Connect
Younger than usual with severe osteoporosis
Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.
Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.
In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."
I am hopeful, while being realistic. I'm looking to connect with others who understand.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
Thank you so much!
-
Like -
Helpful -
Hug
2 Reactions@flowers62 You're very welcome! Best wishes to you moving forward.
-
Like -
Helpful -
Hug
1 ReactionThanks for sharing your Tscores before 2023. Now I can see that although there wasn’t much change between 2023 to 2025, you were in dangerous numbers before. So Evenity is the medication that gave you a better TScore. Good to hear! Did you have any bad side effects with either Evenity or Tymlos?
@shelldct1 I had no discernible side effects from Evenity. I had some fatigue and joint pain while on Tymlos which gradually increased over the duration to the point where it was negatively impacting my quality of life. However, I also have an autoimmune disorder that flares up, so that may have been a major contributing factor. Those symptoms quickly faded when I came off it.
-
Like -
Helpful -
Hug
3 Reactions@sisby Hello Sisby,
I'm in a situation similar to yours and I'm wondering if you ended up taking Tymolos or Forteo and if they worked for you? I also have a low TBS score and I'm scared. Wishing you the best.
Hi soggybones,
Please don't be scared. Use your energy to focus on what you can do to improve your bone density. You're here, and it's a great resource. This group gave me resources that helped me understand OP, treatment options, and helpful lifestyle changes. I couldn't be more grateful for the guidance I received here.
Ultimately, I ended up doing Evenity then a Reclast infusion. I no longer have severe osteoporsis. My bone density is now in the osteopenia range.
I wish you the best on your OP journey.
hopefullibrarian
-
Like -
Helpful -
Hug
4 ReactionsYour story sounds a lot like mine - so shocking to get this diagnosis at a relatively young age. Here is a link to my recent post re: my results after 10 months on Evenity. I still don't know what is planned next but I am hopeful whatever it is will lock in my gains. https://connect.mayoclinic.org/discussion/positive-evenity-results-after-10-months-of-treatment/
Good luck on this journey, as others have mentioned, this forum is a life saver.
-
Like -
Helpful -
Hug
2 ReactionsI was just diagnosed with severe osteoporosis at 56. I had an L3 compression fracture this summer and got a dexa scan. My back is -4.1 and my hips are -3.9. I also have always eaten right, exercised, but after my husband died I was probably underweight. I also went on antidepressants at that time which also depletes your bones. I still wasn't expecting such bad scores. I don't see and endocrinologist until January 6, but I'm really hoping to get on something that builds bone rather than just preserves it. I'm pretty scared now that winter has started so I bought ice cleats!
-
Like -
Helpful -
Hug
5 Reactions@hopefullibrarian Thank you for your kind words. I'm happy to hear you had success in improving your bone density.
-
Like -
Helpful -
Hug
1 Reaction@artscaping
Good day,
I have been reading others posts, and see similar things with my medical issues. I suffered 5 compressed disks at once, with a bulging disks effect. I also suffered multiple rib fractures due to the nerves being pinched and causing my muscles to crush my own ribcage.
This started in April- peaked in early June. I was offered and excepted Evenity injections. I should have mentioned L8-L12 were the disk compressed m, I also suffer L1-L5 Osteoporosis before the compressed disks. I think I was healing from the rib pain and didn't notice much impact from Evenity.
I do want everyone to know, I was also given a prescription of Topiramate for the last 8 years. After digging I read 'What causes Osteoporosis? " One cause of Osteoporosis is Epilepsy drugs. On a drug interactions page for Topiramate clearly says Topiramate will cause Osteoporosis.
Possibly this was my issue for developing extreme Osteoporosis, as diagnosed by my doctor. My condition was not from a fall or accident. I just woke up one day with a pain in the center of my back that increased to finally stopping at 5 disks.
The Topiramate was for Neuropathy pain from Stenosis in my neck.
I am trying hot yoga and feel severe pain with part/ most of the moves. The instructor feels I will overcome the pain. I have always been active and now I can't sleep Sue to a pain in my ribcage lasting over 6 months.
-
Like -
Helpful -
Hug
3 Reactions