1. < Osteoporosis & Bone Health

Gap between Tymlos and Reclast Due to Insurance

Posted by seelex02 @seelex02, Feb 6 7:02pm

Hi Everyone, I have been off Tymlos for two weeks waiting for insurance approval for my first Reclast infusion. I am really nervous about this! But I've heard up to a one-month gap is okay?

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mautaylor | @mautaylor | Feb 6 8:35pm

Hello; I have just completed a 2 year regimen of Tymlos and am also waiting for the insurance and infusion folks to contact me. Have you done much research on Reclast vs Prolia? Any concerns if you need to have dentistry done or don’t tolerate it very well since it’s a once a year infusion?

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seelex02 | @seelex02 | Feb 7 8:22pm

Hi! Thank you @mautaylor for commenting, it's so nice to hear from someone going through the same thing!

I haven't done much research. I consulted my endocrinologist at Cedars Sinai in LA and also Dr. Paul Miller (https://millerbonecenter.com/).

My plan is to check my P1NP and CTX every 3-6 months while on Reclast to make sure I am not losing bone and to have a Dexa in one year.

Just an FYI, but in addition to hydrating before the infusion, Dr. Miller suggested a 30 min as opposed to a 15 min timeframe on the infusion.

I fractured L1 at the gym (hip-hop dancing) so I know I will be on some type of regimen for the rest of my life but I'm pleased with the results from Tymlos, which increased not only my BMD but my TBS. My REMS score for spine is now in the normal range. But I consider this a chronic condition. I know what a fracture feels like and I don't want to experience that again!

I am sorry that we patients have to do so much work to ensure a safe and effective continuum of care, and I really appreciate the support that we give one another! Best wishes!

REPLY
1 reply
loriesco | @loriesco | Feb 8 9:48am

yes, it is fine. Make sure your doctor's team prepare you BEFORE you have the Reclast. No one prepped me so my experience was horrible. (I was one of the 10% first timers with side effect) of which could have been avoided. Make sure you carve out time and have someone around to take care of your needs if you don't feel well after your first infusion. Prep is lots of hydration and Tylenol, and be your best before going in. I was compromised by a major surgery and no NSAIDs onboard before mine. My position is my bones were in such bad shape that the infusion STIMULATED an EXTREME immune response. I've had this happen before with meds. So I'm clear that was way. Expect - next one will be smooth sailing after doing Tymlos and BHRT for two years.

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1 reply
mautaylor | @mautaylor | Feb 9 12:12am
In reply to @loriesco "yes, it is fine. Make sure your doctor's team prepare you BEFORE you have the Reclast...." + (show)
@loriesco

yes, it is fine. Make sure your doctor's team prepare you BEFORE you have the Reclast. No one prepped me so my experience was horrible. (I was one of the 10% first timers with side effect) of which could have been avoided. Make sure you carve out time and have someone around to take care of your needs if you don't feel well after your first infusion. Prep is lots of hydration and Tylenol, and be your best before going in. I was compromised by a major surgery and no NSAIDs onboard before mine. My position is my bones were in such bad shape that the infusion STIMULATED an EXTREME immune response. I've had this happen before with meds. So I'm clear that was way. Expect - next one will be smooth sailing after doing Tymlos and BHRT for two years.

Jump to this post

Thank you so much for your feedback. Endocrinologists are booking out as far as July in my part of the world and my primary is unfamiliar with these meds, so I really appreciate your responses. Because nurses are on strike, the soonest I can get scheduled for the Reclast infusion is the first week of March. I will definitely heed your good advice..Can you explain how you came to the decision to
do BHRT? My retired OB gyn thinks, even though I am an old woman, I should be taking hormones. Every other doc is completely opposed…

REPLY
1 reply
loriesco | @loriesco | Feb 10 11:16am
In reply to @mautaylor "Thank you so much for your feedback. Endocrinologists are booking out as far as July in..." + (show)
@mautaylor

