How long did your doc have you on Tymlos?

Thanks for the reply, I just started Tymlos exactly one week ago so have awhile to think about but I had heard two years max which is still on their website so this was interesting to know if correct. I used prolia ever since it was first released and last year developed jawbone necrosis so that’s no longer an option. Bisphosphonates have the same side effect plus I’m truly allergic to (had reaction the first time took boniva).. Started taking Evista after this happened since not many other options but it’s an older med and not too effective which is why new meds were developed. My sister mentioned Tylmos and the other related meds and had already taken Tylmos for 18 mos (she stopped intentionally so had another 6 mos to fall back on if needed; Currently doing reclast as recommended). I was still osteopenia when started Tylmos but very close to osteoporosis and my doctor could call it osteoporosis based on another score that’s done with calculations (forgot name but can find) - Therefore submitted to my insurance and it was approved. My DEXA had also decreased by ~ 10% after stopping prolia so I was very concerned but she said that’s the norm with these meds which seems odd to keep going up & down. I planned to broach stopping after a year so could then take for another year once my score decreased again so will see what she thinks but still have a way to go since just started. I was also lucky that my insurance participated in the savings card plan so my current cost is $0 as long as keep that insurance via my husband’s employer. We are, however, past FRA and not sure how much longer my husband will work full time (he’s in early 70s but enjoys his job and is in excellent health/shape so no plans at the moment). Once he retires we’ll use Medicare which isn’t eligible for the savings card discount so wondering what people on Medicare do as it’s quite costly w/o any discount? Seems strange since the majority likely get osteoporosis in their 60s and would also likely be on Medicare (or military ins). My sister is very concerned about this since she’ll be starting Medicare in 6 mos and doesn’t have or make much money to be able to afford ~ $2,500/month. We could technically afford but it’s still pretty ridiculous and hopefully the cost will decrease more. Thanks again and hope to continue our conversation! Sandy

@omgirl, My endocrinologist just suggested Evista to take along with my Tymlos. My CTX is too high at 1400. He thinks Tymlos is working because my P1NP is 310. Did you have any side effects with Evista?

I was on Tymlos for the full 2-years. I had significant improvement the first 18 months and minimal after that. I would love to be back on it but that doesn’t seem to be an option. I am on bioidentical hormones and will begin Evenity in October. Not happy about that but also don’t want to lose my gains.

How did you know you had improvement the first 18 months and minima after that? Did you have a Dexa after 18 months and another 6 months later? Or were you using BTMs?

@omgirl, My endocrinologist just suggested Evista to take along with my Tymlos. My CTX is too high at 1400. He thinks Tymlos is working because my P1NP is 310. Did you have any side effects with Evista?

How high was your P1NP before you started Tymlos? 310 seems a bit high, but if it’s coming down from a higher number, that’s good. Hopefully, you can get that CTX number lower as well.

@dooshie I think we want a high P1NP. Tymlos raises both P1NP and CTX. At least for a year or year and a half in my experience.

Ok so I was researching normal scores for P1NP and CTX and it shows for postmenopausal women the numbers should be between 19-96 but than another site says between 43-52. This is all so confusing…it seems the more research I do, the more confused I get. 🥴🤪