1. < Osteoporosis & Bone Health

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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diva | @diva | Feb 16, 2020

It is not about the needle injection. My body takes time to adjust to meds. I don't want to take a chance with any reaction. The Pharmacist I spoke with never heard of doing it and looked it up on the website. As far a smaller dosage for example on a thyroid med I am only using a half of the normal prescribed amount. It took me several weeks to adjust with side effects. I still have them but it is tolerable.

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diva | @diva | Feb 16, 2020
In reply to @contentandwell "@curlylocks Thank you, but I doubt I would fit the criteria for that program. I’m in..." + (show)
@contentandwell

@curlylocks Thank you, but I doubt I would fit the criteria for that program. I’m in that vast middle, not affluent but too much money to qualify for assistance. The good thing is that you only have to take this drug for a year and a half.
I plan to ask my endo if Tymlos would be indicated for me.
JK

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Have you applied for a Tier Exception? I am going to try. Nothing to lose. Just aggravates me that if you are not on Medicare you can get 0 copay coupons.

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diva | @diva | Feb 16, 2020
In reply to @artscaping "@laurapearl, Hi there and thanks for checking in with Connect again. Your post is very important..." + (show)
@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 it's Diva again.
Have you heard of Osaglex mk7? My friends Dr. recommended it for her Osteoporosis rather than drugs. Wants her on it for 4 months than rescan. Have a awesome day.

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Laurapearl | @laurapearl | Feb 16, 2020
In reply to @contentandwell "@laurapearl I'm glad that after all of those side-effects the drug at least improved your bones..." + (show)
@contentandwell

@laurapearl I'm glad that after all of those side-effects the drug at least improved your bones somewhat. I am thinking seriously that may be the drug I choose.
JK

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yes, and you know what helped me make the decision to stay with it? someone (either on this board or elsewhere, can't remember) wrote, if you had cancer that could be treated with chemo, would you leave your cancer untreated because chemo has uncomfortable side effects? somehow that gave me a diiferent perspective. we might not think of osteoporosis as being as serious as cancer, but as i mentioned before, i have seen the older women in my family become completely debilitated by it -- permanently folded over until the end of their lives.

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diva | @diva | Feb 16, 2020
In reply to @laurapearl "hi everyone: using 40 mg of tymlos is strictly off-label and i have never heard of..." + (show)
@laurapearl

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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I take smaller doses all the time and my Drs. know this. I am 5 feet and weight is in the 84 lbs. Women that I know that are smaller can not tolerate the full dosage of drugs. I still have side effects on my Thyroid med but can tolerate the dosage since it is smaller. And when it gets too bad I take a break for a day. From this group I have received wonderful information. But ultimately we must chose what we know our bodies can handle.

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JK | @contentandwell | Feb 16, 2020
In reply to @diva "Have you applied for a Tier Exception? I am going to try. Nothing to lose. Just..." + (show)
@diva

Have you applied for a Tier Exception? I am going to try. Nothing to lose. Just aggravates me that if you are not on Medicare you can get 0 copay coupons.

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@diva Thank you for the suggestion. I haven't applied for anything yet because I haven't made a final decision about what I will go with. I hadn't heard of Tier Exceptions before but it could possibly apply because I probably cannot take the oral drugs since they might affect my esophagus, but I am not sure how I would get out of taking the other, less expensive infusions.
JK

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1 reply
JK | @contentandwell | Feb 16, 2020
In reply to @laurapearl "yes, and you know what helped me make the decision to stay with it? someone (either..." + (show)
@laurapearl

yes, and you know what helped me make the decision to stay with it? someone (either on this board or elsewhere, can't remember) wrote, if you had cancer that could be treated with chemo, would you leave your cancer untreated because chemo has uncomfortable side effects? somehow that gave me a diiferent perspective. we might not think of osteoporosis as being as serious as cancer, but as i mentioned before, i have seen the older women in my family become completely debilitated by it -- permanently folded over until the end of their lives.

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@laurapearl That is really a good way of looking at it. Thanks for the thought. With that in mind, I think if you hope to have a good number of years left, it makes sense to do one of the available drugs, despite their side-effects.
JK

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diva | @diva | Feb 16, 2020
In reply to @contentandwell "@diva Thank you for the suggestion. I haven't applied for anything yet because I haven't made..." + (show)
@contentandwell

@diva Thank you for the suggestion. I haven't applied for anything yet because I haven't made a final decision about what I will go with. I hadn't heard of Tier Exceptions before but it could possibly apply because I probably cannot take the oral drugs since they might affect my esophagus, but I am not sure how I would get out of taking the other, less expensive infusions.
JK

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I have decided to go with Tymlos since it is less $ with my insurance. Also will not go with Prolia. Rx plans never mention it as a option . Also has nothing to do with your income. Get all your ducks in a row when applying. I.E. reasons why you can't have Prolia or Reclast . Any dental issues and have a doctor write a note for you to submit. I haven't started treatment and it will probably be a few more weeks till I do.

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3 replies
JK | @contentandwell | Feb 16, 2020
In reply to @diva "I have decided to go with Tymlos since it is less $ with my insurance. Also..." + (show)
@diva

I have decided to go with Tymlos since it is less $ with my insurance. Also will not go with Prolia. Rx plans never mention it as a option . Also has nothing to do with your income. Get all your ducks in a row when applying. I.E. reasons why you can't have Prolia or Reclast . Any dental issues and have a doctor write a note for you to submit. I haven't started treatment and it will probably be a few more weeks till I do.

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@diva Unfortunately I can't think of any dental issues. I will have to check with my transplant team to see if they have any objections to any of these medications. I can do nothing without their input.
JK

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lucky1038 | @lucky1038 | Feb 16, 2020
In reply to @diva "I have decided to go with Tymlos since it is less $ with my insurance. Also..." + (show)
@diva

I have decided to go with Tymlos since it is less $ with my insurance. Also will not go with Prolia. Rx plans never mention it as a option . Also has nothing to do with your income. Get all your ducks in a row when applying. I.E. reasons why you can't have Prolia or Reclast . Any dental issues and have a doctor write a note for you to submit. I haven't started treatment and it will probably be a few more weeks till I do.

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Why do you need to address dental issues when you're taking it?

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