Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

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

I'm nearly 80 and remember the days when needles were reused by doctors. I've had a shot phobia most of my life. I was worked up enough that I had an RN that lives in my neighborhood come over and help me the first few days. I'm pleasantly surprised by the new technology. Sorry I can't help you in person, but I would recommend a friendly friend to get your started. Best wishes!

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Hello Bone regiment community!
I'm looking for some feedback concerning any personal experiences with Tymlos in relation to dental procedures please.
I'm 58 and in my preparation stages for upcoming spine surgery and want to address my dental implant needs prior. My endocrinologist has prescribed me Tymlos for three months before surgery and 2 yrs post surgery. As I understand it,Forteo doesn't have strong support compatibility with major dental procedures according to my dentist prior to surgery or an extended period of 3 months or more following the dental implants at the earliest before spine surgery. Thank you for any and all support feedback!

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@gingerp

Hello Bone regiment community!
I'm looking for some feedback concerning any personal experiences with Tymlos in relation to dental procedures please.
I'm 58 and in my preparation stages for upcoming spine surgery and want to address my dental implant needs prior. My endocrinologist has prescribed me Tymlos for three months before surgery and 2 yrs post surgery. As I understand it,Forteo doesn't have strong support compatibility with major dental procedures according to my dentist prior to surgery or an extended period of 3 months or more following the dental implants at the earliest before spine surgery. Thank you for any and all support feedback!

Jump to this post

Good evening @gingerp, welcome to Connect. I see this is your first post and it is a timely issue. The first thing I noticed is that you are getting ready for spine surgery. Although I was on Tymlos for two years, I did not have any dental issues. As a matter of fact, I did not have any side effects during the two years on Tymlos. I also had a dental surgeon examine my X-rays before moving on to the bone protector medication after Tymlos. He found nothing of any concern as a result of the Tymlos treatment.

However, I do want you to meet @jenniferhunter. She is a spine surgery patient as well as a Connect Mentor and has been helpful to so many Connect members. Also, my local dentist is very interested in receiving information about members who have dental concerns.

I debated about including this next comment and I won the debate with myself. So, my Mayo endocrinologist has shared with me the current issues about major dental procedures and medical surgery. He feels that the length of these extended periods without mediation in order to facilitate dental implants is controversial. The surgery issues can be uniquely individual based on the medical and dental realities.

May you be safe, free, and protected from inner and outer harm.
Chris

REPLY
@gingerp

Hello Bone regiment community!
I'm looking for some feedback concerning any personal experiences with Tymlos in relation to dental procedures please.
I'm 58 and in my preparation stages for upcoming spine surgery and want to address my dental implant needs prior. My endocrinologist has prescribed me Tymlos for three months before surgery and 2 yrs post surgery. As I understand it,Forteo doesn't have strong support compatibility with major dental procedures according to my dentist prior to surgery or an extended period of 3 months or more following the dental implants at the earliest before spine surgery. Thank you for any and all support feedback!

Jump to this post

Not sure what this means: "As I understand it, Forteo doesn't have strong support compatibility with major dental procedures."

I was under the impression that Tymlos and Forteo had no effect on dental health, issues or procedures.

My dentist seems to think that all bone meds are an issue. I told mine that I didn't believe Tymlos was a problem (I didn't have any procedures planned).

I would double check with your endocrinologist and offer that your dentist could talk with them.

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@windyshores

Not sure what this means: "As I understand it, Forteo doesn't have strong support compatibility with major dental procedures."

I was under the impression that Tymlos and Forteo had no effect on dental health, issues or procedures.

My dentist seems to think that all bone meds are an issue. I told mine that I didn't believe Tymlos was a problem (I didn't have any procedures planned).

I would double check with your endocrinologist and offer that your dentist could talk with them.

