1. < Osteoporosis & Bone Health

Tymlos for life? My endo is telling me this

Posted by zygote @zygote, Aug 23 8:10am

I saw my endo this week and he said he wants me on Tymlos for the rest of my life. I'm 76 and am only starting my 3 month. Has anyone else been told this?
When I started tymlos my heart was POUNDING . Suggestions that I start low and move up in my dose helped enormously... I only had pressure on my heart and now starting the 3rd month the pressure is finally gone.

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zygote | @zygote | Aug 25 9:35pm
In reply to @windyshores "Getting back to the original topic, @zygote, I seriously doubt a knowledgeable doctor would say they..." + (show)
@windyshores

Getting back to the original topic, @zygote, I seriously doubt a knowledgeable doctor would say they were going to prescribe Tymlos for life. Maybe the doctor misspoke, was unclear, or maybe you misheard. Do you have access to notes on the portal?

Some doctors (I have gone to a 4 over the years) will say we need to be on meds for life. A few will say we need to be on Prolia for life (if we are older). My doctor has mentioned drug holidays but the assumption is I will be on meds for a long time.

I honestly sometimes get concerned for a newbie reading this forum. There are many controversies, uncertainties and inadequacies in this field which is, hopefully, evolving. This forum is for sharing personal experience. The key is to have a good doctor to guide you.

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I do have access to the notes but no mention of tymlos in the notes.
This is a fantastic forum and I appreciate so much all the education I am getting from this site. Thank you all!

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dooshie | @dooshie | Aug 26 12:48am
In reply to @windyshores "@dooshie what does your endocrinologist say about this? Was your last Tymlos in July? I was..." + (show)
@windyshores

@dooshie what does your endocrinologist say about this? Was your last Tymlos in July?

I was off Tymlos for a month last fall, due to being really sick with COVID with increased heart rhythm issues, then did it for 10 days, then did Evenity. I wondered the same thing.

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My rheumatologist is not too happy with me because it’ll be 3 months with no osteo med due to traveling. I went off mid-June. I don’t want to take Prolia or a bisphosphonate for personal reasons but I am concerned about losing the gains I’ve had with Tymlos in 2 years. We travel quite a bit so Evenity is going to be a problem but sounds like my best choice for continuing bone growth. I’m in a predicament right now.

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1 reply
loriesco | @loriesco | Aug 27 12:33pm

The protocol is 2 years. But that has changed and it can be taken for longer now. Take it for the two years and use the time to investigate. I think the lab tests you will take and the balancing of the other meds like Reclast might mean you take for a limited time. For "life" seems a little extreme. Keep researching!

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1 reply
katwhisperer | @katwhisperer | Aug 27 5:13pm
In reply to @loriesco "The protocol is 2 years. But that has changed and it can be taken for longer..." + (show)
@loriesco

The protocol is 2 years. But that has changed and it can be taken for longer now. Take it for the two years and use the time to investigate. I think the lab tests you will take and the balancing of the other meds like Reclast might mean you take for a limited time. For "life" seems a little extreme. Keep researching!

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especially for some of us here in our 50s....for life could be 30-40 years on Tymlos! I'd like to see any insurer or medicare plan pay for THAT lol. Even with the mfgr savings card, I still was out of pocket a few thousand for treatment.

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windyshores | @windyshores | Aug 27 5:38pm

I really don't believe anyone can take Tymlos past 2 years. It doesn't even work after a year or two. I cannot find any new information indicating that the 2 year limit has been lifted. Forteo has been around longer and can be used for 2 years. It sounds like @zygote's doctor was meaning to say Prolia.

@madhub140 that link to Susan Brown's cautions about Tymlos and other drugs is very outdated, PLEASE anyone new reading those: the black box warning on Forteo and Tymlos concerning bone cancer was lifted. Not a single human has gotten cancer from these drugs.

