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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I did not have any reactions to it. I am now going another route because it quit working for me. The first year on it, my bone density improved 6.1%. Last year, I only got .1%.

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@louise2023

Thank you again for following up. I do not have any fractures but, my t scores in my spine are not good-3.7. I should say that I do respect my doctor’s opinion. He certainly is more knowledge than I am re: treatments but, I have to say that he is not someone very open to discussion. I have no idea if insurance has anything to do with his choice but, he does know my concerns about increased risk of AFF and ONJ

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@louise2023 I would get another opinion, personally. That is not a good score and I wonder if you can get coverage for a bone-builder. If you qualify, Tymlos has an assistance program.

My endocrinologist gives me choices with information. He said he won't ever prescribe Prolia for me.

The fact that you have already been on an anti-resorptive and still have fairly severe osteoporosis might mean the doc can say it it medically necessary for you to have Tymlos or Forteo.

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@windyshores

@louise2023 I would get another opinion, personally. That is not a good score and I wonder if you can get coverage for a bone-builder. If you qualify, Tymlos has an assistance program.

My endocrinologist gives me choices with information. He said he won't ever prescribe Prolia for me.

The fact that you have already been on an anti-resorptive and still have fairly severe osteoporosis might mean the doc can say it it medically necessary for you to have Tymlos or Forteo.

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Thank you windyshores. I plan on taking your advice.

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@windyshores

@louise2023 the bone builders like Tymlos, Forteo or Evenity, are most effective if taken first, before bisphosphonates or Prolia. If you can take a bone builder, don't take Prolia first.

To pick that apart further, I was told that I might take Tymlos before Evenity but that I would not be able to take Evenity after Tymlos.

Some of this is also an insurance problem. Insurers like you to have "failed" a bisphosphonate or Prolia first, or mine does. Severity of DEXA scores or presence of fractures allows coverage of bone builders for many of us, but a MD might be able to advocate too.

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Does someone know how much tymlos cost and if Medicare covers it..have a supplement too

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Yes it is covered and also the company has a financial assistance program. I get mine for free. Call Together with Tymlos and ask about the Radius Assist program.

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After going through a proximal humerus fracture of the shoulder, I would choose Tymlos, the newer drug that seems closer to natural and to the source of the problem with fewer hassles and less side effects, It looks like they are getting a handle on this terrible disease.

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I have only had one shot of Prolia. I will have the next one On February 9th. I have had some body aches but no real serious side effects. I am concerned that this drug has an immune system lowering effect. That makes me worry about cancer. I am trying to boost my immune system while taking this bone drug that lowers my immune system. I am also concerned about the safety of this drug. I would like to not have the second shot which is like I said February 9th. Is it safe to quit after just one shot?

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@sju

I have only had one shot of Prolia. I will have the next one On February 9th. I have had some body aches but no real serious side effects. I am concerned that this drug has an immune system lowering effect. That makes me worry about cancer. I am trying to boost my immune system while taking this bone drug that lowers my immune system. I am also concerned about the safety of this drug. I would like to not have the second shot which is like I said February 9th. Is it safe to quit after just one shot?

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Good evening @sju and welcome to Connect. Thanks for your question about Prolia? Your reasons for stopping that medication are true concerns. Because I am who I am, I am wondering if you knew about these issues when you started Prolia? Was your first injection six months ago?

It appears that I just went through the same situation. On June 13, the day I was supposed to receive my third Prolia dose, I switched from Prolia to another medication as ordered by my Mayo endocrinologist. I had asked for a consultation from him because I was very concerned about the "safety" of the drug for me. My prior practician gave me no choice.

So far, I am doing well without significant side effects. So....I do think you can change as long as you replace Prolia with another Osteoporosis option. Please make sure you are connected with an endocrinologist or other bone health specialist who can help you with this decision.

You don't want to risk any fractures so I guess you have to make a change rather quickly.

May you be safe, protected and free from inner and outer harm.
Chris

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@sju

I have only had one shot of Prolia. I will have the next one On February 9th. I have had some body aches but no real serious side effects. I am concerned that this drug has an immune system lowering effect. That makes me worry about cancer. I am trying to boost my immune system while taking this bone drug that lowers my immune system. I am also concerned about the safety of this drug. I would like to not have the second shot which is like I said February 9th. Is it safe to quit after just one shot?

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@sju I had a similar concern about the impact on the immune system (rankl, very specific) and cancer, and I remember that researching it , as well as asking my doctor, reassured me. Studies WERE done on this question. Ask your docs!

I have already had breast cancer which can metastasize to bone. I did not do Prolia, however, because my doc doesn't recommend it due to the problem of bone density drop when stopped.

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@mmorina

Has anyone taken Forteo and if so what were the side effects if any and or has anyone been satisfied with the results of haven taken Forteo. I am about to start either Forteo or Tymlos.

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I started Forteo about 3 weeks ago. I initially got nauseated a few hours after the injection. I took it at night so it would wake me up and I started keeping Pepto by the bed to calm down my stomach.

BUT AFTER 2 WEEKS, I suddenly had a whole host of side effects sweep in including chills, fever, body aches, bone aches in my legs, constant nausea and headache. All I could do is go to bed and shiver.

I stopped the injections for 3 days and the side effects went away. I have just resumed the injections and plan to do them only every other night for a while to see if I the side effects will be less dramatic and if they will subside after a time. NO FUN...but I have no choice. I have to use the medication for at least 6 months.

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