1. < Osteoporosis & Bone Health

Worried about starting Tymlos Wednesday and question about P1NP score

Posted by hopeandhope @hopeandhope, Oct 14 11:59pm

Hi! I am supposed to start Tymlos Wednesday and I am nervous and scared and worried that it means I will be starting a lifetime of these drugs, so I want to share some background and get some assurance if I am doing the right thing.
Background:
Secondary osteoporosis due to ideopathic hypercalciuria (under control now)
61 years old
No broken bones
Good diet and supplements; active and regular walking (spotty resistance and strength training which I am seeing a PT to get a good daily regimen that I will stick to - much motivation here)
DEXAs - osteopenia hips and femoral neck; spine -3.2 in 2017 - started raloxifene and spine went to -2.4, then -2.5, and in 2024 -3.2. Raloxifene seems to have stopped working.
Current labs - D, Calcium, Protein, and all others in the metabolic panels and more that my endocrinologist ordered are normal and healthy range; no red flags here; 24-hour urine test is normal
First time having these tests - P1NP is 29 mcg/L (reference range for female to 60 years is 20-108 mcg/L; no reference above age 60) and CTX is 271 pg/ml (reference range for female to 49 years is 50-465 pg/ml; no reference above age 49)
Goal: My goal is to get back down to osteopenia level, stick with consistent diet and exercise, and go off meds as long as I can after Tymlos (and whatever I have to take immediately after to lock in the gains - I'm more worried about the drug to take after Tymlos). So I am thinking that jumpstarting bone growth with Tymlos will be a good start.
I think that's a pretty comprehensive picture of what I am looking at.

Does this plan sound reasonable? Do my P1NP and CTX scores justify starting Tymlos? My endo didn't answer other than saying she sticks with her original recommendation of Tymlos.
Thanks for any comments or advice!

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

dooshie | @dooshie | Oct 15 2:01pm
In reply to @hopeandhope "Thanks, Rose, for sharing your experience! I am so happy Tymlos worked so well for you..." + (show)
@hopeandhope

Thanks, Rose, for sharing your experience! I am so happy Tymlos worked so well for you both regarding tolerating the drug and increasing your bone density! I've been debating morning or night for taking Tymlos and was leaning toward morning because I know I can be more consistent with the mornings than with evenings, but I am reconsidering that now. It will be trial and error for awhile, I think. Yes, one day at a time!

Jump to this post

@hopeandhope - try one, give it a week and see how you feel. If that time doesn't work for you, try another and see how that goes. For me, bedtime made the most sense. I typically hit the bed between 10-10:30 so it became pretty routine for me to just inject before bed. Mornings were more difficult because I play pickleball a few times a week, and lift weights the other few days and sometimes the increased heart rate that I got with Tymlos got my heart really pumping when I was exercising. So, bedtime and a time to just relax, really helped. You'll figure out what's best for you. Rose

REPLY
1 reply
drsuefowler | @drsuefowler | Oct 15 2:03pm
In reply to @hopeandhope "Good question, drsuefowler! I think possibly by my other labs (never a problem with blood calcium,..." + (show)
@hopeandhope

Good question, drsuefowler! I think possibly by my other labs (never a problem with blood calcium, D, PTH, etc.) and also by studies that showed that a low calcium diet is not good for people with idiopathic hypercalciuria.

Jump to this post

Thanks @hopeandhope. Another question. How did they figure you have idiopathic hypercalcemia when your calcium levels were normal?

REPLY
1 reply
windyshores | @windyshores | Oct 15 4:28pm

@hopeand hope I had fewer side effects doing it in the morning. I started in the evening and switched. Someone posted here that there was a slight benefit to doing Forteo, a similar drug, in the morning in terms of effectiveness but probably not enough to sway your decision on timing. We are all different!

REPLY
1 reply
hopeandhope | @hopeandhope | Oct 15 5:38pm
In reply to @windyshores "@hopeand hope I had fewer side effects doing it in the morning. I started in the..." + (show)
@windyshores

@hopeand hope I had fewer side effects doing it in the morning. I started in the evening and switched. Someone posted here that there was a slight benefit to doing Forteo, a similar drug, in the morning in terms of effectiveness but probably not enough to sway your decision on timing. We are all different!

Jump to this post

Thanks again for sharing your experience, windyshores! It really helps to hear what others have done as I will be finding out what works for me.

