Tymlos or Forteo

Posted by jbfm @jbfm, May 10 8:38am

Has anyone taken Forteo for two years, taken several years with no meds and then taken Tymlos successfully? I'm loathe to begin Reclast because I'm worried about long-term effects! But I need to do something!

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@elisabeth007

what are “markers”?

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CTX, P1NP

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@gravity3

Does you pcp or another doc prescribe the testosterone? I have not been getting any support for that from docs. I wanted it for helping to build muscle and support bones.

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Obgyn, but pcp also willing. Doctors who won’t try it are out of date imho. I’ve done well on progesterone. Estrogen helped some things, but I couldn’t tolerate the fluid retention. Hoping testosterone helps. Doctors have also mentioned low dose of dhea. But, you have to test consistently.

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@gently

jbfm@jbfm
It may be adviseable to take Forteo for a third year. There aren't studies because the black box has only recently been removed from Forteo.
I have the same reluctance to taking Reclast. It had been written that only 22% of individuals taking Reclast have the severe reaction. Now I'm reading 30%, As Reclast is becoming more commonly prescribed, I suspect that number will rise.
I have an additional reluctance to taking Reclast. It stays in the bones for 10+ years. Effectively blocking normal remodeling. And significantly, blunting the positive effect of the powerful anabolics like Forteo or Tymlos. The only thing Reclast has in its favor (in my opinion) is that it is a far cry above Prolia.
I've just finished my first year of Forteo. My plan is to take another year and if everything looks good I'll take a third.
If I have to take a bisphosphonate, I'll choose risidronate because it doesn't persist in the bone the way Reclast does.

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Hi gently, I am also on Forteo, currently in my second month. My endo is suggesting Reclast but is ok with Alendronate as follow up med. Reclast concerns me. I'm going to ask my endo about HRT even tough I'm 14 years post menopause. HRT may not be an option for me as I have a family history of heart disease (although I do not have any heart, diabetes, or cancer disease personally).

My question is..... per my endo, we can now take Forteo up to 4 years lifetime use. However I've read in Great Bones book that Forteo wanes around month 18. Is a break needed before starting a third year? If so, how long? What med can we take to lock in gains but not lock our bones from rebuilding with Forteo in the future?

Are you aware of any studies that show how long the various bisphosphonates last in our bones?

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@elisabeth007

i would think you might want to discuss your fracture risk with your endo and if and how your numbers have changed.

I am blessed with a history of never breaking a bone and no history of osteoporosis and/or fractured bones in my family

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Oh good! My Mom broke her hip - so my fracture risk is high!
Good luck to you!

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@sallyj2

Endo plan is two years, test with markers periodically and Dexa, then likely continue for three, then off one, test with markers and Dexa.

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Sounds like a great plan! Good luck!

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@elisabeth007

Numerous endo’s have advised me not to take Prolia because of my high allergy risk status. i am fine with my endo’s recommendation that i don’t take any osteoporosis drugs now. At some point, I might take Eventity but i have been advised not to do so while i’m hyperthyroid. I developed auto-immune hepatitis last year from a tiny dose of what is considered a very safe drug for hyperthyroidism, tapazole.

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Oh, I'm sooo sorry!

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@leeosteo

Hi gently, I am also on Forteo, currently in my second month. My endo is suggesting Reclast but is ok with Alendronate as follow up med. Reclast concerns me. I'm going to ask my endo about HRT even tough I'm 14 years post menopause. HRT may not be an option for me as I have a family history of heart disease (although I do not have any heart, diabetes, or cancer disease personally).

My question is..... per my endo, we can now take Forteo up to 4 years lifetime use. However I've read in Great Bones book that Forteo wanes around month 18. Is a break needed before starting a third year? If so, how long? What med can we take to lock in gains but not lock our bones from rebuilding with Forteo in the future?

Are you aware of any studies that show how long the various bisphosphonates last in our bones?

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leeosteo, there are studies. I haven't looked at them for while; they must be dated. I spoke to a pathologist who said that bisphosphonates adhere in irregular patterns unrelated to bone weakness. I've read ten years for zolendronate, two years for risidronate. Those being the highest and lowest.
The waning of Forteo is gradual. Signaling from osteoblast activity raises osteoclast production.
I suspect that there is a point at eight months to one year where an interlude without Forteo would restore balance. My guess is that one month without any medication is best. That is mainly from looking at charts showing the decrease in bmd after cessation of Forteo. I did have a month without Forteo (lost pens) at around ten months. I can report a larger drop in osteoclasts (CTX) than osteoblasts (P1NP) indicating (at least to me) improved balance.
Behind this is the presumption that bone remodeling has a best CTX/P1NP ratio.
Beyond your question is the additional assumption that while the ratio is important, a higher number of the osteoblast-osteoclast coupling is needed when we have osteoporosis.
I've not looked at Great Bones. From comments on Mayo Connect, I could wish that the declarations had more depth. Why does the chiropractor recommend against risidronate. Is it the very reason the bone expert recommends it if you plan to retake Forteo or Tymlos. Why does Forteo wane after 18 months.
Mind, though, that there are extremely intelligent physicians who say that you can't use CTX and P1NP in relation to each other. Their only use might be in relation to themselves prior and post pharmaceutical intervention.
Will you be using bone markers?
I'll look for citations hoping some other poster beats me to a recent publication. I think my sources are 2008.

