Worried about starting Tymlos Wednesday and question about P1NP score

Tymlos seems to be the one bone building med that most tolerate really well. I finished my 2-year protocol of Tymlos in June of this year and other than a few minor side effects, it really was easy peasy. Injections were simple and because I injected at bedtime, the early side effects I had when injecting in the morning were unnoticeable. I started at full dose from the beginning and never lessened the dose. I had an almost 15% increase in my spine and 3.5% in my hips. I’ve never fractured thank God even though my numbers were pretty bad (i.e. -4.7 in my spine). I wish I could have continued it for another 6 months but doc said no. Now I’m on bioidentical hormones but my rheumatologist wants me on Evenity but I’m holding off for a bit but don’t want to lose my gains from Tymlos. Always decisions to make with Osteo. Don’t be nervous about Tymlos…you can start at half dose for a few days to see how u tolerate it and then move up as @windyshores suggested. One day at a time, one step at a time. Rose 🌹

@jennirdh did your doctor warn you about the strong Prolia rebound, which results in a decrease in bone density and more importantly, increase in fracture risk? Ibandronate (Boniva) is not recommended by sources like Keith MCCormick's "Great Bones" as the best approach to counter that rebound. If you were on Prolia for awhile, Reclast is recommended and if you were on for just 1-3 shots, alendronate (Foasamax) might work. My doctors won't even use Prolia because of this rebound risk. Tymlos will be a good drug after fractures in my experience.

Not trying to cause regret here. Just posting because you mention getting back to Prolia and in consultation with your doctor, maybe you can come up with an alternative to protect your gains.

@hopeandhope if you don't have low blood pressure, you may not need to worry about hydration and salty snacks. I bought a blood pressure cuff because I have low blood pressure and at times, Tymlos lowered systolic by about 20 points. It does not harm to hydrate and snack of course. But after awhile I stopped worrying about it and put the blood pressure cuff in the closet 🙂

Thank you for that info! My endocrinologist’s office had several changes to their nurse practitioner position since I have been a patient there and the rebound effect was not stressed to me, or by my PCP! Time to change for sure. Meanwhile it sounds like Tymlos may be the most effective way to regain some bone (hopefully) fast. I’m only 67 and am so restricted right now in what I can do, even after 2 kyphoplasty procedures. Ugh I watched my mom go through osteoporosis and it sucks!!!

I agree, jennirdh, that this site is great! I also just found it - two days before starting Tymlos :). I'm sorry you had some compression fractures - to get on my soapbox, osteoporosis is generally considered an older woman's disease and thus has not been studied as much as it should have been. I mean, the first osteoporosis drug was developed in 1995! So it frustrates me that the information to treat and manage osteoporosis is spotty and often unclear. My endocrinologist says everyone is different, but that does not negate the fact that treating this disease is not straight-forward. I do think the medical profession is getting better at addressing osteoporosis but it is not nearly where it should be. Even trying to find out what type of medical professional to see can be confusing. So, we end up doing a lot of research ourselves to figure things out and to rely on others' experiences and knowledge through a forum like this. I had to ask to get the bone marker tests after reading a lot about osteoporosis, but my endocrinologist did give me a lab order to do so. All this to say, I sympathize with you - how frustrating to have those fractures after doing so much to treat your osteoporosis.
My doctor was alarmed that my Dexa spine score decreased by such a large percentage so she thought the bone-building drug would be best first in order to try to prevent fractures as she feels I am high risk for fractures. I know I have to go on something else to lock in the gains from Tymlos, but we haven't gotten to that point yet so I don't now what she will suggest or give options for. I really don't want to be on drugs forever and. hope after this I can at least take a break, but we will see.
Good luck starting Tymlos! I hope you experience minimal or no side effects!! Cross fingers 🙂

Very interesting @hopeandhope. How did your doctors figure that out? How can they tell it's not being absorbed?

@jennirdh if I were 80-85 I would definitely consider Prolia and never get off. My endo MD jokes that he will start prescribing Prolia only when he retires so he doesn't have to deal with rebound!

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!

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.

All this information is so great to know as I start to go through this! Thanks, windyshores!