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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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Thank you for researching this.
I always thought that meds, as with clothes, one size does not fit all.
Always better to start out with less and add as necessary.
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1 Reaction@samclembeau Now that is some real homespun wisdom for you!
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1 ReactionThank you for your research. I agree that one size fits all medication protocols are senseless.
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1 ReactionThanks Awful for sending that out again. I saw your first post, but didn't print it out. I had the Reclast infusion in February 2023 and am still having side effects from it. I'm going to go back to the doctor's office who administered it and find out how big of a dose I received. I never received any documentation on my way out. By design, I suppose. Thanks again.
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Hi @awfultruth thank you very much for the links! I guess the biggest question is how an endo justifies a variation in dose and/or dosing schedule if the patient doesn't have any "indication" for them? Additionally, will insurance cover the cost for more frequent dosing if needed when a smaller dose is used? Could you please keep us posted regarding what you and your endo decide to do? Thanks a lot!
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1 ReactionThank you for this information. I appreciate your efforts.
@dingus you probably received 5mg, the standard dose.
Just adding another factor to the discussion: are side effects dose-dependent? I ask this question based on my experiences.
Most women I know seem to do fine with Reclast at the standard dose but I feel for those posting here with more extreme effects.
I also wonder if any drug that builds bone density will cause a degree of pain ("growth pains").
Our immune systems are complex and most meds bring a risk of an immune reaction. It seems those of us with autoimmune disorders are especially vulnerable. Perhaps that should be a reason to justify lower dose-?
Someone wrote me privately that a lower dose does not reach the lower spine. Another thing to consider. I am sure research is lacking and the person could not cite.
I was in the cancer infusion center yesterday and asked whether more people doing lower doses could impact the availability of infusion rooms for cancer patients. The other group in there is receiving iron, a deficiency of which can (in my mother's experience) be life-threatening for some. If we all went in 4 times/year, the infusion infrastructure would need to be expanded as well as staff.
That said, I am going to print these studies out and ask my doctor.
So I read all the studies posted above. The first link indicates there are are studies going on on lower dosing. That is encouraging.
That first linked study description mentions that lower dosing could have a beneficial financial effect and increase access for those who are challenged financially. Interesting.
The third study linked concludes that the conventional dose of 4mg is superior to the 2mg dose and they stopped the study. The difference in results was not large.
The issue of whether side effects are dose-dependent seemed to have been addressed in that study as well: "There was no difference in the occurrence of adverse events between the two groups (P = 0.63)" Meaning between 2mg and 4 mg. This seems to be a crucial point for us.
I was wondering about one thing in the NEJM article, which says it has long been thought that bisphosphonates are deposited on osteoclasts but that they found deposits also on osteoblasts. What does this mean? The bisphosphonates are slowly released from bone. We need studies on how long we should wait so that anabolics can work well again. And are lower doses better in that regard?
I am going to talk to my doctor about all this, since he has the training to evaluate all this and is no doubt up on the most recent studies.
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1 ReactionJust want to say "Thank you" for posting this. So helpful
Reclast has been benefit to me, but it created a great sadness in my life about appearance with my teeth. I was also very scared to take such high dose because of kidneys.