Connect
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
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Yes. I have cancer quite a bit on my dad's side of the family with one cousin having had breast cancer, although she beat it. Two of his sisters died of pancreatic cancer, which I understand has some connection to female cancers as well, so if I do it, I will start with the lowest possible dose. The T score from the Echolight Scan for my spine was -1.8 and it showed good fragility scores, but it is definitely my biggest area of concern. I have, for better or worse, greater mobility than many people twenty years younger than me according to my massage and assisted stretch therapists, and I feel so much better physically when I do yoga and pilates exercises like roll-ups that lengthen your spine. I have read several things though that say you shouldn't be doing those or bending forward at the waist. Then again, I watched a recent conference on osteoporosis and hip health where they said that they no longer take the stance that you absolutely shouldn't do any specific kind of exercise but rather treat it on an individual basis. It's all overwhelming. What I hope is that by April/May, I will have decided whether to go on low dose HRT or a bisphosphonate. My instincts are telling me it's too soon for bisphosphonates, but this is one reason why I'd like to get another Dexa if I can get my doctor to say it's medically necessary or pay for it myself if it's not too outrageous. Thank you so much for your input. I really appreciate it.
I think your instincts are right. If I could do it all over again, I would have gone on HRT at menopause. I experienced a huge drop in bone density at that time and HRT would have prevented it. Much more effective and easier to prevent the loss then try to restore bone, playing catch up. I ended up having to go on Forteo to build back some loss and then decided on HRT afterwards to try and maintain the gain. I was 64 at the time which is on the cusp of greater risk but I still felt it was the best option for me. HRT was vilified by the Woman's Health Initiative which is now known to have been a fairly flawed study.
There was a great article just recently in the NY Times that was thorough and explanatory.
https://www.nytimes.com/2023/02/01/magazine/menopause-hot-flashes-hormone-therapy.html
-
Like -
Helpful -
Hug
2 ReactionsWhat is an Echolight Scan? and what does it tell you?
Here's the link: https://www.echolightmedical.com/en/
Apparently, it was originally in the UK and has now come to the U.S. in limited locations so far. My understanding is that the FDA has approved the use of it. It uses ultrasound instead of X-Rays to tell you more about the quality of your bones in addition to how dense they are.