Forteo vs. Tymlos: Which did you choose?

I was taken off of Tymlos because of lingering heart palpitations. I have extra unopened unused needles if anyone needs them. Please let me know and I can send out.
Stay well during this very challenging time.

@artscaping i just thought i would reply to this, since it has similarities to my situation -- but my solution is off-label and therefore i am recommending it. @salpert i wonder if, by any chance, you are a small(ish) person? i also had lingering palpitations (plus a high degree of nausea) when i first began doing tymlos -- so much so that after about 2 months my rheumatologist sent me to a cardiologist and i wore a heart monitor for a month. the conclusion of that assessment was that my heart rate was indeed being heightened after the injection more and for a longer time than expected (i.e., some period of increase is a typical side effect of tymlos) but that it was not dangerous if i was not too uncomfortable. wellllll i was tremendously uncomfortable and didn't feel that i could commit to an extended period of good medication compliance under those circumstances. as i am a small adult (small stature and below 100 lbs), i wondered if the standard adult dosage could possibly just be too high for me. i then took it upon myself 🙂 to lower my dosage to half the usual. you can do that by turning the pen only 4 clicks instead of 8. thereafter, my heart rate was heightened for only a hour or so after administration as it is for most people AND at the end of the year, my bone density showed an increase of 14.5%. the makers of tymlos should investigate such dosage issues and perhaps refine their recommendations based on body size and weight.

Good afternoon @diva, it has been a while since we checked in with each other. I finally have a "med buddy" for I too am not med friendly or at least my body isn't. I am very sensitive to bisphosphonates. My endocrinologist said no way......for any of them and so I am on Tymlos. The proof will be in the pudding so to speak.....when I get the results from my first year DEXA scan.

Would you please pass along your findings on Chinese medicine so all of us will be informed.

Did you plan to contact your Dr. about what she/he wants you will need to be on after. Tymlos? I think that information will be helpful to others. Please share.

May you be content and at ease these days.
Chris

Good afternoon @lilypaws. Thank you for updating us on your choice for help with osteoporosis. Would you please tell us why you chose Tymlos? Did you have any side effects? Regarding the cost, you are correct, Forteo is more "spendy". Because of COVID-19, my endocrinologist increased the dosage to 3 months so I would not have trouble getting it. Then my pharmacist helped me find a specialty pharmacy that was not as expensive. Have you had help with some price checking?

And now for your second statement about the complex surgery you are scheduling, you sound ready and understand the recovery that will be required. Will your time with Tymlos be helpful for the fusions? My surgeon was quite adamant about staying in a brace for 3 months to ensure that the fusion had every chance to be more secure. That was a very long time for me. However, I did it....even slept in it except for one night when I just lost it and threw the darn thing across the bedroom.

I hope you are pleased with the results. It was great to be able to sleep and walk and sit without constant pain. I would like to put you on "Chris's list" so that I can check in with you as things progress. Would that be appropriate? It is also so important that other members know your story. That is how we all learn, by sharing.

May you be free of suffering and the causes of suffering.
Chris

Hi diva. I'm on Tymlos too, but it's because I have to have low back surgery. I've all ready explained the surgery in another post. I have to be on it for 2 years. I have to be on it 6 weeks before surgery and only have one week left. So the dang governor better open up to have elective surgery. I'm in pain. My surgeons assistant was going to meet with my surgeon to plan out my surgery, so I should be able to get in as soon as the elective surgeries are open. Take care and do you have any side effects from Tymlos? I do it at night now and that helps the side effects.

@artscaping i just thought i would reply to this, since it has similarities to my situation -- but my solution is off-label and therefore i am recommending it. @salpert i wonder if, by any chance, you are a small(ish) person? i also had lingering palpitations (plus a high degree of nausea) when i first began doing tymlos -- so much so that after about 2 months my rheumatologist sent me to a cardiologist and i wore a heart monitor for a month. the conclusion of that assessment was that my heart rate was indeed being heightened after the injection more and for a longer time than expected (i.e., some period of increase is a typical side effect of tymlos) but that it was not dangerous if i was not too uncomfortable. wellllll i was tremendously uncomfortable and didn't feel that i could commit to an extended period of good medication compliance under those circumstances. as i am a small adult (small stature and below 100 lbs), i wondered if the standard adult dosage could possibly just be too high for me. i then took it upon myself 🙂 to lower my dosage to half the usual. you can do that by turning the pen only 4 clicks instead of 8. thereafter, my heart rate was heightened for only a hour or so after administration as it is for most people AND at the end of the year, my bone density showed an increase of 14.5%. the makers of tymlos should investigate such dosage issues and perhaps refine their recommendations based on body size and weight.

Hi @laurapearl this is lilypaws. I am on Tymlos and my endocrinologist at Mayo did not take me off of it during the coronavirus. I think your idea is the best and see a endocrinologist at Mayo. I had to wait awhile to get in. Good Luck.

I'm new to this so I guess it was @ salpert that said her endocrinologist took her off of Tymlos. My suggestion is above.

@artscaping i just thought i would reply to this, since it has similarities to my situation -- but my solution is off-label and therefore i am recommending it. @salpert i wonder if, by any chance, you are a small(ish) person? i also had lingering palpitations (plus a high degree of nausea) when i first began doing tymlos -- so much so that after about 2 months my rheumatologist sent me to a cardiologist and i wore a heart monitor for a month. the conclusion of that assessment was that my heart rate was indeed being heightened after the injection more and for a longer time than expected (i.e., some period of increase is a typical side effect of tymlos) but that it was not dangerous if i was not too uncomfortable. wellllll i was tremendously uncomfortable and didn't feel that i could commit to an extended period of good medication compliance under those circumstances. as i am a small adult (small stature and below 100 lbs), i wondered if the standard adult dosage could possibly just be too high for me. i then took it upon myself 🙂 to lower my dosage to half the usual. you can do that by turning the pen only 4 clicks instead of 8. thereafter, my heart rate was heightened for only a hour or so after administration as it is for most people AND at the end of the year, my bone density showed an increase of 14.5%. the makers of tymlos should investigate such dosage issues and perhaps refine their recommendations based on body size and weight.