Osteoporosis bone density test. Did you get yours? How did you do?

After 18 months on Tymlos, my bone density tests are in. For my age, 78, my scores are in the range and the hips have returned to osteopenia. I held my own but did not achieve statistically significant improvement. Now I must make a decision about my future:

-Stay on Tymlos for 6 more months until I have completed the two-year cycle. As soon as the Tymlos is stopped, the disintegration of my newly built-up bone will begin.

-Begin Prolia right now, which will protect my new bone from being reabsorbed. There is a 10% chance I will have a side effect called osteonecrosis, responsible for jaw pain, along with joint pain. These were the same side effects I had with Boniva, a bisphosphonate. A change was made to Tymlos that performed reasonably well with no side effects.

-Stay on Tymlos for 6 more months and then switch to Prolia. My worry... 2 injections a year... a long half-life....and I haven't seen any solutions if there are side effects.

-Discontinue all medication and adjust my diet as well as supplements to get enough D3 and calcium plus Increase my exercise routine. My small fiber neuropathy.....now progressing as I knew it would, makes exercise a challenge.

What are you doing to mitigate the effects on your bones from osteoporosis? How is that choice working for you? What concerns have you had about your future under your chosen strategy?

Stay in touch on Connect. Share your experiences so we all can learn from each other. You have a lifetime invitation. I am looking forward to hearing from you.

May you be safe and protected from inner and outer harm.
Chris

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

@dulu

I was diagnosed with osteoporosis 5 years ago. -3.2 in my spine, -1.7 in the right hip and -1 in the left hip. I had refused all medication but started AlgaeCal and strontium. After 2 years, Dexa scan showed -2.7 in the spine and improvements in the hips. I have since switched to Life Improvements bone restore W/ d3 and k2. Hoping for continued improvements. Next scan with be in a couple of months.

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Isn’t the company Life Extensions?

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@barbaradh

Windyshores, I think you took her comment too literally.

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@barbaradh I don't think so. I feel, from my experience of fractures, that it is important to update info. Tymlos and Forteo do not cause brittle bones. They grow new bone. The other meds do have that risk over time.

The word "shatter" is pretty dramatic and is actually a physically different matter from "fracture." My son's knee "shattered" into many pieces. My vertebrae collapsed (compression fracture) and my friend's arm "broke" and healed. "Shattered" bones are certainly hard to heal.

I am not pro or against meds- it depends on the situation. But accuracy in info is important.

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-3.5 was the score. Severe osteoporosis.

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I’m also 78. Last year had a fall snd five months later resulted in three burst compression fractures. Prior to that my last DEXA in March 2022 showed -2.5 in spine and less in hips. That number was an increase to the hood in spine by .7 percent. I would never go near any of the drugs especially Prolia after my doctor warned that getting off at any point your bones will begin to crumble. I’m doing the Stronger Bone Program by Kevin Ellis online snd it’s been invaluable. Helped immensely eliminate by my fears of another fracture. I have taken BoneUp by Jarrow for many years after a chemist in Austin lectured on this topic of bone loss and said that mycrystalline hydroxyapatite was the only form of calcium that could actually build bone!! BoneUp is fantastic and uses several of the newest linked vitamins to building stronger bones including Strontium. I’m watching protein getting at least 90 grams a day and walking over 10 miles a month on treadmill at 1.8. Was released by my orthopedic surgeon end of January snd have been doing fine. No more fractures. Occasionally lower back discomfort I think from my Spondylolethesis Grade 1 at L4/L5. Had it over 20 years.

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@whilloba

I’m also 78. Last year had a fall snd five months later resulted in three burst compression fractures. Prior to that my last DEXA in March 2022 showed -2.5 in spine and less in hips. That number was an increase to the hood in spine by .7 percent. I would never go near any of the drugs especially Prolia after my doctor warned that getting off at any point your bones will begin to crumble. I’m doing the Stronger Bone Program by Kevin Ellis online snd it’s been invaluable. Helped immensely eliminate by my fears of another fracture. I have taken BoneUp by Jarrow for many years after a chemist in Austin lectured on this topic of bone loss and said that mycrystalline hydroxyapatite was the only form of calcium that could actually build bone!! BoneUp is fantastic and uses several of the newest linked vitamins to building stronger bones including Strontium. I’m watching protein getting at least 90 grams a day and walking over 10 miles a month on treadmill at 1.8. Was released by my orthopedic surgeon end of January snd have been doing fine. No more fractures. Occasionally lower back discomfort I think from my Spondylolethesis Grade 1 at L4/L5. Had it over 20 years.

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@whilloba can you please clarify whether your spine or hip was sores, and whethter you got worse or better? The negative numbers can be confusing.

"Prior to that my last DEXA in March 2022 showed -2.5 in spine and less in hips." (This would mean your hips were worse, is that what you intended?)

"That number was an increase to the hood in spine by .7 percent" (This would mean your spine got better if it went from -3.2 to -2.5 but I don't think that was what you intended. Instead your spine DECREASED by -.7, is that right? From -1.8 to -2.5????

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No. All I was saying was that my spine got better by 7 percent per the doctor interpreting it for me. My hip has never been as bad as my spine.

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@barbaradh

Windyshores, I think you took her comment too literally.

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Shatter is a term used for bones that break on impact. The MR images will show particles of bone arrayed from the break. Those particles don't make it back to the site of fracture. They can be absorbed by the body eventually, but can cause problems if they lodge in nerves.
Osteoporosis fractures in the vertebra are compaction fractures that never regain their original shape and heal compacted.
I also think it important to understand anabolic osteoporosis medications don't cause brittle bone. Instead they enhance the flexibility of bone through remodeling.

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I had my first REMS Echolight scan yesterday and was thrilled to learn my bones are very strong and I’m not at risk for fracture. I was being led by rheumatologists and DOs to do Prolia or Reclast. Having had 2 injections of Prolia and experiencing hair shedding in clumps, I wanted to explore other options. Of course, I was totally stressed hearing I could have spontaneous fractures of the spine. Well, I do not need to put any of this poison in my system. I truly cannot understand why REMS Echolight (uses Ultrasound; no radiation) is not universally used here in the U.S.! Please check to see if there is a REMS in your state. Of course, diet, weights and supplements are critical to maintain my strong bones!

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