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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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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!
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4 ReactionsTymlos is an excellent choice.
Be sure you are hydrated before your shot. Some eat something a little salty just before because the medication can drop your blood pressure.
Will you repeat the bone markers in two or three months. P1NP usually rises substantially in those months.
To me your bone markers look about right for someone who is losing bone slowly. Best wishes.
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1 ReactionMake sure you are getting enough calcium, vitamin D3, and vitamin K2. The vitamins will help with bone density. K2 has heart benefits as well.
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1 ReactionBe careful with calcium, since you've had too much in the past. Tymlos appears to increase calcium. I have had too much calcium in my urine from Tymlos. I have had to cut way back on my calcium supplements and wonder if I should just be getting my calcium from food. I add up how much I get from food, then decide how much supplement to take. Some of the side effects, such as fatigue, weakness and confusion, may come from too much calcium. I also have urinary frequency and urgency.
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2 ReactionsThank you, windyshores! I appreciate the tips about dosing and helping me see I am making a good decision to start Tymlos!
Thank you, gently! I will definitely hydrate before the shot and eat something a bit salty - thanks for the tips! I do plan to repeat the bone markers in 3-6 months, but it sounds like doing it closer to 3 months is preferable? Also, since my bone markers reflect that I am losing bone slowly, it sounds like that is a good time to start Tymlos?
Thanks, njx58! I am taking the vitamins but I will review how much I am taking to make sure I have a well-rounded approach to addressing my bones!
The timing is good ; I agree with windyshores. Compliments to your endocrinologist for sticking to her original recommendation and for ordering bone markers.
Hi ladies! I have just spent the last hour and a half reading everyone’s posts and am so glad to find this site. I just received my first Tymlos pen and plan to start it today and I am very nervous as well. I’m convinced that to start with a low dose and see how I tolerate it is the way to go for me as well.
In reading everyone’s histories I’m curious that no one has mentioned Prolia injections in their past? It worked great for me, then ironically, I decided to go back to oral ibandromate and less than a year have had three compression fractures. I wish I had never stopped it. I had no side effects with that, and no am facing 2 years of Tymlos…then probably back to Prolia.
Hopeandhope, has your doctor talked about that since you’ve had no fracture as yet?
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1 ReactionThank you, drsuefowler! I will monitor my calcium intake and see what changes by adding Tymlos to my routine and adjust as needed. My idiopathic hypercalciuria is not caused by too much calcium - it's an absorption issue thus high calcium consumption is preferred with idiopathic hypercalciuria.