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Worried about starting Tymlos Wednesday and question about P1NP score
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!
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I had a 9.4% improvement in my hips ( down from -3.3 to -2.9). My femur neck is still a big problem, but went from -4.1 to -3.6. Spine went from -3.7 to -2.5, a 19.1 %improvement.
Thank you. Your improvements are amazing! I hope I have the same success with my hips as you did as mine are worse than yours.
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1 ReactionSome physicians are advocating osteostrong.
I had one session. The tech were not knowlegeable about osteoporosis, but were intensely encouraging. It was great fun. The problem being that even if our muscles are strong enough for that extra push our bones may not be. There was a photo wall of clients. Some were no longer participating because of fractures. One in particular fractured while on a machine. There may have been no connection between osteostrong and the fracturing.
Even with physical therapy its best to be careful that the therapist understands osteoporosis and the dangers that even good exercise can pose with bones that are less durable.
Best wishes with osteostrong The compression garments are great.
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2 ReactionsThanks! I am keeping it refrigerated anyway, no reason not to, going well so far. I’ll make sure I have plenty of needles.
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1 ReactionHi
I am new to all of this! I am not sure how to read all of the dexa scan numbers, but what I do know is that my left arm has osteoporosis, and my spine has osteopenia. I was on fosamax for 13 weeks, and then 1/2 of a tooth fell out due to a crack that my dentist could not see. Now, I am pending oral surgery, which is a no no, however I have stopped taking fosamax. I am going to see a specialist about my tooth.
With all of that being said, after mouth surgery, my endo wants to put me on Forteo, or Tymlos!
If you have osteopenia is this a good drug to take?? I am afraid of all of this! I am exercising, I bought a weighted vest, 4#, and I am exercising the arms. Will someone reassure me if they can. Jamie
Hi
Did you start Tymlos, and how is it going??
Jamie
@jamiebones,
Jamie, gently is on Forteo close to 20 months. I think you wanting to know jennirdh's progress.
I can tell you that Forteo has been excellent for me with no side effects. My one year gains were moderate spine from 3.3 to 2.8 femur 2.9 form 3.0 and basically no change in the hip.
They measured your left arm and not your hip? You can upload your scan if you like comment.
But be careful that you don't cover your personal information before uploading.
While you are unlikely to have trouble from that short course of Fosamax, you'll surely have much better gains with Tymlos than with Fosamax. That little tooth did you a great favor.
Tennis players have greater bone density in their racket arm.
@jennirdh
@jamie and @gently are wondering
Did you start Tymlos, and how is it going??
Jamie
Yes, I am on 5 clicks now, in the morning, and ready to up it to 6 next week. I started Tymlos on 10/11 so I’ve been able to go up pretty fast. No symptoms doing the injections in the morning, or none that I’m noticing. Just a little tired but that could just be life, you know? Thank you for checking in with me!
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3 Reactions@jamiebones I am surprised that your docs are suggesting Tymlos or Forteo with spinal osteopenia. Maybe it has to do with helping your oral issues heal. Ask your doctor! You may be able to get insurance coverage despite your relatively mild bone situation because the fractured tooth means no Fosamax.
Interesting that your arm was scanned. I have never had an arm done in a DEXA scan. I believe arm is cortical and spine is trabecular and the meds may have different effects on the two types of bone. Again, discuss with your doctor. https://thisvsthat.io/cortical-bone-vs-trabecular-bone#:~:text=Cortical%20bone%2C%20forming%20the%20outer%20layer%20of%20bones%2C,structure%2C%20allowing%20for%20shock%20absorption%20and%20metabolic%20activities.
I did Tymlos after fracturing and it really helped me heal and I had almost 20% gain in spine. I miss it! I felt safe on it.