Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

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

@hello1234

Hi @artscaping ! Unfortunately I don't know the answer to your questions either. I am hoping @windyshores may know 🙂 I have the same questions. My local endocrinologist was not very clear on all of the options. He recommended Prolia because I didn't have a fracture yet. I am not totally confident that a -3.4 score should be treated with Prolia instead of something like Forteo.

Jump to this post

It's all about insurance. They want you to try meds like Prolia or biphosphanates before Tymlos and Forteo. But it is much better to do Tymlos or Forteo first, at least with certain DEXA scores.

REPLY

My score is -3.4 as well
I am trying to get the cost of Evenity down so it's affordable and then after the year is up provided that I can tolerate it I think I will try reclast which is once a year. Can anybody share their experiences on reclast or Evenity for that matter?

REPLY
@hello1234

Hi @dagmarswift 🙂 Thank you for joining in! What is your current T score and how are you treating it? Did your score go down after stopping Prolia or did it remain the same? (I need to do something with my score -3.4).

Jump to this post

My score did not change that much . Similar to your score . It good but not terrible. Once off Prolia …bone begins to ‘go away’. It’s not ‘quality’ bone that was grown . It kind of crumbles away so to speak once off it.
If I knew that if I wanted to stop and ‘really’ can’t without the real possibility of multiple spinal fractures I never would have started it. There is a lot to read learn and study about Prolia … I should have not just listened to my doctor …. But then again a lot of doctors don’t know . I have researched and armed myself with a lot of information.
Just wish I’d never gotten Into it … but am moving forward.

REPLY
@dagmarswift

My score did not change that much . Similar to your score . It good but not terrible. Once off Prolia …bone begins to ‘go away’. It’s not ‘quality’ bone that was grown . It kind of crumbles away so to speak once off it.
If I knew that if I wanted to stop and ‘really’ can’t without the real possibility of multiple spinal fractures I never would have started it. There is a lot to read learn and study about Prolia … I should have not just listened to my doctor …. But then again a lot of doctors don’t know . I have researched and armed myself with a lot of information.
Just wish I’d never gotten Into it … but am moving forward.

Jump to this post

@dagmarswift are you thinking of trying Forteo since Prolia didn't do much? Or what is your next step? Were you on Prolia for a couple years? Sorry for all the questions but I think you have great experience with this! Thank you so much for all the info!!! 🙂

REPLY
@hello1234

@dagmarswift are you thinking of trying Forteo since Prolia didn't do much? Or what is your next step? Were you on Prolia for a couple years? Sorry for all the questions but I think you have great experience with this! Thank you so much for all the info!!! 🙂

Jump to this post

I had only one shot! I started developing some side effects and decided to research . It’s a most controversial drug and the fact that once you start , it’s dangerous to ever stop! As I said that if I had known that from the beginning I NEVER would have taken it . So the only thing you can do to protect yourself coming off of Prolia is take a relay drug and the only relay drugs are bisphosphonates. ( I have a hiatal hernia and some reflux so that’s not helping me. ) I would stay on the bisphosphonates for x amount of time. However if I have a bad reaction I can stop immediately without the awful ramifications that Prolia can give you.

REPLY
@hello1234

Hi @artscaping ! Unfortunately I don't know the answer to your questions either. I am hoping @windyshores may know 🙂 I have the same questions. My local endocrinologist was not very clear on all of the options. He recommended Prolia because I didn't have a fracture yet. I am not totally confident that a -3.4 score should be treated with Prolia instead of something like Forteo.

Jump to this post

@hello1234, @windyshores, I now have the right words. Prolia prevents bone destroying elements from attacking the new bone you have built with one of the bone-building options, Forteo, Thymlos, or Evenity. It does not build bone. Hope that helps.

REPLY
@dagmarswift

I had only one shot! I started developing some side effects and decided to research . It’s a most controversial drug and the fact that once you start , it’s dangerous to ever stop! As I said that if I had known that from the beginning I NEVER would have taken it . So the only thing you can do to protect yourself coming off of Prolia is take a relay drug and the only relay drugs are bisphosphonates. ( I have a hiatal hernia and some reflux so that’s not helping me. ) I would stay on the bisphosphonates for x amount of time. However if I have a bad reaction I can stop immediately without the awful ramifications that Prolia can give you.

Jump to this post

Thank you @dagmarswift for all this information regarding Prolia! I really appreciate your heads up and advice. I am definitely going to do some additional research before proceeding! Have a nice evening and love to you.

REPLY
@hello1234

@artscaping ...one more question. What is your T score?

Jump to this post

@hello1234, I have metal boxes in my cervical spine to hold my neck together and cannot have a scan of the spine. It may be possible to interpret a reasonable T score especially if you have had vertebrae fractures. Another imagining system was used to determine if I had any fractures in my spine. I have none.

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

REPLY
@dagmarswift

I had only one shot! I started developing some side effects and decided to research . It’s a most controversial drug and the fact that once you start , it’s dangerous to ever stop! As I said that if I had known that from the beginning I NEVER would have taken it . So the only thing you can do to protect yourself coming off of Prolia is take a relay drug and the only relay drugs are bisphosphonates. ( I have a hiatal hernia and some reflux so that’s not helping me. ) I would stay on the bisphosphonates for x amount of time. However if I have a bad reaction I can stop immediately without the awful ramifications that Prolia can give you.

Jump to this post

Thank you @dagmarswift for the contribution of your experience with Prolia. You are correct about the implementation of a relay drug. I think I have to be on Prolia regardless as I am highly sensitive to any of the bisphosphonates and had various SE. Tymlos was brought in and that worked well without any side effects.
Chris

REPLY
@dagmarswift

My score did not change that much . Similar to your score . It good but not terrible. Once off Prolia …bone begins to ‘go away’. It’s not ‘quality’ bone that was grown . It kind of crumbles away so to speak once off it.
If I knew that if I wanted to stop and ‘really’ can’t without the real possibility of multiple spinal fractures I never would have started it. There is a lot to read learn and study about Prolia … I should have not just listened to my doctor …. But then again a lot of doctors don’t know . I have researched and armed myself with a lot of information.
Just wish I’d never gotten Into it … but am moving forward.

Jump to this post

Hi there again #dagmarswift. Would you please share with us the reference about the "non-quality bone" that according to the way I read your post is grown with the help of Prolia? I only know Prolia as a medication that can prevent the wearing down of bone not the building of bone. I, too, respect your research efforts.
Thank you.
Chris

REPLY
Please sign in or register to post a reply.