Forteo vs. Tymlos

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!

@artscaping I think she would like me to continue rotating treatments so that I don't put myself into a bone-losing condition ever again, which of course I agree with in general. I am 59 now, so presumably (hopefully, anyway) I have too many years left just to go on Prolia again (or Reclast) for the duration. In other words, closer to the end, we wouldn't worry as much about how much old bone I was accumulating — it would be more important just to keep the bones from dissolving away. In fact, I had thought of saving my one remaining year of Tymlos for later because there might be a couple of decades left, i.e., I could do another course of Prolia at some point, and then do my final year of Tymlos, and I proposed this to my doctor. She had thought of that strategy as well, but her issue was this: although my overall hip and spine density has increased significantly, I have this one vertebra that is lagging behind the rest (L3; it was the worst from the beginning). Her position was, this is working for you so let's keep going for now and see if we can get that one last vertebra to catch up. Afterward, it's not like I would literally be doing nothing. I am on HRT, and estrogen, while it does not build bone at all, slows bone loss slightly. She also suggested Evista as something to try for the same reason during a potential holiday away from osteoporosis drugs. In addition to all that, I have always been diligent and careful about diet, exercise, and supplements so that represents a contribution too — it's just (unfortunately) not the kind of contribution that can reverse bone loss on its own. So onward with the Tymlos 🙂

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@contentandwell

@cpierre Yes, your first reply is right there. So, you are not yet on anything, correct, but you will be having Forteo injections? I'm not sure what I may have missed, but I presume that the Intralaminar epidural injections are for something other than osteoporosis.
There seem to be varying opinions about vitamin D. Many people feel that D3 is the better one to take but I have been told by two endocrinologists and my PCP that the difference between D2 and D3 is negligible. One thing to be careful of is not overdoing calcium, that can backfire, about 1200 to1500 mg a day is the recommended amount from a combination of diet and supplements.

@kdbones Thanks for the info. I think I will call the other endo tomorrow and make an appointment. So, you are not being treated at Brigham, right? My MGH endo is pushing me to start Reclast but I have put her off so far. I like her a lot so I think I can have an honest discussion with her. That's interesting that Tymlos has a higher dropout rate. I wonder why. This is all so confusing, but we do need to be advocates for ourselves, not just blindly go along with what a doctor says.
JK

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Well finally got a response from the Endo through his staff. Forteo appears to be a better choice because I will be on it only for a year… Reclast will be prescribed after that, for the hip. Definitely shell shocked over cost of Forteo prescription for 28 days of theerapy… working on the next hurdle. Thanks for everyone's input and I'll continue to monitor patients' experiences. Wish me luck…

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@cpierre

Well finally got a response from the Endo through his staff. Forteo appears to be a better choice because I will be on it only for a year… Reclast will be prescribed after that, for the hip. Definitely shell shocked over cost of Forteo prescription for 28 days of theerapy… working on the next hurdle. Thanks for everyone's input and I'll continue to monitor patients' experiences. Wish me luck…

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@cpierre, Thank you for posting about your Forteo decision. Congratulations, that was a big step. We do wish you the best of experiences and a successful outcome. And of course, we will be waiting for your posts.
Be safe and protected.
Chris

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@artscaping

@cpierre, Thank you for posting about your Forteo decision. Congratulations, that was a big step. We do wish you the best of experiences and a successful outcome. And of course, we will be waiting for your posts.
Be safe and protected.
Chris

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Good evening. @leacy, @cpierre, @kdbones, @betterbones, suze317, @laurapearl, @diva The discussion topics include medical information from Mayo Clinic and reputable sources. They also cover how to deal with our fears, loneliness, and boredom. Check out some of the virtual tour ideas and ways to stay in touch with your grandchildren.
https://connect.mayoclinic.org/group/covid-19/
Be safe and protected from inner and outer harm.
Chris

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Good evening. If you are having difficulty getting your Tymlos pens, needles, and alcohol prep because of the COVID-19, this is good news. My pharmacist started the search after being told it was on back order. Then my endocrinologist got in to the hunt and found some at another town. She also increased the RX to 3 pens because of the difficulties with deliveries at this time.

I also spoke with one of the nurses at the manufacturer. She was very helpful. In fact, everyone was so kind and concerned. I even got call backs. They don’t want any patient to be without their medication. So hats off to the team. The 3 month refill will arrive Friday and take me out 90 days.