Jump to this post

ps Googling several drug sites reveals no effect on dental issues from Tymlos. In fact, Inspire forum indicates benefit in terms of healing dental issues from other bone meds:

https://www.inspire.com/groups/bone-health-and-osteoporosis/discussion/tymlos-and-invasive-dental-work/
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@artscaping

Good evening @gingerp, welcome to Connect. I see this is your first post and it is a timely issue. The first thing I noticed is that you are getting ready for spine surgery. Although I was on Tymlos for two years, I did not have any dental issues. As a matter of fact, I did not have any side effects during the two years on Tymlos. I also had a dental surgeon examine my X-rays before moving on to the bone protector medication after Tymlos. He found nothing of any concern as a result of the Tymlos treatment.

However, I do want you to meet @jenniferhunter. She is a spine surgery patient as well as a Connect Mentor and has been helpful to so many Connect members. Also, my local dentist is very interested in receiving information about members who have dental concerns.

I debated about including this next comment and I won the debate with myself. So, my Mayo endocrinologist has shared with me the current issues about major dental procedures and medical surgery. He feels that the length of these extended periods without mediation in order to facilitate dental implants is controversial. The surgery issues can be uniquely individual based on the medical and dental realities.

May you be safe, free, and protected from inner and outer harm.
Chris

Jump to this post

@gingerp Hello Ginger. I am a spine surgery patient with a C5/C6 fusion and I do have dental implants on my front teeth. That came after my spine surgery. I am not on bone building medication, but I do bioidentical hormone replacement that helps maintain bone. I did have surgery while I was in the process of dental implants for a fractured ankle, so at the time, I had no front teeth to worry about with the intubation procedures. I had surgery again to remove the hardware from my ankle after my dental procedures were complete, and I worried a bit about the intubation chipping my new porcelain teeth, and they used a plastic apparatus instead of the normal one. That irritated my throat for a few days, and it was fine. I had conversations with the anesthesia person about this at the time of surgery. I'm having a DEXA scan today to check on my bone health.

Do you have questions about your spine procedure and getting ready for that? Will your spine procedure place screws into the bone, and is this the concern about bone quality? If it is a lumbar procedure involving rods, the angle and placement of those screws is very important so they don't pull out from the forces of body weight at the lower end of the spine.

REPLY
@artscaping

Good evening @gingerp, welcome to Connect. I see this is your first post and it is a timely issue. The first thing I noticed is that you are getting ready for spine surgery. Although I was on Tymlos for two years, I did not have any dental issues. As a matter of fact, I did not have any side effects during the two years on Tymlos. I also had a dental surgeon examine my X-rays before moving on to the bone protector medication after Tymlos. He found nothing of any concern as a result of the Tymlos treatment.

However, I do want you to meet @jenniferhunter. She is a spine surgery patient as well as a Connect Mentor and has been helpful to so many Connect members. Also, my local dentist is very interested in receiving information about members who have dental concerns.

I debated about including this next comment and I won the debate with myself. So, my Mayo endocrinologist has shared with me the current issues about major dental procedures and medical surgery. He feels that the length of these extended periods without mediation in order to facilitate dental implants is controversial. The surgery issues can be uniquely individual based on the medical and dental realities.

May you be safe, free, and protected from inner and outer harm.
Chris

Jump to this post

Hi Chris
I would like to get in touch with your dentist regarding my dental concerns. I need to start tymlos and am having an issue with my jaw. I have some bone loss and it’s not healing following a root canal that lead to an extraction. I have been to several oral surgeons and can’t seem to get any answers.
Please message me.
Candy

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Just wanted to let you all know that I got my 18 month DEXA results today and my spine went from -3.7 to -2.5! That is borderline osteoporosis. As you know, I started at two clicks and moved up. Most of the 18 months was at 6 or 7 clicks (more at 6 than 7), and I did only a few weeks of full dose 8 clicks in February. So the partial dose works. I still have severe side effects at 8 clicks but not 7, which is interesting.

I see my endocrinologist next week and will discuss 1) continuing Tymlos longer since with partial dose, I have some left 2) Evenity and 3) Reclast but he wants to do a test dose first to see if I tolerate it.

