1. < Osteoporosis & Bone Health

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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jbfm | @jbfm | May 11 4:46pm
In reply to @elisabeth007 "i am among the individuals who took Reclast who had a severe reaction (specifically an anaphylactic..." + (show)
@elisabeth007

i am among the individuals who took Reclast who had a severe reaction (specifically an anaphylactic reaction). i believe that i was likely allergic to one of the inactive ingredient. My allergist/immunologist researched cases of Reclast anaphylactic reaction and told me he found very few. I very much wish that i had been given the Brandname Reclast my allergist said needed to be prescribed for me instead of a generic. The first time i took reclast, it was brand name and it literally reversed my osteoporosis. The second time with the reclast generic, there was also significant improvement. Its unfortunate i had a reaction and its known that i’ve had repeated reactions to various preservatives

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Would you try Prolia?

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jbfm | @jbfm | May 11 4:47pm
In reply to @elisabeth007 "My endo prefers not to treat my osteoporosis now. Fortunately, i have a history of no..." + (show)
@elisabeth007

My endo prefers not to treat my osteoporosis now. Fortunately, i have a history of no broken bones. i do take calcium citrate daily

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Good. I don't either. My endo says my numbers are TERRIBLE tho

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elisabeth007 | @elisabeth007 | May 11 8:50pm

Please understand my endocrinologists recommendation to Not Treat MY osteoporosis is specific to me. i have had a number of serious reactions to drugs (eg autoimmune hepatitis fron taking a small dose of tapazole for hyperthyroidism/graves disease. Please do not assume that because my endo has decided he prefers NOT to treat my osteoporosis AT THIS TIME that it means another person with osteoporosis shouldn’t be taking osteoporosis drugs.

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elisabeth007 | @elisabeth007 | May 11 8:54pm
In reply to @jbfm "Good. I don't either. My endo says my numbers are TERRIBLE tho" + (show)
@jbfm

Good. I don't either. My endo says my numbers are TERRIBLE tho

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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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sallyj2 | @sallyj2 | May 11 9:29pm
In reply to @mayblin "@sallyj2 interesting planning based on premises 1) tymlos can be used more than 2 years 2)..." + (show)
@mayblin

@sallyj2 interesting planning based on premises 1) tymlos can be used more than 2 years 2) tymlos will continue to work forever on planned dosing regimen.

If no meds are used in between as you planned, what do you feel if your bmd just go back to square one ( understand more than 1x/year Dexa isn’t meaningful), after each pausing period?

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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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sallyj2 | @sallyj2 | May 11 9:32pm
In reply to @windyshores "@sallyj2 we will be curious to follow you. Without meds I was told I would lose..." + (show)
@windyshores

@sallyj2 we will be curious to follow you. Without meds I was told I would lose the Tymlos gains in a couple of years, but I cannot take hormones. You are a trailblazer. I have to do Reclast- no choice- and if I cannot tolerate it, I will wait for bone density to go down and try Tymlos all over again, I guess. We need research!

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I’m where you are in some respects- no reclast, will see if I can tolerate the testosterone and if it helps. My endo thinks Tymlos will work again.

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elisabeth007 | @elisabeth007 | May 11 9:37pm
In reply to @jbfm "Would you try Prolia?" + (show)
@jbfm

Would you try Prolia?

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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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elisabeth007 | @elisabeth007 | May 11 9:38pm
In reply to @sallyj2 "Endo plan is two years, test with markers periodically and Dexa, then likely continue for three,..." + (show)
@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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what are “markers”?

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elisabeth007 | @elisabeth007 | May 11 9:40pm

i had very good “long term effects with Reclast”—-first time it reversed my osteoporosis ….2nd time—-it improved my osteoporosis considerably

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gravity3 | @gravity3 | May 12 12:05am
In reply to @sallyj2 "I will not take another drug. Will try transdermal testosterone. I couldn’t tolerate tiny doses of..." + (show)
@sallyj2

I will not take another drug. Will try transdermal testosterone. I couldn’t tolerate tiny doses of transdermal estrogen due to fluid retention and weight gain.

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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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