Do let me know if you need the links and phone numbers. Both Forteo and Tymlos are “specialty” medications requiring a different level of order processing.
May you be content and at ease. We are here for you.
Chris

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@artscaping

Good evening. If you are having difficulty getting your Tymlos pens, needles, and alcohol prep because of the COVID-19, this is good news. My pharmacist started the search after being told it was on back order. Then my endocrinologist got in to the hunt and found some at another town. She also increased the RX to 3 pens because of the difficulties with deliveries at this time.

I also spoke with one of the nurses at the manufacturer. She was very helpful. In fact, everyone was so kind and concerned. I even got call backs. They don’t want any patient to be without their medication. So hats off to the team. The 3 month refill will arrive Friday and take me out 90 days.

Do let me know if you need the links and phone numbers. Both Forteo and Tymlos are “specialty” medications requiring a different level of order processing.
May you be content and at ease. We are here for you.
Chris

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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.

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This is from @lilypaws I am on Tymlos and it is expensive, but I thing Forteo is more expensive. I have been on it for 5 week, does give some side effects. The doctor told me to take it at night and that has helped. I have some bone pain, but I feel it must been working. I would try Tymlos first and then if it doesn't work or too many side effects you can change to Forteo. After 6 weeks of being on Tymlos I am to have surgery, but it is still only elective yet. I am having a fusion from T-10 to my pelvis. Its a big surgery, but I have done everything I can do. They tested me and the surgery will help. I have degeneration which has caused and scoliosis and my T4, T5 and S1 has stenosis. I live with pain everyday sometimes worse that others. I hope the governer willl open up so I can have my surgery. At least then I could be on pain pills. No pain pills before surgery, because then what the surgeon gives me won't work as well. Let me know what you choose. And bless your heart. Do you just have ostiporosis?

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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

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@diva

This is so interesting reading you will nee to be on something after Tymlos. My Dr. never said anything. I have started to read that Chinese medicine is a possibility. The thought for me to continue forever doesn't sit well. Since I don't get along well with most meds. Have just started Tymlos.Thank goodness for this group.

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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

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@lilypaws Maybe I should be on Forteo instead of Tymlos, but I did read up on Tymlos and it is suppose to be better since it's newer. Let me know what you choose and how it's working.

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@salpert

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.

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@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.

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@laurapearl

@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.

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@laurapearl, that is really interesting. And such a tremendous increase. I think they likely do trials against a range of sizes and look at average. It's such a new drug that my guess is it will take a while to perform dosing studies. I am not as small as you but below 110 lb, and although I tolerate the dosage fine, but why take more if I don't have to. Also, I wonder if this could effect how long during a life time it could be used. Of course that question can't be answered now, but wonder if you take 1/2 does would 4 years be allowable – that would be especially significant for those of us that use up our time allotment so early in life and cannot tolerate oral bisphosphonates to help in between. I hope your doctor shares with makers of Tymlos. I'm going to share with my endocrinologist to see if any studies are in action. Thanks for sharing.

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@artscaping

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

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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.

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@artscaping

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

Jump to this post

I choose Tyjlos because it wasn't as expensive and yes it will strengthen my spine. I had to use it for 6 weeks before to surgery and have 1 week left. Yes, I did have side effect, but my endocrinologist said to do it at night. I get my Tymlos at the Mayo Special Pharmacy. They mail it to me and call me when its time for a refill.
Yes the tymlos will be helpful with my surgery and yes I will have to wear a brace. I laughed when you throw it across the room. I'm sure it could get uncomfortable and I I don't know how long I will have to wear it. So you did have a fusion? Where at? I expect the back. Thank you for responding. I'm confident the surgery will work and of course put me on Chris's list..

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@lilypaws

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.

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this is in reply to lilypaws,kdbones and Chris Trout. First good luck on your upcoming surgery.I am a small person under 90lbs so taking a normal dose of meds for me is almost impossible. Most doctors don't believe it when I get horrible side effects from most drugs.I had been told that small statue metabolizes differently.I did start Tymlos taking half of the normal dosage. I had severe nausea and heart palpitations but also pains in my upper stomach and chest.
I have a hyperactive thyroid that decreased my bone density 10% in a year and is not cured after almost 9 months.I came to a decision and told my Dr. I want to remove the thyroid and then try Tymlos again. Because in my mind how can it rebuild when the thyroid is destroying it.Her reasoning is to maintain where I am at. In the meantime I am doing gentle chair yoga to rebuild bones, and increasing my walking k2 d3, calcium and prunes.

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