Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

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I started a month ago with four clicks and worked my way up to six clicks. I plan on starting the full dose in two days. No major side effects except maybe a little bit of an elevated heart rate for a few minutes. I question my decision to take this medication every single day. Still doing more research and have an upcoming REMS test and another DEXA with a TBS which wasn't done with my first DEXA. My spine score was -3.2. Hips osteopenia.

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Questions about Prolia :
I have been in Tymlos full dose for over a year and Dr wants me to stay on it for the second year even though there was no improvement yet on my dexa after a year. Doctor said maybe Tymlos is improving bone Quality rather than density .
Who knows .
Anyway after the 2 years of Tymlos I need to choose the second med to hold onto
The Bone I’ve got.
I am 65 years old .
Doctor says maybe prolia next -
But after reading comments on this site about prolia I am scared.
Has anyone had good experiences on prolia ?

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Profile picture for mariahcb @mariahcb

Honestly speaking, I think it's outrageous that YOU had to come up with the plan to titrate the drug and that the Drs are constrained by the drug companies. The more I read about the entirety of osteoporosis treatment, I'm sickened by how these drugs are being inflicted on trusting patients. More and more my gut tells me to resist.

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mariahcb Certainly possible that the drug companies' money and clout may be effecting all this, but the thing that jumps out at me more and more is the seemingly total lack of continuity and guidelines for the use of these drugs. Specialists in this are who can't agree on which drugs, in which situations, handling of side effects that may be transient, adjustments in dosage and possible effects on outcomes, etc, etc, etc. The drugs are really not that new anymore. Any doctor ordering them should have standard guidelines to follow, with clear exceptions that can be made if needed. As a retired nurse, it makes my head spin.

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yds, while some on site have successfully used lower doses of Tymlos and some are titrating up to the 80mcg dose, I suggest that you look at Forteo. Forteo is a 20mcg dose of the same parathyroid dna segment (pth1-34) in Tymlos.
I'm mid third year on Forteo and am happy with the medication. Because Tymlos has increased BMD, Forteo would also be effective.
Forteo seems like your only choice excluding a lower dose of Tymlos. I speak so highly of Forteo and so constantly that I'm suspected of working for Eli Lily.

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I started Tymlos 1 year ago. Started on 80 full dose and ended up in the ER with heart issue. Went down to 2 and I worked up. No side effects by going slowly up.

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Profile picture for gently @gently

yds, while some on site have successfully used lower doses of Tymlos and some are titrating up to the 80mcg dose, I suggest that you look at Forteo. Forteo is a 20mcg dose of the same parathyroid dna segment (pth1-34) in Tymlos.
I'm mid third year on Forteo and am happy with the medication. Because Tymlos has increased BMD, Forteo would also be effective.
Forteo seems like your only choice excluding a lower dose of Tymlos. I speak so highly of Forteo and so constantly that I'm suspected of working for Eli Lily.

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@gently, thank you. I wonder, though, why my doctor thinks I cannot take lower doses of Tymlos, when I see that others, like vickizuckerman82, have been able to do so.

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yds, you probably have a diligent md who follows the guidelines set by the manufacturers of the drug.
There aren't clinical trials on titration with Tymlos.
Very few of our endocrinologists study osteology the way they study immunology or metabology.
It's hard on doctors if patient knowledge opposes what they have learned (probably a long time ago). But we usually have only one maybe two diseases. They have hundreds of diseases to know. We should know more about our own diseases than they can possibly keep abreast of.
We have access to pub med just like they do, but we also have access to the histories of these intrepid members like vickizuckerman82 on Mayo Connect.

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Profile picture for 2024tymloshelp @2024tymloshelp

Questions about Prolia :
I have been in Tymlos full dose for over a year and Dr wants me to stay on it for the second year even though there was no improvement yet on my dexa after a year. Doctor said maybe Tymlos is improving bone Quality rather than density .
Who knows .
Anyway after the 2 years of Tymlos I need to choose the second med to hold onto
The Bone I’ve got.
I am 65 years old .
Doctor says maybe prolia next -
But after reading comments on this site about prolia I am scared.
Has anyone had good experiences on prolia ?

Jump to this post

@2024tymloshelp
I have been on Tymlos for 15 months now with definite success so far, and I power through the side effects which for me have been about a 10 lb weight gain esp abdominal area and a faster heartbeat for about 45 min after injection. I personally was on Prolia before this and had transitioned from it to Boniva (NOT strong enough as it turns out) and then found out I’d had the Prolia rebound effect after three vertebral compression fractures. My doctor here in Orlando that I now see is a specialist in women’s bone health and she is planning for me to have an infusion or two of Reclast after the Tymlos is done. I have an appointment with her in a few months to make the plan for me. I hate that I have to take all these meds but I hope my daughters’ generation will have more knowledge of prevention etc and not have to go through this type of situation.
So in my opinion you are young to go on Prolia. I would consider it if I were in my 80’s and planning to never stop taking it. I am 68 at this time, I wish you all the best, these decisions are so tough… if you have any questions about my history I am happy to share!

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Profile picture for gently @gently

yds, you probably have a diligent md who follows the guidelines set by the manufacturers of the drug.
There aren't clinical trials on titration with Tymlos.
Very few of our endocrinologists study osteology the way they study immunology or metabology.
It's hard on doctors if patient knowledge opposes what they have learned (probably a long time ago). But we usually have only one maybe two diseases. They have hundreds of diseases to know. We should know more about our own diseases than they can possibly keep abreast of.
We have access to pub med just like they do, but we also have access to the histories of these intrepid members like vickizuckerman82 on Mayo Connect.

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@gently If the doctors are behind on the latest developments, I think the drug companies need to do better at acquiring and passing along information that they obtain . And when a patient has a problem, there should be better methods for the sharing of that experience between doctor and drug companies. When I was practicing as an RN in a cardiac setting, we often needed to change the way of administering a drug (or dosage) because of new information. Currently, it seems as though there is a lot of hype with every exciting new drug, but the people ordering it are not, in many cases, aware (or especially interested?) in the varied responses they may see. Just what I seem to be hearing ...

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Profile picture for gently @gently

yds, while some on site have successfully used lower doses of Tymlos and some are titrating up to the 80mcg dose, I suggest that you look at Forteo. Forteo is a 20mcg dose of the same parathyroid dna segment (pth1-34) in Tymlos.
I'm mid third year on Forteo and am happy with the medication. Because Tymlos has increased BMD, Forteo would also be effective.
Forteo seems like your only choice excluding a lower dose of Tymlos. I speak so highly of Forteo and so constantly that I'm suspected of working for Eli Lily.

Jump to this post

@gently How long can you stay on Forteo? Tymlos is supposed to be only 2 years. I am coming to the end of my 2 years, and finally having my DXA at the end of the month. I reduced to 60mcg after the first 6 months, without my doctor's blessing, because I was feeling so weak.

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