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Profile picture for roseincalifornia @roseincalifornia

@willowmena I know when I got my REM scores after 12 months on Tymlos I was very very upset because it showed a loss in bone. I even considered stopping the Tymlos. Fortunately, I waited for my DEXA results which showed a 10%+ increase in my spine. I understand you have an issue where a dexa scan may not be possible. I am just asking u to be very skeptical of the REM scores. You have a great P1NP score which shows there is a lot of activity in your bones. I am not a doctor but from talking to one, and reading a lot of other people's experiences with Tymlos, it is extremely likely that your bone density is increasing, not decreasing. I hope you continue looking for a bone specialist or endocrinologist who treats bone disorders. My endocrinologist moved so I am looking for another one, and just had an appointment with a well known endocrinologist (bone specialist) in LA. She was terrible - abrupt and dismissive. Now I have to look for another one, so I know it is a real headache to find a good doctor, but please don't give up. A lot of them have long waitlists - new patients have to wait 6-12 months - but if u call them every week you might be able to get in on a cancellation. I really wish u the best, and please keep us all updated on your progress. Take care.

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Replies to "@willowmena I know when I got my REM scores after 12 months on Tymlos I was..."

@roseincalifornia I am beginning to agree with you concerning the REM technology. I had initially read that it was utilized in Europe and reliable, and yet I’m hearing negatives here in the states. In fact, the technician who administered the scan told me that he had never seen an improvement from any of the medication’s administered to people undergoing scans. That just flies in the face of reality and statistics. And when I saw my endocrinologist earlier this week, she emphasized that it really was too early. I so wish that I could get more definitive results from DEXA because I am looking at some spine surgery for some of the damage in my cervical and without adequate bone health the surgery is not an option. I just won’t be able to hold onto the hardware. The next DEXA will take place in January at a different facility. Last year‘s test was very scanty on information and a total disappointment as to the software. I will not repeat at that location. Even so, I have low expectations of improvement in my 3.2 radius forearm because that is an area that is slow to improve and unlikely to show much of a meaningful result. I have to take heart from the fact that I have not experienced any compression fractures as yet, but I have lost height. I’ve been using Tymlos off label, which was a slightly lower dose of 70 mcg because of the side effects, even after 10 months. I recently bumped up to 80 mcg and the increased side effects were notable. Significant bone pain during the night so I’ve had to cut back again to 70 mcg. Even though the bone marker improvement is encouraging, my Endo questions the large jump in bone resorption figures. We are repeating that test. As always, hoping for the best.