1. < Osteoporosis & Bone Health

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

Posted by katgirl @katgirl, Apr 3 7:50pm

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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katgirl | @katgirl | 6 days ago
In reply to @oopsiedaisy "This is a great question and discussion. I am wondering the same as you. I did..." + (show)
@oopsiedaisy

This is a great question and discussion. I am wondering the same as you. I did more than five years of alendronate and still fractured so what was the point? I tolerated the drug well but in the end it didn't lead to greatly increased bone density or fracture prevention.

I've had side effects from the anabolics (have tried both) that were so life-impacting that I chose to stop them.

I have an appointment with an endocrinologist at Stanford from their bone clinic this month. My questions are going to be around what the future looks like for me based on this history.

I still have a T-score in the osteopenia range in my spine. My hips are osteoporotic but I've had a few falls and have not broken anything.

I am doing everything I can lifestyle-wise at this point to help.

I think even the experts just don't know.

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I have heard that if you take alendronate or reclast "too much or too long" it can actually make your bones brittle. They are hard, but not necessarily better protected from fracture.

Which two anabolics did you try? I was hoping to try Tymlos or Forteo because if I had horrible side effects they would wash out of my system fairly quickly, but I can't afford either.

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1 reply
katgirl | @katgirl | 6 days ago
In reply to @gently "katgirl, most of us only take the medication because we're afraid of fracturing. You won't get..." + (show)
@gently

katgirl, most of us only take the medication because we're afraid of fracturing. You won't get much information on holding gains after. The chart tells you why. It is clear from your post that you want to hear about at least five years of improvement from one year of treatment. Can't blame you for not wanting to hear anything else. Wishing you well.

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No, I'd actually be happy to hear that someone GOT 4-5 years. Hearing that people may have only 1-2 is pretty darn discouraging and makes me question if this is the time to start this.

If we are only safe from fracture while actually taking the meds, that is a huge concern to me and something I am now investigating. Hence my specific question and not wanting it to devolve into a debate about other things.

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1 reply
oopsiedaisy | @oopsiedaisy | 6 days ago
In reply to @susanjohnston "I'm so sorry that this journey has been so challenging for you. Can you please share..." + (show)
@susanjohnston

I'm so sorry that this journey has been so challenging for you. Can you please share a link to the endocrinologist at Stanford from their bone clinic? And we would all be so grateful for any update you might be willing to post after your visit. Thank you so much.

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Here's the link to their website: https://stanfordhealthcare.org/medical-clinics/osteoporosis-metabolic-bone-diseases-clinic.html

I had to get my PCP to submit a referral with my medical records before they would see me. They will turn you down for various reasons. I guess my history was interesting enough that they let me make an appointment.

I was given a choice of clinics to visit (they have a number of them in the SF Bay area) so I chose the one that was closest to me.

I will definitely share what I learn. My main question is whether they have successfully guided people in their 60s (I'm 63) through their 80s and avoided fractures and how they did it.

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1 reply
oopsiedaisy | @oopsiedaisy | 6 days ago
In reply to @katgirl "I have heard that if you take alendronate or reclast "too much or too long" it..." + (show)
@katgirl

I have heard that if you take alendronate or reclast "too much or too long" it can actually make your bones brittle. They are hard, but not necessarily better protected from fracture.

Which two anabolics did you try? I was hoping to try Tymlos or Forteo because if I had horrible side effects they would wash out of my system fairly quickly, but I can't afford either.

Jump to this post

Yes, the bisphosphonates preserve what bone you have and suppress bone remodeling. Our bones naturally develop microfractures that need to be repaired and its the development of these microfractures that prompts the osteoclasts to start the remodeling process. The osteoclasts signal the osteoblasts to come in to build new bone. This all stops on bisphosphonates but the wear and tear on your bones never stops.

I tried Tymlos then generic Forteo between June 2024 and March 2025. I had fatigue, bone and joint pain, constipation, bloating and a bit of nausea on both. Tymlos was a little easier while Forteo was awful.

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1 reply
oopsiedaisy | @oopsiedaisy | 6 days ago
In reply to @katgirl "No, I'd actually be happy to hear that someone GOT 4-5 years. Hearing that people may..." + (show)
@katgirl

No, I'd actually be happy to hear that someone GOT 4-5 years. Hearing that people may have only 1-2 is pretty darn discouraging and makes me question if this is the time to start this.

If we are only safe from fracture while actually taking the meds, that is a huge concern to me and something I am now investigating. Hence my specific question and not wanting it to devolve into a debate about other things.

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I just thought of Dr. Keith McCormick who has written a couple of books on osteoporosis. He was an Olympic pentathlete who developed osteoporosis in his 40s, with many fractures.

