the total cost of Evenity, which I receive in the office, but my D would only cover a portion of Tymlos or Forteo and it is a daily, instead of monthly injection, and for 24 months instead of 12.

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@sandrajhunt

Your comment means a lot. I am 77 and also not medicating. I am trying a year of a more natural snd dedicated approach with walking a minimum of 30 minutes a day, osteoporosis exercises, use of weights, supplements, bone collagen, and bone building diet. The doctor recommended Evenity since my lower spine showed -3.3 but said he completely understood my decision. I will have another bine density scan in a year and see what happens. We have to each do what feels right for us.

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Wishing you positive outcomes with all of the nutritional, dietary, and exercise that you are doing.
I’ve been listening to podcasts from the osteoporosis summit and found them very informative. Also purchased Dr. McCormick’s book on Strong bones which I haven’t started reading yet, but I understand he has a lot of scientific ways of understanding osteoporosis bone density scores.

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@mayblin

@laurafuentes I'm sorry to hear that tymlos didn't work out for you, hope you have a great success on forteo.

I'm wondering how high your p1np and ctx went after 2 months of tymlos, do you mind share? Having tested only couples of times, my p1np was at 400 after 13 mo of forteo (no ctx). At 17 mo, p1np was at 200 and ctx at 900, which worries me somewhat. My high p1np also didn't correlate high gains in bmd, only average-ish on L spine, no hip or femoral neck gain. I'm eager to see what second year result will reveal.

In addition, what relay drug did you take after evenity, and before tymlos?

Thanks a lot!

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@mayblin Here are answers to your questions about my blood test results after taking Tymlos for 2 months:

P1NP
Dec. 1, 2023 30 March 5, 2024 112

CTX
Dec 1, 2023 205 March 5, 2024 774

I used Tymlos full-strength, daily, from Dec 22 to Feb 10, then reduced dose to 50% or 37.5%, till Feb 21. (Total, 2 months.)

I don't know what these numbers mean, honestly. My doctor's message about these results said only that Tymlos had the "expected effect."

Not sure what's meant by "relay drug." I didn't take anything for the 3 weeks between stopping Tymlos and starting Forteo. (So far, doing alternate days is feeling fine.)

Wishing everyone the best!

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@mayblin

@laurafuentes I'm sorry to hear that tymlos didn't work out for you, hope you have a great success on forteo.

I'm wondering how high your p1np and ctx went after 2 months of tymlos, do you mind share? Having tested only couples of times, my p1np was at 400 after 13 mo of forteo (no ctx). At 17 mo, p1np was at 200 and ctx at 900, which worries me somewhat. My high p1np also didn't correlate high gains in bmd, only average-ish on L spine, no hip or femoral neck gain. I'm eager to see what second year result will reveal.

In addition, what relay drug did you take after evenity, and before tymlos?

Thanks a lot!

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Sorry, @mayblin, I misread your question about the relay drug. I did not take anything between my last Evenity shot on November 1, 2023 and starting Tymlos on December 22. So there was a 3-week gap when I guess my bones were unprotected (Dec 1 - 21).

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@laurafuentes

@mayblin Here are answers to your questions about my blood test results after taking Tymlos for 2 months:

P1NP
Dec. 1, 2023 30 March 5, 2024 112

CTX
Dec 1, 2023 205 March 5, 2024 774

I used Tymlos full-strength, daily, from Dec 22 to Feb 10, then reduced dose to 50% or 37.5%, till Feb 21. (Total, 2 months.)

I don't know what these numbers mean, honestly. My doctor's message about these results said only that Tymlos had the "expected effect."

Not sure what's meant by "relay drug." I didn't take anything for the 3 weeks between stopping Tymlos and starting Forteo. (So far, doing alternate days is feeling fine.)

Wishing everyone the best!

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@laurafuentes thank you very much for sharing your therapy experiences! Your sequence of treatment is intriguing, i.e., tymlos (forteo) after evenity. Although it is said that the peak bone building is during early months of eventy therapy, as shown p1np (a bone building marker) increases (I didn't check if clinical trials had monthly dexa scan to back this up), theoretically the short lapse of treatment in your case (dec 1 to dec 22) shouldn't cause too much "damage", or loss of newly built bone. This could be explained by the ctx trend changes published by the manufacturer.

Do you happen to have your baseline (before any bone pharmaceutical treatment) p1np and ctx? How about the data during evenity treatment?

Sorry about the ambiguity of the word 'relay'. Was trying to see if you used any drug in between evenity and tymlos, or in between tymlos and forteo.

Your p1np showed a great response to tymlos! You and your doc timed and chose very well. Should you joined connect a bit earlier, you'd know windyshores' tymlos dosing maneuver: ramping up or titration up. I also wonder if going back is an option at this point... keep us posted.

All the best!

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@windyshores

@babs10 the discussion about weight and dosing was about Evenity. And I think the optimal dose for that is the full dose, though I have had some trouble tolerating it.

