Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

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

@georgette12

I started tymlos 6 weeks ago. I also have top of the chart bone density issues. I'm 75. I pay 8.60 month thru Medicare

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is this paid by your part D insurance and what is your drug coverage if so,

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@katgarrett

is this paid by your part D insurance and what is your drug coverage if so,

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If you are income eligible, the company has a patient assistance program. Call Together with Tymlos. The application itself is on the Radius website but Together with Tymlos personal reps will help.

I think bones often hurt while growing as in "growing pains."

I had fewer side effects when I switched to mornings. After a few months, no side effects.

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@curlylocks - I used Tymlos for 2 years. The only side effect I really had was dizziness, but not all the time. I gained bone density, so it worked for me.

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Has anyone had side effects that cleared up, and if so, about how long did it take for the side effects to subside? I have been on Tymlos for 3 weeks now and get headaches and a fast heart rate very shortly after each dose.

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I have been using Tymlos for 10 weeks. Initially, I experienced rapid heart rate immediately after the injection. Generally, my BP (SYS 10+ points) and resting and active pulse (approx. 10 points) went up. I have started low dose meds for both which seems to help.

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Has anyone experienced bloating with Tymlos injections?

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@kinglor

Has anyone experienced bloating with Tymlos injections?

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My tummy bloated at first but not as much now. I believe this is common. Of course in my case, fractures also cause tummy bloating so in the end Tymlos may help with that!

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@kinglor

Has anyone experienced bloating with Tymlos injections?

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Hi @kinglor. I moved your questin about Tymlos to this existing discussion:
- Has anyone been using Tymlos?: https://connect.mayoclinic.org/discussion/tymlos/

I did this so you can read previous posts and connect with other members like @windyshores @rajmayo22 @ssapp1 @katgarrett and many others.

When did you start Tymlos?

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I have read all the posts, going back to 2019 and thought I'd write my experience. Diagnosed at age 50 with severe osteoporosis (T-score of -3 something); I am now 72. I had a complete hysterectomy at age 35 and am convinced that is what started all this. Did not want to take medication, so tried diet and lifestyle changes, but looking back there was not enough info out there in 2000. Slipped on the ice in Feb. 2021 and fractured a thoracic vertebra. Found out I had other vertebral fractures. I did not have pain and was not aware I had been fracturing; they can be silent. My T-score was -4.5 in 2021. I embarked on serious lifestyle and diet changes and this year my T-score was -4.7, so no improvement. I found a chiropractor in Massachusetts that had severe osteoporosis in one hip at age 45 and plunged into the study of bone-building and is quite an expert now. I flew from Texas to MA for a consultation and the first thing he said to me was I had no choice but to go on medication. He recommended Tymlos, because I had been on Forteo in the early 2000's, but there was only a little improvement in bone density, plus no one told me I'd have to go on another drug when the Forteo was done, so I lost the bone within two years. The bisphosphonates only give 2-3% improvement, but with Tymlos you can see 8-9%; that is why he recommended it for me. Tymlos can affect the forearm, so I had another bone density test last month (different facility, because the other did not do forearm testing) and the overall T-score was -5.1. Yikes! I'm hoping the disparity from earlier this year is because of the different machine. I pick up the Tymlos next week and will start on it immediately. After the 18 months or so I'll take one of the other drugs--can't remember the name right now. Hoping to see vast improvement as I continue working on the nutritional side of this.

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@kathleenintexas

I have read all the posts, going back to 2019 and thought I'd write my experience. Diagnosed at age 50 with severe osteoporosis (T-score of -3 something); I am now 72. I had a complete hysterectomy at age 35 and am convinced that is what started all this. Did not want to take medication, so tried diet and lifestyle changes, but looking back there was not enough info out there in 2000. Slipped on the ice in Feb. 2021 and fractured a thoracic vertebra. Found out I had other vertebral fractures. I did not have pain and was not aware I had been fracturing; they can be silent. My T-score was -4.5 in 2021. I embarked on serious lifestyle and diet changes and this year my T-score was -4.7, so no improvement. I found a chiropractor in Massachusetts that had severe osteoporosis in one hip at age 45 and plunged into the study of bone-building and is quite an expert now. I flew from Texas to MA for a consultation and the first thing he said to me was I had no choice but to go on medication. He recommended Tymlos, because I had been on Forteo in the early 2000's, but there was only a little improvement in bone density, plus no one told me I'd have to go on another drug when the Forteo was done, so I lost the bone within two years. The bisphosphonates only give 2-3% improvement, but with Tymlos you can see 8-9%; that is why he recommended it for me. Tymlos can affect the forearm, so I had another bone density test last month (different facility, because the other did not do forearm testing) and the overall T-score was -5.1. Yikes! I'm hoping the disparity from earlier this year is because of the different machine. I pick up the Tymlos next week and will start on it immediately. After the 18 months or so I'll take one of the other drugs--can't remember the name right now. Hoping to see vast improvement as I continue working on the nutritional side of this.

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Good evening @kathleenintexas. Welcome to Connect. Thank you for sharing so much of your bone health history in your first post. What a shame that you lost the positive bone-building from your experience with Forteo. I do note that you realize some of the test facilities use different scanning equipment. It might be wise to start a new scan series to make sure you have apples to apples.

Tymlos was my choice for two years and I had no side effects. The injections are simple and the refrigeration is not a problem. Unfortunately, I was placed on Tymlos while my scan scores indicated only osteopenia, not osteoporosis. Evidently, the endocrinologist was anxious to "sign me up". So there was no significant change in two years.

The problem for me came after Tymlos and I am happy to share that disaster with you as a warning when you are ready. I am good to go now at the "young" age of 80 and "hope" is alive again.

What are you most concerned about as you begin Tymlos?

May you be safe, protected, and free of inner and outer harm.
Chris

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