Are we overdosing Reclast???

Posted by awfultruth @awfultruth, Sep 9, 2024

Note: I have posted this elsewhere in comments but I don't think it was widely seen so I'm posting this here as it's own discussion.

Now to the point, YES, I think Reclast is being overdosed and that the the large dose given once a year is probably responsible for a lot of the bad side effects some people experience.
There is strong evidence in studies that lower dosages and altered infusion schedules produce very similar results and in one case superior results to the standard 5 mg dose of Reclast.
It becomes clear from studying the papers below that the motivating factors behind the 5mg yearly dose is convenience, patient compliance, money and they claim the greater good for the most people. They do not consider intelligent individualized medicine. Nor do any of these papers report anything other than temporary discomfort as a side effect. None of them seriously consider that a lower dose might be safer.

Before I list the papers supporting my argument that lower doses could be effectively and safely used I want to mention that maybe severe long term side effects are rare events and don't merit this attention. The short term flu like etc reactions are acknowledged but long term life changing side effects don't seem to be well reported for Reclast. I do not know how often or in what percentage of Reclast users these occur. Some reports could be coincidence and not due to Reclast at all. I do not know how to determine how real the threat of long term serious consequences is. So, for the purposes of this post I'm considering the serious long lasting adverse side effects of standard dosing of Reclast to be real, of unknown frequency and something to consider and try to avoid.

Here are three papers showing lower doses work just as well.

The first one compares 3 different doses and shows that 1mg does well, 2.5mg does best and 5mg does ALMOST as well as 2.5 mg. All three were one dose with result at one year.
https://academic.oup.com/jcem/article/97/1/286/2833555...
The second one alters dosing schedules depending on dosage. Combined with the paper above this is great information. They used dosages as small as 0.25mg quarterly with the same result as the large annual dose. It's behind a paywall but you can get a free account and get three free articles a month.
https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807...
The third one compares 2mg to 4mg and concludes that we should stick with 4mg. BUT, if you dig into the details you see that there is reason to rethink their conclusion. Yes there is a tiny advantage to 4mg in the spine BUT there is a tiny advantage to the femur neck and total hip for the 2mg. Hardly what would make me call the 4mg superior and certainly not a significant difference. The difference in the spine is between 2mg gains 4.86% and 4mg gains 5.35%. So a gain of about 5% with either dose. As I said it flips the other way with the hips but they do not consider that even though their study shows it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8420937/
What also needs to be considered is how often we are dosing Reclast and how the annual dose for osteoporosis may be too frequent and may be putting people at unnecessary risk of long term side effects.
I wanted to list a fourth paper showing that Reclast doesn't usually need to be given annually. That it often lasts as an effective dose for 18-24 months. I'm almost certain I saw a paper on this but I cannot find it now. What would be best IMO is to monitor CTX and only give another infusion when the CTX reaches a level indicating bone turnover is speeding up too much.

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

Profile picture for 19kcm56 @19kcm56

Hi awfultruth, I am wondering if your doctor was agreeable to you trying risedronate or alendronate instead of Reclast. Also do you have a link to Dr. Michael McClung's discussion of sequencing with using a less powerful bisphosphonate.
Thanks for this discsussion!!!

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@19kcm56 Sorry I never noticed this question.
Yes, my doctor did go along with trying risedronate. Which I'm still using.
Here's the link:
https://www.ofnm.org/santa-fe-bone-symposium/ see Open Mic link in list on left side

Click on the Open Mic discussion. The part I'm referring to with Dr McClung and Risedronate is in the 1st question asked. A number of other topics follow but the piece you are asking about is in those first minutes.

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Profile picture for strongbonez @strongbonez

@jacklin Are you still doing the Reclast infusions? I had side effects from Fosamax and was reluctant to maintain the weekly dosing. Now I'm contemplating Reclast. I was relieved to hear of someone who had no side effects as I fear being one of those does. Perhaps after your 3 infusions, you were able to do the "drug holiday"? I'd appreciate an update on your situation.

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@strongbonez
Hi, I had no side effects with Reclast none whatsoever, but I still kept fracturing my bones, I did not take a break from Reclast.
I Had been on Fosamax previously, as well, did not help.
I’m thinking of taking a break from everything for now,
I do get my bone density every year, very little progress but not enough to keep me from breaking bones

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Profile picture for awfultruth @awfultruth

@19kcm56 Sorry I never noticed this question.
Yes, my doctor did go along with trying risedronate. Which I'm still using.
Here's the link:
https://www.ofnm.org/santa-fe-bone-symposium/ see Open Mic link in list on left side

Click on the Open Mic discussion. The part I'm referring to with Dr McClung and Risedronate is in the 1st question asked. A number of other topics follow but the piece you are asking about is in those first minutes.

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@awfultruth
Thank you for this link!!!

