Can I receive two reclast infusions in less than a year?

Posted by snoopyluv345 @snoopyluv345, Aug 11 11:44am

If my recent high CTx scores indicate the Reclast isn't still working, can I receive a second infusion before the 12 months is up?

I am transitioning from Prolia to Reclast. My doctor stated that Reclast is a once a year infusion "as indicated by the FDA". Yet I read others have received a second infusion at six months. I am concerned with the rebound effect of Prolia.

Thank you.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@snoopyluv345 Keith McCormick, in his book "Great Bones" discusses the crucial need to do CTX to determine the best timing for Reclast. He proposes that if taken too early Reclast may not work, and if taken too late, bone loss may have already happened along with increased fracture risk. The standard timing is 6 months after the last Prolia, he wrote, and instead he suggests individualizing it,

How long after Reclast did you do the CTX? Was it after fasting and early in the morning? Do you have kidney issues that might raise it? I found all these questions were relevant for me and that things are complicated! My own endo doesn't use CTX testing because he says it does not tell the whole story of what is going on in bone. It is so hard to know what to think!

Maybe you could talk with McCormick. Indicate that it is time-intensive. He charges $350 for an initial consultation, I believe, and $85 thereafter for 15 minutes. He works by phone or in person.

McCormick is not a replacement for your doctor and cannot prescribe, of course, but he could give you guidance. You would still need to discuss with your doctor. Do you have an endocrinologist?

REPLY
@windyshores

@snoopyluv345 Keith McCormick, in his book "Great Bones" discusses the crucial need to do CTX to determine the best timing for Reclast. He proposes that if taken too early Reclast may not work, and if taken too late, bone loss may have already happened along with increased fracture risk. The standard timing is 6 months after the last Prolia, he wrote, and instead he suggests individualizing it,

How long after Reclast did you do the CTX? Was it after fasting and early in the morning? Do you have kidney issues that might raise it? I found all these questions were relevant for me and that things are complicated! My own endo doesn't use CTX testing because he says it does not tell the whole story of what is going on in bone. It is so hard to know what to think!

Maybe you could talk with McCormick. Indicate that it is time-intensive. He charges $350 for an initial consultation, I believe, and $85 thereafter for 15 minutes. He works by phone or in person.

McCormick is not a replacement for your doctor and cannot prescribe, of course, but he could give you guidance. You would still need to discuss with your doctor. Do you have an endocrinologist?

Jump to this post

I do correspond with Keith who recommended CTx testing and the second infusion if necessary. I gave a copy of Keith's book to my doctor before the infusion, along with his plan on transitioning from Prolia to Reclast on a separate page. A second infusion was agreed upon but then cancelled a few days before, stating the FDA once-a-year reason. My doctor also does not do CTx testing but agreed to the plan.
I have completed six CTx tests ( two at the end of the Prolia, four since starting the Reclast) Yes I fasted, with no biotin or collagen, and with 7:30 am tests. We did kidney testing before the Reclast and everything was normal. Unfortunately, my endo is not interested in working with me in this area. I can see her for thyroid issues only.

I'd appreciate hearing from others indicating that it is possible to receive another infusion now.

Thanks so much for your thoughtful response!

REPLY

Hi @snoopyluv345 this paper is based on an observational study you probably have already read. Table 2 and Figure 2 in "Result" showed correlation between lower ctx and stable bmd.
https://www.sciencedirect.com/science/article/pii/S8756328223000972
In "Discussion", authors wrote, "An adequate response for the management of denosumab discontinuation is defined as “a level of sCTX below the mean found in healthy premenopausal women, with a threshold below 280 ng/l” [24]. Higher doses or higher frequency of BP administration than those used in the treatment of osteoporosis could be required. Recommending a standardized BP treatment would be ideal, but it may be necessary to adjust the dose and/or frequency of BP administration once the sCTX exceeds the indicated threshold".

You could check out their reference article #24 for their source of info.

Finding a right doctor who does not hesitate to do an off-label use of a pharmaceutical when necessary based on clinical experience is challenging.

REPLY
@mayblin

Hi @snoopyluv345 this paper is based on an observational study you probably have already read. Table 2 and Figure 2 in "Result" showed correlation between lower ctx and stable bmd.
https://www.sciencedirect.com/science/article/pii/S8756328223000972
In "Discussion", authors wrote, "An adequate response for the management of denosumab discontinuation is defined as “a level of sCTX below the mean found in healthy premenopausal women, with a threshold below 280 ng/l” [24]. Higher doses or higher frequency of BP administration than those used in the treatment of osteoporosis could be required. Recommending a standardized BP treatment would be ideal, but it may be necessary to adjust the dose and/or frequency of BP administration once the sCTX exceeds the indicated threshold".