REPLY
hopeandhope | @hopeandhope | Oct 15 5:44pm
In reply to @dooshie "@hopeandhope - try one, give it a week and see how you feel. If that time..." + (show)
@dooshie

@hopeandhope - try one, give it a week and see how you feel. If that time doesn't work for you, try another and see how that goes. For me, bedtime made the most sense. I typically hit the bed between 10-10:30 so it became pretty routine for me to just inject before bed. Mornings were more difficult because I play pickleball a few times a week, and lift weights the other few days and sometimes the increased heart rate that I got with Tymlos got my heart really pumping when I was exercising. So, bedtime and a time to just relax, really helped. You'll figure out what's best for you. Rose

Jump to this post

That's a great suggestion, Rose! I do think you're right that giving it a week at one particular time of day will allow me to see if any potential side effects wane by then rather than switch right away to another time. As well, I can see pros and cons in my life for both morning and evening, so I'll have to see practically how it all shakes out.

REPLY
hopeandhope | @hopeandhope | Oct 16 12:26am
In reply to @drsuefowler "Thanks @hopeandhope. Another question. How did they figure you have idiopathic hypercalcemia when your calcium levels..." + (show)
@drsuefowler

Thanks @hopeandhope. Another question. How did they figure you have idiopathic hypercalcemia when your calcium levels were normal?

Jump to this post

Hi drsuefowler, when I got my first Dexa and it surprisingly showed osteoporosis, my doctor did a bunch of lab tests and one of them was the 24-hour urine test. The calcium level in my urine came back very high. Then they did more tests to check PTH and I can't remember what else, and, because all the tests were normal (blood calcium level always normal), determined that there was no known reason why this was happening.

REPLY
2 replies
drsuefowler | @drsuefowler | Oct 16 6:44am
In reply to @hopeandhope "Hi drsuefowler, when I got my first Dexa and it surprisingly showed osteoporosis, my doctor did..." + (show)
@hopeandhope

Hi drsuefowler, when I got my first Dexa and it surprisingly showed osteoporosis, my doctor did a bunch of lab tests and one of them was the 24-hour urine test. The calcium level in my urine came back very high. Then they did more tests to check PTH and I can't remember what else, and, because all the tests were normal (blood calcium level always normal), determined that there was no known reason why this was happening.

Jump to this post

Thanks @hopeandhope. It sounds like you have hypercalciuria due to high calcium in your urine. I hope that that and your osteoporosis improve.

REPLY
bluebonnet242 | @bluebonnet242 | Oct 16 9:11am
In reply to @hopeandhope "Hi drsuefowler, when I got my first Dexa and it surprisingly showed osteoporosis, my doctor did..." + (show)
@hopeandhope

Hi drsuefowler, when I got my first Dexa and it surprisingly showed osteoporosis, my doctor did a bunch of lab tests and one of them was the 24-hour urine test. The calcium level in my urine came back very high. Then they did more tests to check PTH and I can't remember what else, and, because all the tests were normal (blood calcium level always normal), determined that there was no known reason why this was happening.

Jump to this post

Sounds like you have a good doctor! How were you able to get your hypercalciuria under control? Through diet?

REPLY
1 reply
esb13 | @esb13 | Oct 16 10:00am
In reply to @windyshores "Tymlos took me from -3.7 to -2.5 in lumbar spine. I had trouble with the full..." + (show)
@windyshores

Tymlos took me from -3.7 to -2.5 in lumbar spine. I had trouble with the full dose at first so I did 1/4 dose (20mcg) and moved up slowly. The pen has adjustable dosing. You may not need to do this but if you are nervous, try starting at a half dose for a couple of days. Many of us have found that no matter how we start, the initial side effects ease up in a week or two.

I personally think it is great that you are starting at -3.2, before things get really bad. COVID delayed my starting and I had a few painful fractures that have left me with some disability. Good luck!

Jump to this post

Great about your spine improvement with Tymlos! What are you doing (did) to lock in these great results?

REPLY
2 replies
hopeandhope | @hopeandhope | Oct 16 10:11am
In reply to @bluebonnet242 "Sounds like you have a good doctor! How were you able to get your hypercalciuria under..." + (show)
@bluebonnet242

Sounds like you have a good doctor! How were you able to get your hypercalciuria under control? Through diet?

Jump to this post

Hi @bluebonnet242! Yes, it's controlled by hydrochlorothiazide. My diet didn't have anything to do with it - always consume plenty of calcium and low sodium. The human body is complicated and often a mystery - there's still so much we don't know. Could be genes or mutations - it's idiopathic so unknown cause.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.