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!

@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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Good morning….and YES to your question. I am a very small boned person. 95lbs. I, too, thought the dosage on Tymlos may be too high for my small frame. “One size does NOT fit all”. My endocrinologist recommended to take myself off during the coronavirus. I am waiting to see a new endocrinologist at Mayo and trying to do the visit via Telemed. I will let you know what the new doctors recommendations are for my small frame.
Best of luck. Stay well, safe and strong!

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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.

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@lilypaws

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.

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

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@lilypaws

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

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I apologize for the lack of information I gave out on my last response. As in previous texts, I had mentioned I had troubling heart palpitations that did not go away. I was concerned that Tymlos was adversely effecting my heart, thus my endocrinologist recommended going off at the height of the outbreak until I could be seen.
I am now hoping to do a Telemedicine visit with an endocrinologist at Mayo later this month.
Will keep you posted as far as weight/dosage thoughts.

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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, Hey there…..thanks for your post. I do remember that there was discussion about cutting the dosage in half. Although I figured that you could do it….I did not know if your endocrinologist would approve. I was able to talk to the manufacturer when I needed my Rx refilled. Let me see if I can float the dosage issue again this week.

Be safe and protected.
Chris

Liked by Laurapearl

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@lilypaws

@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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Hi @lilypaws, Yes Tymlos is newer. There are similar ingredients but they work in different ways. Tymlos, like Forteo before it, works by imitating a natural bone-building process in the body to increase the patient’s bone density.

Tymlos is lab-made copy of part of the human parathyroid hormone-related protein (or PTHrP), while Forteo is a partial copy of the parathyroid hormone. In our bodies, the PTHrP and the parathyroid hormone do many things, notably stimulating bone cells called osteoblasts to produce new bone tissue.

Be calm and at ease these days.
Chris

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@artscaping

@laurapearl, Hey there…..thanks for your post. I do remember that there was discussion about cutting the dosage in half. Although I figured that you could do it….I did not know if your endocrinologist would approve. I was able to talk to the manufacturer when I needed my Rx refilled. Let me see if I can float the dosage issue again this week.

Be safe and protected.
Chris

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thanks, that would be great. very interested to hear the response. and you're right — like you, i suspected that my doctor would have disapproved if i asked her first. how could she approve, after all? almost no doctor is going to say yes if you ask them point-blank if you can alter the dosage of your drug in a non-evidenced based way. now, in retrospect, however, my very small experiment of n = 1 🙂 seems at least to suggest that small body size + exaggerated side effects may indicate that a reduced dosage of tymlos can be effective. if for some reason, i had been unable to try a reduced dosage, i would have just stopped the drug.

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@kdbones

@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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@kdbones yes, great questions, i wonder all those things as well! i'm one of those who doesn't tolerate the bisphosphonates well so a possible second round of tymlos down the road would come in handy.

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@laurapearl

thanks, that would be great. very interested to hear the response. and you're right — like you, i suspected that my doctor would have disapproved if i asked her first. how could she approve, after all? almost no doctor is going to say yes if you ask them point-blank if you can alter the dosage of your drug in a non-evidenced based way. now, in retrospect, however, my very small experiment of n = 1 🙂 seems at least to suggest that small body size + exaggerated side effects may indicate that a reduced dosage of tymlos can be effective. if for some reason, i had been unable to try a reduced dosage, i would have just stopped the drug.

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@laurapearl Very few doctors will listen to these things from their patients. I do actually have one (my orthopedist) who realizes that patients can sometimes know something beyond evidence-based trials. For that reason, I really appreciate him.
What you are saying about a smaller person needing a smaller dose makes sense to me.
JK

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@contentandwell

@laurapearl Very few doctors will listen to these things from their patients. I do actually have one (my orthopedist) who realizes that patients can sometimes know something beyond evidence-based trials. For that reason, I really appreciate him.
What you are saying about a smaller person needing a smaller dose makes sense to me.
JK

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yes @contentandwell mine is like that also — we are lucky! in fact, i've never had one of those doctors who don't listen. my only complaint about my rheumatologist is that she's older than i am, and i'm selfishly worried about when she might retire 🙂

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Dear suze317 My endocrinologist chose me to do Tymlos. It's less expensive. I did have some side effects, but changed my injection time to night. I feel Tymlos is the best, but I don't know that much about the other one. I hope this helps, but I do like Tymlos.

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@laurapearl

yes @contentandwell mine is like that also — we are lucky! in fact, i've never had one of those doctors who don't listen. my only complaint about my rheumatologist is that she's older than i am, and i'm selfishly worried about when she might retire 🙂

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@laurapearl They say age should be a consideration when choosing a new doctor but even so, I may choose a doctor as a new PCP who is planning to retire in four years. I figure I will get at least 4 years of having a really good PCP if I do.
I have had two doctors retire in their 50s! I was surprised and not thrilled of course. The first retired because she was married to an older man who retired from his job, and the second one – I just don't know why he just retired! He told me he would be retiring in two years but then I got notice that he had retired now, just a few months after he told me two years. Both doctors were gynecologists.
JK

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@arlene7, Good afternoon. Welcome to Connect. I am very interested in your information about Evenity and your choice of Tymlos or Forteo because of insurance. I have chosen to answer you publicly because on Connect, sharing patient information and experiences is our modus operandi. Right now members share osteoporosis stories, questions, and experiences so that we can have current information of great value for our members which I hope includes you.