You could check out their reference article #24 for their source of info.

Finding a right doctor who does not hesitate to do an off-label use of a pharmaceutical when necessary based on clinical experience is challenging.

Jump to this post

No, I have not seen that study, so thank you for passing it on!
And yes I agree it's difficult finding the right doctor; my search took quite a while and I thought I had found the person.

I would appreciate hearing from anyone who has received two infusions in less than twelve months. It's not an insurance thing as I am happy to pay out of pocket. I want to prevent fractures.

Thank you.

REPLY
@snoopyluv345

No, I have not seen that study, so thank you for passing it on!
And yes I agree it's difficult finding the right doctor; my search took quite a while and I thought I had found the person.

I would appreciate hearing from anyone who has received two infusions in less than twelve months. It's not an insurance thing as I am happy to pay out of pocket. I want to prevent fractures.

Thank you.

Jump to this post

I am having a Reclast infusion every 3 months but at a low dose. Maybe your doctor would agree to a 1 mg dose, with retest of CTX and reassesment a couple of months later. Of course I have no idea if a 1mg dose would be helpful in the context of rebound from Prolia. It would be best to get the 5mg. I am curious if there is a lag time and your CTX might actually come down after the one infusion. I feel like there is so much that doctors don't know so we don't either.

Hoping the link by @mayblin helps. Extremely helpful.

REPLY

That's a great idea but my CTx scores are higher now than they were when I received the initial dose, so a full second dose is needed. Keith said only about 5% of patients find themselves in my situation so doctors probably don't see it often since most patients don't monitor with CTx, plus most aren't transitioning from Prolia.

Any members on here who transitioned from Prolia to Reclast and received a second infusion in the first year to avoid the rebound?

Thanks for answering !

REPLY

While I have not personally transitioned off of Prolia yet, I do have some insight. Dr. McCormick is a chiropractor that has done a lot of research and has helped a lot of people, however, he might not be up on the latest recommendations from the doctors that are running the studies on transitioning away from Prolia. At the 2024 World Congress of Osteoporosis, Dr. Bente Langdahl, who is a main author of many studies on this subject, strongly recommended starting Reclast immediately after Prolia treatment (6 months after the last Prolia shot). If you wait until it starts rising, it becomes more difficult to blunt the rise of CTX. Dr. Serge Ferrari, also presenting echoed the same advice. After the first Reclast infusion, then start watching CTX and re-dose with Reclast if CTX rises above baseline. You might end up taking three or even four infusions in the first year depending on your response. It has been shown that if you have a high CTX baseline and you are a long term Prolia user, you will have a more difficult time blunting the rise in CTX.

REPLY
@michaellavacot

While I have not personally transitioned off of Prolia yet, I do have some insight. Dr. McCormick is a chiropractor that has done a lot of research and has helped a lot of people, however, he might not be up on the latest recommendations from the doctors that are running the studies on transitioning away from Prolia. At the 2024 World Congress of Osteoporosis, Dr. Bente Langdahl, who is a main author of many studies on this subject, strongly recommended starting Reclast immediately after Prolia treatment (6 months after the last Prolia shot). If you wait until it starts rising, it becomes more difficult to blunt the rise of CTX. Dr. Serge Ferrari, also presenting echoed the same advice. After the first Reclast infusion, then start watching CTX and re-dose with Reclast if CTX rises above baseline. You might end up taking three or even four infusions in the first year depending on your response. It has been shown that if you have a high CTX baseline and you are a long term Prolia user, you will have a more difficult time blunting the rise in CTX.

Jump to this post

Yes, Dr McCormick does agree with Dr. Langdahl's advice for transitioning off of Prolia and onto Reclast. He includes these directions in his "Great Bones" book. It's my doctor who has changed his mind, now that I need a second infusion, declaring "a 5mg infusion is only allowed once a year as indicated by the FDA." My rising CTx scores carry no weight with him.

Thanks for answering. I appreciate it!

REPLY

I see you have gotten good answers. I asked the endocrinologist I see and he said that he would definitely give a second dose of Reclast to a patient for whom the medication isn't yet effective. He added that it is effective for everyone except for some transisioning off Prolia.
It's so good that you are on top of this.
Best luck with the new endocrinologist.

REPLY
Please sign in or register to post a reply.