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.

hopeandhope | @hopeandhope | Oct 18 12:02am

In reply to @gently "@hopeandhope how was your Tymlos experience yesterday." + (show)

Hi @gently! I had a Zoom meeting with a clinical educator from the manufacturer of Tymlos, and she walked me through the whole process. It was great. The needle is so tiny it barely hurt. I took the full dose. So far, no side effects other than redness at the injection site. The journey has begun....

windyshores | @windyshores | Oct 18 5:31am

@hopeandhope Yay!

marymj7 | @marymj7 | Oct 18 8:18am

In reply to @hopeandhope "Hi @marymj7! I don't know when my doctor will order it but I will post when..." + (show)

@hopeandhope-Thanks. I hope the Tymlos works out for you and look forward to hearing how it goes. I am on 12.5 mg hctz once a day. Is that your dosage as well? I don’t really notice any extra bathroom trips from it-but I just started on it this week

njx58 | @njx58 | Oct 18 8:21am

By the way, a great source for needles is ADW Diabetes. Good price and fast delivery. I use the BD Ultra-Fine 5/16. They also have 3/16, but I found that the longer needle worked better for me; the shorter needle wasn't getting in deep enough and I was getting black-and-blue marks.

gently | @gently | Oct 18 10:32am

In reply to @marymj7 "I meant to tag @hopeandhope in my comment" + (show)

marymj7, tagging someone wouldn't have saved you from (at least my) comment.
It so good that your provider is tracking your response.
Most of us have increase in urine calcium even with the increased use of vitamin D alone; increased urine increase with increased calcium use alone; And we have increase in urine calcium use with Tymlos and Forteo alone, which is almost never done without increased use of vitamin D and Calcium.
Your doctors know your medical history and are giving you good care, as I'm sure you know.
Your post followed by drsuefowler's is such a combination--a perfect example of what is so valuable about Mayo Connect.
wishing for resolution and return to Tymlos.

hopeandhope | @hopeandhope | Oct 18 11:15am

In reply to @marymj7 "@hopeandhope-Thanks. I hope the Tymlos works out for you and look forward to hearing how it..." + (show)

Hi @marymj7 I am actually taking 37.5 mg hctz once a day. I originally started with 25 mg but needed a bit more to keep my urine calcium down to a good, normal level. With both 25 mg and 37.5 mg I. have had low potassium but taking a potassium supplement daily has kept it normal. Make sure you get your bloodwork done to make sure it hasn't affected potassium (I don't know what else it could impact but that was the only one that was affected for me). No extra bathroom trips - has not disrupted my lifestyle at all. I hope the 12.5 mg hctz works well for you!

marymj7 | @marymj7 | Oct 18 11:36am

In reply to @hopeandhope "Hi @marymj7 I am actually taking 37.5 mg hctz once a day. I originally started with..." + (show)

@hopeandhope-I do wonder if my dose is too small to matter. My blood pressure is normal to low normal so I am afraid of it being too low on a higher dose. Have you had blood pressure changes? My baseline urine calcium varies depending on how much calcium I eat-but between 250-330ish. How about you? Tymlos shot mine up to 518

hopeandhope | @hopeandhope | Oct 18 12:16pm

In reply to @marymj7 "@hopeandhope-I do wonder if my dose is too small to matter. My blood pressure is normal..." + (show)

Hi @marymj7! My experience has been good so far - no blood pressure changes with hydrochlorothiazide. I've never had any blood pressure issues.

marymj7 | @marymj7 | Oct 18 1:41pm

In reply to @hopeandhope "Hi @marymj7! My experience has been good so far - no blood pressure changes with hydrochlorothiazide...." + (show)

@hopeandhope I won’t have another urine calcium test til March or April-I’m encouraged to hear that the higher hctz dose hasn’t altered your blood pressure!

bluebonnet242 | @bluebonnet242 | Oct 19 10:12am

In reply to @windyshores "Tymlos took me from -3.7 to -2.5 in lumbar spine. I had trouble with the full..." + (show)

I remember you mentioning improvement in your hips as well. Would you mind sharing your hip dexa scores? My hips are worse than my spine. I previously sent this reply to @esb13 by mistake:)