When I came on this forum and described using the adjustable dosing for Tymlos, my goal was still the full 8 clicks on the pen (80mcg). I used the adjustable dosing to ramp up. The goal is still to get as high as you can. You will still have some side effects, potentially, for an hour or two- it is about tolerability. Most don't seem to even need to do this. I am sensitive. If you tolerate Forteo, which most do, great (except for the cost, but there is now a generic). If you don't tolerate it, I would think your insurance would then cover Tymlos. Let us know!

Keith McCormick did Forteo then one dose of Reclast I believe. And then more holistic/"whole body" approaches. I think he had something like 22 fractures. He was/is a triathalon athlete. I believe some of the fractures were in his feet. I asked him about this and also heard it in an interview.

@glojo and others there is nothing "natural" about 680mg of strontium, the therapeutic dose. It is hugely more than what we ingest normally. It will make the density on DEXA look better than it is, because strontium replaces calcium in bone and is denser. Finally, the European version of the FDA banned it for a short time in the ranelate form due to cardiovascular risks. We don't know if that is true for the US supplements. In Europe it was reinstated as an option for those not at risk of cardiovascular events and who cannot take anything else but have serious osteoporosis.

I started it a long time ago, when I couldn't tolerate any meds. I would not take it now, but that is me.

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Keith McCormick followed Forteo with Fosamax for a year. He has stabilized since then, and hasn’t done any other medications for over 20 years!! I am his patient and I asked him:)

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@babs10

Thank you so much for weighing in. Since my insurance only covers Forteo (after rejecting Prolia), I might be stuck. Maybe doctor's can appeal if there is a bad reaction? I weigh 125 pounds and recently read a post somewhere that rightly said people at 125 lbs shouldn't have the same dose as someone who weighs 170 lbs so being able to adjust the dose does make good sense with the Tymlos.

I haven't read Keith McCormick's books yet, but have watched some of his videos. I find him especially credible because he is not straight anti-medication. He understands that some people need and will benefit from it. Do you happen to know if he ever took any medication? I'm not clear on that.

I don't meet he income guidelines for Forteo so my fee is going to be $1920 a month. Let that sink in...absurd. There is a cap of $8000 and nothing due after that, but our system needs an overhaul, that's for sure.

Thank you so much for weighing in. Much appreciated.

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My situation is almost identical to yours, and I’m about to start a bio-similar drug to Forteo. I am 65, fit, athletic and a downhill skier with a -3.1 lumbar spine and a -2.7 femoral neck. My endocrinologist recommended Prolia until she found out I had no intention of stopping to ski double black diamonds in the mountains. Since I haven’t fractured anything, I don’t qualify for Forteo in Canada (that was her anabolic of choice for me as she said we aren’t sure if Evenity causes cardiovascular problems yet and I have a family history plus an irregular heartbeat).

Osnuvo is a bio-similar teriparatide, and I’m told it is virtually the same as Forteo, but a fraction of the cost. I’m still out west skiing and heading home this week. I plan to look at the profile of the drug compared to Forteo more closely, as well as talk to their patient service that my endocrinologist signed me up for. If I’m satisfied I’ll start the first week in April. My endocrinologist said the dose is fine for me (125 lbs), as they also give it to children.

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@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.

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I answered another of your posts, but I’ll add here that after I start taking a bio-similar drug to Forteo, my endocrinologist said I can go on any bisphosphonate for a year (Fosamax, Actonel or Reclast if I can’t tolerate an oral). I know we are all different, but Keith McCormick, for example, hasn’t needed any other drugs since taking Forteo/Fosamax over 20 years ago. That is certainly what I am hoping for … I realize I’m older than Keith was at the time … so perhaps in 10 or 15 years, I’ll need another round?

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@lynn59

My situation is almost identical to yours, and I’m about to start a bio-similar drug to Forteo. I am 65, fit, athletic and a downhill skier with a -3.1 lumbar spine and a -2.7 femoral neck. My endocrinologist recommended Prolia until she found out I had no intention of stopping to ski double black diamonds in the mountains. Since I haven’t fractured anything, I don’t qualify for Forteo in Canada (that was her anabolic of choice for me as she said we aren’t sure if Evenity causes cardiovascular problems yet and I have a family history plus an irregular heartbeat).

Osnuvo is a bio-similar teriparatide, and I’m told it is virtually the same as Forteo, but a fraction of the cost. I’m still out west skiing and heading home this week. I plan to look at the profile of the drug compared to Forteo more closely, as well as talk to their patient service that my endocrinologist signed me up for. If I’m satisfied I’ll start the first week in April. My endocrinologist said the dose is fine for me (125 lbs), as they also give it to children.

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Sounds promising. I hope Canada is more flexible than the US healthcare system. I can't imagine them approving a medication that is not on their very short lists, but it sure never hurts to ask. Keep us posted and, meantime, happy skiing!

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