By what percentage did your T-scores improve after a round of TYMLOS?

@willowmena The REM scores are not accurate. There was a recent study done which showed REM is not an accurate tool for measuring true bone density. Do a google search to find this study. DEXA is not a perfect measuring tool, but it is good enough.

See my post:
https://connect.mayoclinic.org/discussion/tymlos-results-from-dexa-scan-after-12-months/
Please do not discontinue the tymlos. My endocrinologist said she has never seem someone who took it whose bone density did not improve. It is also very important that after 24 months of tymlos, you take a bisphosphonate to lock in the gains, otherwise they will be lost.

I know your situation is more complicated than most, but I hope you are seeing a good endocrinologist. Best wishes to you, and keep us up to date on your progress!

@roseincalifornia coincidentally I had an appointment today with my endocrinologist who did seem to be somewhat perplexed by the fact that my P1 NP marker went up but my NTX, which is similar to the CTX, but on a different scale, more than tripled and should not have gone up that dramatically. Bone resorption appears to be out pacing bone formation. She did feel it was too early for Tymlos to show an effect and when I asked her how we would ever know, she said you really don’t know whether Tymlos is working, at least in my case. I said, I guess I need to take a hard fall and if I don’t break anything, I’m OK. She smiled. She has known me for many years. She did say there were bone study centers but it would take a bit of travel to get to one . I’m in Florida, and I believe the closest that she mentioned was at Duke university. I’m afraid the science is not absolute and in cases like mine where neither hips nor spine are available for accurate analysis, I just have to keep my fingers crossed. I jokingly tell my friends I’m melting.

@willowmena You can't really compare DEXA and REMS scores.

@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.

+1.6 percent. I was disappointed but I'm about to hit my 2 year mark next month and expect better. The research doesn't support better in the second year but I wasn't injecting in my tummy. I think it will be better now that I am. My xray showed a better density. but it could be in the film. So I gotta wait for the DEXA.

@loriesco
I wondered about injecting abdomen vs flank. My doctor said it didn’t matter. It was all subcutaneous. But the Tymlos guidance is only abdomen. Some research shows better absorption in the abdomen. I’m still looking for definitive answer.

@osteopatient2026 you don’t happen to be at Ucsd do you?because that’s where I was told the The thigh was OK and every other subcutaneous area. You won’t find anything. There was absolutely no testing done on any other subcutaneous area. So you were on and I was on a fools errand. The only recommendation that can be given from the pharmaceutical company is the narrow testing done on the abdominal area that is the only thing they would stand behind. My first year of test I think should’ve been much better. My doctors were disappointed. I was disappointed after all that work on TYMLOS. I can tell you there’s that absolutely no support for any other subcutaneous area. So I just went with the recommendation. I had a fear because of the injections of the blood thinners in my abdominal area after three surgeries. This is a tiny itty-bitty needle, and I can’t even feel it piercing my skin. My biggest problem was, I had a rod stuck in the back of my neck which prevents me from seeing clearly to my abdominal area. But I just feel around point and jab at the kitchen counter count to 30 and I’m done. I do it in the evening when I’m tired already anyway and after being horribly intolerable having to titrate up at the start like the doctor said I’d become very used to it and I did. It’s no big deal for me anymore. I’m almost finished two years went by really quick. I am 69 years old and I want to make sure that I stay strong going forward and independent because I am by myself.

@osteopatient2026 you don’t happen to be at Ucsd do you?because that’s where I was told the The thigh was OK and every other subcutaneous area. You won’t find anything. There was absolutely no testing done on any other subcutaneous area. So you were on and I was on a fools errand. The only recommendation that can be given from the pharmaceutical company is the narrow testing done on the abdominal area that is the only thing they would stand behind. My first year of test I think should’ve been much better. My doctors were disappointed. I was disappointed after all that work on TYMLOS. I can tell you there’s that absolutely no support for any other subcutaneous area. So I just went with the recommendation. I had a fear because of the injections of the blood thinners in my abdominal area after three surgeries. This is a tiny itty-bitty needle, and I can’t even feel it piercing my skin. My biggest problem was, I had a rod stuck in the back of my neck which prevents me from seeing clearly to my abdominal area. But I just feel around point and jab at the kitchen counter count to 30 and I’m done. I do it in the evening when I’m tired already anyway and after being horribly intolerable having to titrate up at the start like the doctor said I’d become very used to it and I did. It’s no big deal for me anymore. I’m almost finished two years went by really quick. I am 69 years old and I want to make sure that I stay strong going forward and independent because I am by myself.