Tymlos for Osteoporosis Experiences

Posted by tilou @tilou, Oct 20 10:58am

Does anyone use or used Tymlos for osteoporosis?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@pgn

Thank you so much for your response. I’m convinced now that starting it at a lower dose will be okay. Quite honestly, I admire your bravery considering your heart challenges to begin with! Apparently, even with your challenges you deal with, they feel the benefit will outweigh the risk.
Thanks too for your civil duty during this election! That’s enough to make your heart race 😊.
Thanks again 😊

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Haha you’re right about that! Crazy times we are living in!

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@jennirdh

Windyshores you are an inspiration to me! Thanks for all your great info. As you know afib and tachycardia are unpleasant, so want to avoid if at all possible having to be converted back to sinus rhythm. I may actually get to where I take Tymlos in the morning bc when I’m busy it’s easier to not focus on my heartbeat than at night when I’m trying to relax and go to sleep.

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@jennirdh I switched to morning and had a better experience. I have low blood pressure and at first I hydrated, ate salty things, and constantly used a blood pressure cuff. I also stayed in bed or on the couch. After awhile I noticed I did better if I got up and went out or did something active. Maybe activity raised my blood pressure? I put the blood pressure cuff away. Everyone is different.

My afib is always at night so that was why I switched. Added benefit was that I no longer woke with a headache, though that might have stopped anyway.

My two years on Tymlos was the ONLY two year period I have gone without any afib at all. Strange right?

It might help to remember that Tymlos leaves the body very quickly. Half life is about 1.7 hours. Immediate side effects leave quickly too. Hope that's reassuring for folks. I hope people move up as quickly as they can. There will be side effects like light headedness for some of us so I don't think the expectation can be that titration will eliminate side effects. But tolerable, very short-lived side effects are well worth the excellent gains Tymlos can bring. And some will have no side effects at all.

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I am almost done with my first month of Tymlos. I started with a lower dose-5 clicks-and am now at 7 with almost no side effects: slight nausea in the first hour or so after the injection and a little fatigue. I had a cardiac ablation for afib in 2015 but have had no recurrence of symptoms since. My endocrinologist has mentioned reclast after Tymlos, which I do not want to do. I am interested in evenity snd also in the modified MRI therapy available throughout Europe.

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@fresian1

I am almost done with my first month of Tymlos. I started with a lower dose-5 clicks-and am now at 7 with almost no side effects: slight nausea in the first hour or so after the injection and a little fatigue. I had a cardiac ablation for afib in 2015 but have had no recurrence of symptoms since. My endocrinologist has mentioned reclast after Tymlos, which I do not want to do. I am interested in evenity snd also in the modified MRI therapy available throughout Europe.

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I’m glad you’re doing well on Tymlos! What is the modified MRI therapy available in Europe?

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It is known as MBST, a modified form of MRI that can stimulate new bone growth and reduce fracture risk, with no side effects. It has been in use in Germany for 20 years and is now available throughout Europe and in the Arab states and Singapore. I have a few links below.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5726216/
https://journals.lww.com/md-journal/fulltext/2024/01120/efficacy_of_magnetic_therapy_for_osteoporotic.7.aspx

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@fresian1

It is known as MBST, a modified form of MRI that can stimulate new bone growth and reduce fracture risk, with no side effects. It has been in use in Germany for 20 years and is now available throughout Europe and in the Arab states and Singapore. I have a few links below.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5726216/
https://journals.lww.com/md-journal/fulltext/2024/01120/efficacy_of_magnetic_therapy_for_osteoporotic.7.aspx

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When I clicked this link I could not see any slides--just the doctor presenting.

Use this link:
https://www.youtube.com/results?search_query=osteoboston+MBST
to see slides

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@sirrom

When I clicked this link I could not see any slides--just the doctor presenting.

Use this link:
https://www.youtube.com/results?search_query=osteoboston+MBST
to see slides

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When will it come here?

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@windyshores

Compression fractures change the structure of the spine, so that vertebrae that had a parallel symmetric structure become wedge-shaped, and that doesn't improve or go back to what it was. So they are "chronic." The spinal vertebrae stabilize but don't "heal" the way, say, a broken arm might. Unfortunately!

@tilou do you have osteopenia or osteoporosis?

Most of us seem to have some degenerative changes on imaging- comes with age!

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Hi Windyshores, I have osteoporosis and osteopenia at other places but I am going on 84 years old so it becomes more difficult to treat and I am taking palliatifs products after my last compression fracture which is followed by more osteopenia, I think I will only treat the pain at this stage.

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@fresian1

I am almost done with my first month of Tymlos. I started with a lower dose-5 clicks-and am now at 7 with almost no side effects: slight nausea in the first hour or so after the injection and a little fatigue. I had a cardiac ablation for afib in 2015 but have had no recurrence of symptoms since. My endocrinologist has mentioned reclast after Tymlos, which I do not want to do. I am interested in evenity snd also in the modified MRI therapy available throughout Europe.

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Endocriologist has interest in Reclast! Do what you think is good for YOU!

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@tilou

Endocriologist has interest in Reclast! Do what you think is good for YOU!

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Thank you. I will. I just want to find the best alternative I can to reclast.

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