Here is my full DEXA report from this morning. Note the scores as well as the substantial % of change:

INDICATIONS FOR TEST: Osteoporosis, Tymlos, H/O fracture

Findings: L 1 excluded from analysis

Region T-Score
AP Spine -2.5 (2021 was -3.7)
Femoral Neck -3.6 (2021 was -4.1)
Total Hip -2.9 (2021 was -3.3)

Additional data on Z-Score and BMD in g/cm2 is available by clicking the image.

World Health Organization criteria for BMD interpretation classify patients as:
Normal (T-score at or above -1.0)
Osteopenic (T-score between -1.0 and -2.4)
Osteoporotic (T-score at or below -2.5)

At this facility, the least significant change in BMD with 95% confidence is 0.025 g/cm2 at the L1-4 spine, 0.026 g/cm2 at the total hip, and 0.029 g/cm2 at the femoral neck.

Today's examination is compared to the technically similar prior study of 6/12/2021. The % change in BMD since the last examination is as follows:
AP spine 19.1
Total hip 9.4

IMPRESSION:
Based on BMD, diagnosis is osteoporosis. Marked gain in BMD as noted above.

ps I took 800mg calcium/day (I don't eat dairy) and gummies of D3 (2000/day) plus a gummie of D3 and K2 so total D3 was 3,000 units/day, 45 mcg K2. I have labs tomorrow so we will see if Tymlos truly "eats D3" as I once read. That amount of D3 would normally cause a pretty high level of D3 in the blood.

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A few postscripts:
This was not a study. Just one person, me. I am small and thin so that could be a factor. Talk to you doctor about dosing!

Also Tymlos addresses bone quality as well as density. Even with all my fractures, I am much stronger.

REPLY
@windyshores

Just wanted to let you all know that I got my 18 month DEXA results today and my spine went from -3.7 to -2.5! That is borderline osteoporosis. As you know, I started at two clicks and moved up. Most of the 18 months was at 6 or 7 clicks (more at 6 than 7), and I did only a few weeks of full dose 8 clicks in February. So the partial dose works. I still have severe side effects at 8 clicks but not 7, which is interesting.

I see my endocrinologist next week and will discuss 1) continuing Tymlos longer since with partial dose, I have some left 2) Evenity and 3) Reclast but he wants to do a test dose first to see if I tolerate it.

Here is my full DEXA report from this morning. Note the scores as well as the substantial % of change:

INDICATIONS FOR TEST: Osteoporosis, Tymlos, H/O fracture

Findings: L 1 excluded from analysis

Region T-Score
AP Spine -2.5 (2021 was -3.7)
Femoral Neck -3.6 (2021 was -4.1)
Total Hip -2.9 (2021 was -3.3)

Additional data on Z-Score and BMD in g/cm2 is available by clicking the image.

World Health Organization criteria for BMD interpretation classify patients as:
Normal (T-score at or above -1.0)
Osteopenic (T-score between -1.0 and -2.4)
Osteoporotic (T-score at or below -2.5)

At this facility, the least significant change in BMD with 95% confidence is 0.025 g/cm2 at the L1-4 spine, 0.026 g/cm2 at the total hip, and 0.029 g/cm2 at the femoral neck.

Today's examination is compared to the technically similar prior study of 6/12/2021. The % change in BMD since the last examination is as follows:
AP spine 19.1
Total hip 9.4

IMPRESSION:
Based on BMD, diagnosis is osteoporosis. Marked gain in BMD as noted above.

ps I took 800mg calcium/day (I don't eat dairy) and gummies of D3 (2000/day) plus a gummie of D3 and K2 so total D3 was 3,000 units/day, 45 mcg K2. I have labs tomorrow so we will see if Tymlos truly "eats D3" as I once read. That amount of D3 would normally cause a pretty high level of D3 in the blood.

Jump to this post

Great news! While it is still osteoporosis, it is definitely an improvement. I'm really glad.

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