Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
@gravity3 yes I did the prep with one hour infusion with saline. I have a history of autoimmune disease and none of that helped.
-
Like -
Helpful -
Hug
1 Reaction@awfultruth agreed. I most certainly would have been hospitalized.
-
Like -
Helpful -
Hug
1 Reaction@mayblin I am so grateful that I found this site and learn so much from others like yourself! Thank you for your responses to my particular situation! I'm also lucky in that I didn't start osteoporosis medication until I was 75 and that's better than many who have had to reckon with medications at earlier ages.
My plan is to try to do another CTX on my own. I'll give the phlebotomist no more than 3 sticks. If they fail, so be it. That was what happened to me last time. On the other hand, I've had hospital-based nurses get an I.V. started in one stick. There really are different skill levels and I'll hope for the best.
Spoke with my hospital about the Medicare coverage for the Dexa and they doubt Medicare will cover it since it's before the 2 years. Assuming that would happen, the hospital said my out-of-pocket cost would be about $320. If denied, I'll appeal and if that doesn't work. I'll pay. It's worth it to me to have that Dexa scan.
And I'm pretty much counting on having that second Zometa infusion the end of October, one year after the first. Had my breast cancer spread to my bones, I'd be using the 6 month interval schedule. When I pressed my oncologist for the primary purpose of Zometa - is it to prevent the breast cancer moving to the bones or primarily to address bone loss - she said it was the bone loss.
It's perverse that Zometa is used to prevent fractures from bone loss and the same drug can risk causing other bone-related injuries like AFF or jaw necrosis!
-
Like -
Helpful -
Hug
2 Reactions@prarysky
Can you doctor finagle a dexa sooner....??
@wilweten
Yes, thanks for the correction. Alendronate is certainly a bisphosphonate , and Forteo aka teriparatide, an anabolic.
Good luck to all of us on this journey.
-
Like -
Helpful -
Hug
2 Reactions@gravity3 She's going to try which is more than my oncologist was willing to do. Both are at Northwestern and say that they've tried to order dexa scans sooner and all have been denied. At least my endocrinologist was willing to write the order but I don't have high hopes for coverage. This despite the fact it's useful to know what has happened to my bones since starting the letrozole. Oh vey!
-
Like -
Helpful -
Hug
1 Reaction@prarysky Your hospital and other folks doctors who say you can only get DXAs every two years are doing everyone a great disservice. There is a general original Medicare guideline for screening for osteoporosis which says, DXAs is limited to every 23 months. But Medicare specifies a number of exceptions to this general screening guideline. One exception is for monitoring the effect of osteoporosis drugs. These exceptions are stated in the Medicare guidelines and there are appropriate codes to go along with those exceptions. The problem for many of us is not the Medicare rule but the doctors and staff not knowing the rules well or being willing to make the small extra effort.
I've had 6 or 7 DXAs over the past few years and most of those were done around a year apart. I've also paid for them when I wanted to know where I was at in less than a year's time.
BTW I checked this with the two AI programs I've been experimenting with, ChatGPT (my favorite) and Claude. Both gave excellent answers when asked about the supposed two year limit. They can list the general rule, the exceptions, the codes and how the reason for the DXA should be stated and so on. I prefer ChatGPT usually, but they are complementary so on important matters I sometimes use both. Remember they are not perfect and can make mistakes and give wrong answers, but that is more of a relief to me at this point than a problem. Oh yes, I'm using the free desktop windows versions of those at present.
Good luck on getting a DXA scan when you need it!
-
Like -
Helpful -
Hug
3 Reactions