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Profile picture for jacklin @jacklin

@strongbonez
Hi, I had no side effects with Reclast none whatsoever, but I still kept fracturing my bones, I did not take a break from Reclast.
I Had been on Fosamax previously, as well, did not help.
I’m thinking of taking a break from everything for now,
I do get my bone density every year, very little progress but not enough to keep me from breaking bones

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@jacklin
Are you saying that you started op meds with fosamax then began reclast? Has there been any discussion about taking an anabolic such as tymlos or forteo?

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No, I will inquire at my next visit

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I started Fosamax, 8 months, then went on Reclast (after MUCH worry) 4 months after stopping Fosamax. Dexa improved a bit on Fosamax; no more testing until July 2026. First appointment was a script for Fosamax (we didn't really discuss other drugs other than Prolia which the doc does not like), he mentioned Reclast at that first appointment which really scared me as it is a once-a-year infusion so if there is a problem you are stuck. After Fosamax however (some GI issues but not bad) I did as I was told and had the reclast infusion. Doubtful I will do it again unless I can get a half dose; too much worry; seems like some of these drugs are worse than the disease. Reading about people fracturing while ON bone health drugs makes me think twice about the quality and purpose of the meds. That being said I had zero side effects; other than a bad headache on day 5 which cleared up in a couple of hours. Now however I am having bone pain - feet, forearm, leg, thumb joints. Nothing horrible but still an annoyance. Pain in foot bad enough that I am going to the foot doc. So far I have never had a fracture, other than broken wrist from car wreck (EMT said happens all the time, airbag breaks wrists on people of all ages and health levels). I have heard that bone builders should be first; but that's not what my doc prescribed. We will see!

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Profile picture for jozer @jozer

I started Fosamax, 8 months, then went on Reclast (after MUCH worry) 4 months after stopping Fosamax. Dexa improved a bit on Fosamax; no more testing until July 2026. First appointment was a script for Fosamax (we didn't really discuss other drugs other than Prolia which the doc does not like), he mentioned Reclast at that first appointment which really scared me as it is a once-a-year infusion so if there is a problem you are stuck. After Fosamax however (some GI issues but not bad) I did as I was told and had the reclast infusion. Doubtful I will do it again unless I can get a half dose; too much worry; seems like some of these drugs are worse than the disease. Reading about people fracturing while ON bone health drugs makes me think twice about the quality and purpose of the meds. That being said I had zero side effects; other than a bad headache on day 5 which cleared up in a couple of hours. Now however I am having bone pain - feet, forearm, leg, thumb joints. Nothing horrible but still an annoyance. Pain in foot bad enough that I am going to the foot doc. So far I have never had a fracture, other than broken wrist from car wreck (EMT said happens all the time, airbag breaks wrists on people of all ages and health levels). I have heard that bone builders should be first; but that's not what my doc prescribed. We will see!

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@jozer this is very helpful. I have the same dilemma. I finished 12 months of Evanity and got good results in my spine but none in my hips. Then I was put on two rounds of Prolia and now my doctor wants me to go on Reclast which I’m extremely ambivalent about. The alternative is fast max, but I’m not sure it will do much and I keep hearing about the bad G.I. side effects. Please keep updating this discussion as I am checking these posts regularly for new information.

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Profile picture for gretch19 @gretch19

@jozer this is very helpful. I have the same dilemma. I finished 12 months of Evanity and got good results in my spine but none in my hips. Then I was put on two rounds of Prolia and now my doctor wants me to go on Reclast which I’m extremely ambivalent about. The alternative is fast max, but I’m not sure it will do much and I keep hearing about the bad G.I. side effects. Please keep updating this discussion as I am checking these posts regularly for new information.

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@gretch19

Fast max?

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Profile picture for jozer @jozer

I started Fosamax, 8 months, then went on Reclast (after MUCH worry) 4 months after stopping Fosamax. Dexa improved a bit on Fosamax; no more testing until July 2026. First appointment was a script for Fosamax (we didn't really discuss other drugs other than Prolia which the doc does not like), he mentioned Reclast at that first appointment which really scared me as it is a once-a-year infusion so if there is a problem you are stuck. After Fosamax however (some GI issues but not bad) I did as I was told and had the reclast infusion. Doubtful I will do it again unless I can get a half dose; too much worry; seems like some of these drugs are worse than the disease. Reading about people fracturing while ON bone health drugs makes me think twice about the quality and purpose of the meds. That being said I had zero side effects; other than a bad headache on day 5 which cleared up in a couple of hours. Now however I am having bone pain - feet, forearm, leg, thumb joints. Nothing horrible but still an annoyance. Pain in foot bad enough that I am going to the foot doc. So far I have never had a fracture, other than broken wrist from car wreck (EMT said happens all the time, airbag breaks wrists on people of all ages and health levels). I have heard that bone builders should be first; but that's not what my doc prescribed. We will see!

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@jozer

Didn't your doc discuss anabolics with you? Current thinking seems to be start with an anabolic then a bisphosphonate to lock in gains. It seems that the reverse sequencing... bisphosphonate then anabolic.....can blunt gains.

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Profile picture for gravity3 @gravity3

@gravity3 sorry for my typos. Should be Fosomax and Evenity.

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