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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ripley | @ripley | May 11 12:21pm
In reply to @sallyj2 "My doctor says I can stay on Tymlos or go off and repeat. I’m looking ahead..." + (show)
@sallyj2

My doctor says I can stay on Tymlos or go off and repeat. I’m looking ahead 20 years, so scary, no great follow up option.

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During your time off of Tymlos, will you take another drug before starting Tymlos again? Are you on any meds now?

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1 reply
sallyj2 | @sallyj2 | May 11 12:41pm
In reply to @ripley "During your time off of Tymlos, will you take another drug before starting Tymlos again? Are..." + (show)
@ripley

During your time off of Tymlos, will you take another drug before starting Tymlos again? Are you on any meds now?

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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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sallyj2 | @sallyj2 | May 11 12:43pm
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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I should clarify, I don’t plan to take another drug in between, we will just watch markets and BMD. I am not currently on bone drugs, just progesterone, which I’ve been on for many years.

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2 replies
windyshores | @windyshores | May 11 2:39pm
In reply to @sallyj2 "I should clarify, I don’t plan to take another drug in between, we will just watch..." + (show)
@sallyj2

I should clarify, I don’t plan to take another drug in between, we will just watch markets and BMD. I am not currently on bone drugs, just progesterone, which I’ve been on for many years.

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@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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1 reply
mayblin | @mayblin | May 11 3:34pm
In reply to @sallyj2 "I should clarify, I don’t plan to take another drug in between, we will just watch..." + (show)
@sallyj2

I should clarify, I don’t plan to take another drug in between, we will just watch markets and BMD. I am not currently on bone drugs, just progesterone, which I’ve been on for many years.

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@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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gently | @gently | May 11 3:54pm
In reply to @ripley "What do you mean when you said Reclast "didn't work out well" for your neighbor?" + (show)
@ripley

What do you mean when you said Reclast "didn't work out well" for your neighbor?

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With every drug there is a percentage of people who have adverse reactions.
20 to 30% of patients who take Reclast experience acute phase reaction. It's very like a bad flu, except in some it lasts months. Those patients have pain in the muscles and joints. For my very active neighbor, it has been several months. She aches so much that she hasn't wanted to get out of bed and pretty much hasn't.
I would take Reclast, if there were nothing else. And my neighbor could well have had an adverse reaction to any of the other medications available. But on top of that she blames her husband, which isn't

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jbfm | @jbfm | May 11 4:07pm
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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That's what happened to me after Forteo and no drugs. Back to square one. As if I'd never done Forteo at all

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1 reply
elisabeth007 | @elisabeth007 | May 11 4:13pm
In reply to @gently "jbfm@jbfm It may be adviseable to take Forteo for a third year. There aren't studies because..." + (show)
@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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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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2 replies
jbfm | @jbfm | May 11 4:21pm
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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So sorry to read this! So scary.
So what are you doing instead now?

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elisabeth007 | @elisabeth007 | May 11 4:32pm

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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