Is Tymlos appropriate if no fractures?

Posted by wondering1 @wondering1, Feb 23 6:21am

My endocrinologist has prescribed Tymlos for me. But I’ve never had a fracture. Is this appropriate timing for Tymlos? Would it be better to save it for the future?

I’m 61, T score at spine is -3.3. TBS is normal. I’ve already done 5 years on bisphosphates (but stopped 4 years ago).

Has anyone else been prescribed Tymlos before getting a fracture?

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@wondering1
Yes, I was prescribed Tymlos without a history of fractures due to osteoporosis. I had a fractured collar bone in my forties due to a nasty bicycle accident unrelated to osteoporosis. The thinking from my doctor was to build more bone before using Prolia or Reclast. Tymlos can be very effective and build bone quickly.

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The doctor is going to look at your T-score whether you've ever had a fracture or not. At -3.3, I would definitely want to take Tymlos. Ten months on Tymlos improved my score from -3.0 to -2.0. That's a big difference for my future risk of fracture. I would not feel comfortable being in the -3 range at all.

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@njx58

The doctor is going to look at your T-score whether you've ever had a fracture or not. At -3.3, I would definitely want to take Tymlos. Ten months on Tymlos improved my score from -3.0 to -2.0. That's a big difference for my future risk of fracture. I would not feel comfortable being in the -3 range at all.

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@njx58, wow!! That’s a great improvement. Thanks for your reply.

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@njx58

The doctor is going to look at your T-score whether you've ever had a fracture or not. At -3.3, I would definitely want to take Tymlos. Ten months on Tymlos improved my score from -3.0 to -2.0. That's a big difference for my future risk of fracture. I would not feel comfortable being in the -3 range at all.

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How long will you be on Tymlos? What time of day did you take it? And did you experience any side effects? Thanks so much.

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@wondering1
I was blessed to have access to Tymlos for five months, having had no fractures but a spinal dexa of -3.6. When our insurance changed (employer), the new company declined Tymlos. BUT, I just received word that it has now approved me for Forteo upon my doctors advocating….

I loved Tymlos and really had no side effects except some heart racing and light headedness early on (later dissipated). This was not pronounced enough to really bother me. I chose to take it before bed. Drinking zero sugar Gatorade before injecting seemed to help.

I have been off med for over a month. Will see what Forteo is like!

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@susanjohnston

How long will you be on Tymlos? What time of day did you take it? And did you experience any side effects? Thanks so much.

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Since I had such a good response to Tymlos, my doctor wants to keep me on it for the full two years. We will do another round of blood tests at 18 months to see if we should still go for 24 months.

I take it in the morning, but I don't have any side effects apart from a very mild lightheadedness; it's not even enough to prevent me from driving, and it fades within 30 minutes.

Some people here take it at night because they experience stronger side effects and therefore find it easier to deal with them when they are asleep.

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I so appreciate your reply. Thank you. What kind of test did you do to determine that you had such a good response initially?

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I started Tymlos in January of 25. No difficulty so far.
I wish I could go back and start before my L3 fracture happened in December.
I am still healing from the most painful experience of my life, wondering if I will ever be pain free from this.
You are young, my age at 65 was a hurdle for me in thinking about and accepting medication. All the years ahead of us to wonder about regarding meds.
Still, the pain of the fracture is far worse. I will take the unknown as it comes and I am thankful everyday for any medication to support me. This represents a complete turnaround in my thinking.
The support here was more help to me than anything else I have found.

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@mundy

I started Tymlos in January of 25. No difficulty so far.
I wish I could go back and start before my L3 fracture happened in December.
I am still healing from the most painful experience of my life, wondering if I will ever be pain free from this.
You are young, my age at 65 was a hurdle for me in thinking about and accepting medication. All the years ahead of us to wonder about regarding meds.
Still, the pain of the fracture is far worse. I will take the unknown as it comes and I am thankful everyday for any medication to support me. This represents a complete turnaround in my thinking.
The support here was more help to me than anything else I have found.

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@mundy So sorry to hear about your fracture. Hope it is healing. Thanks for sharing your experience. I’m leaning towards starting the Tymlos.

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@susanjohnston

I so appreciate your reply. Thank you. What kind of test did you do to determine that you had such a good response initially?

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DEXA scans. I had an initial one after a fracture that showed a -3.3 for the spine. It took me a while to line up an endocrinologist and get the Tymlos prescription set up, so that didn't happen for another five months. In the meantime, I had been taking calcium/vitamins d3 & K2.

When I finally saw an endocrinologist, I had a second DEXA that showed -3.0. I don't know if that minor improvement was due to taking supplements, since the initial DEXA was done at a different facility & machine. Results can vary from machine to machine and even technician to technician.

After 10 months on Tymlos, I went back to the doctor for another DEXA (same machine this time), and that showed a -2.0. I also had a REMS scan around the same time that showed a similar number, so I am confident that it's valid.

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