He took Forteo 20 years ago followed up by a year of alendronate and has been off medication since. He spent a lot of time researching causes of osteoporosis and what an individual can do about it including both meds and lifestyle.

My understanding is that he's maintained his bone density but hasn't improved it. Most importantly, he hasn't fractured in years.

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nannygoat5 | @nannygoat5 | 6 days ago

I’m following this post! I’m only 65 - taking fosamax - yes- I’d like to know if I’ll be as agile and strong an athlete as I am now in twenty years if I eat well, lift weights, run and jump and take fosamax?! I’m -2.3 in my FN and -2.7 in my lower lumbar. Has anyone successfully lived with this for twenty years?

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susanjohnston | @susanjohnston | 6 days ago
In reply to @oopsiedaisy "Here's the link to their website: https://stanfordhealthcare.org/medical-clinics/osteoporosis-metabolic-bone-diseases-clinic.html I had to get my PCP to submit a..." + (show)
@oopsiedaisy

Here's the link to their website: https://stanfordhealthcare.org/medical-clinics/osteoporosis-metabolic-bone-diseases-clinic.html

I had to get my PCP to submit a referral with my medical records before they would see me. They will turn you down for various reasons. I guess my history was interesting enough that they let me make an appointment.

I was given a choice of clinics to visit (they have a number of them in the SF Bay area) so I chose the one that was closest to me.

I will definitely share what I learn. My main question is whether they have successfully guided people in their 60s (I'm 63) through their 80s and avoided fractures and how they did it.

Jump to this post

Thanks for this. We will follow your progress. Can you share which doctor you will see?

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1 reply
2121 | @leslie2121 | 6 days ago
In reply to @katgirl "Thanks for your response. You said it has been 2.5 years ago since you stopped medications...." + (show)
@katgirl

Thanks for your response. You said it has been 2.5 years ago since you stopped medications. Are you having a DEXA soon to see if you've held onto the small improvements you made?
So you were sick from the Reclast for 1.5 years? If so, I am so sorry. Are they still monitoring you? Have they told you when you'll need to take the meds again? Or have you decided you are done based on how badly you felt on the meds the last go round?

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Yes, I am due for another scan now.
I reacted to the Reclast with severe joint pain and in one knee in particular. It swelled up and I couldn’t put weight on it for almost a week- no prior knee or joint issues! It gradually got better after a few months but it was over a year until I felt better.

I’m sure my endocrinologist will try to encourage me to try Tymlos. She suggested Osteostrong which I have been doing for a year.

I might try Tymlos because you can stop it and it’s gone pretty quickly unlike Reclast.

REPLY
1 reply
katgirl | @katgirl | 6 days ago
In reply to @oopsiedaisy "Yes, the bisphosphonates preserve what bone you have and suppress bone remodeling. Our bones naturally develop..." + (show)
@oopsiedaisy

Yes, the bisphosphonates preserve what bone you have and suppress bone remodeling. Our bones naturally develop microfractures that need to be repaired and its the development of these microfractures that prompts the osteoclasts to start the remodeling process. The osteoclasts signal the osteoblasts to come in to build new bone. This all stops on bisphosphonates but the wear and tear on your bones never stops.

I tried Tymlos then generic Forteo between June 2024 and March 2025. I had fatigue, bone and joint pain, constipation, bloating and a bit of nausea on both. Tymlos was a little easier while Forteo was awful.

Jump to this post

I'm sorry the side effects were bad. I wish I could try either of those, though! Just because you can discontinue them so fast. I can't afford either of them with my insurance currently. Maybe another way the universe is telling me to wait. Or the universe is telling me the healthcare system in America is broken 🙁

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1 reply
katgirl | @katgirl | 6 days ago
In reply to @leslie2121 "Yes, I am due for another scan now. I reacted to the Reclast with severe joint..." + (show)
@leslie2121

Yes, I am due for another scan now.
I reacted to the Reclast with severe joint pain and in one knee in particular. It swelled up and I couldn’t put weight on it for almost a week- no prior knee or joint issues! It gradually got better after a few months but it was over a year until I felt better.

I’m sure my endocrinologist will try to encourage me to try Tymlos. She suggested Osteostrong which I have been doing for a year.

I might try Tymlos because you can stop it and it’s gone pretty quickly unlike Reclast.

Jump to this post

I'm so sorry That sounds absolutely awful. The doctors really gloss over severe side effects and act like you are crazy if you are concerned about them.
And again, this is my concern about the risk reward. If I'm only going to get a year of gains, is it worth risking feeling sick or disabled for a year?! For me, not so much.
Thanks so much for your input.

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