1. < Osteoporosis & Bone Health
Profile picture for shorty321

question about being on osteoporosis medication for 25+ years

Posted by shorty321 @shorty321, Feb 19 8:17am

I haven't started any osteoporosis medication yet. I have an appointment next week to start Evenity, but I am still thinking about how my severe osteoporosis will be managed long-term. If I start Evenity when I am about 58, how will I be able to maintain my Evenity bone density gains long-term without having bad side effects using drugs like Reclast/Prolia/Fosamax? It scares me to think about potentially being on those drugs for decades. The alternative would be to take no medications, and watch my T-scores get worse with time. These are my DEXA Scan results from about six months ago:

Lumbar Spine BMD (L1-L4): T-Score: -4.0
Left Hip BMD (Total): T-Score: -3.0
Left Femoral Neck BMD: T-Score: -3.6
Right Hip BMD (Total): T-Score: -2.9
Right Femoral Neck BMD: T-Score: -3.2

Has anyone had experience with being on osteoporosis medication for 20+ years?

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

Profile picture for njx58
njx58 | @njx58 | Feb 21 10:27am
In reply to @cat1203 "@oopsiedaisy thanks for the clarification. So, did you switch to Evenity because you were suffering side..." + (show)
Profile picture for cat1203 @cat1203

@oopsiedaisy thanks for the clarification. So, did you switch to Evenity because you were suffering side effects from the Tymlos and/or Forteo? I'm currently on Forteo and like you don't yet know if it's helped. Assuming I've had good gains I plan to follow up with Reclast for a year or 2, at which time I hope to go on a drug holiday, even if I have to go back on something eventually. Like you, I hope to avoid spending the rest of my life on osteoporosis meds. @shorty321 I know my responses haven't addressed your question and went off on a little tangent so I apologize for that. I don't have an answer unfortunately and I'm not sure doctors do either, except to just keep switching to different drugs when we hit the time limit on each one. Maybe the best we can do is get a drug holiday between drugs and keep an eye on DEXAs to know when we need to start up with something again.

Jump to this post

@cat1203 Does your doctor order bone marker tests? P1NP and CTX can give you an idea if the medication is working, as opposed to waiting an entire year for your next DEXA scan.

REPLY
1 reply
Profile picture for kristie2
kristie2 | @kristie2 | Feb 21 10:36am
In reply to @cat1203 "@oopsiedaisy thanks for the clarification. So, did you switch to Evenity because you were suffering side..." + (show)
Profile picture for cat1203 @cat1203

@oopsiedaisy thanks for the clarification. So, did you switch to Evenity because you were suffering side effects from the Tymlos and/or Forteo? I'm currently on Forteo and like you don't yet know if it's helped. Assuming I've had good gains I plan to follow up with Reclast for a year or 2, at which time I hope to go on a drug holiday, even if I have to go back on something eventually. Like you, I hope to avoid spending the rest of my life on osteoporosis meds. @shorty321 I know my responses haven't addressed your question and went off on a little tangent so I apologize for that. I don't have an answer unfortunately and I'm not sure doctors do either, except to just keep switching to different drugs when we hit the time limit on each one. Maybe the best we can do is get a drug holiday between drugs and keep an eye on DEXAs to know when we need to start up with something again.

Jump to this post

@cat1203 one of the best methods would be to get a CTX & P1NP every 3 months which would help determine if you are losing bone and or gaining bone. During a drug holiday.

REPLY
2 replies
Profile picture for cat1203
cat1203 | @cat1203 | Feb 21 12:13pm
In reply to @njx58 "@cat1203 Does your doctor order bone marker tests? P1NP and CTX can give you an idea..." + (show)
Profile picture for njx58 @njx58

@cat1203 Does your doctor order bone marker tests? P1NP and CTX can give you an idea if the medication is working, as opposed to waiting an entire year for your next DEXA scan.

Jump to this post

@njx58 my former rheum (currently in search of a new one, as they are no longer in my insurance network) does not use bone markers to guide clinical treatment. But I had them done anyway on my own, first as a baseline before treatment with Forteo and then after 2 or 3 months (I don't remember which off the top of my head) and the second test did show it was working. I haven't had the tests repeated since. I'm now 16 months in. I'm having a DEXA in March or April.

REPLY
Profile picture for cat1203
cat1203 | @cat1203 | Feb 21 12:16pm
In reply to @kristie2 "@cat1203 one of the best methods would be to get a CTX & P1NP every 3..." + (show)
Profile picture for kristie2 @kristie2

@cat1203 one of the best methods would be to get a CTX & P1NP every 3 months which would help determine if you are losing bone and or gaining bone. During a drug holiday.

Jump to this post

@kristie2 I hadn't heard of that protocol before. The frequency sounds a little excessive, though the concept sounds good. Is there a source/study for that approach you can point me to? Thanks.

REPLY
1 reply
Profile picture for kristie2
kristie2 | @kristie2 | Feb 21 1:34pm
In reply to @cat1203 "@kristie2 I hadn't heard of that protocol before. The frequency sounds a little excessive, though the..." + (show)
Profile picture for cat1203 @cat1203

@kristie2 I hadn't heard of that protocol before. The frequency sounds a little excessive, though the concept sounds good. Is there a source/study for that approach you can point me to? Thanks.

