How long can a person hold the gains from an anabolic plus reclast?

Posted by katgirl @katgirl, 4 days ago

So, I had a very shocking and discouraging comment from my endo about how long a person generally holds gains from drug therapy for OP, specifically one of the anabolics (Forteo, Tymlos, Evenity) plus reclast. She said 1-3 years. So you take drugs with, for me, probably a ton of side effects for at least 2 years and you might only benefit from it for one year???!!! If anyone has any studies on whether this is true or not, I'd love to see them. Would also like to hear people's personal experiences on this and how long they were able to keep their gains once they "locked it in" with reclast.
Rest assured, I knew this would not be a one and done type of process. But if I'm going to have my quality of life diminished from two years of taking drugs, I would hope for at least FIVE years of improvement, not ONE. ALSO, have you really made those gains? Or do you only have them while taking the drugs. Because, it took me over 15 years to lose bone density and develop OP, but apparently bone density from drugs can go away in one year, according to my endo. That just seems crazy. I was planning on just pushing through side effects, like its chemo, to get to the other side. But if I have to be on these drugs that diminish quality of life for the rest of my life with only a year off here and there then I'm probably going to push this off a few years and try to do whatever I can the natural way to stave off the merry go round of drugs that I'm apparently about to start. I'm just flabbergasted. And I know, for those of you who haven't gotten seriously ill from meds where the cure IS literally worse than the disease for you, it is impossible for you to understand/empathise with. But I have. And it sucks. So please, is there anyone on here or do you know of anyone who has made it three or more years before having to go back on these drugs? Or know of long term studies showing how long people keep gains, I would appreciate it. Please answer only the question given. I don't need a lecture right now. Thank you!

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oopsiedaisy | @oopsiedaisy | 3 days ago

In reply to @susanjohnston "Thanks for this. We will follow your progress. Can you share which doctor you will see?" + (show)

Honestly, I can't remember! I just know I have an appointment this month. I'll let you know after my visit.

oopsiedaisy | @oopsiedaisy | 3 days ago

In reply to @katgirl "I'm sorry the side effects were bad. I wish I could try either of those, though!..." + (show)

It's definitely broken. Have you looked into generic Forteo (teriparatide)? If you've already mentioned this, I apologize - it's hard to keep track of everyone here. My insurance would only cover the generic version. It cost me $10 per month.

I was covered by the Tymlos co-pay assistance plan while I was on it otherwise the co-pay would have been $800 per month. I probably wouldn't have tried it in that case due to cost and also because I don't think the gains would have been worth it. Because I was on alendronate for so long, my gains would have been in the range of 30% to 60% lower based on comparison studies I've read.

One of the factors in my deciding not to continue with teriparatide was also the potential gain in BMD. I am not sure what difference it makes going from a lumbar T-score of -2.2 to -2.0 which is a 6% gain (typical gain seen in patients previously treated with alendronate that did a round of Forteo).

Edited to add: I'm hoping the combined six months I did manage to get through have had some kind of positive impact. At the very least they may have got me building new bone again after being suppressed for so long.

katgirl | @katgirl | 3 days ago

In reply to @oopsiedaisy "It's definitely broken. Have you looked into generic Forteo (teriparatide)? If you've already mentioned this, I..." + (show)

Unfortunately, the generic is still thousands of dollars per month according to my insurance. And I would owe 60% of those thousands. Tymlos isn't covered at all but even if my doctor wrote for it, it would again be me paying 60% of a drug that costs thousands a month. Weirdly the only one my insurance will cover is Evenity because they bill it under my "out patient surgery" section of my insurance and not as a prescription med. I know everyone else wants to take Evenity, but with my side effect profile and how long it stays in the body, I don't want to take it. The people who get insomnia and don't sleep for several months on it are just a horror show to me. I can't risk my mental health. I have asked my endo to actually run all three through insurance just to see what the price comes out to be to make sure. But I haven't heard back from her yet. Fingers crossed that your six months got you good gains!!! And now, I have to get off the computer. I had vertigo last week and screens make the dizziness and nausea worse. It was a silly time to post but I was just so worked up about the whole thing, I so appreciate everyone who has weighed in and apologize if I've missed anyone. Being on the computer right now is very challenging.

njhornung | @normahorn | 3 days ago

Aren't we geting off topic in spite of the one who started the thread asking specifically for us to not do so?

njx58 | @njx58 | 3 days ago

Keith McCormick (author of "Great Bones" and often mentioned here for consultations) took Forteo many years ago for his severe osteoporosis. After two years on Forteo, he decided to manage his condition without medication. His story:
https://www.wddty.com/features/an-answer-to-osteoporosis/

susanjohnston | @susanjohnston | 3 days ago

In reply to @njx58 "Keith McCormick (author of "Great Bones" and often mentioned here for consultations) took Forteo many years..." + (show)

I saw an interview with him and have a memory that he followed Forteo with a year on Fosomax.

njx58 | @njx58 | 3 days ago

In reply to @susanjohnston "I saw an interview with him and have a memory that he followed Forteo with a..." + (show)

Yes, that sounds familiar... but that was many years ago, and he hasn't been on meds since then. Last year or so, he told me that his spine was a -3.3. It was much worse when he started.

I think he has just tried to maintain that level and work on bone strength via nutrition and exercise. Given that he is 70 and competes in triathlons, whatever he is doing is working.

susanjohnston | @susanjohnston | 3 days ago

In reply to @njx58 "Yes, that sounds familiar... but that was many years ago, and he hasn't been on meds..." + (show)

Yes. I was just responding to your sentence that stated, "After two years on Forteo, he decided to manage his condition without medication." So there was one more year of medication after that with a year of Fosomax. I was curious why he chose Fosomax and not Reclast.

njx58 | @njx58 | 3 days ago

In reply to @susanjohnston "Yes. I was just responding to your sentence that stated, "After two years on Forteo, he..." + (show)

This was a while ago that he took the meds - 20 years? I'm not sure Reclast was even around, or it was really new, when he did this. It was first approved in 2008. There weren't a lot of options at that time.

sibleymeister999 | @sibleymeister999 | 2 days ago

I do not have the experience with drugs you are looking for but this is the first I have heard that gains may only be locked in for a year or two! How demoralizing! I am 57 and about to start on this rollercoaster and I am going to consult with my nurse practitioner before I start!