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

Posted by katgirl @katgirl, 2 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!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I was one of those who got a compression fracture skiing at 62, and found out I have osteoporosis. I took Evenity for 8/12 months and had side effects and stopped before finishing the year. I then had a Reclast infusion and also felt crappy for about a year and a half.
That was 2.5 years ago. No more fractures though and I healed up on my own from the first one-But no more skiing! Still do lots of walking and exercising.
I had some improvement on dexa-scan but nothing overwhelming!
I have been going to Osteostrong the past year so hope to see where things are soon.
But I agree the options don’t seem very appealing! I’m now 66. I am interested in your question too.

REPLY
@leslie2121

I was one of those who got a compression fracture skiing at 62, and found out I have osteoporosis. I took Evenity for 8/12 months and had side effects and stopped before finishing the year. I then had a Reclast infusion and also felt crappy for about a year and a half.
That was 2.5 years ago. No more fractures though and I healed up on my own from the first one-But no more skiing! Still do lots of walking and exercising.
I had some improvement on dexa-scan but nothing overwhelming!
I have been going to Osteostrong the past year so hope to see where things are soon.
But I agree the options don’t seem very appealing! I’m now 66. I am interested in your question too.

Jump to this post

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?

REPLY

katgirl,
I'm holding gains on Forteo by staying on the medication. I'm starting a third year with no plans to stop. Some cannot tolerate the drug, but for me it has been comfortable. I hope you have luck.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8519894/figure/Fig1/

REPLY
@gently

katgirl,
I'm holding gains on Forteo by staying on the medication. I'm starting a third year with no plans to stop. Some cannot tolerate the drug, but for me it has been comfortable. I hope you have luck.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8519894/figure/Fig1/

Jump to this post

I'm looking for how long people hold gains after STOPPING the medications.
I expect people to hold gains while taking the meds.

Right now Evenity is my only choice in terms of insurance. Another reason to push off treatment I guess.

REPLY

I’m not the person to answer you about holding gains after stopping Reclast, sorry. But I’m interested in the same info. I’ve done 2 Reclast injections, heading for the third in a couple of months. I’ve only had the 2-3 day type side effects, though.
I see the endocrinologist next month, I’ll ask about how long Reclast should affect bone after stopping as that’s where I’ll now find myself. Originally I was so caught up in breast cancer treatment questions that Reclast was just another drug that I took. Preventing compression fractures is my number one concern as I age.

Here’s a recent study, seems like good data about Reclast, but one of the 5 authors does have a connection to Novartis. This study shows that when talking bone strength there is a difference between simply improving density and preventing fractures.

“We found that a single dose of 5 mg zoledronate prevented bone loss for 9 to 10 years in the axial skeleton and reduced the level of a bone resorption marker by at least 25% for 8 years.”

But that is about preserving bone density. Preventing fractures is something else. From the same study . . .

“Current analyses suggest that a single 5 mg dose of zoledronate and 5-yearly doses of 2.5 mg zoledronate would reduce the incidence of each fracture type over 10 years.”

Side effects from Reclast do seem to be dose dependent. Hopefully a lower dose might be easier on your body.
https://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4453

REPLY
@triciaot

I’m not the person to answer you about holding gains after stopping Reclast, sorry. But I’m interested in the same info. I’ve done 2 Reclast injections, heading for the third in a couple of months. I’ve only had the 2-3 day type side effects, though.
I see the endocrinologist next month, I’ll ask about how long Reclast should affect bone after stopping as that’s where I’ll now find myself. Originally I was so caught up in breast cancer treatment questions that Reclast was just another drug that I took. Preventing compression fractures is my number one concern as I age.

Here’s a recent study, seems like good data about Reclast, but one of the 5 authors does have a connection to Novartis. This study shows that when talking bone strength there is a difference between simply improving density and preventing fractures.

“We found that a single dose of 5 mg zoledronate prevented bone loss for 9 to 10 years in the axial skeleton and reduced the level of a bone resorption marker by at least 25% for 8 years.”

But that is about preserving bone density. Preventing fractures is something else. From the same study . . .

“Current analyses suggest that a single 5 mg dose of zoledronate and 5-yearly doses of 2.5 mg zoledronate would reduce the incidence of each fracture type over 10 years.”

Side effects from Reclast do seem to be dose dependent. Hopefully a lower dose might be easier on your body.
https://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4453

Jump to this post

I would very much appreciate hearing back about what your endocrinologist says about the reclast. Although, if you are taking reclast preventatively because of the cancer treatment rather than because you have osteoporosis now, the answer could be different.

And I'm so sorry about your breast cancer. You definitely had bigger fish to fry than worrying about researching Reclast at the time!

I was hoping to do an anabolic plus reclast as the anabolic actually grows new, healthy bone rather than the recycled old bone of the reclast. BUT the only anabolic I can afford at the moment is Evenity, and that is the one I am least interested in taking. So who knows, I might end up on only reclast. Right now, vertigo has taken starting anything off the table anyhow.

I have to say, I find this all confusing though. If reclast stays in the body working that long, then why did my endo say I can only expect to hold onto gains from an anabolic plus reclast for 1-5 years?

I asked my endo a lot of questions that seemed totally confused by. I'm wondering if I need to switch to someone with more experience.

REPLY
@katgirl

I'm looking for how long people hold gains after STOPPING the medications.
I expect people to hold gains while taking the meds.

Right now Evenity is my only choice in terms of insurance. Another reason to push off treatment I guess.

Jump to this post

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.

REPLY

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.

REPLY
@triciaot

I’m not the person to answer you about holding gains after stopping Reclast, sorry. But I’m interested in the same info. I’ve done 2 Reclast injections, heading for the third in a couple of months. I’ve only had the 2-3 day type side effects, though.
I see the endocrinologist next month, I’ll ask about how long Reclast should affect bone after stopping as that’s where I’ll now find myself. Originally I was so caught up in breast cancer treatment questions that Reclast was just another drug that I took. Preventing compression fractures is my number one concern as I age.

Here’s a recent study, seems like good data about Reclast, but one of the 5 authors does have a connection to Novartis. This study shows that when talking bone strength there is a difference between simply improving density and preventing fractures.

“We found that a single dose of 5 mg zoledronate prevented bone loss for 9 to 10 years in the axial skeleton and reduced the level of a bone resorption marker by at least 25% for 8 years.”

But that is about preserving bone density. Preventing fractures is something else. From the same study . . .

“Current analyses suggest that a single 5 mg dose of zoledronate and 5-yearly doses of 2.5 mg zoledronate would reduce the incidence of each fracture type over 10 years.”

Side effects from Reclast do seem to be dose dependent. Hopefully a lower dose might be easier on your body.
https://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4453

Jump to this post

Thanks so much for your thorough and helpful posting. I sent the link to the Reclast research to my doctor.

REPLY
@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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.