Thank you so much for your feedback. Endocrinologists are booking out as far as July in my part of the world and my primary is unfamiliar with these meds, so I really appreciate your responses. Because nurses are on strike, the soonest I can get scheduled for the Reclast infusion is the first week of March. I will definitely heed your good advice..Can you explain how you came to the decision to
do BHRT? My retired OB gyn thinks, even though I am an old woman, I should be taking hormones. Every other doc is completely opposed…

Jump to this post

Thanks for your question @mautaylor - I saw older women like me were restarting or starting for the first time in their 60s, 70s, 80s! Then I read the research. At the time I did BHRT (21 years ago for 11 years) it was not recommended to do more than 8 -10 years. So I naturally weaned off. Reading the literature NOW - you can stop and restart after 10 years no problem. I also have cancer risk so I choose ALL topical. read all the research - give it to someone who can help you - talk to SPECIALISTS like Hormone and Endocrine doctors who have read the literature too - and then decide. I feel so much better in every way. I don't need much either. I test regularly for cancer growth in my pelvic region and breast. Take blood tests too.

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1 reply
mautaylor | @mautaylor | Feb 10 7:21pm

Thank you so much for your response. I’m quite sure my primary care doc will not be in favor of this treatment but, based on the ongoing problems I’ve had with my teeth, options are limited.. I so appreciate finding this Forum as I have found so much great information!

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seelex02 | @seelex02 | Feb 10 8:19pm
In reply to @loriesco "Thanks for your question @mautaylor - I saw older women like me were restarting or starting..." + (show)
@loriesco

Thanks for your question @mautaylor - I saw older women like me were restarting or starting for the first time in their 60s, 70s, 80s! Then I read the research. At the time I did BHRT (21 years ago for 11 years) it was not recommended to do more than 8 -10 years. So I naturally weaned off. Reading the literature NOW - you can stop and restart after 10 years no problem. I also have cancer risk so I choose ALL topical. read all the research - give it to someone who can help you - talk to SPECIALISTS like Hormone and Endocrine doctors who have read the literature too - and then decide. I feel so much better in every way. I don't need much either. I test regularly for cancer growth in my pelvic region and breast. Take blood tests too.

Jump to this post

Chiming in to thank you @loriesco I will discuss BHRT with my doctor.

REPLY
newenglandtransplant | @newenglandtransplant | Feb 10 9:06pm
In reply to @seelex02 "Hi! Thank you @mautaylor for commenting, it's so nice to hear from someone going through the..." + (show)
@seelex02

Hi! Thank you @mautaylor for commenting, it's so nice to hear from someone going through the same thing!

I haven't done much research. I consulted my endocrinologist at Cedars Sinai in LA and also Dr. Paul Miller (https://millerbonecenter.com/).

My plan is to check my P1NP and CTX every 3-6 months while on Reclast to make sure I am not losing bone and to have a Dexa in one year.

Just an FYI, but in addition to hydrating before the infusion, Dr. Miller suggested a 30 min as opposed to a 15 min timeframe on the infusion.

I fractured L1 at the gym (hip-hop dancing) so I know I will be on some type of regimen for the rest of my life but I'm pleased with the results from Tymlos, which increased not only my BMD but my TBS. My REMS score for spine is now in the normal range. But I consider this a chronic condition. I know what a fracture feels like and I don't want to experience that again!

I am sorry that we patients have to do so much work to ensure a safe and effective continuum of care, and I really appreciate the support that we give one another! Best wishes!

Jump to this post

Hi, @seelex02 I’m curious about the planned interval between your reclast infusions. Is the plan for you to have an infusion once per year, or is the thinking that you may be able to space them out further depending on your bone markers?

I’ve recently seen a study that looked at extending time between doses based on bone markers, and I’ve been curious if this is being considered in practice. I’ll be finishing up Evenity in August so am trying to learn what I can about next steps. I’m 53 and want to make the best decisions I can for decades of management.
https://academic.oup.com/jbmrplus/article/8/7/ziae072/7685663

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