How long did your doc have you on Tymlos?

I am wondering this as well since one doc is recommending 18 months and another is recommending 2 years.

Of course the two year limit has come off and we also have Evenity for future use.

So there is no longer a two year limit in entirety?

I have been told that the two year limit has been lifted. Online I can only find the announcement for Forteo, which happened first. The Tymlos insert no longer has the black box warning and time limit. Double check with your doc.

The problem is that these meds stop working sometime between 1 and 2 years, for many. We need to have blood tests (P1NP, also CTX) to see if they are still effective.

I extended my Tymlos past 18 months even though it may not be doing much, because I need time to make decisions in the context of another new diagnosis. Otherwise I would have stopped at 18 months.

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

My doc- and McCormick's book- say Tymlos after Prolia is not a good idea. That it either doesn't work or even makes bones more porous. Check this with your own doctor. You can have blood tests to see if it is working.

My bone specialist felt it was the best option since I can no longer do any of the other specialized bone health meds and I had lost everything gained by Prolia. Was also off Prolia for 18 months before started Prolia if makes a difference per your resources? What specific tests are you referring to other than dexa as I’ll mention when we meet after I’ve been taking for a few months
?

@omgirl the P1NP and CTX. Blood tests done early, fasting.

From McCormick's book: "If you've been treated with denosumab (Prolia), sequencing to teriparatide (Forteo) or abaloparatide (Tymlos) or even romosozumab (Evenity) will increase cortical bone porosity, accelerate bone loss, and heighten risk of fracture. If your doctor suggests this type of sequential therapy, please get a second opinion." My endo says the same thing.

Not sure how this applies to someone who was off Prolia and then on again for a short time, if that is your situation. It seems we all have to take a bisphosphonate, preferably Reclast, at some point to lock in gains, or we lose what we gained.

Regarding Tymlos after Prolia, my doctor said I didn’t have any other treatment choices because I had 3 osteoporosis fractures while on Prolia. Had also used Reclast for 5 years about 10 years ago. I have yet to read Dr McCormack book.

@windyshores, have you found any other research citing the ineffectiveness of Tymlos after Prolia?

My 2nd opinion endocrinologist said the same thing as Dr. McCormick. You could do just one Reclast infusion and monitor with blood tests. If you need another, so be it. I have been told I will need one or two to "lock in" gains and then can take a med break. Reclast stays in the system a lot longer than Prolia. Of course you need to talk to a doc. Maybe ask your doc to research the effects of Tymlos after Prolia. Do you see an endocrinologist?

have you ever tried in troditional Chinese medicine clinic to see if you have any problem with your kidney?