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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 Yikes! That sounds awful. I knew it was a problem but this sounds way more extreme than I realized. I guess it's a problem I did not want to have to think about in detail as I had more immediate worries such as my bones thinning at a rapid rate. But once you solve that issue with a drug you're faced with these kind of issues like what the heck do you do when dental problems arise. The general advice is take care of your teeth before starting antiresorptives and of course that's good advice but for many of us doing everything we can to take care of our teeth doesn't completely stop cavities or having teeth that need to be pulled. I don't see a great solution here. Maybe we could explore this in more detail in a discussion devoted to this topic?
@debis67 and others, that 2021 study (the third one linked) says twice that side effects are the same at all doses. 43% have the immediate fluish (acute phase) reaction, which is apparently not dose dependent. Since 4mg was of more benefit than 2mg, even if marginally, this article supports the higher dosing, and says that side effects do not increase with dose.
The other two articles were from 2012 and 2002 respectively. One would hope that research has progressed in more than 20 years but here we are, and the latest study posted (2021) supports full dose- but lower dose helps too.
The NEJM article also says
"The rates of adverse events were similar in all the
active-treatment groups (Table 2). "
It seems that lower doses do not prevent acute phase reactions, which, again, has been my experience. I think studies of efficacy given in intervals of two years vs one would be helpful and also, when should we stop? Some of us want to do an anabolic again. How long should we wait after Reclast? Time limit for Reclast is 3-5 years so if I want to do anabolics between Reclasts I would think I would stop at 1 year.
There is one big caveat when ascribing the same number of adverse effects to different dosages. Severity is not addressed. You and I might both experience a headache but yours might be so bad that it sends you to the ER while mine is a minor annoyance. The same with other effects. For the first time I had a reaction to a COVID vaccine - general malaise and upset stomach for a day.
Others have far more severe reactions. Numbers can hide a lot of important information.
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6 ReactionsI did not want to take prolia. I asked my doctor if I could take bisphosphanates instead. Her response was that this was the protocol. I will see what happens with my next dexa scan, and find another doctor if I feel like I need treatment. I would really like to find a doctor who knows more about osteoporosis treatments than I do, and who is open to discussion
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1 ReactionI cannot stop chuckling over one of the Ig Nobel prize winners for this year.
"that fake medicine which causes painful side-effects can be more effective than fake medicine without side-effects"
I have had 3 Reclast infusions with no side affects none whatsoever. I must have been one of the lucky ones.
I had also taken fosamax several years ago and don’t think they did anything.
@m40 a lot of doctors prescribe bisphosphonates after Evenity. The Evenity website suggests Prolia. The same company makes both so....
If you go on Prolia it has been suggested by Dr. McCormick, who wrote "Great bones," to only do a year or so and then transition to a bisphosphonate.
Can you get a second opinion? My docs won't use Prolia at all. Is this an endo who is treating you?
@rn40 Just to add to @windyshores excellent advice, when your doctor says "it is protocol" that is ridiculous. There is no one protocol generally accepted as best. It is her protocol it seems but certainly one to be very cautious about. And one that should be compared to other protocols.
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2 ReactionsI believe that is the protocol as specified by Amgen, the maker of Evenity and Prolia. I found the NP at the fragility clinic I visited to be polly-parroting Amgen along with having placards promoting their products.
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2 ReactionsIt also sounds so dismissive!
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