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Are we overdosing Reclast???
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.
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I have found the "before and after" comments very helpful. Thank you!
Here's my experience that I documented following my first Reclast IV in February.
I'm 72, 5'4" and in great health. Not an exercise freak, just very active.
Overall:
...Worst symptoms started 12 hours after infusion and lasted until early morning day three.
Aleve worked better than Tylenol.
Worst pain was left side neck, both arms had lack of range of motion. Chest tightness on day two.
Daily/Weekly:
Day 1: taking 1 Tylenol arthritis every 4 hours. No side effects until 4 AM. Severe bone pain and bloating. Brief chills.
Day 2: chest tightness and bloating, joint pain, still taking Tylenol. Brief chills.
Temp of 102.4. Took Aleve at 7:30pm.
9:15pm temp 101.5
Day 3: Aleve much better at relieving symptoms than Tylenol. Aleve at 7:30am. Temp 100.1 at 8am.
Day 4: Aleve 7am. Temp 99.3
Headache Tylenol 10pm temp 99.1
1 week: strong pain left hip. Aleve barely helped. Difficulty walking. Ice worked.
2 weeks: stomach issues bloating/ diarrhea. Seriously thinking about not doing this again. Feel feverish and nauseous. Fatigue is high today.
3 Weeks: Finally feeling better.
Because I know what lies ahead of me come February 2027, I will take the treatment again. I'm told the side effects are lessened on dose #2??
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5 Reactions@lesliesara Were you taking Reclast as a first line treatment or as a way to lock in gains from a different medication?
@rjd
First line treatment. I did not want to take any oral med because of reflux issues, so I chose the IV option.
@mayblin
I talked with my endo about a half dose. He didn't see that as a problem.
@gravity3, are you planning to use 1/2 dose Reclast to transition off Prolia? Does your endo view your previous Fosamax treatment and ongoing HRT as favorable factors that could support a reduced Reclast dose? Will they closely monitor your CTX levels?
@mayblin
The short answer is I wish I knew.
He is just getting on board with ctx etc.
I am not feeling confident about his support. I will be talking to him in November. I may be happier to go the full dose with all of the prep plus 30-40 min. Infusion+saline drip.
I am 78 now and the temptation is to continue with Prolia until I die.
On the flip side I am tempted by reclast and hoping for a drug holiday if he gets onboard with ctx etc...otherwise I would not feel confident going that route.
Thank you for the questions it has pushed me to go over what Iay need to do.
Honestly I am sick of it all...this osteoporosis job. Sorry for my rant but thanks again for you support. I welcome any other thoughts.
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3 Reactions@gravity3
As you know, your prior Fosamax exposure (Langdahl's presentation} and ongoing HRT both provide added protection against rebound that can occur after stopping Prolia. The challenge is, for this specific situation, there is no solid evidence supporting a reduced dose of Reclast. I agree with your inclination that 5mg is the safer approach.
No major US medical society specifies a numeric CTX threshold during Prolia cessation; in Europe, the ECTS proposes a CTX of 280ng/L as the Reclast retreatment trigger, a later analysis by Grassi et al. identified 212ng/L as the cutoff most predictive of subsequent bone loss. Those thresholds, however, vary across studies and cohorts.
To me, transitioning to Reclast (guided by CTX) seems more straightforward since you may be able to take a drug holiday once rebound risk has passed, with Evenity remaining an option if needed later.
Continuing with Prolia is another reasonable strategy if you are comfortable doing so and have with an exit plan in place just in case. There are a few limited observational studies published recently, one involving the addition of Evenity to ongoing Prolia, and the other using overlapping Evenity with Prolia. Both showed some success in patients (small #s) at very high fracture risk. Those approaches may not be particularly relevant to you if you are responding well and have remained fracture-free.
Please keep us updated on your next DXA results and decision - your endo may have a preferred med based on your bmd and FRAX risk after the scan.
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4 Reactions@mayblin
Thank you so much. This is such valuable information. I appreciate your help in trying to sort this out.
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1 Reaction@mayblin I read your reply with great interest because you are the only person, besides my endocrinologist, who mentioned the 280ng/L CTX reading as the key number in evaluating the need for another Reclast infusion. You also mentioned another analysis used 212.
I recently saw my endocrinologist who looked at my CTX scores (baseline plus 2 additional readings) and saw my most recent CTX was 283. She said that she recommended another Reclast infusion now. Had I taken her advice, I would be doing one now, but I'd prefer to wait a full year since my original and first Reclast infusion in October 2025. I'd like another Dexa scan before deciding about when to do the next infusion, but that will depend on Medicare coverage since it's not been 2 years since my last one.
When I asked her about referring to 280 as a significant threshold, she said it was used in Europe. With your more specific reference to ECTS I could find out more about this group which describes itself this way:
The European Calcified Tissue Society (ECTS) is the major organisation in Europe for researchers and clinicians working in the musculoskeletal field.
https://ectsoc.org/about-ects/
If you can provide a reference to the ECTS referral to the 280, I'd really appreciate it. But if you can't do that, no worries. In looking for that, however, I did find
"A position statement by ECTS on Discontinuation of Denosumab therapy for osteoporosis – by Carola Zillikens."
While no mention of that 280 is in this statement, this comment caught my attention even if the number of women was incredibly small:
"A recent very small study of six women with postmenopausal osteoporosis who had been treated with denosumab for 7 years showed that a single infusion of zoledronic acid was not able to prevent BMD loss at the femur. Studies to investigate the optimal timing of starting i.v. bisphosphonates as well as on the duration of this post-treatment period are clearly needed."
https://ectsoc.org/a-position-statement-by-ects-on-discontinuation-of-denosumab-therapy-for-osteoporosis-by-carola-zillikens/
Thank you for providing this information!
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3 Reactions@gravity3
You have a very open minded endo. I've decided to stop all Rx osteo therapies after my 2 years on Forteo because my endo refuses to modify the dosage or time frame of RECLAST infusion. I'm risking the loss of the meager benefits of Forteo because of the rigid protocols for Reclast.
For now, I'm going all out on Functional Medicine, which is very costly but with the intention of getting to the root cause of osteoporosis and a few other health issues. I am going into this with eyes wide open and after thoroughly studying everything I've learned from this blog and other sources. I plan to get a DEXA in a year to track what's happened.