Osteoporosis: What tests confirm diagnosis and treatment options?

Posted by leeosteo @leeosteo, Jan 12, 2023

I was diagnosed with Osteopenia in 2014 which progressed to Osteoporosis in my spine in 2016 (as result of DEXA tests). I was on Alendronate for almost 5 yrs and have been on a medication holiday since 2019. My 2022 DEXA now shows progression to Osteoporosis in spine and hip. I'm meeting with my PCP next week to discuss next steps. Net, I'm really worried with disease progression and frightened with going back on Osteoporosis meds. I've read that Osteoporosis should not be diagnosed only on DEXA. What has been your experience? Are there other tests that should be considered? Are you using a PCP or other type doctor to walk you through your options?

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

@semurrey

I'm sorry to hear about your fractures! I am 58 yrs old, thin and one year into Letrozole for breast cancer which has already put me deep into osteoporois. My endocrinologist suggested Fosamax or Reclast given high risk of spine fractures but I am petrified of the side effects given I already have terrible jaw pain due to a dislocated disc and who knows if I will need a crown soon since old fillings need to be replaced. I may punt but wonder how much damage the Letrozole I need to stay on for 10 yrs will do to my density. Were your numbers really low and did you have pain with spine fractures? May I ask your age? xo

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@semurrey look into the Breast Cancer Index test which may tell you there is no further benefit from extended letrozole after 5 years. If you don't go on bone meds, my oncologist would tell you to stop at 5 years anyway.

I was already in osteoporosis when I started letrozole and lost a lot of bone density. I could not do Reclast because my doc was worried about afib at the time. I have done two years of Tymlos after cancer treatment and my density is now better than it was before letrozole. But...I fractured in the meantime, before Tymlos!

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@artscaping

Good afternoon @leeosteo, you are certainly asking the right questions. I, too, was overwhelmed by the number of medications available to help prevent fractures. My journey has been a difficult and sometimes frightening experience. One of the things I learned from my endocrinologist at Mayo Clinic was the importance of pursuing a FRAX evaluation. This is a test, a fracture risk assessment tool. You can learn more about it on this link.
http://www.frax.shef.ac.uk.
FRAX will give you the 10 year probability of fracture of the hip, and of a major osteoporetic fracture of the clinical spine, forearm, hip and shoulder.

You may want to discuss this option with your PCP. Absolutely, knowledge gives you decision making power. Do you have additional concerns at this point in your exploration of options to protect you from fractures?

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

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How did you go about getting an appt at the Mayo Clinic? Thanks.

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@ripley

How did you go about getting an appt at the Mayo Clinic? Thanks.

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Good afternoon, @ripley. How are you doing today? I thought I answered this question before. Maybe not. On the right-hand side of the home screen, there is an invitation to "Start your appointment request". I answered the questions and relayed my medical status and concerns. I received more information and a few requests. Within a couple of days, I received a call from one of the admission staff members. I responded to the requests for medical information, and the next day, I received a call to schedule an appointment in Rochester.

The date and time for the appointment were determined, and I must say that everything just went smoothly. I was really impressed with the welcoming manner of the check-in folks I was introduced to that day, They actually stopped typing during the introduction process.

Are you ready for an appointment now?
May you be safe, protected and free from inner and outer harm.
Chris

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