Tymlos success?

Posted by bvib @bvib, Dec 14 5:34pm

Hello. I am only 47 and got diagnosed with severe osteoporosis three years ago. T score in the spine is -4.1. I started these injections seven months ago. I was wondering if anyone had any success with this being effective enough to go to osteopenia?

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I was diagnosed in 2023 with severe osteoporosis and a spine score of -5.3. After 2 years of Tymlos, my dexa scan lowered to -2.7. Side effects were minimal after the 1st injection - I injected in the evening, walked around the house for about 15 minutes to prevent back muscle soreness, then relaxed for 15 minutes to lower my slightly related heart rate. For the past 14 months I did strength/ mobility training and pilates weekly. I increased daily protein intake to about 110 grams for 1,800 calories. I am ecstatic with the results. I have decided to follow my endocrinologist recommendation and start Prolia for 2 years and then reclast.

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In 7 months, my spine went from -3.1 to -2.1. Yay! It works!

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Profile picture for mamabear77 @mamabear77

@rileyf Hello. My spinal score was -3.6...shocked, but not shocked, since I have had back pain for years, though without any fracture. I am 77, and the endocrinologist advised Tymlos, since I need to build bone, rather than just slow the loss. I had had a possible TIA, so Evenity was not an option, nor was Forteo. I took Tymlos for a month, and had an array of side effects, many of which eased or stopped over time, but some came later, and were significant enough to make me stop the drug . (Terrible fatigue and leg pains every evening, and the return of frequent headaches). Many people obviously have little or none of these, so I am not hear to say anything meant to be a generalized truth. But I do think that risk and benefit always need to be weighed, but especially if one is older. For me, to take a drug that would have me feeling like that for an indefinite time (two years??) was not something I am willing to do. I do not minimize the seriousness of my osteoporosis, and am exploring other options, and taking extra precautions. I don't know if this helps at all. I just feel strongly that each individual's overall health and stage of life need to be key factors here. It is also disturbing to me that doctors can disagree so widely on this subject. As a retired nurse, it seems that there should be more uniform guidelines by now. Wishing you success on whatever path you choose.

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@mamabear77 hi there. I recently read about a supplement called mbp (milk basic protein). It's supposed to promote bone density and the studies seem promising. Obviously, it's not going to be as effective as drugs, but it may be a good option if you can't or choose not to take medication.

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Profile picture for norahguil @norahguil

Hi,

Does anybody know the criteria for Tymlos in Ontario, Canada?

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I do not, but mine is covered. It puts me in the catastrophic category, no deductible.....for now anyway. It was the treatment recommended by my doctor. I am allowed a DEXA SCAN once every two years, but with the doctors request for annual scans to monitor progress, they are covered also. I had six breaks in three months. I'd imagine my doctor would have intervened had insurance questioned it. If this is what you mean by criteria??

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Hi,
Thanks for your reply. I need to be clear as to what conditions one needs to meet to get Tymlos. I have also heard about Jubbonti which is a new osteoporosis medication out now.

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Profile picture for robert2025 @robert2025

I was diagnosed in 2023 with severe osteoporosis and a spine score of -5.3. After 2 years of Tymlos, my dexa scan lowered to -2.7. Side effects were minimal after the 1st injection - I injected in the evening, walked around the house for about 15 minutes to prevent back muscle soreness, then relaxed for 15 minutes to lower my slightly related heart rate. For the past 14 months I did strength/ mobility training and pilates weekly. I increased daily protein intake to about 110 grams for 1,800 calories. I am ecstatic with the results. I have decided to follow my endocrinologist recommendation and start Prolia for 2 years and then reclast.

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@robert2025 why can't you stay on Tymlos? Is it because the it was only tested for a few years?

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I am only at my 6 month point with Tymlos.At my last checkup my provider discouraged getting a Dexa as she said in some cases it may show a paradoxical effect.I don"t seem to have any side effects except "belly fat" which is a price I'm willing to pay.At 69 I don't plan on any swimsuit competitions though I hope it stabilizes & goes away after my remaining 18 months.I am hopeful that the Medicare coverage continues with so many changes after the new year.The best news is that I have been able to have three oral extractions & three dental implants .I did receive Reclast twice ,last in July of 2023 & some oral surgeons would not consider me because of the osteonecrosis risk.

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