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@gently

leeosteo, there are studies. I haven't looked at them for while; they must be dated. I spoke to a pathologist who said that bisphosphonates adhere in irregular patterns unrelated to bone weakness. I've read ten years for zolendronate, two years for risidronate. Those being the highest and lowest.
The waning of Forteo is gradual. Signaling from osteoblast activity raises osteoclast production.
I suspect that there is a point at eight months to one year where an interlude without Forteo would restore balance. My guess is that one month without any medication is best. That is mainly from looking at charts showing the decrease in bmd after cessation of Forteo. I did have a month without Forteo (lost pens) at around ten months. I can report a larger drop in osteoclasts (CTX) than osteoblasts (P1NP) indicating (at least to me) improved balance.
Behind this is the presumption that bone remodeling has a best CTX/P1NP ratio.
Beyond your question is the additional assumption that while the ratio is important, a higher number of the osteoblast-osteoclast coupling is needed when we have osteoporosis.
I've not looked at Great Bones. From comments on Mayo Connect, I could wish that the declarations had more depth. Why does the chiropractor recommend against risidronate. Is it the very reason the bone expert recommends it if you plan to retake Forteo or Tymlos. Why does Forteo wane after 18 months.
Mind, though, that there are extremely intelligent physicians who say that you can't use CTX and P1NP in relation to each other. Their only use might be in relation to themselves prior and post pharmaceutical intervention.
Will you be using bone markers?
I'll look for citations hoping some other poster beats me to a recent publication. I think my sources are 2008.

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Gently, thanks for your reply.

Yes, I will be using bone markers. I've read both McCormick books and met with him where we discussed them. I'm not aware that he does not recommend risidronate. In my case, I've used alendronate in the past without issue. He suggested alendronate after Forteo. Fortunately my endo agreed to baseline CTX, P1NP, and Dexa prior to starting Forteo. She also agreed to three and eighteen month CTX/P1NP tests.

I'm currently 66 and concerned that I will run out of runway on osteoporosis meds (because I plan to live to 100... smile. I'm very active). My endo gave me the choice of Forteo, Tymlos or Evenity. I selected Forteo for various reasons but also for it's 4 yr lifetime use. I'm really curious to understand sequencing of these drugs. Any sources you or others could provide would be great.

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@leeosteo

Gently, thanks for your reply.

Yes, I will be using bone markers. I've read both McCormick books and met with him where we discussed them. I'm not aware that he does not recommend risidronate. In my case, I've used alendronate in the past without issue. He suggested alendronate after Forteo. Fortunately my endo agreed to baseline CTX, P1NP, and Dexa prior to starting Forteo. She also agreed to three and eighteen month CTX/P1NP tests.

I'm currently 66 and concerned that I will run out of runway on osteoporosis meds (because I plan to live to 100... smile. I'm very active). My endo gave me the choice of Forteo, Tymlos or Evenity. I selected Forteo for various reasons but also for it's 4 yr lifetime use. I'm really curious to understand sequencing of these drugs. Any sources you or others could provide would be great.

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I like Dr. Ben Leder's YouTube video Combinations and Sequencing of Approaches to Osteoporosis.

Bone markers showed that Tymlos was getting tired at 18 months, but I continued for the full two years. I would not continue for more than that. @gently's ideas on keeping bones receptive to more anabolic use by using a milder anti-resorptive are interesting.

As I wrote before, if initial treatment gets us to a place we are happy with, I think a full Reclast treatment, for however many infusions (could be one) are needed, makes sense Reclast, it is said, lasts 10 years in the system.

All the studies I have seen about an anabolic after a bisphosphonate involve alendronate. I am unable to take orals though.

The whole issue of long term treatment seems understudied and we are, in a way, guinea pigs!

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@windyshores

I like Dr. Ben Leder's YouTube video Combinations and Sequencing of Approaches to Osteoporosis.

Bone markers showed that Tymlos was getting tired at 18 months, but I continued for the full two years. I would not continue for more than that. @gently's ideas on keeping bones receptive to more anabolic use by using a milder anti-resorptive are interesting.

As I wrote before, if initial treatment gets us to a place we are happy with, I think a full Reclast treatment, for however many infusions (could be one) are needed, makes sense Reclast, it is said, lasts 10 years in the system.

All the studies I have seen about an anabolic after a bisphosphonate involve alendronate. I am unable to take orals though.

The whole issue of long term treatment seems understudied and we are, in a way, guinea pigs!

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I am very interested to see what Dr. Leder has to say about this during his presentation to the OsteoBoston group on May 21 7pm. I am still struggling with my endocrinologists recommendation to follow evenity with prolia.

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