Best medication choice after two year Temlos regime

Posted by mautaylor @mautaylor, Feb 26 5:04pm

Great results after two years of Temlos. I am scheduled for a 5 mgReclast infusion next week to lock in the gains. After reading all comments on this forum and knowing I have questionable teeth, I don’t want to proceed. Pharmacist suggested Boniva( a bisphosphonate but available in a three month injection, so not a year long commitment) Can’t get an appt with an endo doc for months, and haven’t had any osteoporosis meds for about 6 weeks which is nerve wracking.. Any help is so appreciated regarding my dilemma..

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

Fosamax is another possibility. Also, Evenity, if you need further bone building. Who prescribed your Tymlos? Surely you can see them for a follow-up plan. You shouldn't go months without something to follow up Tymlos.

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I too need to avoid bisphosphonates due to questionable teeth and GERD . I am planning raloxifene after the Tymlos

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@daisylou

I too need to avoid bisphosphonates due to questionable teeth and GERD . I am planning raloxifene after the Tymlos

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That is the medication (Raloxisene)( my dentist suggested as I had tried Fosamax and Actenol first before Tymlos and didn’t tolerate it well. My doc who prescribed Temlos has retired and my new PCP is unfamiliar with all these drugs and side effects.
Thank you so much for your suggestion!

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If you can't tolerate oral bisphosphonates, then available IV forms are reclast (every 1-2 years, endo makes the call) or boniva (every 3mo). Reclast is a lot stronger than boniva.

The following is an excerpt from a review paper on bisphosphonates, if you are concerned about the association of their use and potential OsteoNecrosis of the Jaw:

"Whereas the incidence of ONJ is estimated to be 1 to 10 per 100 oncology patients, the risk of ONJ appears to be substantially lower among patients receiving oral bisphosphonate therapy for osteoporosis, with an estimated incidence of approximately 1 in 10,000 to 1 in 100,000 patient treatment years, although this estimate is based on incomplete data.114 Associated risk factors appear to be poor oral hygiene, a history of dental procedures or denture use, and prolonged exposure to high IV bisphosphonate doses.115,116 Whether concomitant chemotherapy or glucocorticoid use leads to an increased risk of ONJ is unknown.117 Once established, care for ONJ is largely supportive, with antiseptic oral rinses, antibiotics, and limited surgical debridement as necessary leading to healing in most cases.118 Although evidence-based guidelines at this time have not been established for any single malignancy or bisphosphonate, careful attention to dental hygiene including an oral cavity examination for active or anticipated dental issues, both before bisphosphonate initiation and throughout treatment, is likely to be paramount."

Basically the risk is very low if you just start out with a bisphosphonate for osteoporosis (not with a high dose and/or higher frequency as in oncological use). Of course double check with a dentist or an oral surgeon. Hope this is somewhat helpful.

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@mayblin

If you can't tolerate oral bisphosphonates, then available IV forms are reclast (every 1-2 years, endo makes the call) or boniva (every 3mo). Reclast is a lot stronger than boniva.

The following is an excerpt from a review paper on bisphosphonates, if you are concerned about the association of their use and potential OsteoNecrosis of the Jaw:

"Whereas the incidence of ONJ is estimated to be 1 to 10 per 100 oncology patients, the risk of ONJ appears to be substantially lower among patients receiving oral bisphosphonate therapy for osteoporosis, with an estimated incidence of approximately 1 in 10,000 to 1 in 100,000 patient treatment years, although this estimate is based on incomplete data.114 Associated risk factors appear to be poor oral hygiene, a history of dental procedures or denture use, and prolonged exposure to high IV bisphosphonate doses.115,116 Whether concomitant chemotherapy or glucocorticoid use leads to an increased risk of ONJ is unknown.117 Once established, care for ONJ is largely supportive, with antiseptic oral rinses, antibiotics, and limited surgical debridement as necessary leading to healing in most cases.118 Although evidence-based guidelines at this time have not been established for any single malignancy or bisphosphonate, careful attention to dental hygiene including an oral cavity examination for active or anticipated dental issues, both before bisphosphonate initiation and throughout treatment, is likely to be paramount."

Basically the risk is very low if you just start out with a bisphosphonate for osteoporosis (not with a high dose and/or higher frequency as in oncological use). Of course double check with a dentist or an oral surgeon. Hope this is somewhat helpful.

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This article completely ended my worry about ONJ as I see my dentist every 3 to 6 months. I’m passing this on to him as well..
even with a 21% increase in bone density in my spine , my T score is -1.9. I’m wondering if the Boniva will hold my gains( assuming I haven’t lost ground by not having medication for a month and 1/2)
Thank you for all your help..

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@mautaylor

This article completely ended my worry about ONJ as I see my dentist every 3 to 6 months. I’m passing this on to him as well..
even with a 21% increase in bone density in my spine , my T score is -1.9. I’m wondering if the Boniva will hold my gains( assuming I haven’t lost ground by not having medication for a month and 1/2)
Thank you for all your help..

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This is remarkable improvemnts, congratulations @mautaylor !

Boniva iv is a lot less used and weaker than reclast. If I were you, I'd request endo do a "baseline" of bone resorption marker CTX before iv Boniva and monitor it periodically while on it just to make sure it keeps ctx (resorption) low enough to preserve bmd that was gained. Each endo may have different CTx criteria to go with. However, if you go with reclast, this test may not be necessary.

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@mautaylor

That is the medication (Raloxisene)( my dentist suggested as I had tried Fosamax and Actenol first before Tymlos and didn’t tolerate it well. My doc who prescribed Temlos has retired and my new PCP is unfamiliar with all these drugs and side effects.
Thank you so much for your suggestion!

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Do you have an endocrinologist or Osteoporosis specialist near you? I hope you can find someone knowledgeable to help you. I'm the meantime we are here.

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@mautaylor

This article completely ended my worry about ONJ as I see my dentist every 3 to 6 months. I’m passing this on to him as well..
even with a 21% increase in bone density in my spine , my T score is -1.9. I’m wondering if the Boniva will hold my gains( assuming I haven’t lost ground by not having medication for a month and 1/2)
Thank you for all your help..

Jump to this post

A T-score of -1.9 is osteopenia, not osteoporosis, so that's great! Look, we're not going to get our scores down to zero. It's a question of what we can live with, and I think -1.9 is something you can live with if you can maintain it.

Think about all the people you may know who have osteoporosis and have never even had a DEXA scan. At least you are fighting back!

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I'm in the same position. Finished two years of Tymlos and am having trouble getting an appointment with an endocrinologist. I've been off Tymlos for six weeks and am concerned about losing bone density. I've read most loss occurs in the first 1-3 months. So, just talked to Dr. McCormick about going back on the Tymlos until I see an endocrinologist (appt last of April) and he agreed. It's not ideal, but I'm in a tough spot. This time I won't stop the Tymlos until I have the Evenity in my hand.

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Thanks to everyone for sharing. There’s so much information and I am hoping to find a new path and understand better how the various paths can improve my scores

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