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

I am seventy four and been fighting this for some time! I fell I in a dumpster, at 60, down the stairs a few times, too! I have been going to a specialist since I was about 36. I had a pain pump installed a few years back. (In my lower spine) it does help in that location! All my family have had bone problem. Now my bone density scores are shifting. Not for the good. My dr. Is worried about my falling. I have been doing physical therapy also.
I don’t know where I go from here! I hurt so bad and yet trying to do the things that will set me up for a win…. Do you have any suggestions that could help me on?

REPLY
@diana13

I am seventy four and been fighting this for some time! I fell I in a dumpster, at 60, down the stairs a few times, too! I have been going to a specialist since I was about 36. I had a pain pump installed a few years back. (In my lower spine) it does help in that location! All my family have had bone problem. Now my bone density scores are shifting. Not for the good. My dr. Is worried about my falling. I have been doing physical therapy also.
I don’t know where I go from here! I hurt so bad and yet trying to do the things that will set me up for a win…. Do you have any suggestions that could help me on?

Jump to this post

Greetings @diana13, and a big hearty welcome to Connect. We are a group of caring and gentle folks who open our hearts and our memories to share the experience and knowledge we have gained as patients, caregivers, and providers. In our mentor role, we cannot diagnose or prescribe. We can listen and share because we have been there.

I think we wrote a few chapters together @diana13. I am 78 and I began falling earlier I think…down mountains, off of horses, and the worst one……..stepping backward off of a platform cracking a few bones on the way down. And just for a smile, I stepped through the unsurfaced area in the attic and landed halfway in the TV room. We made a fake leg and inserted it in the ceiling. So…I have learned how to laugh at myself, and finally how to protect my body.

@diana13, how are your scores shifting? Would you please explain? Have you worked with a nutritionist to plan a diet rich in calcium and vitamin d3? Are you taking OTC supplements or medications that build bone or prevent bone loss?

Let's figure out where to start? Let us know what you are doing and I know that others will have some suggestions and advice.

What are you most concerned about? You doctor is worried about you falling. What about you?
May you be safe and protected from inner and outer harm.
Chris

REPLY

I just noticed that @heyhey has opened a new discussion about the status of her osteoporosis treatment decisions. "I've read heartbreaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless."
https://connect.mayoclinic.org/discussion/making-an-osteoporosis-treatment-decision/
And @catharberts response is quite valuable as she just went through an experience with Evenity, the newest bone-building product. Her conclusion: "You will definitely have problems if you don't take something to stop osteoporosis" There are alternatives that are "natural" and you can manage your diet and exercise to try to rebuild bones that way but it will be a much slower process. Remember that everyone is different and that more people will complain than will praise anything. Good luck to you.

Because this was not written as a reply…I will just let you know that @catharbert comments can be read in total just below the link to the introduction by @heyhey.

Please add your comments. We know that all of us have similar situations and seek to find faith in the one that is the best for us. We also need to trust our clinicians while we advocate for ourselves. Knowledge is power.

What means the most to you?…… Maintaining your lifestyle and activities as quickly as possible and for as long as possible or modifying your lifestyle to adjust to "natural" options.

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

REPLY

New technology called Trabecular Bone Score (TBS) takes a closer look at the DXA scan. By analyzing the structure of your spine bones, TBS uses the initial DXA scan to measure bone density and then applies the TBS to evaluate bone quality. Here is the link to what can be considered reputable information.
Do you have any comments for us to share?

May you be free of suffering and the causes of suffering.
Chris

@heyhey, @catharbert, @diana13, @imatine @susanjd @donniehailey @ess77 @kathleen1314 @sunnyflower

REPLY

@artscaping I am beginning this journey and am hoping to start Tymlos in January. I have heard that Medicare uses the results of your DEXA to determine if they will cover Tymlos. I have been told it MUST be followed up with one of the other pharmaceuticals that maintain bone. The primary reason I am waiting is that I am changing my Medicare D coverage as of January. On a tangent, but good to know, when I went through the different companies, etc., to evaluate the best Medicare D for the drugs I am taking I saved about $800 a year by switching. Feeling I would be going on Tymlos I included that but even without Tymlos, I would save some.

The following two articles have some good info.
http://blogs.creighton.edu/heaney/2014/07/25/the-paradox-of-osteoporosis-irreversibility-2/
https://americanbonehealth.org/medications-bone-health/dr-karpfs-response-to-bone-drugs-article/?highlight=dr+david+karpf
JK

REPLY
@contentandwell

@artscaping I am beginning this journey and am hoping to start Tymlos in January. I have heard that Medicare uses the results of your DEXA to determine if they will cover Tymlos. I have been told it MUST be followed up with one of the other pharmaceuticals that maintain bone. The primary reason I am waiting is that I am changing my Medicare D coverage as of January. On a tangent, but good to know, when I went through the different companies, etc., to evaluate the best Medicare D for the drugs I am taking I saved about $800 a year by switching. Feeling I would be going on Tymlos I included that but even without Tymlos, I would save some.

The following two articles have some good info.
http://blogs.creighton.edu/heaney/2014/07/25/the-paradox-of-osteoporosis-irreversibility-2/
https://americanbonehealth.org/medications-bone-health/dr-karpfs-response-to-bone-drugs-article/?highlight=dr+david+karpf
JK

Jump to this post

@contentandwell, Hi there……..those articles are so appreciated. Thank you. The first one sort of leads to an answer that perhaps we do not want to consider and that is to do nothing except what your lifestyle and changes to it can do for you. I want to read it again and let it sink in. I hope others can peruse these documents and let us know what they think? What did you think JK?

May you have peace and ease.
Chris

REPLY
@artscaping

New technology called Trabecular Bone Score (TBS) takes a closer look at the DXA scan. By analyzing the structure of your spine bones, TBS uses the initial DXA scan to measure bone density and then applies the TBS to evaluate bone quality. Here is the link to what can be considered reputable information.
Do you have any comments for us to share?

May you be free of suffering and the causes of suffering.
Chris

@heyhey, @catharbert, @diana13, @imatine @susanjd @donniehailey @ess77 @kathleen1314 @sunnyflower

Jump to this post

Thx so much Chris! I will ask my doctor about the TBS. I don't see the link here though. Warmest wishes, Sunnyflower

REPLY
Please sign in or register to post a reply.