Jump to this post

@cat1203 If you are doing a drug holiday it’s a good idea to keep on track of these labs also when on bone medications it’s a good idea to see if they are working. I am under the care of an endocrinologist and have labs checked every 3 months. I also follow recommendations from Dr. Doug Lucas who has many YouTube videos, Kevin Ellis bone coach along with Keith McCormick,DC. You can also find many articles on Pubmed

REPLY
1 reply
Profile picture for mcchesney
mcchesney | @kathleen1314 | Feb 21 1:55pm
In reply to @kristie2 "@cat1203 If you are doing a drug holiday it’s a good idea to keep on track..." + (show)
Profile picture for kristie2 @kristie2

@cat1203 If you are doing a drug holiday it’s a good idea to keep on track of these labs also when on bone medications it’s a good idea to see if they are working. I am under the care of an endocrinologist and have labs checked every 3 months. I also follow recommendations from Dr. Doug Lucas who has many YouTube videos, Kevin Ellis bone coach along with Keith McCormick,DC. You can also find many articles on Pubmed

Jump to this post

@kristie2
Yes, kristie is bringing up a good point. When best to use serum bone labs (BTMs)?

What I am seeing is that they are exceptionally useful for managing the "cycling" of osteoporosis drugs and even continued use of these drugs. The results are helpful to know which drug to use and when.

Examples:
When you pause bisphosphonates (a "drug holiday"), BTMs like s-CTX (resorption) and P1NP (formation) help your doctor decide when to restart. A significant rise in these markers indicates bone loss is accelerating and therapy should resume.
Or...
Certain drugs, like Prolia, cannot simply be stopped; they must be followed by another agent (usually a bisphosphonate) to prevent a rapid rebound in bone loss. BTMs verify if the follow-up drug is successfully "catching" the bone before it weakens.
More...
Since oral bisphosphonates are notoriously hard to absorb, BTMs can confirm within 3 months if the drug is actually working or if you need to switch to an IV version.

REPLY
1 reply
Profile picture for kristie2
kristie2 | @kristie2 | Feb 21 3:17pm
In reply to @kathleen1314 "@kristie2 Yes, kristie is bringing up a good point. When best to use serum bone labs..." + (show)
Profile picture for mcchesney @kathleen1314

@kristie2
Yes, kristie is bringing up a good point. When best to use serum bone labs (BTMs)?

What I am seeing is that they are exceptionally useful for managing the "cycling" of osteoporosis drugs and even continued use of these drugs. The results are helpful to know which drug to use and when.

Examples:
When you pause bisphosphonates (a "drug holiday"), BTMs like s-CTX (resorption) and P1NP (formation) help your doctor decide when to restart. A significant rise in these markers indicates bone loss is accelerating and therapy should resume.
Or...
Certain drugs, like Prolia, cannot simply be stopped; they must be followed by another agent (usually a bisphosphonate) to prevent a rapid rebound in bone loss. BTMs verify if the follow-up drug is successfully "catching" the bone before it weakens.
More...
Since oral bisphosphonates are notoriously hard to absorb, BTMs can confirm within 3 months if the drug is actually working or if you need to switch to an IV version.

Jump to this post

@kathleen1314 Thank you for expounding on this further. These bone markers have been very important in my journey along with the DEXA. I started out with a spine T score of -4.6 after a year on Evenity it was-3.3 . Then I had 2 injections of Prolia and it was -3.2. Due to the DEXA and bone markers we decided to go on to Reclast since Prolia wasn’t working for me.

REPLY
Profile picture for yds
yds | @yds | Feb 21 4:01pm
In reply to @kathleen1314 "I have been on the supplement strontium citrate at a medical dose level for about 28..." + (show)
Profile picture for mcchesney @kathleen1314

I have been on the supplement strontium citrate at a medical dose level for about 28 years. Normal bone density now, normal bone quality and no side effects, no fractures.

I did cycle to a maintenance dose for a short period of time and maintained my bone density with just a small loss. But with age, it seemed smart to up the dose back to the osteoporosis dose. Plus, my joints etc just feel better on the higher dose.

Jump to this post

@kathleen1314, thanks. What does being on a medical dose level for strontium citrate mean? I recently started taking AlgaeCal Plus (two tabs after breakfast and two tabs after dinner) and AlgaeCal Strontium Boost (2 tabs before bed at least 2 hours after taking AlgaeCal Plus). My oncologist strongly advised against HRT for me because I am a breast cancer survivor. I am also starting on the Onero exercise program.

REPLY
1 reply
Profile picture for mcchesney
mcchesney | @kathleen1314 | Feb 22 7:40am
In reply to @yds "@kathleen1314, thanks. What does being on a medical dose level for strontium citrate mean? I recently..." + (show)
Profile picture for yds @yds

@kathleen1314, thanks. What does being on a medical dose level for strontium citrate mean? I recently started taking AlgaeCal Plus (two tabs after breakfast and two tabs after dinner) and AlgaeCal Strontium Boost (2 tabs before bed at least 2 hours after taking AlgaeCal Plus). My oncologist strongly advised against HRT for me because I am a breast cancer survivor. I am also starting on the Onero exercise program.

Jump to this post

@yds
Medical dose for strontium mainly means at a level higher than what is found in the environment naturally and matching the research established level that ha been shown to impact osteoporosis.

680mg usually at night away from all calcium supplements/products

REPLY
1 reply
Profile picture for yds
yds | @yds | Feb 22 9:35am
In reply to @kathleen1314 "@yds Medical dose for strontium mainly means at a level higher than what is found in..." + (show)
Profile picture for mcchesney @kathleen1314

@yds
Medical dose for strontium mainly means at a level higher than what is found in the environment naturally and matching the research established level that ha been shown to impact osteoporosis.

680mg usually at night away from all calcium supplements/products

Jump to this post

@kathleen1314, thank you for your quick response.

REPLY
Please sign in or register to post a reply.