Forteo vs. Tymlos: Which did you choose?

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

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hi all: i had contributed to this thread in the past, and i thought i would update you. i began tymlos almost a year ago after having done prolia injections for three years. in other words, i had 6 twice-yearly injections of prolia (with improvements in bone density), and at that point, my doctor advised a switch to another medication due to the brittle bone potential that prolia can pose with prolonged use. i had had no side effects with prolia, but with tymlos, i had pretty much all of them. i had the racing heart, headache, and nausea with each and every injection. last week, my dexa scan showed that the bone density in my spine had increased by 14.4% over the ten-month period -- i actually crossed back over the line into osteopenia again. it's a relief. i watched my grandmother spend the last years of her life permanently doubled over as her vertebrae collapsed. sending best wishes to everyone with their treatment.

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@laurapearl, Hi there and thanks for checking in with Connect again. Your post is very important both for those considering Prolia and others thinking about Tymlos. It looks like you made very good progress (14.4%) over a 10 month period on Tymlos and you paid a pretty tough price to get there. Did you or your clinician avoid bisphosphonates for a reason,..like not able to build bone?

Now, I also see in another post that to get that bone creating potential, patients appear to have modified the Tymlos dosage and adjusted the time. Did you try that? I want to check on the options for dosages, e.g 40mg in the a.m. and 40 more in the p.m. Would that have helped?

Do you have a link to the research about Prolia and brittle bone potential? That would be helpful.

You and I have the same role models.....my mother broke her hip at 81 and never walked or smiled again. I know this industry does not have a definable history with these new medications. That means our feedback is invaluable to others. Check-in with us as you enjoy the freedom of not having osteoporosis. Will you be taking medication for osteopenia? Every contribution is helpful for someone. Find some joy today. Chris

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1. i have GERD, and the esophogeal side effects of bisphosphonates were too much for me.
2. i did modify the tymlos dosage -- by cutting it in half. i took only 40 mg in the evening and STILL had a lot of discomfort from the side effects.
3. not sure if i will be taking meds for osteopenia -- i will see my doctor next week and talk it over with her!

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@salpert

Hi, I am researching Forteo vs Tymlos and saw your post. I, too, have -3.3 in my spine. My endocrinologist ordered Tymlos for me as it shows vertebrae improvement. But, it is a newer drug in this class.
Can you share your experiences being in Tymlos since you posted.
Thank you!!!

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Hi, I have been on Tymlos for a year. Just had my bone scan and my T-scores in my spine are now all in the normal range. Still need to improve the t-scores in the femur, but I trust they will improve. A few side effects in the beginning, but they dissiapated. I like the Tymlos is a daily shot because I can skip it if I'm feeling unwell. I do not know what I will do after Tymlos because I don't want to go on a biophosphonate. I am researching Chinese medicine/herbs at this point. Good luck to you.

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@laurapearl

1. i have GERD, and the esophogeal side effects of bisphosphonates were too much for me.
2. i did modify the tymlos dosage -- by cutting it in half. i took only 40 mg in the evening and STILL had a lot of discomfort from the side effects.
3. not sure if i will be taking meds for osteopenia -- i will see my doctor next week and talk it over with her!

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First Congrats on your nw score.
Good information about Tymlos 40mg.I can't take the oral drugs due to esophageal issues. I am considering Tymlos but only want to use 40 since I have to take lower does of drugs. Reason side effects. I have an over active thyroid and that has made my Osteoporosis worse. Just spoke with the Pharmacist at CVS. He said you can't get an accurate does if you cut it in half. That there are no markings.

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@artscaping

@laurapearl, Hi there and thanks for checking in with Connect again. Your post is very important both for those considering Prolia and others thinking about Tymlos. It looks like you made very good progress (14.4%) over a 10 month period on Tymlos and you paid a pretty tough price to get there. Did you or your clinician avoid bisphosphonates for a reason,..like not able to build bone?

Now, I also see in another post that to get that bone creating potential, patients appear to have modified the Tymlos dosage and adjusted the time. Did you try that? I want to check on the options for dosages, e.g 40mg in the a.m. and 40 more in the p.m. Would that have helped?

Do you have a link to the research about Prolia and brittle bone potential? That would be helpful.

You and I have the same role models.....my mother broke her hip at 81 and never walked or smiled again. I know this industry does not have a definable history with these new medications. That means our feedback is invaluable to others. Check-in with us as you enjoy the freedom of not having osteoporosis. Will you be taking medication for osteopenia? Every contribution is helpful for someone. Find some joy today. Chris

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Hi Chris. Again I must say you have given me hope and the courage to be almost ready to take Tymlos. Where can I find any info on taking the drug in 40mg 2X's a day?As the Pharmacist said Prolia is the most used drug. Said of course it is free with insurance. There is more information on this group than at my Drs. But that is another story. I investigate everything and especially with this. Why don't they just put women back on HRT? As soon as I went off (mistake) my bones started and now the Thyroid is just enjoying munching on them.lol Find joy in every moment.

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hi everyone: using 40 mg of tymlos is strictly off-label and i have never heard of anyone doing it -- i would not expect doctors to recommend it. i chose to do it because the side effects of the full dose were extreme for me -- not only did i have the racing heart, it was not a short-lived effect. my heart would still be racing hours later, and even on and off the following day. i saw online that some people were taking reduced dosages at the beginning as they got adjusted to the medication, and i decided to try that. unfortunately, my level of adjustment never changed, and that's why i continued at the lower dosage. it may be because i am a very small person (under 100 pounds). i don't advise others to do what i did, and especially not to start out at a low dosage -- you might get no effect at all and end up injecting yourself all year for nothing. if i could have tolerated it, i would have done the full dosage. on the other hand, i represent an N=1 experiment that suggests that body weight/size may have some bearing on the proper dosage, and smaller people may not need the full 80 mg.

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@cireland

Hi, I have been on Tymlos for a year. Just had my bone scan and my T-scores in my spine are now all in the normal range. Still need to improve the t-scores in the femur, but I trust they will improve. A few side effects in the beginning, but they dissiapated. I like the Tymlos is a daily shot because I can skip it if I'm feeling unwell. I do not know what I will do after Tymlos because I don't want to go on a biophosphonate. I am researching Chinese medicine/herbs at this point. Good luck to you.

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hi there -- congrats on your great results! are your results now completely normal -- meaning that you don't even have osteopenia? when you started tymlos, did you have osteopenia or osteoporosis? just wondering where your T scores were a year ago and where they are now. thanks 🙂

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I'm not sure where they were with my first scan two year ago, but prior to that I had had 5 compression fractures. I think they were in the -2 to -3 range.

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First, I would like to thank Justin for telling me about this group. Hi Suze317, With the guidance of my new primary care doctor, I chose Tymlos. It is less expensive and, as you know, there is the convenience of not refrigerating the drug. Although Forteo has been around longer, it was explained to me by the Wake Forest Baptist Fracture Division, that the chemical makeup of both drugs is quite similar. Also, Forteo is a 24 mo. drug vs. 18 mo. on Tymlos. Unfortunately, both drugs are toxic! However, both my primary doctor and Wake said one fall and I won't recover. They believe I don't have a choice. My chiropractor preferred I take bone supplements, magnetic treatment and bi-monthly iv drips. The latter was not covered by insurance. While a much healthier alternative, sadly, our government doesn't believe in covering anything that is not traditional meds. I hope this info helps!

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