Treating Osteoporosis: What works for you?

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

I had a difficult reaction to Forteo and my doc didn't want me on Prolia or Reclast (long story) so I didn't meds for quite a few years. All I can tell you is that you never know when you will fracture, and when I did, it was three vertebrae at once. Added to 3 traumatic fractures a long time ago, I now have 6. The pain of this is very motivating, believe me. I am finding Tymlos much easier than Forteo, and started at a low dose then moved up slowly. Evenity is another possibility but newer. Side effects from Tymlos, if they occur, tend to fade. I think a -3.2 could be the start of more fragility, but your MD would know.

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

Hi, @barbiep Welcome to Connect.

I have been on Tymlos since March. Initially I had some slight light-headedness the following morning (I take it before bed at night) but that has passed. The only other side-effect that I can definitely say is from Tymlos is what people refer to as "puffy belly" which is actually fluid retention. It's a nuisance but I can live with that.

Some people start out with a lower dose but my endocrinologist said to start out with the full dose. Then if you do have a problem you can go to a lower dose and build up.

The only downside I see to Tymlos is the cost. I am on Medicare and so there is no assistance. Many people who are not on Medicare are able to get it at a greatly reduced cost and some even get it free!

This is the first drug I have been on for osteoporosis. I had a minor hip fracture in July 2019 which led to a DEXA. I had not had a DEXA for five years and my previous one showed osteopenia so I believe I should have. If you have a fracture that can make a difference in whether these expensive injectables are approved by your insurance or Medicare, even without having had another drug first.
JK

Hi JK!

Thanks for your comments! I am still trying to get in to see the endocrinologist my GYN referred me to, but have been wondering about all the folks who mention taking a reduced dose to start. Good to get your docs’ perspective as well!

I’m set to start Medicare in Jan. so will be looking for best drug plan possible. I also get very sad when I think I wouldn’t be at a -3.2 spine if my doc didn’t wait for 9 years for a repeat DEXA following my -2.1 test. She says now she was “following guidelines”, waiting till I was 65…

I hope you continue to do well with Tymlos!! If given the option I think that will be my choice at this point.

Take care!

@barbiep I was in pretty much the same position since I had osteopenia in January 2014 but never had another DEXA unit I fractured in 2019 and I suggested it. Plus, I was on prednisone which is a known problem for bones.

I confronted the doctor and he gave three flimsy excuses. I really had a good rapport with him but I just cannot risk my health if he lets things fall through the cracks like that so I have since changed PCPs. I actually miss him!
JK