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.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Thank you @windyshores, @susanfalcon52, @hungrybirder and @normahorn for your replies. I am saving the reclast protocols of members as well as instructions from @gently in a file so that when/if I need to do reclast I know what to ask my doctor for. Also bookmarking.
First time my MD ordered IV hydration for an hour and then Reclast for an hour. Second time the IV hydration and Reclast were given simultaneously over one hour. I have kidney disease and afib so he is very careful.
I saw my rheumatologist yesterday. I had the Reclast infusion in his office in June.
I was unhappy with him at one time, but became more unhappy with the endocrinologist who was following me. The rheumatologist has really shaped up, has educated himself about the disease, the drugs, the side effects, etc.
yes, he believes in side effects.
So, he said that I could/should have second Reclast infusion in two years. We scheduled it for
June 2026.
That’s great that you can wait two years and that your doctor has educated himself about osteoporosis! Was this based on your dexa results that you are able to skip a year of reclast?
@susanfalcon congratulations on inspiring your doctor and getting a flexible customized protocol in response. You are a great example for us!
bluebonnet,
My understanding was that two years is the Reclast protocol . At least, it is with this rheumatologist.
@susanfalcon52 Susan 1 year is the standard. All the docs seem uninformed that there are studies showing that Reclast is effective much longer than that. Knowledgeable bone people like Lani Simpson suggest using ctx to guide when you need your next Reclast shot. If ctx stays low you then Reclast is still working and you don't need another shot. That could be a year possibly but my memory is that it would more likely be 18 months or two years or more. I'm not certain my memory is correct on the details of that.
windyshores,
Thank You!
I feel like I am on a drug holiday!