So please share your decision with us and the reasons for your choice. If you learn other things please update us.

I am sorry about your diagnosis of "severe" osteoporosis at that very young age of 62. It was obviously a big shock for me even at 76. I am 78 now and am just completing one year of Tymlos. You, @arlene7, have a lot of catching up to do……because like me you do not want to have any fractures. Do you have spinal fractures now?

I chose Tymlos after very bad side effects with bisphosphonates. The injection procedure is very simple. It quickly becomes second nature. You may want to talk to your doctor about a morning or evening injection. My preference is the morning because I would forget at night. How may we continue to be supportive? And I don't know about your lifestyle but am passing along this: Forteo has to be refrigerated 100% of the time. Tymlos is more stable and only needs refrigeration until it is opened. Are you a traveler?

May you be safe and protected.
Chris

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@artscaping

@arlene7, Good afternoon. Welcome to Connect. I am very interested in your information about Evenity and your choice of Tymlos or Forteo because of insurance. I have chosen to answer you publicly because on Connect, sharing patient information and experiences is our modus operandi. Right now members share osteoporosis stories, questions, and experiences so that we can have current information of great value for our members which I hope includes you.

So please share your decision with us and the reasons for your choice. If you learn other things please update us.

I am sorry about your diagnosis of "severe" osteoporosis at that very young age of 62. It was obviously a big shock for me even at 76. I am 78 now and am just completing one year of Tymlos. You, @arlene7, have a lot of catching up to do……because like me you do not want to have any fractures. Do you have spinal fractures now?

I chose Tymlos after very bad side effects with bisphosphonates. The injection procedure is very simple. It quickly becomes second nature. You may want to talk to your doctor about a morning or evening injection. My preference is the morning because I would forget at night. How may we continue to be supportive? And I don't know about your lifestyle but am passing along this: Forteo has to be refrigerated 100% of the time. Tymlos is more stable and only needs refrigeration until it is opened. Are you a traveler?

May you be safe and protected.
Chris

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Hi Chris,
Thank you so much for your reply. Currently, I am still pursuing the approval from my insurance company for Evenity, even after three denials. My fear of needles is overwhelming, considering that I would need to inject myself on a daily basis. Also Evenity is known to build bones especially in the spinal area, where I seem to have most of my bone loss. Therefore, my preference would be Evenity. It is so disappointing dealing with insurance companies, however I won’t give up!

My doctor has restricted my lifting to 15 pounds, no bike rides, or participation in other activities with risks of falling. As a very active person and a new grandmother it worries me to have these restrictions. I want to enjoy my grandchildren fully, and I now have to be so careful to avoid falls. Luckily, I have not had any fractures and have found myself being so cautious about everything I do. Trying my best to avoid any falls.

I was also diagnosed with idiopathic hypocalciuria, which I guess is why I have weak bones. Was prescribed a diuretic, but holding off on taking because it has sulfa and I was allergic to sulfa at a younger age. Want to visit an allergist first but with the corona virus I do not want to visits a doctor quite yet.

Hopefully I will hear back from my insurance company by the end of this week and can begin my journey.

As a side note, both my mother and grandmother had osteopenia but not severe.

Thanks again for your support.
-Arlene

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@artscaping

@arlene7, Good afternoon. Welcome to Connect. I am very interested in your information about Evenity and your choice of Tymlos or Forteo because of insurance. I have chosen to answer you publicly because on Connect, sharing patient information and experiences is our modus operandi. Right now members share osteoporosis stories, questions, and experiences so that we can have current information of great value for our members which I hope includes you.

So please share your decision with us and the reasons for your choice. If you learn other things please update us.

I am sorry about your diagnosis of "severe" osteoporosis at that very young age of 62. It was obviously a big shock for me even at 76. I am 78 now and am just completing one year of Tymlos. You, @arlene7, have a lot of catching up to do……because like me you do not want to have any fractures. Do you have spinal fractures now?

I chose Tymlos after very bad side effects with bisphosphonates. The injection procedure is very simple. It quickly becomes second nature. You may want to talk to your doctor about a morning or evening injection. My preference is the morning because I would forget at night. How may we continue to be supportive? And I don't know about your lifestyle but am passing along this: Forteo has to be refrigerated 100% of the time. Tymlos is more stable and only needs refrigeration until it is opened. Are you a traveler?

May you be safe and protected.
Chris

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Just a quick comment–i was diagnosed with severe osteoporosis at the age of 41. My doctor said that I was the right "type"- -White, Europeam ancestry, and my steroid asthma inhaler put me "over the edge." My bone density was worse than my mother's when I finally dragged her to the doctor in her early 80's. 4 years of treatment were not enough to keep her from breaking her hip. However, 20 years of treatment HAS been enough to push me into osteopenia, so I'm hopeful that i won't break a hip in my 80's

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