Also, I was influenced in the past by Brown and others who dismissed effectiveness. Luckily I found a med I could take- Tymlos. I gained 20% in my spine on Tymlos and went from severe to borderline osteoporosis.

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1 reply
loriesco | @loriesco | Aug 27 6:54pm
In reply to @windyshores "I really don't believe anyone can take Tymlos past 2 years. It doesn't even work after..." + (show)
@windyshores

I really don't believe anyone can take Tymlos past 2 years. It doesn't even work after a year or two. I cannot find any new information indicating that the 2 year limit has been lifted. Forteo has been around longer and can be used for 2 years. It sounds like @zygote's doctor was meaning to say Prolia.

@madhub140 that link to Susan Brown's cautions about Tymlos and other drugs is very outdated, PLEASE anyone new reading those: the black box warning on Forteo and Tymlos concerning bone cancer was lifted. Not a single human has gotten cancer from these drugs.

Also, I was influenced in the past by Brown and others who dismissed effectiveness. Luckily I found a med I could take- Tymlos. I gained 20% in my spine on Tymlos and went from severe to borderline osteoporosis.

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Weren't you the one who told me that Tymlos CAN now be taken for more than 2 years? If you weren't maybe it was @gently?gently One of you did and I checked it out and posted the link. And it can be prescribed for more than 2 years. However, one is supposed to be then taking the Reclast when they complete the Tymlos for 3 years (the protocol now) and then you are done. Unless there is another reason your doctor finds to continue.
This was the article I believe I quoted from after one of you - I thought told me the restriction was lifted: https://www.ccjm.org/content/ccjom/88/9/489.full.pdf

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loriesco | @loriesco | Aug 27 7:00pm
In reply to @madhub140 "This from Better Bones expert, Susan E Brown: https://www.betterbones.com/bone-drugs/is-tymlos-safe/ And this: https://www.betterbones.com/bone-drugs/anabolic-treatment/" + (show)

The better bone expert needs to write better (newer) articles. One is 2018 and the other is 2020. The information is now old and some of it is outmoded. Here is something from 2021 for prescribers. This is more helpful (and accurate). You can call the manufacturer to see if there is further updates. But I think this is current: https://www.ccjm.org/content/ccjom/88/9/489.full.pdf

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2 replies
loriesco | @loriesco | Aug 27 7:02pm
In reply to @dooshie "My rheumatologist is not too happy with me because it’ll be 3 months with no osteo..." + (show)
@dooshie

My rheumatologist is not too happy with me because it’ll be 3 months with no osteo med due to traveling. I went off mid-June. I don’t want to take Prolia or a bisphosphonate for personal reasons but I am concerned about losing the gains I’ve had with Tymlos in 2 years. We travel quite a bit so Evenity is going to be a problem but sounds like my best choice for continuing bone growth. I’m in a predicament right now.

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you can order 90 days and take it with you. It is small. You can have it shipped to where you will be or pick it up at a pharmacy where you will be traveling to.

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1 reply
windyshores | @windyshores | Aug 27 8:45pm
In reply to @loriesco "The better bone expert needs to write better (newer) articles. One is 2018 and the other..." + (show)
@loriesco

The better bone expert needs to write better (newer) articles. One is 2018 and the other is 2020. The information is now old and some of it is outmoded. Here is something from 2021 for prescribers. This is more helpful (and accurate). You can call the manufacturer to see if there is further updates. But I think this is current: https://www.ccjm.org/content/ccjom/88/9/489.full.pdf

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@loriesco that article is about teriparatide (Forteo), and is excellent for anyone considering Forteo but there is still no source that I can find that says Tymlos can be taken more than 2 years. If anyone can find one, please share.

Forteo has been around longer and a study was apparently done. I read somewhere that there is no chance that Radius is going to put the time and money into a study for extending the time on Tymlos but who knows.

I certainly hope I never wrote that it could be taken longer but if I did it was a mistake. I have not seen anything about longer time on Tymlos and I keep looking because I would love to take it again.

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