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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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@kay44 if you have kidney disease, at least stage 3b, you should not take full dose, according to my doctor. Are your kidneys okay after Reclast?
As I posted above, side effects may not be different between 1m, 2 mg and 5mg. I have side effects from 1 mg. But my doc felt 1mg was safer from my kidney disease and heart.
Thank you for sharing this. I appreciate your research. I will read these. I can’t imagine putting this in my body again. I am one of those with severe long term side effects.
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1 ReactionI have read a good portion of these articles about lower dose. A lot I dont understand. I’m going to be getting Reclast after 1 Prolia but my CTX is only 89. Now. Dr is waiting for it to go up before he gives Reclast. I think 5mgs Reclast is too much as I’m sensitive to meds. I’m trying to get her to give me half dose but she will only do 4mgs instead of 5mgs.
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1 Reaction@kay44
Can you explain your comment about your teeth?
I started treating for osteoporosis after breast cancer and took and taking anti-estrogen. I took Fosamax and Reclast.
All Bisphophonates put you at risk for osteonecrosis of the jaw with certain dental procedures as you may know. But once you have intravenous Reclast dental surgeons advise against pulling teeth because of this risk. So when teeth needed pulling or perhaps have an implant I could not do so. One tooth had 5 root canals, so I would not have to pull it, After that the tooth cut off to avoid extraction. Fortunately, it is in the back. I wanted to have some teeth pulled to have implants many years later, but still was advised against that because of the previous Reclast. Read American Dental Association guidelines for how to deal with patients on Bisphosphonates.
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1 ReactionVery interesting. Thanks for this research. I was recommended to take recast after Evinity, but after reading all
the horrific experiences of women on this chat, I opted not to. I am a very petite woman, at 4'10, 98 lbs, and
have never liked the idea of a one size fits all dosing. This is definitely something that should be further
studied.
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1 Reaction@awfultruth thanks so much for doing the research on Reclast. IMO the docs prescribing this medication should do the same. This gives me some ammo for my endocrinologist to explore. I appreciate your work.
Does this sound familiar re overdosing?
https://www.cancer.gov/news-events/cancer-currents-blog/2024/cancer-drugs-lower-doses
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2 Reactions@m40 I hope you can talk to your doctor about a bisphosphonate to "lock in" gains from Evenity. Evenity is new so who knows, maybe its anti-resorptive last months will make it unnecessary to take a bisphosphonate, but for now, that is the protocol (the other one is Prolia, which my docs don't use).
Forums are slanted toward negative reactions. The majority of people do well on Reclast or Fosamax and aren't coming on here at all. You could try it and see. Statistically it is unlikely you would be one of the unlucky ones.
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1 Reaction@normahorn Thanks for suggesting this excellent article. It's about the efforts to try to optimize dosing for cancer drugs but it applies pretty well to osteoporosis drugs. In the article it's patients, doctors and researchers trying to find effective lower doses and reduce side effects for cancer patients. Seems to me that for osteoporosis it's the patients fighting for this and researchers are not involved.
There was at least one book which may be 10-15 years old now that proposed that the standard doses of pharmaceuticals in general were excessive. I never read the book though I thought about it often. I do not remember the name of it. If anyone knows of books on this topic I'd appreciate your input.